Unknown unknowns

questionHey all. Thanks for finding this blog in a sea of links and millions of other distractions. Your attention and time are meaningful.

I have been wanting to launch a blog for a while, but only was going to do it if I thought I could write about something that could impact change or comfort others. Being sick is no fun, but I am glad it has given me the opportunity to do that. Those of you who were directed here via Facebook probably noticed the frame on my profile picture that changed today. It is in honor of Invisible Disabilities Awareness Week,  which aims to spread awareness of individuals who are afflicted with largely unseeable chronic diseases and disabilities. This is a cause close to my heart because I am one of those people.

The summer after my Junior year of college, I got sick. Almost out of nowhere, I was struck by pain and fatigue like I had never felt before. I could barely get out of bed because my entire body felt like it was made out of lead. I could barely climb the stairs to my second-floor apartment without collapsing. My body ached like I had fallen down a flight of stairs onto concrete. Despite the fact that I was on summer break and was eating well, sleeping enough, making more money than I’d ever had before, and dating a guy I loved a lot, I felt like I was dying.

Since that summer I’ve been to a lot of doctors. So far, none of them have been able to figure out what’s wrong with me (almost a year and a half later). To be honest,  I don’t blame most of them anymore. If you look up fatigue, muscle soreness, joint pain, and faintness on WebMD, you’ll probably get a hundred results for possible conditions. If you come to a doctor presenting these symptoms, most general practitioners (GPs) will write you a prescription for anxiety medications, tell you there’s not much else they can do, and send you on your way. It’s been a frustrating (and expensive) experience, but I am slowly learning to be more patient with my medical team, and that one of my chief responsibilities as a chronic illness patient is to manage my own care. I’ve heard other sick people sum it up as such: “you are your doctor’s boss, not the other way around.”

As someone with persistent but very general symptoms, I’ve had to spearhead my own care. After my boyfriend Josh helped me figure out that some of my diet may be worsening my symptoms, I kept a detailed food journal for weeks: recording what I ate for meals and where I was on the pain scale right after. From the data, there was a definite correlation between my diet and pain flares. The first doctor I brought this information to told me there was “NO WAY” it was food allergies; it was fibromyalgia and at 22, I had better get used to a lifetime of pain.

Let’s just say I was dissatisfied with this answer (I spent a good amount of time rage-crying about that). But soon after, I found an allergist and got tested in spite of my doctor’s wishes. Turns out I was severely allergic to sunflower seed oil and mildly allergic to a laundry list of other foods. If you think being allergic to sunflower seed oil isn’t a big deal, look in your pantry and start reading the ingredients on the back of your food–sunflower oil is pretty much in everything. After making this discovery and trying to cut all problem foods out of my diet (which is pretty freaking hard, let me tell you!), I started to feel a lot better. My energy was mostly back, and my pain went from a constant 6/10 to a bearable 3. I thought I had solved the puzzle.

Then my joints started to hurt again, and the overall pain came back. I always have had joint issues, like wrists and ankles prone to sprains, and perpetually stiff knees, but this was much worse. My joints took on a constant inflamed ache, even on my allergen-free diet.  Unfortunately, I knew that this meant that food allergies were not the underlying cause of my pain, and that I had to keep pursuing a diagnosis.

I put this to rest until I injured myself at the gym, where I had been trying to get back into a rhythm of staying active. I sprained my lower back and my muscles had spasmed so tightly I couldn’t stand straight. My back curved off to one side, like temporary scoliosis. This put me out of work for days, and I went to see a chiropractor for relief. Making conversation, I told him about my health problems. He asked if I had ever heard of Ehlers-Danlos Syndrome (EDS). I told him I had; it was a condition I had researched early on in my journey but had not thought about in a long time. He examined my hips, which were loose in their sockets, and my extremely hypermobile arms. “I’d look into it,” he said.

I hadn’t considered this disease in so long, but as soon as I began to research it a lightbulb went off in my mind. The symptoms I saw as I read about this condition were identical to my own: hypermobile joints, joint pain, velvety/rubbery skin, musculoskeletal ache, often weird heart issues, extreme fatigue. All of it perfectly described me. I won’t creep you all out with too many pictures, but here’s one as evidence.


That’s how stretchy my skin is. Not normal.

So that’s where I’m at right now. I’m no doctor, but it seems that I meet the diagnostic criteria for a incurable, rare disease (affecting 1 in 5,000 people). It’s a scary thought to be in my 20s and thinking of a life where I may always have trouble keeping up with the people around me. I may have health complications that others my age will likely not experience until decades later. When your body’s entire production of connective tissue is messed up, that’s really bad — connective tissue is everywhere from your joints, to your GI tract, to your brain.

If I do have EDS I will be suffering from a disease that no one can see and few will understand, but at least I’ll know the beast I’m up against. I currently have several medical tests in the works, even seeing an orthopedic surgeon who is very experienced in evaluating individuals for EDS. Hopefully I will have some answers soon. But in the meantime I’m trying to fight an enemy I can’t see or identify — an unknown unknown. And as my Digital Signal Processing professor said in engineering school (I’m paraphrasing, of course), if you are stuck with unknown unknowns, you’re kind of screwed. 

So I may never be cured of whatever this is that I have, but hopefully soon I’ll be able to name it. To understand it. In the meantime I am trying to use my journey to shed some light into the experiences of chronic illness patients, to open up conversations about the nature of healthcare, and to hopefully make others feel less alone.

Keep me and others like me in your prayers as we fight through our ordinary tasks each day while pursuing a diagnosis. If you yourself suffer from chronic illness, know that you are not alone. If you are healthy, work to encourage your chronically-ill loved ones and destigmatize invisible illnesses.

If you’ve made it to this point in my post, thanks for reading! My future posts won’t be this long, but my journey through illness so far was hard to condense down to just a few paragraphs.

Stay tuned for updates on my progress, and other topics I feel strongly about as a chronically ill person. It’s a conversation worth having.

3 thoughts on “Unknown unknowns

Add yours

  1. Identifying the thing will empower you so much. Fingers crossed that you get definitive answers soon. Don’t quit fighting for them. They’re out there, they’re just exhausting to pursue. Thanks for sharing.

    Liked by 1 person

  2. “Unknown Unknowns…” said the engineer.. ha. Thanks for sharing your story Aubrey! Looking forward to more of your posts into the blogosphere. There are people out there who are being encouraged by these posts, whether you know it or not, so keep it up!

    Liked by 1 person

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