by Kella Hanna-Wayne

My therapist once asked me, “What is it like, to have such a constant detailed awareness of everything happening around you and everything in your body? With how much pain you have, that must be scary to experience all of it in such vivid detail. When do you rest?”

I have a connective tissue disorder called Ehlers-Danlos Syndrome, which to some extent affects every system in my body. Its primary symptom is pain: My joints are unstable so I injure easily, I am highly susceptible to repetitive stress syndrome, and my muscles fatigue quickly. To compensate for the instability, my muscles lock down and try to use tension to replace the function of the connective tissue. I have pain in 10-20 different places in my body at any given moment, ranging from annoying to debilitating depending on the day. Ehlers Danlos Syndrome, or EDS for short, can cause digestion issues, fragile skin, wonky blood pressure, and increased anxiety in addition to chronic pain.

I am also a Gifted Adult. I had my first existential crisis when i was three years old, I excelled in school without realizing I was doing so, and I connected more with my teachers than my classmates. As an adult, I dropped out of college, skipped getting a degree because it seemed unnecessary and expensive, and became a freelance writer without one. But I experience downsides of giftedness too: perfectionism, hyper-awareness, and a thorough understanding of the potential consequences of a small event. My brain is both a hindrance and an advantage in managing my disability.

 

Symptom Tracking

With a syndrome as complex as EDS, it can be hard to determine cause vs effect. But my hypersensitivity and intense awareness mean that I can easily itemize every spot on my body that is in pain, the quality of the pain, and the movements that trigger it.

As easy as flipping a switch, I can mentally adjust my body movements to avoid a pain or injury trigger, even if I have two or three adjustments I need to keep track of; whereas, usually people will forget their injury and revert to their normal movements, flaring up their pain levels every time they do.

Unfortunately, taking my focus off of my pain to avoid constant misery takes a massive amount of energy. For someone who’s default response is to analyze everything, it’s hard to learn that no amount of analyzation will decrease your pain level, and in fact, the opposite is usually true.

I can sometimes track the source of a structural misalignment by imagining the pathways of my muscles and correct the problem on my own by manipulating my body in the direction that feels right. I recently had a recurring issue where my second rib would get stuck in the inhale position. Despite frequent massages and corrections, the issue would return and my physical therapist had no explanations as to why. I resolved the issue myself by tuning into my body’s responses to the rib moving, discovering the tense muscle at the back of my neck that was preventing the rib from descending completely, and focusing treatment on reducing that tension.

I can track my treatments and their corresponding health issues, and have an accurate sense of whether they’re helping or not. I can discern what nutrition is beneficial to me and what isn’t, even when it’s counterintuitive to the diets of most healthy people. I can compare the levels of pain I felt in my problem areas two years ago to how they feel today.

As useful as these skills are, having so much processing power dedicated to pain management reduces my focus for other tasks significantly.

 

Pain Brain

If I sustain a new injury, it is never just my body that needs recovery. Healing requires a lot of physical and mental resources, and high levels of pain can mess with your brain chemistry. When a pulled muscle in my arm lead to severe inflammation, not only was I unable to do anything that required two hands, my brain was completely zapped as well. I couldn’t concentrate or get my creative juices flowing. It was like my mind was full of static electricity, snapping and popping without producing anything useful.  

Pain can affect your cognitive ability on a smaller scale too. I’m so used to instantaneous access to a database of information and the ability to zoom out to look at the overarching patterns to assist my work that it’s confusing and disorienting to suddenly lose that ability when I have a bad pain day. Most people develop systems to help them remember what they need at the store or what time they have to leave, but I count on my mind to keep track of that for me without any external support. When pain takes away that ability, it is even harder for me to keep track of details than for the average person, because I never created those safety nets in the first place.  

 

Fearing the Worst

Anxiety is common in both EDS and giftedness, for different reasons. EDS causes difficulties regulating automatic systems in the body, like the nervous system; whereas being gifted means you are able to fully comprehend the wide range of potential outcomes in any given situation, particularly the bad ones. When these sources of anxiety are added to an incurable accident prone syndrome and injuries that take years to heal, it is very difficult not to dwell on the possibility of accumulating injuries in every part of my body over the next 20 years and a never-ending cycle of pain. My anxiety paired with my big-picture brain enables me to take any new physical issue and extrapolate it out to the worst possible, and not necessarily unlikely, outcomes.

I’ve sustained four injuries in the last five years, all of which I manage each day. Each time I acquire a new one and discover the new limitations it brings, I am terrified of the long term consequences. When problems in my wrists prevented my playing guitar, I could not be consoled over the loss, because I knew that this new pain would be just as long-lasting and difficult to treat as my sacrum that was already six months into treatment with almost no improvement.

You cannot completely guard against accidents. It is impossible to never make mistakes in the way I use my body, and because my body naturally functions in a way that is damaging, even the simplest motion can cause a long-term problem. The sheer number of things that could go wrong with my body is completely overwhelming.

 

Dismissive Doctors

Despite my high degree of accuracy pinpointing the source of my own health problems, I encounter difficulty communicating this information to medical health professionals who haven’t worked with me long term.

Doctors aren’t used to patients that can accurately assess themselves, and many patients overreact to basic health problems as if they are serious. Doctors usually don’t believe me when I tell them that my anti-depressants are definitely causing me to wake up two hours early every day, or that my sinus issues are not due to allergies or dryness. My concerns are frequently dismissed in favor of more common textbook explanations. It’s only when a medical health professional has seen me regularly for months that they begin to trust my judgement.

 

More Than Meets the Eye

If you are an able-bodied person, there is a good chance there’s a lot you don’t know about the obstacles people with disabilities face, like accessibility, discrimination, and access to healthcare. That’s not a personal failing on your part. It’s just part of how our society is structured.

Disabilities come in an incredibly diverse range of manifestations. There are people like me, whose disabilities are invisible, making it easy to assume that my youth implies physical health and strength, which can lead to a lot of judgement when I use the disability bus-seats, or don’t help carry anything into the house. There are people whose disabilities are always visible who are then incorrectly assumed to be cognitively disabled, too, and treated with condescension. Giftedness and disability occur simultaneously, but when people are already distracted by distinct visible differences, they don’t anticipate that your mind could be exceptional too.

But as gifted people, disabled or not, we are highly capable of adapting to new information. We can integrate knowledge of different types of disabilities, their limitations, and their needed accommodations, by just reading an article about their condition a single time. We have a great deal of potential to empathize, listen, and learn from people with disabilities; to absorb and redistribute a wealth of knowledge about disability to other people; and to become advocates in our communities for an underrepresented group. I make sure to use my gifts to support, humanize, and fight for people with disabilities, or whoever needs it, to the best of my ability.

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