I’ve been thinking a lot about nutrition and nourishment. I want to share some of those thoughts with you, particularly because a year and a half ago I was looking for resources about how to use food to manage a chronic illness under the health at every size paradigm but couldn’t find them. This will be a three part series that describes how I bumbled my way through this process. I don’t claim to have it all figured out, but I can share what’s worked for me and the places that tripped me up. Take what’s useful to you; leave the rest
In this post, I want to lay some ground work. First, let me define what I mean by a “diet.” In this context when I use the word “diet,” I mean not the variety of the things we eat, but instead the act of restricting our food intake for the purpose of weight loss. I also want to say a bit about what I mean by “disordered eating,” which is different from, but related to, a diagnosable “eating disorder.” Here it might be useful to think about the opposite of “disordered eating”–“orderly” eating (usually called “normal eating” or “competent eating”). I draw from the National Eating Disorders Association’s definition: “Normalized, non-disordered eating is when one mindfully consumes food when hungry and is able to stop when full. Additionally, they incorporate variety into their diet.” But, is dieting necessarily disordered? I would argue that by the definition of normal eating above, dieting is inherently disordered. What’s more, research shows that many dieters progress into pathological dieting and some into full blown eating disorders. Many more dieters may never meet the diagnostic criteria, but are clearly not normal eaters.
As I contemplated changing how I eat to manage my illness, I knew I did not want to go on a diet in the sense of restriction, but I did want to identify possible food triggers for my migraines and use food and nutrition to manage my illness. I knew I wanted to find a way to continue to aspire to normal eating (I don’t think I’m really there yet). To be honest, one of the effects of learning more about the science of weight was that I became fearful of loosing weight because I continued to be fearful of gaining weight (weight cycling). I’m still working through this (the fear part). At any rate, I had a suspicion that food was a trigger for me, but I didn’t want to restrict, loose weight, and then gain it back again, even if my goal this time wasn’t weight loss. Nor did I want to trigger a backslide into a disordered relationship with food. Lots of feels, much tricky!
Desperation
Let me back up and tell you a bit about how I got to the point of tinkering with food. In the summer before school started in 2017, I knew things were going to get worse as soon as I went back to work. In mid-august I had what I later learned was an Alice in Wonderland migraine and it freaked me out. At the time, I thought it was a panic attack. That episode was a major turning point for me. I had been seeing specialists about vertigo and dizziness for some time, but I hadn’t gotten a diagnosis yet and I decided something just had to be done.
I was right that things were going to get worse. At my lowest point, I was struggling with migraines 3-4 times a week. I was teaching three preps, working on two articles, and compiling my tenure dossier. Juggling an academic career and an undiagnosed illness was like … holding on for dear life, white-knuckling my way through each day, only to come home to collapse into an attack. These included light and sound sensitivity, whole-body pain attacks, nausea, dizziness, vertigo, aphasia, allodynia, and mild dystonia … the works. It was intense, to say the least.
Though I usually made it through the day, on some occasions I had to have a coworker drive me home as soon as I finished teaching. Once, I had an attack while teaching! I tried to keep it together (dumb). By the end of the 75 minutes I looked up to see lines of shaky chicken scratch zigzagging across the board, littered with misspellings and half words. Eventually, I had to explain to my students what was going on. I was worried they would call my chair and tell her I was drunk. This was the desperation, the fear of loosing the career I had worked so hard for, that led me to talk with my wonderful doctor about migraine diets. I also started taking a medication that is used to treat both vestibular migraines and anxiety. I was not messing around any more. Of course, now I understand what was going on was only partly migraine. It was a combination of MCAS and dysautonomia driving migraine and other symptoms.
But, I hadn’t even heard about MCAS or EDS, yet. I had seen many folks in the vestibular migraine forums advocate various food plans for migraine and I wanted to know what my doctor thought. She was dubious. But not because she doesn’t know much about food and nutrition. Quite the opposite; she’s a naturopath. She felt that a migraine diet that simply eliminated a whole host of foods because they are possible migraine triggers without knowing what my specific triggers are, would be like throwing darts in the dark and hoping to hit the bullseye. And, she worried that such a restrictive plan could eliminate important sources of nutrition from my diet.
Instead we did an IgG food sensitivities test and an elimination/challenge based on the foods that the test indicated might be problematic for me. This process led me to cut SOME of the foods a migraine diet would have asked me to eliminate (cheese, for example), but it allowed me to retain other foods (coffee!!!!). The key point here was the challenge portion of the process. IgG food sensitivity testing isn’t without controversy. Eliminating foods without a subsequent challenge based on such a test probably isn’t a good idea because it limits the diversity of your nutrition. Doing a challenge after elimination allows you to determine if the food is actually causing problems or if it is an artifact of the test. In my case, it turned out all the foods I eliminated were actually causing symptoms for me.
However, the dietary changes I made were not a miracle cure for my migraines or dizziness and vertigo (or MCAS/dysautonomia, as I would later find out). But, I could tell that the food changes were helping. I went from 3-4 migraines a week to one per week. That was a significant reduction, but migraines were still a major part of daily life. I also lost a lot of inflammation around my body. My feet didn’t look like my feet anymore! I could feel my tissues relax and become more pliable. But, the persistence of my pain and migraines after such a huge dietary change was part of what led me to suspect there was more going on for me. In my case, dietary changes were not a panacea. My migraines were MCAS driven and I was still not properly medicated at that point. Food can certainly be an MCAS trigger, but so can just about everything else!
The story of my food changes is rooted in desperation to feel and function better, not to loose weight. This may or may not be true for others. Regardless of the way you came to managing your chronic illness with food, I hope you consider using a Health at Every Size/Intuitive Eating paradigm to avoid the pitfalls of disordered patterns that can accompany health struggles like mine. In the next part of this series I will discuss the way this desperation can trigger perfectionism and lead to disordered patterns of eating. I will also attempt to clarify difference between a restrictive diet and a food plan for increased function. Stay tuned!
My whole life I have been trained to think about discipline, in regard to most things, as pushing yourself to do what you don’t want to do, what you don’t like to do, or what doesn’t feel good and natural. Another sense of discipline I have learned, particularly with respect to food, is restraint and self-denial. Being a disciplined person was about doing the hard thing or the unpleasant thing. I experienced discipline as an almost ascetic self-punishment.
And, I have been a very disciplined person, for the most part. You don’t finish a PhD without some discipline. Because of fatphobia, most of my doctors have remained completely oblivious to my self-discipline. IF they recognize it, they are awed by my “compliance.” OR they are flummoxed by the fact that I am so disciplined and yet still so fat. I am reconsidering my relationship to “discipline” in these months post-diagnosis. I have been for sometime, really.
I decided about ten years ago that I wanted to abandon the kind of self-discipline that was about punishing my body. I have a vivid memory of working out on my home elliptical machine with a kind of maniacal frenzy. My partner walked in and ask, “What are you DOING to yourself?!” Punishment, was the answer. I was trying to punish my body into being something it wasn’t. It was that kind of punishing attitude that led to a cartilage tear in my foot a few years earlier. I recognized the pattern re-emerging and stopped, luckily before I injured myself again.
So, though I have been avoiding that kind of discipline for a while, as I am trying to re-condition after having severely de-conditioned over the past two years, due to a massive mid-life flare of hEDS and MCAS, I find myself haunted by these past understandings of discipline.
To undermine my own propensity to punish my body for its failure to conform to social expectations, I have tried to rest when I need to rest and move when I am able to move. But unfortunately that wasn’t enough, at least not in the beginning. Because on days when I felt okay, I would move too much. And then I would experience a setback. So, I turned to an old habit of recording and documenting numbers, with the help of my PT. Dangerous territory for me as I can get a little obsessive about numbers. But I trusted myself not to get carried away (and I knew my partner would call me out if I got into the danger zone). My PT started me off by insisting I do NO MORE than 10 minutes of exercise a day. And then, I could increase by one minute per week IF I was doing okay with ten and not having an exercise induced flare.
So, five months later, I’m up to 24 minutes. It is slow going. But I am getting stronger. Still having flares here and there. I’m in one today from over exercise due to yesterday’s snow shoveling. But I’m learning a new kind of discipline. The discipline to treat my body with love and kindness, rather than falling back on old habits. The discipline to stop when it gets unpleasant, to rest rather than push through. I hope that once I regain my strength and stamina, I can stop carefully recording numbers and shift toward more joyful movement. Its been a trip. I still have voices in the back of my head suggesting I do more than I should, but I try to simply acknowledge that voice speaks from the past and return to my slow and steady pace in the present.
This process has made me really reconsider, why the hell do I even NEED discipline? Why do I think about my work, my life, my body in those terms at all. My dogs don’t. Children don’t (until we ruin them). They operate on intuition. The problem is my intuition sucks because it is SO disused from years of “discipline.” When we have been trained to have so little trust in our body’s instincts and rhythms, we stunt the growth of one of our greatest senses. My PT/re-conditioning process really needs to be about reconnecting with my intuition and learning to trust that I will make the right choices for my body in any given moment whether that choice is rest or movement. Today, it is rest.
I have been prettying up the blog, and making a facebook page the past couple days. But I am also struggling with being a bit more reactive. I’ve been itchy, rashy, neurologically glitchy, achy, and on the very early edge of migraine. It could be any number of things that triggered my mast cells to start leaking mediators (the chemicals MC’s contain that signal your immune system to activate). Maybe I was doing too much because I was feeling so good at the beginning for the week? Or, maybe it was the new PT exercises? Or, the change in my acetaminophen brand (more/different artificial colors)? Maybe the fact that I have gotten more time in on the recumbent bike this week than I have previously? Or maybe, if I’m being really honest, it might be publishing this blog. Truth be told, it’s probably all of the above overflowing my histamine bucket. But in this post I want to explore how weight-based social stigma and oppression impact Fat Zebra health.
Why would publishing a blog trigger my mast cells? First of all, I continue to be amazed at the things that can trigger mast cell activation! My weirdest ever trigger was the sun (seriously, WTF?!). Luckily that seems to only happen when I’m in a really reactive flare. But this blog? Really? Well, stress is a known MCAS trigger. But writing this blog isn’t that stressful. I’m on sabbatical, on my own timeline, no one is breathing down my neck. I can nap when I want to. So, it’s not that kind of stress I’m talking about, but the stress of social stigma. This is a particularly difficult kind of social stress that all people with chronic illness and disabilities face, but Fat Zebras get our own special kind of social stigma–weight bias and oppression.
Fat Zebras have to deal with weight stigma and its intersections with disability, gender, race, and other socially defined identities. For example, many fat people with disabilities report verbal abuse when using disabled parking spots. This is a new fear for me. I recently got a handicap placard to use, particularly in the winter when I am at risk of subluxation due to ice and snow. Of course, it is also helpful for saving spoons, too. But I do worry that onlookers will mistreat me because I don’t “look” disabled … just fat.
Another place Fat Zebras have to deal with weight oppression is during air travel. For me, airplane seats are hard to get into without twisting in dangerous ways for my EDS knees. I always worry about subluxation on the plane. But I also feel pressure to move quickly, which doesn’t leave time to be careful. But, these are Zebra stresses. Fat Zebra stresses look a little different. For example, a few years ago, when sitting in an aisle seat with the arm rest up, a flight attendant intentionally smashed the arm wrest down onto my leg causing bruising and pain rather than just asking me politely to put it down for take off. Lots of fat people experience assaults like this, but because of my EDS and MCAS I bruise more easily and pain can be a trigger for an acute attack due to what’s know as central sensitization.
That same year, on a flight to Hawaii, I was trapped for six hours next to a woman who has having nothing short of a full-blown meltdown about being seated next to a fat person (me). I am privileged by skin tone and gender expression, but I knew without those privileges the situation could have become violent as we have seen in recent years. The flight attendant had my back, brought me free drinks, and was kind. Despite that kindness, it was an inescapable shock which lead to anxiety about flying for me. Again, my privilege rescues me. I got therapy and these days I pay to fly first class tickets. It doesn’t guarantee I won’t be harassed or physically assaulted again, but it does help reduce the risk a bit. And the roomier seats make it a little easier on my joints getting in and out of the seats. Still EVERY time I fly, I struggle with anxiety about how I will be treated. I tend to internalize that stress, so sometimes I’m not even aware that I’m near panic until someone else, like my dear partner, points it out.
Another space in which Fat Zebras experience the stress of social stigma is online. A few years ago, after I published a couple of op-eds in online media, I received harassing emails and phone calls. I didn’t bother to read the comment sections! Sadly, just about any woman or non-binary person with a public online presence can count on harassment. The emails I received were simultaneously sexist, racist, and fatphobic. I even got one message that engaged with the main point of my article in a positive way to lure me into reading to the end where the author buried a “You’re fat.”
I KNEW that terrible stuff happens online. But knowing it intellectually and coping with it are two different things. I try to be resilient, but the reality is there is only so much abuse a person can take. And, I have received a LOT of weight-based abuse over the course of my forty-years as a fat child and a fat adult. Opening myself up to online abuse is not something I really want to take on.
But that fear of weight-based (and gender-, race-, and sexuality-based) oppression isn’t limited to strangers on the open internet. Even in the semi-private space of my FaceBook feed, I find myself apprehensive about posting weight-related articles. A while ago I hid friends who routinely engage in diet talk online to help me with my own recovery from diet culture. But I know they are still there. I don’t like that this is true, but I do worry what they will say or think. However, this past year as I’ve been dealing with health challenges, and the results of decades of medical bias and neglect, I’ve started to care less and less. Something has got to change.
So, posting this blog, though I am immensely excited about it, carries some social risk for me. Facing the possibility of weight bias from my friends and family is likely increasing my stress and contributing to mast cell activation in my body.
This is what it means to be a Fat Zebra. We deal with our illness. And on top of that, we must manage the way our illness is amplified by toxic stigmas that cut to the core of who we are and how we encounter the world. It’s bad enough to be sick. It is worse to be sick in a cultural environment that hates you for who you are.
It is not only fat stigma that has negative effects on health. Extensive research shows ways that other forms of oppression such as racism, heterosexism, cis-sexism, lead to elevated stress and poor long-term health. Fat Zebras with MCAS just show the effects of stress more immediately than non-zebras. As many in the EDS community like to say, we are just the proverbial canaries in the coal mine.
Yesterday, I went with my mom for her MRI. She has hEDS, too, and we think she subluxed her shoulder back in October. It isn’t getting better, so it was time to get a look at it. While I was waiting in the lobby trying to get some work done, the receptionists were talking about their New Year’s diets.
My God. That went on for an hour and twenty minutes uninterrupted. And even after it was interrupted, it continued off and on until I left 2 and half hours after I arrived. It was so striking to me how much of our work culture, particularly among women, is centered around this performative ritual. And. It is so incredibly disordered. They were drooling at the thought of cupcakes, lamenting their chosen restrictions. Nothing wrong with cupcakes. If you want one, eat one. I take mine vegan and gluten free! However, to be thinking about and talking about food so extensively … for hours on end, beyond meal time, does not demonstrate a good relationship with food. As someone who used to be similarly disordered, I tried to tune it out. But it was hard not to listen. And, frankly, it was triggering.
At one point, the worst offender in the diet talk got up and started spraying air freshener around the lobby. I was already irritated, but now I was literally irritated. I’m lucky I don’t react too badly to scent, but I felt my lungs start to tighten up. And I couldn’t just leave! Fortunately, I still had my Vog mask in my purse. So I got it out and put it on.
This is the first time I’ve used my mask for anything other than wildfire smoke and in such a public space. I thought about being embarrassed for a minute. But then I thought, “Who sprays air freshener in a MEDICAL office?!” Between 20% and 30% of the population is sensitive to scent–not just those with MCAS, but migraine sufferers, asthmatics, etc. So, I wore my mask proudly and gave the receptionist a little of the old stink eye. (Fitting, I think.) Given that I had been sitting there with out the mask for several hours, I hoped she would notice and make the connection. But I didn’t have the spoons to actually go over and advocate.
Giving the stink eye in my vog mask.
When it was time to go, I was relieved to leave that toxic place. Walking out into the cold January air was refreshing. It is disturbing that a place of healing was filled with so much toxicity. I would like to see the world of medicine evolve so that patients (and their care givers) are not assaulted with both metaphorical and chemical toxicity while seeking health and healing.
I am tired of this shit. And, I am tired of hesitating to post about it on Facebook. This isn’t just “fat-shaming” it is institutionalized fatphobia. And, its impact isn’t limited to self esteem. It is fucking life and death.
I have a genetic condition that has gone unrecognized most of my life in part because doctors have refused to see beyond my fat. My injuries have been dismissed. I have not gotten the treatment a thin person would.
What’s worse is that the reason I’m so fat is because I followed doctors’ advice and very dedicatedly dieted for years. Those of you who know me know how disciplined and responsible I am. That dieting ruined my metabolism. I have exercised to the point of injury/disability because nobody recognized my hypermobility. Exercising the way my doctors wanted me to has actually had a negative impact on my mobility and contributed to even more weight gain.
Now, I have to worry every doctor I see will refuse to treat me. And, unfortunately I see a lot of them because of my illness. I live in fear that I will need a life-saving surgery and someone will refuse to operate on me. I live in fear that I will be forced to have my stomach amputated before a doctor will treat me—effectively forcing me to swap one life threatening issue for another (bariatric surgery has a 10-15% mortality rate 8 years past surgery, and a 50% rebound rate).
I have known of multiple people personally and in my community who have experienced these threats—some of whom have died from medical neglect, just as this poor woman did. I am not being dramatic.
If you feel tempted to suggest that the solution to all this is simply to lose weight. I direct to you to Linda Bacon’s book: Health at Every Size: The Surprising Truth about Your Weight. I’m not going to explain it to you. Educate yourself.
But I will say that based on the science, I am no longer dieting because I don’t want to GAIN weight. And, that is the only thing dieting has done for me in the long term. I can certainly reduce my body size temporarily by forcing my body to eat itself. But I’m not interested in temporary. My life is, God willing, longer than 2 years. Instead of dieting, I am eating intuitively and eating real food. And, when I am physically able, I will build in movement that is safe for the extra stretchy body I have. But I don’t owe anyone, including my doctors, those commitments. They are mine alone. That is as much justification of my fatness as I am going to give here.
The REAL solution is for doctors to treat fat patients like human beings. And, for us to stand up and collectively refuse to accept medical neglect and abuse—after all 2/3rd of us are fat! This is unacceptable. It could be your mother, your neighbor, your friend. It could be you. It could be me. Let’s commit together that not one more fat person will die from medical neglect!
And, yes, I’m posting this after posting a pic of a donut! Shamelessly! 🍩
I wrote this before my official diagnosis with hEDS and posted it to facebook in March 2018. I’m reposting here as part of my diagnosis journey. My understanding of some things has changed since then. For example, my pain and migraines were MCAS driven and not actually due to fibromyalgia. This is a common misdiagnosis for EDS.
Most of you know I’ve been struggling. I’ve been sharing my food exploits in this space and giving periodic updates/pleas for referrals. I’ve been reluctant to do a more detailed update lately because things have gotten complicated. And as you see, it will take pages to explain it all. But, my friend inspired me this week to be more open. My illness is not a shame I have to carry alone. It has been hard, and I don’t have to keep that to myself. Maybe sharing my journey will help you, if you have been struggling silently. So the short update is that it continues to be rough going but we seem to be very, very slowly narrowing in on what appear to be several overlapping conditions: Mold illness, Fibromyalgia, and Hypermobility Spectrum Disorder (a connective tissue disease). Here’s the long update.
Mold Illness:
For the decade we lived in Kirkland, we lived in places that had mold problems ranging from moderate to severe. I was very sick with respiratory illness in the first year after moving back from Boston. I had a sort of mini-version of what I’ve been going through more recently. Lots of trips to lots of doctors. I sort of attributed it to mold, but moreso to stress—social/family life, grad school, etc. And, much of it mimicked past issues related to my asthma. What was new was chronic sinus congestion, but I had no detectable bacterial infections. After we moved out of the “mold house” into the condo I improved some, but started getting migraines, fatigue, weird rashes that didn’t respond to steroids or antibiotics. I didn’t connect the dots–I was busy being young and pretending I was a healthy twenty-something. Eventually, I lost much of my sense of smell. I got a bit better after moving to Spokane (very dry climate). For most folks, getting away from the mold is enough. But for some folks with compromised immune systems (me) or those of us who won the genetic lottery (also, maybe, me), that isn’t enough. I started talking to my PCP about subtle dizziness and fatigue 3 years ago (at the urging of a dear friend who has had her own dizzy struggle). As many of you know, my dizziness became acute in 2016. In 2017, I developed vestibular hypofunction and spiraled downward into chronic vestibular migraine, recurrent vertigo, brain fog, intense fatigue/malaise (flu-like, sometimes even with fever) and joint/muscle pain (constant and culminating in acute attacks). Once I started having pain and showing elevated inflammatory markers, my PCP decided we should treat for mold illness. I asked to be tested for autoimmune at that time. I started mold treatment in December. Initially, I got worse (more pain, fever). Then, I had about the best three weeks of the past two years. A few days I even had moments of complete stillness! I got excited! But alas, it was temporary. Symptoms crept back–pain, migraine, sinus congestion, and new things like numbness in my arms and legs, and some GI stuff no one wants to hear about. So, a few weeks ago we started a more aggressive treatment. More supplements, a nasty medication that is no fun to take. And, it is helping some, slowly, but surely. The numbness is mostly gone, GI issues are settling a bit. Unfortunately, the medication works by binding toxins … and it also binds my migraine medication … so I just kind of have to put up with migraines while I detox the mold. I am hopeful this will help and that we won’t have to throw away all our worldly possessions. Some people do because they become so sensitive to any spores lingering in their environment, they have start fresh. But I am also sure there is more going on than “just” the mold illness.
Fibromyalgia:
The autoimmune testing led me to a rheumatologist. You may remember my complaining about the wait-time. I liked the rheumy (that’s the lingo, fyi) a lot, at first. He explained three possibilities after reviewing my medical history: a) autoimmune connective tissue disease b) osteoarthritis (not likely) and c) a heritable connective tissue disease, called Ehlers-Danlos Syndrome (EDS), and a co-morbid condition called Mast Cell Activation Syndrome (MCAS). More on those later. I was expecting him to suggest fibromyalgia, but he never mentioned it. He ordered more elaborate blood work. Interestingly, and perhaps because I had already started mold treatment, my inflammatory markers had dropped significantly since the testing in December. I came back positive for two autoantibodies (where the body is attacking itself). One associated with autoimmune connective tissue disease and the other with antiphospholipid syndrome. I should mention all this ruling out happened by voicemail. But I don’t have clinical symptoms of either of those diseases. So, thankfully, we ruled them out. I went for a bone scan earlier this week and that ruled out osteoarthritis. So, true to form, I got a short voicemail from his office telling me I have fibromyalgia and chronic pain and to talk to my PCP if I had any additional questions. No mention of Ehlers Danlos or MCAS. At first I was angry. I believe fibromyalgia is real, but I felt like he was giving me the brush off because the evaluation for EDS is not widely understood and MCAS is complicated. After a few days sitting with it and reading about it, I think fibromyalgia is an accurate diagnosis of my symptoms, but it doesn’t tell us anything about their cause. That said, I’m comfortable enough with it to add it to my growing list of diagnoses. FM basically means I have pain everywhere (true), that the pain is located in my brain (something I suspected), that my brain is hypersensitive to stimuli (also true), and that I fatigue easily (fo sho). Though there was zero effort at patient education on the part of the diagnosing physician, I have found some great resources for FM patients online that I think will be helpful to me (happy to post links upon request). Much of what is recommended, I am already doing, I just need to be doing it more slowly (really).
This was the most exciting part of the meeting with the rheumatologist and subsequently the most disappointing part. If you are like I was, you’ve probably never heard of EDS. EDS is a connective tissue disease that stems from a genetic defect that makes the collagen in your body too stretchy. One way that can manifest is through extra bendy joints that are prone to dislocation (sound familiar, anyone?!). Though a fair number of folks with EDS don’t have hypermobile joints, joint bendiness is just the most visible symptom of overly stretchy collagen. Some people with EDS have super stretchy skin (but I don’t). Because collagen is the most common protein in your body, EDS can affect just about every system. It can lead to GI problems, problems with hernias and pelvic prolapse, varicose veins at a young age, skin healing problems, unexplained stretch marks, and in very rare cases it can lead to heart problems.
Apparently this is not normal
Joint hypermobility is not just a cool party trick, it can lead to micro-tears that lead to wide spread pain and early joint stiffening. EDS is rarely diagnosed, but many people think it is probably fairly common and that many people with fibromyalgia actually have undiagnosed EDS (I learned this from the wonderful EDS communities online not from this doctor). There are many types of EDS, but the most common is the hypermobility type. Recently they added a new diagnostic category called Hypermobility Spectrum Disorder that is just slightly less severe than EDS. I suspect that is where I fit. EDS/HSD was/is so exciting to me because it ties together almost my entire medical history. I’m approaching 40 and I have a VERY thick medical record with a bunch of stuff I thought was totally disconnected. But EDS (and MCAS) might actually explain almost all of it.I was born with my right foot turned in (actually a diagnostic sign in some types of EDS). I have rolled/twisted/sprained my ankle easily a dozen or more times. I have had flat feet since age 9. I have subluxed my right knee three times. After my last subluxation the orthopedist I saw commented that my knees hyperextend (also a diagnostic sign). My wrists were never the same after writing my dissertation (common enough, but likely exacerbated by my wrist hypermobility). My fingers are funky “double jointed” and get locked up while knitting or playing the guitar. I have double vision (which can be caused by the eye ligaments being too stretchy) and extreme near sightedness. Up until about 5 years ago, I could put my hands flat on the floor without bending my knees and easily reach well past the ends of my feet (super helpful when you are immobilized after a knee dislocation). A yoga instructor once nick-named me Gumby, I was so flexible. My brother has hypermobility in his shoulder/elbows, and my Dad has localized hypermobility in his toes. Both have had trouble with weird migraines and my dad has had some trouble with dizziness though not as severe as mine.
Because nobody wants to see my disembodied knees, here is a pic of knee hypermobility a lot like mine. Photo credit: http://danceinjuryrecovery.blogspot.com/2008/12/photos-of-hypermobility-elbow-and-knee.html
Now let me say a little about MCAS. I understand this part less well than I do EDS. But my understanding is that MCAS can occur when your immune system is on a hair trigger. It produces symptoms similar to a true allergy, but unlike allergies it isn’t always triggered by the same thing. For example, I have an allergy to cats. When ever I am around cats, I have an allergic reaction to them. With MCAS people can have an allergic reaction to something one day, and not be triggered by it the next. MCAS might explain the random fevers I’ve been having, the unexplained hives, food sensitivities, medication sensitivity, and the weird granuloma annulare I had a few years ago. AND, there is even some very limited research that shows folks with MCAS are susceptible to chronic biotoxin illness (mold, Lyme, etc). People who have MCAS sometimes produce too much tryptase which can cause migraines and flu-like malaise. I am lucky that I have never had a full-on anaphylactic reaction to anything (yet). But, for example, I remember once reacting badly to a latex glove and then not really ever again (though I avoid them). My dad also has a history of really weird allergies (some true allergies, and others that seemed to appear out of the blue and never again). He has had some reactions more on the anaphylactic side of things … weed-wacking circa 1997, Dad?! The challenge is that both EDS/HSD and MCAS are hard to objectively diagnose and there is no set/simple treatment. MCAS is particularly tricky because the reaction is so random, unless you test at the exact right moment, you may not catch it. There are some invasive tests they can do (bone marrow biopsy). But many are reluctant to go that route unless their symptoms are severe. After calling the medical assistant for my rheumatologist and asking why he settled on fibromyalgia and seems to have dropped EDS & MCAS, the medical assistant called back and offered to test for serum tryptase (as though she were doing me some kind of favor). She said this is the “test for the condition you spoke with the doctor about.” After that, I decided they are fired. If she can’t even say Ehlers-Danlos, or remember what my question was about, we are done. There is no “test” for EDS/HSD. There are semi-subjective criteria, which I meet, though the doctor wouldn’t know because he never went through the established diagnostic criteria with me. And apparently, I am only able to talk by phone message with his MA. Though EDS/HSD is genetic, they don’t know which genes cause the hypermobility type. There is no “single” test for any of it. I think what happened is that the doc diagnosed fibro because he is out of his depth with EDS and there is nothing he can do to treat it. Obviously, he was aware enough to suggest it as a diagnosis (since it fits so many of my symptoms) but he is not qualified to diagnosis and doesn’t want to admit it. So, I don’t have a diagnosis of EDS or MCAS. I’m not sure I ever will. But I am in a better place now than I was a year ago in that I have a really good clue about what to do to start treating my symptoms. Here are some things I’ve learned in getting this far:
Doctors don’t know a quarter as much as they seem like they do. They are generally VERY caring people who want to help you get better. But when they can’t, they feel helpless and are likely to blame you for your illness–especially if you fit the 3Fs: Fat, Female, and Forty. Though fibromyalgia is a real condition with objectively measurable features, I also suspect it is the new “hysteria.” If you are a woman in pain and they can’t figure out what is wrong with you you get dumped in that bucket. Luckily they know enough about chronic pain from researching fibromyalgia, the diagnosis may actually help us start to manage pain better.
Nobody understands chronic pain, who hasn’t had it. I don’t say this to chastise anyone around me. I have had wonderful support from my partner, friends, family, and co-workers. Most people are sympathetic. But they don’t really get it. I rarely go for sociobiological explanations, but I think there is likely some evolutionary explanation for that thing in us that prevents us from seeing as “real,” invisible illnesses. We wince at images of compound fractures on TV. We say, “Oh my! What happened?!” when we meet a friend on crutches. But we can’t see pain when it isn’t accompanied by some visible wound. This extends well beyond chronic pain to emotional pain and trauma. And in fact, there is a strong correlation between chronic pain, fibromyalgia, migraine and trauma histories. But we are not prisoners of our biology, we have the miraculous gift of growing beyond it. We need to do better first at empathizing with those in pain, and then making room for pain in daily life. I can tell you, that is my biggest struggle. My life, as it is structured, just doesn’t have ROOM for the practicalities of dealing with pain. And that makes the pain worse. Coping with pain would be so much easier if my life could flex around it to accommodate its unpredictability.
I have been in pain most of my life. It was just normal to me. So, I didn’t realize how bad it has been. My partner and I have talked a lot lately about the differences in our physical abilities over the 20+ years we have known one another. Though we are both fat, she has always had more strength and energy than me. I used to think the difference was my asthma. Now we have new lenses to look at that through. Admitting to myself how much pain I have ALWAYS been in, even since childhood, has been important. I have to recognize it to be able to imagine how to live differently. I have achieved a lot in my life. I have always been “goal oriented,” as my parents used to say. And I have achieved everything in my life while pushing myself, teeth literally gritted, through that pain. I say that NOT because I am proud of that, but because it is something I am being forced to unlearn. I thought I was pretty good at pacing myself–I’m good at resting. But I have a lot more to learn!
“Sometimes you have fleas and ticks”-something a friend passed on from one of her providers. Sometimes we get multiple shitty things. When I step back from my list of diagnoses, it is overwhelming: Asthma, Allergies, Migraine, Recurrent Vertigo, Fibromyalgia, Chronic Mold Illness, Joint hypermobility… more TBD?! On the other hand, the title of the bible on MCAS “Never Bet Against Occam” also resonates. The argument Dr. Afrin makes in his book is that Occam’s dictum, that the simple answer is the most likely to be correct, applies to those of us with lots of random illnesses in this way: What’s simpler, that a person has five or six completely different diseases or that they have five or six different symptoms of the same underlying disease? The quest I’m on is identifying that underlying cause. But I don’t have to wait for a diagnosis to start working on the symptoms. And, taking an educated guess that HSD/MCAS are the root of my problem is not dangerous as the treatment is basically doing all the things I’m already doing (but being even more careful about my joints/stabilization, and going very, very slowly). And, I can be glad to know all the things I am now sure I don’t have: MS, a brain tumor, diabetes, high blood pressure, chiari malformation, acoustic neuroma, autoimmune disease, osteoarthritis, or bone cancer. Praise goddess for that!
Now, I am very medically literate. I have a terminal degree in my field. I’m affluent. I have a flexible job and a great support system. So, I am not going to just drop this. But I am heart broken for all the people who are in pain, and who would be confused and scared at every step of the way or who would be permanently demoralized by the automatons calling and leaving life-altering diagnoses on voicemail without any patient education or proposed treatment. This system HAS to change. This should not be the standard of care in this country or any other. It doesn’t even meet the basic definition of the word “care.” If you are like me, and you have all this medical privilege, PLEASE hold your providers accountable on behalf of those who had to save money for a year to see a doctor only to be drop-kicked back to their PCP. I will be writing the practice manager at my rheumatologist’s office to let them know they are fired and why.
If you are in pain, no matter what type, I see you.
