Six years ago today I received the dreaded purple leg cast. The hope was that my ligaments would heal up tightly after a severe knee cap subluxation a few weeks earlier. It was a custom cast that went from my ankle to my hip and was the only kind of brace that would stay put on my fat, upside down champagne bottle legs. It was uncomfortable, expensive, and unsightly. And, it was the worst thing we could have done for my hypermobile body.
That subluxation was one of many missed opportunities to get diagnosed with Ehlers Danlos Syndrome. The image of that purple cast always makes me wonder about how my life would have been different had my EDS been caught earlier.
At the time, I told the orthopedist it was the third such subluxation in that knee (in fact I’ve had many more that, because I didn’t know about my condition, I didn’t understand that they were, in fact, subluxations). Serial subluxations are in the diagnostic criteria for EDS. As a surgeon he was thinking about surgery, wondering if my ligaments needed to be surgically “tightened” but, he said, there are no surgeons who would operate on someone my size. He noted three bone deformities in the knee that make me prone to subluxation. I’ve since learned that all three are associated with EDS. But he didn’t seem to know that. So, he prescribed the cast, immobilization for 5 weeks, and physical therapy. Of course, now I know the surgery likely would have failed due to my EDS, not my weight.
Still, immobilization for an EDSer is a terrible idea. (Actually, it turns out to be a terrible idea for anyone as it causes permanent damage to the joint capsule.) EDSers are prone to muscle wasting (atrophy). After immobilization, my muscles locked up and I couldn’t bend my knee at all. On top of that, I developed adhesions in the muscles that took months of excruciating massage to work out. And on top of that, I experienced atrophy that took years to recover from. My glutes on that side are still smaller than the other side.
When I returned to the orthopedist, he seemed shocked I had followed through with PT, as though he expected that a fat person could never have had the discipline to actually do physical therapy. He urged me to take extra care of the knee, and cautioned that in people who have subluxed as many times as I have, he sees daily subluxations as a lived reality. What this really means is that he has seen other EDSers he didn’t recognize as EDSers. Sigh.
The damage to that knee is extensive. Some of it comes from EDS (I can manually move that knee cap about an inch to the right), but some of it comes from the three immobilizations I went through as treatment. Though I suppose it is a good thing, that knee does not hyperextend as much as the other because of the damage to the joint. It sounds horrendous when I bend it. I have come to accept that it will never be right and I will probably never be a candidate for knee replacement—not because of my weight, but because my ligaments are like over-stretched rubber bands. The raw materials are no good. It is a question of making do with it as it is.
On the one hand, I feel sympathy for doctors who just don’t know what they don’t know. As a professor, I know that it is difficult to stay on top of all the latest research while also juggling direct service. On the other hand, it is frustrating that the signs should have been recognized because they were so “textbook“ as to be glaringly obvious. Actually, I had another near miss with diagnosis in 2004, 10 years before the purple cast. After developing persistent pain in my foot I saw a wonderful podiatrist who took me very seriously. He sent me for extensive testing when the problem couldn’t be seen on an X-ray. A bone scan showed signs of blood pooling (EDS symptom!) in my feet, and what the radiologist described as “signs of connective tissue disease.” The podiatrist had me tested for autoimmune CTDs, like rheumatoid arthritis and Lupus, apparently not aware of the non-autoimmune CTDs. To be honest, it scared the shit out of me how seriously he took it. When those tests came back negative, he sent me for an MRI that showed a cartilage tear. He thought it was strange but said it would heal and sent me on my way. Though a cartilage tear isn’t exactly textbook for EDS, it is absolutely a sign that my connective tissue is weak. In combination with the bone scan results this was a big flashing red sign. The doc saw it, but didn’t know what to make of it. What if that doctor had known just a little bit more? He was such a good doctor!
But I could go back further, what if EDS had been considered after my second severe subluxation in 1993? At that time, I was quite hypermobile and I also had serious immune system challenges. I certainly met the old Villefranche criteria, but those didn’t even come about until 1997, if I have my history right. Maybe it was too early to expect the average doctor to consider hypermobile EDS way back then.
I try not to spend much time wondering about what could have been. It is what it is. But days like today cause me to reflect on the impact of delayed diagnosis and the role fatphobia might have played in it. If I had presented as the stereotypical tall, thin EDSer would these doctors have considered EDS as a possible diagnosis? Had my EDS been diagnosed six years ago, or 16 years ago, would I have been able to avoid the horrendous cascade of worsening symptoms that started in 2016? Had I started joint stabilization PT in my 20s or 30s, rather than at 40, would my progress have been faster? Would I be in less pain or have better mobility? We will never know. What I do know is that diagnosis matters.
I’ve been wanting to write a post about my journey through the terrain of vestibular disorders on my way to my hEDS and MCAS diagnoses. This post is a bit of a departure from my others on FatZebraTheory, but I have some things to say and it’s my blog so I can post what I want to! This piece is really geared toward folks with vestibular disorders and migraine. If that’s not you, you can safely skip it.
I have had three diagnosed vestibular disorders, and experience dizziness secondary to my hEDS. I notice that many of us with vestibular migraines (VM), in particular, report experiencing itchy/watery eyes, sinus congestion, runny nose, etc alongside our migraine and dizziness symptoms. To me, those symptoms hint to some kind of mast cell activation disorder (MCAD). Moreover, the first-line treatments for vertigo, dimenhydrinate (Dramamine) and meclizine (Bonine), are both H1 anti-histamines. I am not alone in seeing connection between mast cell activation and migraine. But, based on my participation in patient forums, it seems to me that many neurologists are not familiar with MCAD and thus aren’t considering it as a possible cause for VM.
A thorough primer on Mast Cell Activation Disorders over at OhTWIST!
Please remember, I am not an MD. I am simply sharing my own experiences and opinions here. A bit about my medical history: I had severe ear infections in early childhood that required tubes in my ears, and removal of my tonsils and adenoids. My ears have never been right and I have had ear pain, fullness, popping, and tinnitus my ENTIRE life. But, my hearing has always been normal for my age. My asthma and allergies were diagnosed as a child, but it wasn’t until recently that I was diagnosed with hEDS and MCAS. In my mid-twenties I developed episodic ocular migraines and TMJD. I had had one hemiplagic migraine that pushed me to get better control using acupuncture and stress regulation. IF you have allergies or allergy-like symptoms in addition to your vestibular migraines, this post is for you.
My Vestibular Cup Runeth Over
My first vestibular disorder came when I was 14 or 15. I developed viral vestibular neuritis (VN)–or at least that is what my ENT thinks it was. I remember feeling like the ground was rolling under my feet. My mother took me to the doctor, who diagnosed “vertigo” and gave me some medicine that made me very sleepy but helped. It took me about two weeks to recover from VN, but I DID recover (as fully as I was going to with undiagnosed hEDS and MCAS).
Fast forward 24 years. Election Day, 2016. I woke up and the world was spinning. Not rolling like it was in 1992, but spinning. I stayed home from work figuring it would go away. I was really busy at the time and had a work trip to Montreal planned. The vertigo persisted throughout the trip. When we got back, I decided it was time to see the doctor. I had also developed a low grade fever as well as intense fatigue and malaise. The doctor diagnosed Benign Paroxysmal Positional Vertigo (BPPV). She performed the Epley Maneuver and taught me how to do it at home. When the vertigo finally subsided, I had been spinning for three full weeks.
Once the spinning stopped, I realized I was still dizzy, but in a different way. I felt light-headed every time I bent over and came back upright. If I closed my eyes, I felt like I was slowly rotating to the right. Any bit of exertion left my heart pounding and I felt on the edge of fainting (presyncope). I slowly realized that I’d actually been feeling this way for quite some time.
Unfortunately the BPPV recurred every 4-6 weeks over the next four months. Each episode was accompanied with intense fatigue, malaise, weakness and a low grade fever–like I was sick with the flu, but with no upper respiratory symptoms. I was also having itching (a particular spot on my leg that had been itchy for a decade) and hives. But I didn’t notice these as related in any way that the time. One day a coworker suggested I go see a friend of hers who is a physical therapist specializing in vestibular rehabilitation therapy (VRT). I made an appointment.
The PT assured me that she sees this all the time and got me started with habituation exercises (head shaking). But after a month the VRT wasn’t working, so the PT referred me to an ENT for FULL testing. I had VNG, CDP, a hearing test, and the dreaded caloric test. The results of the VNG and caloric showed moderate bilateral vestibular hypofunction (the inner ear balance organ was not functioning well on both sides). But my balance test (CDP) was not only normal, it was extremely good. The ENT was a bit puzzled and agreed that this had likely been happening for quite some time–my balance was so good because I had been coping with impaired vestibular function for so long. He had no idea why I was having recurrent BPPV, but seemed unconcerned about. Instead he ordered an MRI which ruled out a bunch of scary things and referred me to a neurologist to be evaluated for vestibular migraine. He also suggested I get a lumbar puncture to check my intracranial pressure.
At first I was dubious about the migraine suggestion. I wasn’t having migraines … at least, not like the ones I had experienced previously. But within a few months I started having more recognizable migraine symptoms (actual headache pain, but also light and sound sensitivity and difficulty speaking). During these attacks, I would get so dizzy I felt like I was tumbling down a white water river. I was nauseated all the time, but I am fortunate to have a strong stomach. Over the summer things got so bad, I decided to see the neurologist. After a particularly bad episode I also saw my PCP and began my elimination diet. She prescribed venlafaxine (which I’m now trying to taper off) because it is supposed to help with both anxiety and vestibular migraine.
When I finally saw the neuro, thank heavens he didn’t feel a lumbar puncture was necessary. Now that I know I have hEDS, I am aware that a lumbar puncture would have put me at risk for a CSF leak, which could have created an huge mess and confused matters further. The neuro felt that I almost certainly had VM and that the dietary changes I had made and the venlafaxine would bring it under control. So there you have it, VN as a teen, recurrent BPPV, and VM. It’s like I was at the Oprah show when she was giving out vestibular disorders. I was hoping the the VM diagnosis would be the end of it, and I would start to get better.
Some Flamingos are Also Zebras
But things only got worse. Much worse. I started eating more of some things, like peanut butter, to replace the foods I had eliminated. I began to hurt all over. I had always experienced a lot of pain due to undiagnosed hEDS, but this was a significant spike above my normal levels of pain. I started having allodynia, where even light touch or the feel of my own clothing would hurt. I had these bizarre stabbing pains that would begin during a VM attack and would migrate all over my body leaving me writhing and moaning in pain, and spinning out of control. And then there were the hives. My eyes also burned and watered. Again, these symptoms felt so insignificant in comparison to everything else, I hardly registered them and didn’t report them to the doctor. By this point, I was having 3-4 migraines a week. The postdrome of one migraine was prodrome of the next. I saw my PCP again and this time she suggested I was suffering from mold illness.
There were good reasons to think this might be the case, and some testing (that I’m not sure is well validated) showed I was positive for three different types of mold. So we began following a modified version of the Shoemaker Protocol. I also came back positive for anti-nuclear antibodies during this time, which is a sign of autoimmune disease. So, I went to see a rheumatologist. It was that doctor who set me on the path to getting my hEDS and MCAS diagnoses. He ruled out autoimmune and then refused to treat me. But, he gave me the words I needed to be able to research and begin, at last, to connect the dots. While both hEDS and MCAS seemed extremely likely based on my medical history and symptoms, at that point it was MCAS that seemed far more urgent.
It turned out those hives were an important piece of the puzzle! I read Lawrence Afrin’s book, Never Bet Against Occam, and I learned so much! I learned why starting Singulair (a leukotriene inhibitor; leukotrienes are released when mast cells are activated) dramatically changed my life for the better, 20 years earlier. I learned that things probably got worse when I changed my diet because many of the food substitutions I made were higher in histamine. I learned that mold illness could have been aggravating mast cell activation in my body, but that based on my history of treatment resistant allergy and severe asthma, I had probably always had MCAS. I learned why I felt sick when I had no cold symptoms (mast cells activate when you are sick, too). I learned that, in addition to histamine, mast cells release prostaglandins which are known to play an important role in migraine. Prostaglandins also play a role in menstruation which is why many people who menstruate experience migraines during their periods. I sometimes describe living with MCAS like being on the first day of your period, everyday (plus life-threatening allergies). The best news was that aspirin tends to be good at helping with prostaglandin related symptoms for those who can tolerate it–and I do!
With my PCP’s blessing, we stopped the shoemaker protocol and I started H1/H2 antihistamine treatment. BOOM, the migraines stopped for 2 months right out of the gate. I slowly added in quercetin, luteolin-based supplements, aspirin, probiotics, and vitamin C for mast cell activation symptoms. I am not super strict about histamine in my diet, but I am mindful about things like peanut butter and tomatoes and I use DAO when I know I’m going to eat something high in histamine. I also gave up alcohol. Eventually I decided to give low dose naltrexone (LDN) a try to see if it would help. I definitely feel better (more energy, less brain fog), but it is hard to say if it is the LDN helping with MCAS symptoms or hEDS symptoms.
My migraines are not gone completely but they are never as bad as before I began MCAS treatment. I went from 3-4 migraines a week to between zero and one per week, depending on environmental factors. Right now I’m in a lull (a remission?). It’s been 2 months since my last full blown migraine.
I am not going to do a deep dive into testing for MCAD, here. But, let me say that it is tricky to get confirmation in blood/urine for the vast majority of people with symptoms. I did do some testing, but due to lab error, my results were unreadable.
I was doing so well with the first-line treatments, I gave up on objectively proving I have MCAS. I wanted to get on with my life. And my doctor is fine with a presumptive diagnosis based on positive response to treatment. I did get a formal hEDS diagnosis. And due to my dizziness and vertigo symptoms, I was fully evaluated for POTS, CCI, and Chiari malformation, each of which can cause symptoms similar to those I experience. These were ruled out in my case, but I would suggest anyone with VM and symptoms of hypermobility be evaluated for these conditionsin addition to MCAD. CSF leaks, as I mentioned above, and intercranial hyper/hypotension can also produce similar symptoms. It’s a jungle out there! In my case, I was only diagnosed with orthostatic intolerance, not full blown POTS, and I’m blessed to be negative for CCI and Chiari. hEDS and MCAS are enough, thank you very much!
Getting Off the Boat
But what about the dizziness? Well, that’s been a bit harder to get rid of. The frequency of my BPPV episodes has decreased considerably (2-3 episodes a year). It is also crystal clear (pun intended) that my BPPV episodes are directly related to MCAS flares. For example, when I bought a new mattress, I reacted to the off-gassing with my typical mast cell activation symptoms and a BPPV flare. The dizziness I experience between BPPV and VM episodes was also still with me for quite some time, though it was improving.
In the mean time, I started a joint stabilization physical therapy protocol for my hEDS. As I progressed, we found that the dizziness was holding me back. So I was referred yet again for VRT this past fall. This time, I saw an EDS-aware PT who knew that head shaking exercises would not be a good idea without strengthening my hypermobile neck. This round of VRT has been a revelation. Having a vestibular PT who understands EDS and MCAS has helped me put together the final pieces of the puzzle.
Some of my dizziness is due to hEDS (lax eye ligaments, perhaps lax eustachian tubes), so we started working on strengthening my eye muscles first. Some of my dizziness is due to EDS related dysautonomia/presyncope/orthostatic intolerance, so I need to use electrolytes and compression stockings to help keep the blood flowing to my brain. Some of my dizziness is due to MCAS-driven BPPV, so I need to work to aggressively reduce inflammation during BPPV episodes and properly execute the Epley Maneuver. Some of my dizziness is MCAS-driven VM, so managing mast cell activation to prevent migraines is crucial. Though I don’t have a formal diagnosis, my PT seems to think I may also have Mal de Debarquement Syndrome (MDDS), too. And it’s true, I often feel like I’m on a boat. Luckily there are techniques for learning to get off the boat that are working for me. What a complicated mess! But there is light at the end of the tunel, and no it is not an oncoming train!
I had been puzzled as to how a mast cell reaction could physically knock crystals loose in the tiny semi-circular canals of my vestibular system. My awesome PT cleared this question up as well. She explained that the otoconia (ear crystals) that come loose in BPPV, are actually suspended in fluid in the inner ear. The activation of my mast cells and the release of the chemical mediators likely change the chemical make up of that fluid making it easier for the otoconia to dislodge. Now I finally get it!
I also didn’t realize is that it is possible to have multiple otoconia loose at once. Being patient and waiting for at least 60 seconds after the spinning stops at each turn in the Epley and repeating the maneuver multiple times a day is absolutely critical. Lymphatic massage has been helpful at moving the fluid out of my head during a BPPV attack.
In addition to helping me better understand my condition, this round of VRT has finally started to help with my daily life. VRT didn’t work the first time because we weren’t treating underlying causes. Now that my MCAS is treated, the VRT can actually start to work. Though I’m doing better, here is no cure for MCAS or hEDS. So I will need to manage this for the rest of my life. I will probably have to deal with some amount of dizziness forever. But that’s okay. With things under better control, I know I can cope. The other day, I had a really high spike in my pain levels and a whole bunch of subluxations (hip and elbow). But I was able to cope and go about my day because I wasn’t dizzy. For me, it is the dizziness that really puts me out of commission.
MCAD in the Differential
I want to end with a couple side-by side comparisons of Migraine symptoms with MCAD symptoms and migraine diet with low histamine diet. Based on my own experience, I feel strongly that MCAD should be in the differential diagnosis for migraine. First of all, we know that mast cell mediators like prostaglandins play a role in migraine. Second, according to the American Migraine Foundation, Asthma and Allergies (both of which are associated with mast cell activation) are highly comorbid with Migraine.
In the recent American Migraine Study II, 40% to 70% of respondents with migraine had comorbid allergies. Other studies have reported that people with migraine are 2 to 3.5 times more likely to have comorbid asthma, especially if they have a parent with migraine and asthma.
It matters if migraine is a primary or secondary diagnosis. Treating my migraines as primary, when they were actually secondary meant that treatment was never going to work, and that I was just going to continue to suffer and become more impaired. So let’s look at the symptom overlap between the two conditions. I’ve taken the symptom lists for The Mastocytosis Society and from Migraine.com and compared them. The first row isn’t meant to imply overlap, but you can see the overlaps emerge after that.
Mast Cell Activation Symptoms vs Migraine Symptoms
Low blood pressure, high blood pressure at the start of a reaction, blood pressure instability
Uterine cramps or bleeding
As you can see, there is a LOT of overlap here. Of course not everyone will have EVERY symptom. But it is clear that if you have migraine and allergy-like symptoms, it is worth considering whether MCAD may be the primary cause of your migraines. The treatments for MCAD will be quite different than for migraine, so talk with your doctor.
Migraine Diet vs Low Histamine Diet
Sufferers of both migraine and MCAD are advised to adopt special diets and to identify their triggers. So here are some general lists of common food triggers starting with MCAD/histamine intolerance, followed by a migraine diet.
Foods high in histamine, histamine liberators, and DAO inhibitors
Modified version of the “Heal Your Headache” diet from the thedizzycook.com
Again, we can see lots of overlap here. Both diets recommend avoiding aged and fermented foods, alcohol, citrus, etc. To me the fact that migraine diets look so much like low-histamine diets, and work for so many migraine sufferers is yet another sign that, for many people, their migraines may actually be secondary to MCAD. I am not suggesting that all migraine suffers have MCAD. But simply that some of us do, particularly those who’s migraines aren’t responding to traditional treatments.
Thanks for making it this far. I wanted to share this with the hope that it might help someone else suffering from chronic vestibular migraines or atyptical BPPV to connect the dots and get on the path to better treatment. I see so much hopelessness in the vetibular patient community. And I really, really understand why. But I want to offer assurance that there are answers out there. Maybe your answers are on this page. Maybe they’re not. But there are answers somewhere. Keep searching!
As a reward for making it to the end, here my vestibular anthem (CW: curse words).
Here is your curse word-laden reward for making it through this long post!
Hello gentle-readers! My posts have slowed to a crawl because I have successfully returned to work! Things are going well. Rocky here and there, but overall my health has improved dramatically in the past year. I wish I could bestow on every zebra or spoonie the privilege of a paid year off from work (with excellent insurance) to focus on health. Alas, that is beyond my powers.
I recently started listening to a podcast, which shall remain nameless, about living with EDS/HSD. The podcast has a lot of great advice, but it is also deeply tied to oppressive ideas about food, diet, and weight. One episode in particular featured an interview with a doctor who encouraged us not to see our illness as an identity. He argued that if we do, we become consumed by it and will never get better. I was rather off-put by this notion. “I have EDS, but it doesn’t have me,” is a common refrain in our community. Far be it from me to tell others how they should cope. If that works for you, stick with it. But it doesn’t work for me.
Here’s why:
Even though I’ve only been diagnosed for a little over a year, I’ve always had EDS. And as I look back at my younger life, I can see the way that so many of my personality traits, habits, and characteristics have also been shaped, perhaps even “defined,” by my EDS. For example, I dealt with chronic pain and chronic fatigue from an early age and was forced to learn how to pace myself, and rest. Some of my colleagues have marveled at my ability to say “no” and not over extend myself. Now that I have a diagnosis, I am saying “no” even MORE often as I feel more justified and less guilty about setting those boundaries to protect my energy.
As a teenager, I feared deeply that my asthma would keep me from achieving my academic and social goals. I was sick all the time with bronchitis, or strep throat. I even got vestibular neuritis and pleurisy! I once missed a month of school due to bronchitis. I couldn’t fully participate in PE and had to be given alternate exercises or sit out from running. There were numerous times I was too sick to go to football games or dances that were so important to me at the time. And of course there were the two knee dislocations, the myriad sprained ankles, or the time my friend subluxed my shoulder while we were arm wrestling. Crutches, braces, slings. I felt different and marked by my sick, broken, fat body. When I wanted to do Running Start (a program for high school students allowing them to take classes at a local two year community college in my state), I feared I would get sick and jeopardize my high school graduation, though I managed to pull it off.
Worse, I was convinced no boy would ever be able to love someone as fat and sick as me. I eventually got over that (!) and found a fabulous fat woman to love and love me back. My geneticist explained that, for reasons as yet unknown, lots of folks with EDS have comorbid immune deficiencies. My immune system is currently functioning at the very lowest end of normal. But we suspect given all my struggles with viral and bacterial infections and subluxations in my teen years, it may not have been functioning well at all back then. Those formative years for me were defined by my marked physical differences and impairments.
At an even deeper level, I think about the way early childhood trauma has shaped my personality in conjunction with EDS. I was a screamer as a kid. The neighbors used to laugh that they could always tell when I was visiting my dad’s house because the blood curdling screams would cycle on and off every other weekend. Over time, I have trained myself not to scream, but I am still easily startled. I can’t watch scary movies; I hate the idea of a haunted house; and I am often startled by things that go bump in the night–usually mice–when I take my dogs out after dark. Even roller coaster’s have been out of the question since my early 20s.
As I began to deal with my childhood trauma I gained insight into my heightened startle response, which is common in c/PTSD. But I have learned that EDS and dysautonomia can also lower the fight/flight threshold. Extensive therapy helped me eliminate most of my cPTSD symptoms, but I still startle fairly easily, which is why I suspect EDS plays a role in this. For example, I nearly jumped out of my skin last week when a colleague came to my door and knocked. I could SEE her through the window in my door and I STILL literally jumped out of my seat. Though I can’t blame this entirely on EDS, it seems likely that this is yet another way that EDS has defined aspects of who I am.
When I returned to work this fall, many of my colleagues asked me: How was your sabbatical? Did you go anywhere? Did you do anything? I have found that these questions are uncomfortable to answer. The answer is “Yes, I went to Bend and Seattle multiple times for diagnosis and treatment of an incurable chronic illness.” It’s kind of a downer and conversation killer. Moreover, it is not at all what they are asking about. But it is impossible to answer to their satisfaction, because my sabbatical was fundamentally altered from the norm by my disability. Even my scholarship has changed in response my diagnosis–so focusing on the work I did, doesn’t even get me out of the awkwardness. I don’t always feel comfortable disclosing the level of detail necessary to answer the question at even the most casual level. But, the question is hard to evade … because I have EDS, and my life is defined by it.
I have EDS and EDS has me. Has that stopped me from getting better? Absolutely not. Part of that is because I have been working to learn as much as I can about my condition and implement what ever I can afford/fit in my life to help me improve my joint stability and manage my mast cells better. I’d say that privilege has more to do with it than anything else. I spend an obscene amount of money on supplements. And, I have a team of THREE different physical therapists (joint stabilization, vestibular rehabilitation, and pelvic floor). I have a job that is flexible enough to allow me to visit all these therapists during the week, and have the time to do my exercises in the morning. Moreover, I’m just straight up lucky that all this actually works for me. There just isn’t that much research out there on what treatments are likely to be successful for most EDSers so this is all kind of an experimental crap-shoot. But still, the point stands: Taking on EDS and disability as an identity has not prevented me from healing in the ways that were possible for me. I still sublux something almost weekly. I still get about 5 migraines a month, though I recover faster than I did a year ago. Some things won’t go away, because I HAVE EDS and EDS HAS ME. And that’s okay.
I think the idea that we need to transcend our disabilities is ablest and healthist. Transcendence, improvement, healing, progress … those things aren’t possible for everyone. AND, it is okay to have other priorities in your life beside your physical health. Many of us have to balance our goals for our health with our need to work and bring in money, or to care for our children/parents, or simply with other joyful activities that sustain us and fill us back up. Being sick/disabled and staying that way does not make us less worthy of respect, care, and dignity. Being sick/disabled and staying that way does not mean we have failed. Being sick/disabled and staying that way does not mean that we brought any of this on our selves. Being able to transcend, improve, heal, or make progress is shaped by the nature of our disability and the privileges we have (economic, social, physical, etc). Furthermore, improvement may only ever be temporary … I mean we are all slowly marching toward death’s door.
Yeah, there I go killing the conversation again. That isn’t depression talking. It is the observation of a chronically ill person who is learning to live every day as it comes, the ups, the downs, the good days, the bad days, with equanimity. If I wrestled with feeling responsible for my illness every bad day, I would waste what precious energy I have on fret rather than accepting, resting, and moving on. For me, recognizing that my life has been shaped at the deepest level by my condition is liberating. It frees me from feeling deficient. I mean, how could my life NOT have been shaped by all this? EDS is limiting. It does change my goals and perspectives. And that is okay, because it is okay to be unhealthy and it is okay to be disabled. And just cause it needs saying, it is also okay to be fat while being unhealthy and disabled.
Its been a while. I’ve been up and down and all over the place in the past few months. Such is the nature of chronic illness. I still feel better than a year ago, on the whole. But I find myself wishing I felt better. Especially as the summer winds down and I find myself facing the upcoming academic year. So much uncertainty about what it will hold, both professionally and physically.
I want to talk through some thoughts about genetic testing. When I was first diagnosed with hEDS, my geneticist recommended Trio Whole Exome Sequencing. This is a kind of test that looks not just for specific genes, but at everything that is on the outside of the DNA–the exome–and matches any significant mutations against your parents to show where the variant came from or if it us unique to you– “de novo”. In particular, the geneticist wanted to rule out vascular EDS (there is a history of intestinal rupture on my dad’s side of the family) and any of the known breast cancer genes (runs on my mom’s side). I decided to wait for several reasons. First, my mother lives abroad, and getting a sample from her would be tricky. I also wanted to wait because I knew it would be expensive and I wanted to let the science mature a bit, allowing the cost to come down and more to be discovered about the genetic basis of hEDS. And, I wasn’t entirely sure I wanted to know about the breast cancer genes.
Well, my mom had a health crisis several months later and was going to be around for a while, so I decided to get the test done anyway. After a three month wait the results came in with (drum-roll, please) ABSOLUTELY NOTHING. Good news really. There is no sign of vEDS, and none of the scary cancer genes were detected either. Phew.
But also … ugh. I mean, it’s pretty silly. I never had a genetic test to “prove” I had asthma or allergies or migraines. Those were all clinical diagnoses too, but I think lots of people with hEDS would love it if we could point to a mutation and say “Aha! There it is!” In reality hEDS is likely caused by more than a single mutation (probably why they haven’t nailed it down). And some folks think hEDS may be caused by MCAS or other environmental factors. Frankly, I’m dubious of that theory simply because I see so many EDS traits throughout my family and not everyone deals with MCAS. But the point is, we just don’t know yet what causes hEDS and smart, educated people disagree about it. But still, there is something that feels reassuring about having an answer that is more than clinical (just based on symptoms). After years of being told it is all in our heads, or that if we just lost weight we’d feel better, the certainty of molecular diagnosis sounds pretty good.
But the problem is genes aren’t the concrete, black and white thing we think they. They interact with our environment, they expresses themselves variably, or they don’t express at all. Genes are not destiny. Yet we imbue them with a kind of determinism–the idea that they not only hold answers for us, but that they determine our path in life. Of course, as someone with a heritable disease, I would never go so far as to say genes don’t matter. But we, myself included, have to be careful about how much weight we give to our genetic code. And, in particular, those of us suspected to have a genetic disease need to be cautious about placing all our hopes on finding a clear singular cause of all our troubles. It is a common way of coping. However, becoming comfortable with ambiguity and uncertainty is what will really help us cope with our illnesses better.
That’s what I tell myself when I’m trying to be a functional adult.
But, the science nerd in me just wasn’t satisfied with the blank official report the genetics lab sent me. I mean, I wanted to see the data. Not that I really know what it means. But, still, I wanted to see it. I learned that there are several companies out there that will read your raw data files and give you unofficial reports that tell you what genetic variants you have that might not be considered clinically relevant (yet). So, I made a records request and last week I got my files and uploaded them to Promethease.
WARNING-my genetics is self-taught! I have a BA in chemistry and workplace training in immuno-chemistry, but that’s it. I may have some of the science wrong here. I’m doing my best, but please don’t take anything here as gospel.
It turns out, I DO have one of the oft-discussed homozygous mutations (homozygous means two identical copies or alleles, which often, but not always, means you are more likely to experience problems due to the mutation) in the MTHFR gene (folate processing) as well as variants in CYP2D6 (drug metabolism), CYP21A2 (of RCCX theory fame), TNXB (hEDS???). And, I have multiple mutations in several of the collagen genes (COL1A1, COL1A2, 1COL3A1, COL5A1, COL12A1) though none of my specific mutations are considered pathogenic or diagnostic for any known type EDS, which is why the genetics laboratory didn’t report them. But, is that because they aren’t important. Maybe? All of them are currently considered or “presumed” to be non-pathogenic. On the other hand, the Promethease report takes me to an opensource genetics database that shows my specific mutations have the lowest research significance rating (meaning there is very little research), and are listed as benign with respect to other conditions that are not EDS. So, what that tells me is that we just don’t know. That’s why my official report was blank. I’m just going to have to wait for the scientists to do their jobs. It takes time and I know they are working at it diligently! It may be that some time in the future this data will help give me molecular confirmation of my diagnosis. Or maybe I just have a unique to me/my family type of EDS.
It is kind of fun to poke around in my data, but it is ultimately unsatisfying. It didn’t tell me anything I didn’t already know. For example, I have 20 mutations associated with asthma and another 20 associated with migraine. Shocker. But, there were other things that showed up in there that were also not surprising, but a little daunting. Lots of gene variants associated with cancer, autoimmune disease, diabetes, and dementia. Looking around my family, yep, I believe it. But it is a bit scary to see those things there. I reminded myself again, the lab didn’t report them because none of them are the BIG BAD SCARY ones. Most of them have very small impacts on risk. And most of them are fairly common variants. The vast majority of humans live with those types of risks. So, I reminded myself that genetics is not destiny–those genes may never express themselves. The best thing I can do is not stress and keep doing what I’m doing to take care of myself … And, get my mammograms. If I believed in Jesus, I’d let him take the wheel.
As a fat zebra, there was another element that was interesting and thought provoking. I have homozygous mutations (again that means two copies, so more likely to express) in the FTO, INSIG2, and a several other genes associated with both childhood and adult “ob*sity.” Again, shocker. I was a fat kid and I am a fat adult–didn’t need whole exome sequencing to tell me that! But there was something strangely cathartic about seeing those mutations. It is the concreteness I so desire with hEDS. My fatness is a genetic trait just like my eye color or hair color. And yes, it comes with some risks. But so does hair color (red heads are at risk for anesthesia resistance and have increased risk of skin cancer). There is no reason genetic variations should be stigmatized. Not red hair, not fatness.
But fatness is stigmatized. And, I strongly suspect that if it weren’t, I wouldn’t be as fat as I am. Remember that whole genes/environment thing? I was genetically predisposed to be fat from the start, but living in a toxic environment (culturally and chemically) has had a tremendous impact on the expression of those genes. We know that endocrine disrupting compounds contribute to fatness. We also know (though we can barely admit it to ourselves) that dieting contributes to fatness. If I hadn’t worked so hard trying to manipulate my body size through food restriction, I would not have triggered my natural set point to move up and up and up. I might have stayed plump rather than becoming superfat. OR, maybe with the combo of homozygous FTO and INSIG2 mutations, I would have been superfat in any case. Regardless, I know I would have been healthier, in a holistic sense, had I never dieted.
But there is no going back. This superfat body is here now and it deserves love and nourishment and healthcare … and non-dairy Hagen Daz. Trying to manipulate my body size is as futile as trying to manipulate my height or any other genetic trait. No, actually it’s worse than “futile”, because trying to shrink my body is actively harmful. Knowing I have fat genes makes me feel even more resolute that I will not engage in restrictive dieting. Instead, I will nourish and move my body to keep it as healthy as it can be given the mess of mutations I’m carrying around.
This has been an exercise in grappling with the social and emotional meaning we bestow upon those millions of A’s C’s T’s and G’s–the particular arrangements of amino acids shape, but don’t make us who we are. Our genes interact with our environment (social and natural) and express in a multitude of ways. They are both supremely important and also not that meaningful (yet?) from a medical perspective. And yet many of us look to them for answers about who we are, where we came from, and where we are going.
What’s amazing to me about our genes is that they aren’t actually all that unique. After all, we share 50% of our genes with a banana and 96% with Chimpanzees and Bonobos. Among humans, we share 99% with each other. More mind boggling still is the fact that genes make up only about 2% of our DNA … the rest is “junk” (or so the scientists think!). It is amazing that all these variants that cause the myriad human traits we can see (and many more that we cannot) happen in just 1% of our genes and just 0.02% of our DNA! Many of us, whether we are ill or not, put a bit more faith in the state of the science than it perhaps merits. Though we know more than ever before, we still know very little about what it all does and how specifically our genes interact with the complex world in which we live. For now, those of us with hEDS seeking answers among the base pairs of adenine, cytosine, thymine, and guanine will just have wait for the science to catch up to our expectations. Getting comfortable with ambiguity and uncertainty is the best bet to coping with the emotional toll chronic illness takes.
This blog post is written to the tune of “Feeling the Same Way” by Norah Jones.
EDS keeps trying to teach me things. And I keep not learning them. I have always been a good student (hello!). But I am really starting to get down about my ability to learn. Sigh.
The lesson I’m struggling with is this: Be gentle on yourself by LISTENING to your body because you will feel better faster if you do. WHY is this so hard for me?
I mean, I have some ideas: Fatphobia, Capitalism, Ableism…
I have been working hard at my PT and exercise plan. But the only reason I have made progress is because I learned (several times) to go very, very slowly so as not to trigger a flare. Because of that, I finally hit a major milestone recently. I was able to tolerate an hour of water exercise at the YMCA. But then, forgetting everything I have learned, I went on a day when I wasn’t feeling well. I told myself it might help me feel better. Even though I know that advice (just shake off the fatigue at the gym) is advice for horses, not zebras. Well, I paid for that mistake with a dysautonomia attack after I finished the class. Duh.
I also didn’t register that the reason I wasn’t feeling well that day was because I was tapering an SNRI medication I was trying to get off of too quickly. (Side note: the medicine is venlafaxine prescribed for vestibular migraines before we knew they were driven by MCAS. The med never helped much, so it’s time to get off of it). In retrospect, it is clear I was having withdrawal symptoms the day I overdid at the pool.
I don’t fully blame myself for this one. My doctor, like most doctors, recommended a taper that was way too fast. I extended it, but it was still too fast. This is a structural problem attributable to … capitalism, ableism, etc. I don’t even really blame my doctor. But add to the equation the fact that I was feeling a bit hell bent on getting off the medication by a specific date rather than letting my body guide the taper, and you have a recipe for disaster. I pushed through, noticing but brushing off withdrawal symptoms and mindlessly planning to “tough it out.” Bad advice for horses AND zebras when it comes to tapering mind altering drugs.
I finished the taper while on vacation this past week. I lost two whole days to withdrawal. I honestly barely remember them. I was so dizzy and nauseous and out of my body. Blood pressure was low, heart was pounding, pain in my joints. Fun stuff. I DO remember wondering “is this really ‘that bad’?” as I was doubled over with horrible abdominal cramps. After the second day totally off the med, I decided to reinstate it. I have SO much more empathy for chemical dependence after that experience. If I weren’t on a legal drug, they’d call my choice to reduce harm by taking the drug a “relapse.” I am now taking a TINY amount and I will probably slowly taper off that over the next 9 months or so. Because WHY do this to myself? And, who’s timeline am I on? Once I reinstated I started to feel better and the answer to my question became apparent. YES, it was really “that bad.”
But, seriously, why do I do this stuff to myself? I started to research withdrawal syndrome once it got “that bad.” But, like, why didn’t I research it BEFORE I got to that point ? I could have saved myself a lot of suffering AND enjoyed my vacation a bit more. Sigh. I learned with exercise to go slow and let my body be my guide. I guess I still need to learn the same thing, all l over again. I wonder how many times I’ll have to learn this lesson?! I could blame myself, but that seems to be part of the problem. I think I’ll stick with blaming with fatphobia, capitalism, and ableism–they run that deep. Unlearning them is one of the hardest things I’ve ever done.
I’ve been busy writing for the book lately, so I thought I’d take a moment for a bit of a fun post. Before I was diagnosed with hEDS, I heard from others that the diagnosis can sometimes trigger a deeper understanding of one’s past medical history OR the realization that one is subluxing much more than they thought. Both, in fact, happened for me.
It seems that every day I remember some long forgotten injury that I now realize is likely related to EDS (poor proprioception, hypermobility, etc). So here is a running list of the bizarre, unglamorous, and downright weird ways I have injured myself as a zebra.
Falling up the stairs (poor proprioception, easy bruising)
Falling down a single stair (poor proprioception, ankle hypermobility)
Skipping the last step, somehow (poor proprioception)
Falling getting into the shower (poor proprioception, easy bruising)
Stepping on a sidewalk crack (poor proprioception, foot subluxation)
Getting out of the pool via the ladder (poor proprioception, knee/hip subluxation)
Slipping on ice, slipping on ice again, slipping on ice again (poor proprioception, hypermobility, knee subluxation)
Jamming my finger on the steering wheel (poor proprioception, pinkie subluxation)
Jamming my finger on a basketball (poor proprioception, finger subluxation)
Walking barefoot on the beach (poor proprioception, ankle hypermobility)
Arm wrestling with a friend (shoulder subluxation)
Going down a water slide (knee subluxation)
Wearing a modest heal (broken toe)
Stretching in bed (shoulder/knee subluxation, cramping)
Sleeping (shoulder subluxation)
Standing up after falling while skiing (knee subluxation)
Vacuuming (knee subluxation)
Slipping on a rug in the house (knee subluxation)
Juicing lemons (wrist/hand hypermobility)
Walking the dogs (wrist hypermoblity)
Extending my arm (elbow subluxation)
Putting on my bra (shoulder subluxation)
Typing too much (wrist/hand hypermobiltiy)
Slamming my finger in the car door, slamming my finger in the car door again. (Poor proprioception)
Building furniture (wrist hypermobility)
Sneezing too hard (neck?? subluxation? Something hurts like hell and radiates down my arms)
I am CERTAIN there are many more. It is just amazing to me all the strange ways I have hurt myself. And, so many times, I’ve felt the pop, gone to the doctor, only to be told it is nothing. I started to believe it was nothing, so I kind of stop paying attention to it. Now, I feel like I have permission to take injuries seriously, to make accommodations to my home/work, and to be EXTRA careful. Being careful is not being dramatic, but being sensible.
It’s been a while since I made a post. I’ve been busy reading, doing some writing for the book side of this project, working on PT goals, and managing flares. But I wanted to take a minute to talk about a concept my therapist introduced to me as I was discussing my frustration with medical care for fat zebras: Entitlement.
So often we think of entitlement as a bad thing. And surely, it can be. For example, when self-important privileged people, feel entitled to jump the line at the grocery store, interrupt some one who is speaking, or to implement racist/sexist social policies, that is a type of entitlement that is destructive to society.
But when we are talking about health care, we are talking about something that is (or should be) a human right. So many fat people have been conditioned through medical abuse and neglect to think about healthcare as something we have to earn through “good” behavior, rather than something we are entitled to no matter what.
Due to a family member’s recent experiences of BMI-based medical gatekeeping, I was feeling pretty hopeless about access to healthcare, especially surgery, for fat zebras. Though, I was only a witness in this situation, when we see other people who are like us being denied care, it is nearly impossible not to internalize the fact that we, too, may be denied care. And that is anxiety producing.
My science background drives me to look for evidence in moments like this. I know the research. BMI is routinely used to deny access to surgery, despite the fact that numerous studies show it has little to nonegative impact on surgical outcomes. But, many doctors and surgeons don’t seem to be practicing based on the evidence. My social science background drives me to look at systems to understand why. Part of what drives the denial of care on the basis of BMI is malpractice insurance. Doctors need to keep their failure rates low to keep their insurance rates low. Fear of the financial impacts of surgical complications over-rides the evidence in many cases. I understand what is happening. Denial of care is rarely because doctors are horrible, uncaring people, but is instead due to our for-profit healthcare system–which privileges financial risk over care.
But understanding at an intellectual level only goes so far. I still have to live with the fact that I might be denied care when I need it most. And that denial of care may worsen my mobility and quality of life. A way I was coping was to think about my health and my future as though certain healthcare interventions just won’t be available to fat zebras like me. As though, they didn’t even exist. Pretend it is 100 years ago, and those are the options available to me. That puts me in the position of trying to prevent my symptoms from getting worse, which is not totally within my control.
That’s messed up.
My therapist suggested I work on internalizing a sense of entitlement to healthcare. This resonated with me. We all deserve care, no matter what. Unfortunately lots of different folks are denied care for a variety of reasons. For example, black people, especially black women, are routinely treated as drug seekers in emergency care. And research shows that many black people are denied access to pain medication due to racial bias. I have a friend who was sent home from a botched pelvic surgery with nothing more than instructions to take ibuprofen. Trans folks also experience widespread discrimination in healthcare settings. And, fat trans people are routinely denied gender affirming surgeries on the basis of BMI–a measure that does not have clear cut correlations with either poor health or surgical outcomes.
It is hard to internalize entitlement, especially when one is socialized on the basis of gender, race, class, or size, to feel lucky to get healthcare, to feel out of place in healthcare settings, to feel intimidated by the knowledge or status of doctors. On top of that, it is just straight up hard to navigate healthcare systems. It takes time and knowledge–something most of us don’t have.
But when it comes down to it, my mobility is just as valuable as a thin person’s. My quality of life is just as important as a non-zebra’s. Even research that shows correlations between BMI and poorer surgical outcomes, also shows improvement post-surgery for fat patients. I am not alone in believing that navigating the risks associated with surgery should be between a patient and her doctor. And, lots of research shows that the single biggest predictor of long term health and reduced mortality (risk of death) is physical activity and not BMI. So, I need to protect what mobility I have fiercely. I am entitled to care that helps me to preserve my mobility, even if that requires surgery at some point, and even if the outcomes are worse than they would be for a thin non-zebra, but still mark an improvement for me.
I want to also acknowledge that being ambulatory does not necessarily equate to mobility. What I mean here, is that we are all entitled to advocate for care that helps us to continue or improve our physical activity, in whatever form that takes for us. For some, that means being able to walk and exercise on our feet. For others, that may look different–but everyone’s mobility and physical activity is valid and deserves just as much care, regardless of whether they are ambulatory or not.
So, what does it look like to enact entitlement to healthcare as a human right in my life? I’m still working on this. But here are some ideas:
Imagine what a thin, straight, wealthy white cis-man might expect when going to the doctor. Expect the same for yourself.
OR, imagine how hard you would fight for a child who is in your life. Fight for yourself the same way. After all, you are someone’s child!
When terms are confusing, insist on a clear explanation. Don’t leave until you get one.
Expect to be accommodated. That doesn’t mean that you might not have to check ahead about accessibility. Internalizing entitlement means that we don’t see accommodation as a burden on others, but something we are entitled to as a right (because it is).
Bring someone with you to doctor appointments who can help you advocate if you have a hard time doing it for yourself. Sadly, it often helps to bring someone a little more privileged than you. Many women who are married to cis-men note that they get better treatment when they bring their husbands with them. Of course, not all of us have husbands!
When decisions are made that feel like they may be based on bias rather than evidence, ask the provider for the evidence. If that doesn’t work, tell the doctor that you think bias may be at work.
If you think tests, imaging, or some other type of assessment or intervention should be done and the doctor is brushing you off, ask them to document that they have declined to assess/treat you.
Find a new provider, if you are able to. This one can be tricky for folks who are using medicaid insurance, who are on managed care, or who live in rural areas, where the network is limited. But there are almost always other options. And there are some phenomenal doctors out there! YOUR health, mobility, and well-being are worth the extra effort to find someone who will treat you.
Remember you can interview new providers if you want to! Just make sure to tell the scheduler you have lots of questions for the doctor so they book enough time. When you have a first appointment you are allowed to ask all kinds of questions about the provider’s approach to care. Ask about their thoughts on BMI and any other issues that might help you avoid surprises later.
Take research with you to the doctor. One of the coolest thing about the internet is that many of us can access PubMed and find, at a minimum, summaries of health research. Full text articles can often be gotten by emailing the authors directly and asking for it. Many are happy to provide access. It may be confusing to you, but work on building your health literacy. If you are a fat zebra you are gonna need to learn as much as you can. Google is your friend! Patient forums are also a good place to build your knowledge and ask questions.
If you have a bad experience, say out loud to yourself: “It’s them, not me that’s the problem. My body deserves care just like anyone else’s.”
What other suggestions do you have about how we can work on internalizing entitlement to healthcare?
During Spokane’s multiple snowpocolypses I had to do a bunch of snow shoveling. The past few years, I have ceded snow maintenance to my partner almost completely. Exercise is a major MCAS trigger for me. But more than that, ice and snow are particularly challenging for my unstable, hypermobile joints. My last severe knee subluxation happened when I slipped on ice. I now suspect I also subluxed my hip during that injury. The hip hurt a lot at the time, enough that urgent care x-rayed it, but there was no obvious damage so the orthopedist dropped it. I’m doing a bit better physically and my partner’s job has become extremely demanding (she’s the boss!), leaving her little time for shoveling. So, I’ve been doing more this winter.
Oh dear, is it grueling! I know that shoveling is hard on the non-disabled, too. After my first round of snow shoveling, I had pretty intense back pain. I talked with my physical therapist who recommended I get a sleigh shovel that allows you to push the snow rather than lift it. WOW! That was a game changer for me! It took some practice and creativity, but I managed to figure out how to use it to maximum benefit. I also use snow cleats for my shoes to prevent slips that could lead to subluxation/dislocation.
Unfortunately, I can’t use the sleigh shovel for tight spaces, so I had to do a bit of shoveling with the traditional shovel during our back-to-back snow storms this past week. That triggered another flare, including migraine and hip pain. I was even worried I had torn something in my hip, the discomfort was so intense. But rather than worry on it, I decided to consult again with my PT.
I recently had to switch PTs because my previous therapist went into pediatric practice. But, I was extremely luck to be able to find another physical therapist with good knowledge of EDS. EDSers can’t really be too choosy about our providers because there just aren’t many who have the expertise. I am now seeing a man. I tend to prefer to see women for a variety of reasons, but I don’t have that choice right now. And, I like this particular man. He is knowledgeable and he has already helped me through a couple of pain flares.
Still, regardless of whether or not I like a physical therapist, the relationship requires a certain amount of vulnerability on my part. And, in our society that kind of vulnerability is shaped by gendered/racialized power dynamics and fatphobia. This struck me as my PT was working on my hip and touching me in my groin area as well as pressing on the muscles in my abdomen. This is a very vulnerable position to be in, both as a survivor and as a fat person. This healing touch could so easily shift into violating touch. In my case, my PT showed me on a model how and where he was going to touch me before initiating that touch–in other words, he negotiated consent. In a previous session, when working on my ribs below my breast, he positioned my own hand over my breast and exerted pressure using my hand. He is clearly well trained about consent and doing PT techniques in areas of the body that are sensitive. As a fat person, I found myself feeling vulnerable about having my by belly fat touched, too. I try to stay clinical, but it is hard not to feel some worry that the person doing the touching will find it either difficult or repulsive to touch my belly fat. The point I’m trying to make is that getting the treatments I need comes with a certain amount of risk, both social and physical.
As a fat zebra, I have some extra challenges in finding good providers. Not only do I have to find a provider who knows about EDS, but I have to find one who will not find my body repulsive or assume I will be lazy/non-compliant. I’ve been fairly lucky in that regard. In the past seven years I’ve seen four physical therapists and two different chiropractors. Only one of the physical therapists seem to have palpable disgust for my body. She was able to help me, despite that, but it required me to put aside the feeling of shame that inevitably emerges when someone finds your body disgusting.
I compartmentalized that shame because I needed the physical therapist’s help. When I returned to my orthopedic surgeon to be re-evaluated he was obviously surprised by my progress and said, “Well, you’ve obviously been compliant.” If I had chosen to stop seeing that PT because of her attitude toward my body, the doctor might have interpreted the delay in my progress as a lack of “compliance” on my part. [I’ll have to write another post about the language of “compliance” in medicine”] Because zebras tend to be high utilizers when it comes to PT, fat zebras bear the burden of finding ways to cope with medical bias. It should be the providers’ responsibility to deliver shame-free care. But as it stands, we risk doctors refusing to treat us, or worse, disbelieving our pain and attributing it to conversion disorder, if we don’t make ourselves vulnerable to bias and shaming in the physical therapy setting.
In a future post, I’ll write a little more about trauma, fatness, and chronic illness. But for now, I’d like to point out that many folks who have experienced violence against their bodies may have a particularly difficult time placing themselves in such a vulnerable position in physical therapy or other medical settings. For my part, I was able to do it for so long because I had so effectively dissociated from my trauma. In fact, I remember very actively choosing to “leave my body” during PT sessions, particularly with the woman I described above. Once I developed different coping mechanisms (through extensive therapy), I have been better able to stay aware of my body’s trauma responses while receiving medical care. Some survivors may not be such fabulous dissociators as I was (a good thing if you ask me). Others don’t have the financial resources to have been able to access such therapy. Both of these things will make PT that much harder to receive.
Let me be a bit expansive here. So far, I’ve focused on the ways fatness and sexual trauma can make us vulnerable in PT settings, but really there are many more ways in which patients can experience vulnerabilty in medical settings. Imagine, for example, how a trans person might experience the scenario I described above in which a PT is doing manual therapy on the groin muscles. Such therapy might require being out with a transphobic therapist. Even if the therapist were trans-affirming, trans folks who experience dysphoria may find touching in that area deeply triggering. Fatphobia, sexism, cis-sexism, ableism, racism, classism, and so many other systems of power shape healthcare and require us to make ourselves vulnerable to stigma, shaming, neglect, and abuse in order to receive the care we need.
Show me a fat zebra, and I’ll show you a trauma survivor. Sometimes that trauma is due to external structural and life factors, other times it is directly related to fatphobic medical abuse and neglect. If you are a fat zebra, and you have the resources, I strongly encourage you to make trauma therapy a part of your treatment plan. The physical and emotional are so deeply intertwined, and in such complicated ways. That is NOT to say that your trauma is the cause of your pain. However, it might be a contributing factor, or even an epigenetic trigger for expression of a pathogenic gene. Trauma therapy can’t unring that epigenetic bell, so to speak. It won’t cure your EDS (or any other chronic illness). But, trauma informed therapy can help you develop coping mechanisms to calm your fight/flight/freeze responses and make you feel less vulnerable when accessing PT, which WILL help your EDS (or other condition). If talk therapy isn’t accessible to you, you may find some free or inexpensive mindfulnessresources to work with on your own or with your family/support system.
If you are a healthcare provider or support person, please keep in mind that physical therapy requires vulnerability–social and physical–that some people may not be ready for … may never be ready for. That doesn’t mean they are lazy or “non compliant,” nor does it mean their pain is all in their heads or that they are “attention seeking.” Find ways to support and validate, and if appropriate, encourage trauma-informed interventions to help your loved one modulate her body’s trauma response.
To finish up this series, I want to think about what it means to be nourished. I think “nutrition” can sometimes feel a bit cold as a concept. Nutrition is important, but it is so wrapped up in diet culture that I find it hard to engage with. It doesn’t have to be, but it is. Nutrition was a transitional concept for me as I moved out of dieting and focused “nutrition” as opposed to calories.
But, as I’ve been going through my chronic illness process, I’ve found myself shifting in my thinking away from nutrition and toward nourishment. Here is an example of what I’m getting at: During flares, I am often so fatigued that I cannot prepare food. I mean, like even a little bit of food prep is more than I can manage. 9-10 months ago I went through a period when I just wasn’t eating at all during the day because I was too tired to make food. I’d wait for my partner to get home and then eat whatever she prepared for dinner. I just got weaker and more fatigued.
One day my partner came home with a whole bunch of “convenience” food that met my food requirements. It was easy stuff I could microwave or eat cold. And, it included breakfast, lunch, and dinner. It was not how I prefer to eat. But, it was food and that’s what mattered. After a week of eating three squares a day, low and behold, I felt a bit better! And, because I was nourished, I had more energy to make the food I’d rather be eating. It was a light bulb moment for me about the vicious cycle of a flare. Without some nourishment, I couldn’t get out of it.
From a nutrition standpoint, that “flare food” wasn’t great. From a nourishment perspective, it was exactly what I needed. When I’m flaring, I just need to eat–yes, it needs to be food that is not going to make me worse, but it doesn’t need to be perfect nutrition, just something that nourishes. I have to admit that part of what was driving my not eating, in addition to fatigue and nausea, was the pursuit of perfection. IF I had had more energy, I would have eaten. But, I couldn’t think of low-prep foods that met my food plan and had complete/balanced nutrition. So, I just didn’t eat. Since that time, I’ve come to shift my focus from nutrition to nourishment. I make sure to have some low prep items on hand at home in case of a flare–regardless of if they are the most nutritionally complete foods. That way I can nourish myself until I feel better and can think about nutrition again. I also saw a non-diet nutritionist who helped me brainstorm some meals that fit my food plan but that don’t take much of energy to make.
This shift has also helped me think more expansively about nourishing my body. Nourishment gets me back to functionality and helps me do the things I want to do. In this sense, my physical therapy “nourishes” me–though it isn’t food. And, the Great British Baking Show “nourishes” me, though I don’t eat anything they make! 🙂 Moreover, thinking about nourishment instead of nutrition allows me to integrate how I think about my mental and physical health. It also encourages me to focus on meeting my basic needs first, rather than always striving for perfection.
As a result of this shift toward “nourishment,” I’m working on prioritizing the things that fill me up, give me energy, and help me feel and function better. I’m trying to avoid the impossible pursuit of perfection which seduces us with the idea that perfect adherence to the “rules” is the only guarantee of improved function and well-being. Being nourished requires letting go of perfection and getting in touch with my intuition and my body. It requires me to actually listen and observe how my body feels in response to the world around me and in me, rather than simply “follow a plan.” It requires me to give as much weight to my mental health as I do to my physical health. And, it turns out, that food is just a small part of being nourished.
I want to leave you with some final remarks about the question at the heart of this series: Is this a diet? It is so tricky for folks to navigate using food to manage chronic illness under a Health at Every Size paradigm. Watch yourself for the warning signs I outlined in part two. I would also suggest that if your food plan is not focused on weight, is tailored to your unique nutritional needs, does not revolve around forbidden foods, and prioritizes holistic nourishment over perfection, you are not on a diet. But, it takes constant work to keep your food plan from slipping into dieting and disordered eating territory in this cultural environment. As much I have tried, I admit I have flirted with danger in the 18 months since I made my food changes. I think it can be worthwhile for those of us with chronic illnesses to walk that tight rope. But it can only help to put together a support team you can check in with regularly. I suggest a non-diet nutritionist, a therapist, and supportive friend or family member. If you are in recovery from an eating disorder, that support network is an absolute must. Let me know how you navigate managing illness with food using a Health at Every Size paradigm in the comments!
One thing I worried about when I started to change my eating was becoming obsessive about food. I have a history of that. Not full blown eating disorder-level. But I have to watch myself. I know I have the capacity to get to a really disordered place. So, I wanted to know how to incorporate food changes for managing chronic illness with a Health at Every Size approach. Unfortunately, I couldn’t find much out there to help guide me (hence this series). Most of what I found wasn’t really geared toward people with serious chronic illness. I did listen to a podcast over at Food Psych about elimination diets and eating disorders. What I took away from it is that I should be cautious about expanding my elimination beyond my initial targets and that I needed to watch myself for the pursuit of some kind of “perfect” diet and “perfect” symptom control. That is, elimination diets in chronic illness can lead to orthorexia.
I also knew from my HAES reading that another disordered pattern of perfectionist thinking I needed to avoid was “good food”/”bad food” thinking. For example, my food changes needed to resist the idea that the foods I don’t eat are “bad” foods. Cheese is not a bad food. It is a delicious and nutritious food for many people. It is an excellent way of preserving dairy for consumption at a later date. Cheese is the shiz! Cheese isn’t bad. My body isn’t bad. They just don’t play well together. For people who aren’t already dealing with a lot of inflammation, cheese probably doesn’t give them much trouble. For me, shucks, I’ll elect to get my salty-creamy-goodness from something else (like cashews).
As an adjunct to this idea, I also knew that I needed to avoid attaching a moral value to my new food plan. I needed to not see myself as engaged in some kind of morally superior pursuit of health. Wow, it is hard not to get seduced back into this one, especially when food moralizing is all around us! For example, at a work buffet luncheon, I was chatting with a colleague I don’t know well. As we got closer to the food, I got excited because they had labeled the food clearly so I knew what food met my eating plan. I explained my excitement to my coworker who replied, “Good for you! You are so healthy. I should cut [x food], too.” She had no idea how sick I actually was (hello invisible illness!). There might have been a tinge of over-congratulating me because of my size, too.
At a different time in my life, I would have swelled with pride at the moral goodness of my food choices. This time I let her know that I wouldn’t have cut out such a key food without a serious reason, hoping to subtly demonstrate I didn’t share her moral stance on food. It was important for me to express that to avoid internalizing her praise. Avoiding good food/bad food moralizing is important for another reason. It helps keep me active in my food choice. What I mean is, resisting moralizing helps me remember that I am choosing to eat differently for a purpose–better function. I am not obligated to eat differently because it is “right” or “good” or “correct.” For me, this helps keep me out of orthorexia-land.
So much of disordered eating relates to perfectionism. The trick about eating for chronic illness is that we have yet another entry point to disordered thinking–the pursuit of perfect control of our illnesses. This is something I find myself seduced by even with respect to supplements. But deep down, I know it isn’t possible. Perfect control of a chronic illness is unrealistic. There will be flares. Even before I was fully diagnosed, I knew this from my experience with asthma. Not even the most perfect medication can prevent every flare. So, I try to keep that in mind about my food and supplement choices. It is a fine line to walk. Especially when I’m feeling poorly and I need to be extra careful about what I eat.
Experimental Attitude
What all this means for me now is that I periodically re-challenge foods I’ve eliminated. I am working on several things to improve my body’s function and I have made a lot of progress! My migraines are happening only about once every couple of months. And usually when I have one there is a very clear trigger. The body changes and even heals, sometimes! It may be that I can reintroduce some foods over time. I won’t know unless I try. And that will mean a few flares I bring on myself. It’s all an experiment! Maintaining an experimental attitude helps me to avoid becoming fixed and stuck in my eating plan.
I want to take a minute to acknowledge that this kind of experimentation applies nicely to food “sensitivities.” It doesn’t work so well for those who experience anaphylaxis (whether due to IgE mediate allergies or MCAS). For those folks, strictness is important. But, as Allergy Girl Eats writer, Kortney discusses, the fear of anaphylaxis can also hide eating disorders. I hope she and others write more about the intersection of eating disorders/disordered eating and illness that require strict management of food (such as allergy, celiac, and diabetes).
As I’ve continued on this journey, I have seen so very many food plans (some are truly diets) promoted as cures to whatever ails us: Keto, autoimmune protocol, FODMAPS, low histamine, low tyramine, etc. I do not doubt for a minute that food is important to managing illness. And, many folks have had good luck with some of these food plans. But I worry that often times we position food as the enemy. That’s easy to do, especially for folks with anaphylactic reactions or with gastroparesis. So much of the advice out there is about what not to eat. I think in our pursuit of perfect symptom management sometimes we run the risk of forgetting that we need proper nutrition–most especially if we are unwell. In the pursuit of perfect control, we can throw the nutritional baby out with the bath water. On the other hand, for some folks, perfect nutrition will never be possible because of the limitations of their illness.
Perfection of any kind is a pipe dream. Continuous experimentation helps keep me in a fluid place, but it can feed into a quest for perfection as you’ll see below. Caution is warranted!
Warning Signs
Several months ago, I talked with my nutritionist and naturopath about the low histamine diet. They both discouraged me from strictly following it because they felt that benefits to MCAS control would not outweigh the nutritional deficiencies of the diet. I also mentioned the idea to my therapist and she exclaimed, “You can’t go on a diet. You are already on a diet!”
The comment struck me. Was I on a diet? I didn’t mean to be on one! I think she meant it as joking comment–as a way to acknowledge that my food plan is challenging enough as it is. And she’s right! But it got me thinking: If you, like me, are a recovering dieter finding themselves pulled back into the world of restrictive eating, it can be overwhelming to figure out what is a “diet” and what is a food plan that might help you feel better.
In my case, my MCAS has been fairly well controlled by the food changes I’ve already made and my medications/supplement regimen. Experimenting with low histamine–for me–would be pursuing perfection. AND, it would further reduce variety which is not nutritionally wise, nor does it facilitate “normal” eating. That’s the red flag. I decided to follow my team’s advice. Not only is a low histamine diet unlikely to give me much greater benefit, I think the toll on my mental health would be too heavy. I need to think holistically about what is healthy for me. That includes my mental health. More food changes, reduced variety, and less nutrition isn’t going to do me any favors physically or mentally.
I think it can help folks like me to know what the warning signs of disordered eating are. There is a lot out there about this, but this list is geared toward the context of chronic illness. Watch for this in your food plan–either intrinsically, or in the way you implement it:
“Good” / “Bad” food or moralistic thinking
Eliminations without challenges (except for anaphylaxis, celiac, diabetes, etc)
Pursuit of total symptom control
Requiring perfect adherence to the plan (except for anaphylaxis, celiac, diabetes, etc)
All food, all the time: Obsessive thinking about food outside of mealtimes/meal planning
Weight-focused rather than well-being focused
Privileging physical health over mental health or seeing them as separate
Because I tend to be a visual thinker, I made this flow chart to help. Let’s call it a draft. I am certain it is missing something–let me know in the comments. If you are wondering if your food plan might be a diet in disguise, give it a try.
The point is that we always have to be careful! Pay attention to your goals and thoughts about food as you alter you food plan in the pursuit of better functioning. Watch for the warning signs. Whether the fault is in the “plan” itself or in our approach to it, we don’t make food changes in a vacuum, but in the context of a toxic diet culture. That means, if we are prone to perfectionism we run the risk of sliding into disordered patterns of behavior. If you are recovering from an eating disorder, you must be especially careful and work with your support team to monitor your implementation of any food changes.
I suspect that those of us with EDS/MCAS/dysautonomia are particularly prone to disordered patterns as our conditions often increase our fight/flight response. The pursuit of perfectionism can result from our pain and desperation and it can also become a coping mechanism for modulating our elevated adrenaline–a maladaptive way of self-soothing. The challenge is to find other ways, self-compassion, trust, and perhaps medication (whether for POTS or for anxiety/depression) to regulate our fight/flight response rather than self-destructive patterns. NOT any easy task!
In part three I will discuss the shift I have made toward thinking about nourishment in a holistic sense to counter the pursuit of perfection. Watch this space!
