When I was thirteen years old, I saw a rheumatologist after months of white-hot pain and severe fatigue. The doctor took my elbow between her hands, bent it into full hyperextension, and said, “You have Ehlers-Danlos syndrome.”
My First Diagnosis
This was my first official diagnosis, and it came with relief, and confusion, and pain. But there in her office, I became aware of how I was born with faulty collagen and how all the tissue in my body was too loose, as characteristic of Ehlers-Danlos syndrome (hEDS). I went on to learn how it affected my joints and caused chronic pain, and went from slipping into ballet shoes to strapping on bilateral ankle braces.
I learned to be “flexible” with my hypermobility and the unpredictability that comes with it. Yet, I wasn’t aware of how many other conditions, similarly related to hEDS, I would be diagnosed with in the following decade. Even more importantly, I had not realized how many other disabled people find themselves with more than one diagnosis.
Life With Multiple Diagnoses
As of right now, the list of my official diagnoses are as follows: Ehlers-Danlos syndrome (hypermobility), postural orthostatic tachycardia syndrome (POTS) and dysautonomia, narcolepsy with cataplexy, cyclic vomiting syndrome, mitral valve prolapse, migraines, reflux, and ulcerative colitis.
In the past, I was also diagnosed with complex regional pain syndrome and suspected Raynaud’s syndrome. Whenever I discuss my disability, I fall into the habit of only naming hEDS as my primary condition. The reality, however, is that all of these diagnoses distinctly influence the way I function on a daily basis.
EDS alone, depending on the type and severity, will not only affect our joints, but our organs, heart, skin, teeth, GI tract, and more. The different systems of our bodies are meant to work cohesively with one another. In disabled bodies, though, the communication between these systems is required to adapt to a new vocabulary to address each individual issue that arises.
Many disabled and chronically ill people are labeled as having a primary disorder (for me, hEDS) and the rest are seen as comorbidities, which is a debated label in the medical field. It’s meant to define the secondary health conditions that are seen alongside a patient’s primary debilitating illness.
With Ehlers-Danlos syndrome, there are many related conditions that buddy up with this connective tissue disorder. I like to picture them as linking elbows—one system of the body teaching the others this new language of chronic pain.
Finding Online Support
In the beginning stages after my hEDS diagnosis, I found myself in different online support groups. We would post about our pain, complain about doctors and inaccessibility. We’d plan meet-ups and ask for advice on ring splints, neck braces, wheelchairs.
The other major component of these online groups was the posts that almost always started with, “Does anybody else experience this?” The posts would go on to describe some unusual phenomenon—running into walls, being unable to focus our eyes, feeling as though a match was being held up to our skin but the skin’s surface was slick and icy—and in the comments, a chorus of, “Yes! I have that, too!”
We didn’t have a reason or a solution for these strange expressions of pain, but we knew that somehow they came with the other, unknown parts of this diagnosis. Our bodies are more complex than one label can define.
Dealing With Chronic Pain Skepticism
Recently, I saw a sleep specialist who diagnosed me with narcolepsy with cataplexy. I sat in his office, waiting to learn why my body felt out of order, much like I did those ten years ago with the rheumatologist.
Before handing me this new diagnosis, he ran his finger down the patient paperwork I had completed in the lobby. On patient forms, they provide a small, squished box to list your other medical conditions.
Mine was filled, overflowing, the messy script looping into the margins of the other questions. The doctor looked up over his glasses and gave me a small smile, said, “You’ve got quite the collection.”
I felt a familiar self-doubt course through my mind. Was I too much to take on with all of these diagnoses? Would he know one of them, or none? He definitely wouldn’t recognize them all. Then, the worst worry: What if he thought I wanted to collect these diagnoses? That I wanted to be sick?
I’d experienced this before—people who didn’t think it was possible for me to have so many different and complex diagnoses. There were also, of course, the people who would take in my list and squint their eyes at my frame as if trying to see cracks in my skin—as if I were about to burst in front of them.
Truthfully, I understand this confusion, and I am often unable to separate the symptoms of one chronic condition from another. On a narcolepsy support group, I shared my diagnosis, my concerns, and asked if others also had hEDS, POTS, etc.
One of the members, a man diagnosed with narcolepsy, responded by saying that my other disabilities caused fatigue. For this reason, he said I shouldn’t take this new diagnosis of narcolepsy with cataplexy to heart.
The Importance of Being Believed
At first, I agreed—how could I tell if I was tired from joint fatigue or if the signals being sent to my brain during the day were miswired? Then, I realized how dismissive this comment was. If I already had disabilities that caused fatigue, did that really mean I couldn’t have a sleep disorder as well?
Luckily, my sleep doctor saw the many ways in which the body’s systems connect. Like touching dominoes, once one falls, the others follow. For a connective tissue disorder like EDS, which impacts the way my entire body is built, it makes sense that there would be many other complications. After all, the foundation of my body is very lax, not bound tightly enough to hold everything else together.
However, not all medical professionals—or even other people with shared diagnoses—believe in giving a new diagnosis with so many other bodily factors in play. Frequently, I’ve noticed from my experiences and from those within the disability community that the more of a “collection” of diagnoses we have, the less likely we are believed or taken seriously—especially for disorders that are not as well-known.
Yet, the different pains and faults and missteps we feel within our bodies are all ways to communicate that something is not quite right. A diagnosis—or two, or ten—can give a name to that pain. In turn, it becomes a little less frightening and a little easier to understand.
Share Your List
So, perhaps there are people who believe that living with multiple disabilities is akin to collecting stamps, or stickers, or rocks. We do not seek out the syndromes, disorders, illnesses, and diagnoses, and shouldn’t have to shy away from sharing our lists. We take them, polish them like silver. They are shiny, a little heavy, but they are real—they need to be seen, and believed.
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I can’t believe how many tears were shed whilst reading this article… I have felt so along amongst my personal circle, as I have more diagnoses than any of them combined. Cyclic vomiting syndrome included, so I really feel you with having other conditions triggering the CVS, having everything truly walk hand in hand…. thank you for posting exactly what I needed, and Im sure others as well.