Coping with Chronicity

By Renee Lahav

As Disability Awareness Month comes to a close, it is important to acknowledge that awareness does not simply mean acknowledging our existence. It means hearing our stories, our struggles, and standing in solidarity with us. The stories of the disabled are complex and vibrant, each with their own unique touch. The story I’m sharing today is just one fraction of the disabled experience. It does not speak for every person’s experience, even people with the same disability. The point of my story is to capture a glimpse into the life and journey of a disabled person and the role my disabled identity plays in my world.

I was born with a genetic disorder called Ehlers-Danlos Syndrome (EDS). It is a rare disease, affecting only one in two-thousand people. I am the only person in my family with this illness, taking everyone by surprise. Ehlers-Danlos Syndrome is a connective tissue disorder, meaning all the little parts of my body that hold things together don’t work well. The reason is because my body cannot process collagen, a chemical which makes up 30% of the body’s protein. When your body can’t process a lot of its protein, many things start to break down.  I have thin, stretchy skin that bruises easily. My heart is weak, and I’m frequently sick to my stomach. I am extremely flexible, which causes my joints to constantly shift and dislocate. As a result, I am almost always in pain and extremely tired. Coupled with migraines and a general sense of confusion, my sense of balance and awareness of where I am in space is affected, causing me to frequently get involved in accidents. In short, Ehlers-Danlos affects nearly every part of the body and is almost impossible to ignore.

 EDS  is an illness that gets worse over time and typically comes in three phases. The first typically lasts throughout childhood, referred to as the “hypermobility phase.” During this time, kids often show off the cool tricks they can do and don’t experience much pain. Over time, their connective tissue begins to fail, leading people into the “pain phase.” The pain phase typically lasts for most of a person’s adult life, and as implied by the name, involves a lot of pain. Each passing day your joints get a little looser, the symptoms get a little worse, and the pain slowly becomes unbearable. Near the end of adult life, the deterioration leaves people to transition towards the “stiffness phase.” In this final phase, people are left in so much pain that they are unable to move.

EDS is an incredibly complex disorder which comes with a lot of hurdles. I had been accused by doctors more than once of faking it, was misdiagnosed five different times, and have had two different surgeries in an attempt to alleviate the pain. I went through intensive chiropractic therapy, massage therapy, and extensive medicinal treatment. I took medication after medication, each affecting my body in radically different ways. I tried all the diets, all the exercises, and even some of the alternative medicines. Nothing ever seemed to work. Perhaps I really was faking it, and a positive state of mind would fix my problem. Wrong. Maybe if I tried this one other thing, I would feel better. Wrong. If I ignore it hard enough, I can continue on with my life as normal. Unfortunately, also wrong.

My life was radically changed by my disability in more ways than I ever expected. The first was obviously from my symptoms. Each day I got a bit worse and a bit more aware of my body. My symptoms have caused me a great deal of stress but have surprisingly given me a sense of clarity. Being constantly reminded of my mortality has done wonders on my appreciation of the world I live in. The smile of strangers and the touch of raindrops have never felt so intense and I was far more present than ever before. Second, I have lost the fear holding me back from achieving my dreams. The impending doom of my health has been a wonderful motivator, as the thought of “If I don’t do it now, I won’t ever be able to,” pushes me through. Lastly, I am more aware of how precious my time is. I refuse to let anyone or anything ruin the precious moments I still have to feel relatively okay. This has pushed me to end toxic relationships and actively pursue the life I want. My symptoms, while extremely painful, are a reminder that I am alive. This condition is just short of a living hell, but I cannot deny the good it has done to my outlook on the world.

While my view of the world drastically changed, I didn’t realize that the world would see me differently, too. When I claimed the identity of “disabled,” I learned that the society I live in made erasing my existence its top priority.  Nearly half the buildings I encountered were not accessible and the people inside did not seem to want me there. I’ve often had folks stare at me and my cane, openly pity me, and make assumptions of what I can and can’t do. The pressure of an able-bodied world began to make me feel like a nuisance and that I simply needed to “buck up.”  And so, I spent a lot of my time pretending to be able-bodied, trying to convince myself that my doctors were right and I really was faking it. I never complained about my pain, put on my brave face, and pushed myself to do things I knew I could not. Naturally, my act could not be maintained for long, and I began to lose my disguise.

I had to come to an understanding that an able-bodied society may not ever be able to accept me as I am, but I had operated under the assumption that at least my personal relationships would not be harmed. Unfortunately, I was wrong about that, too. Some of the closest people to me were not able to handle my illness and began to treat me in an entirely new way. The most common stances I noticed was either one of pity or irritation. My pity party usually consisted of phrases such as “Oh, you poor thing,” “You’re so brave,” and my personal favorite, “At least you’re cute!” The irritated, on the other hand, often felt like I had become a burden to be friends with and begged for my illness to end so I could be ‘fun’ again. When I became a perceived tragedy, I was no longer a friend and instead a job. Many of the people I loved gave up and decided to quit this job. Some chose to stick around, but our interactions were now tainted with resentment. The death of some of my closest relationships was the part of this illness that hurt the most.

 It is important to note that not all of the people in my life were terrible about my disability. The news strengthened the relationships between me and my father, my best friends, and even my mentors. The one thing these people had in common was that they chose to see me as strong instead of a sob-story waiting to happen. They saw what great potential I had to make the world a better place, regardless of my health. I am eternally grateful for these people for supporting me through my illness and never giving up on me. However, I one day hope to live in a world where acceptance of the disabled is considered a standard instead of an act of kindness. 

Even with the support of loved ones, I had begun to truly understand that no able-bodied person can provide the affirmation I needed because they do not know what it is like to watch your body fail. To cope with a life-long disability, I was advised by my therapist to find a support-group. The idea was that if I found people with shared experiences, I could finally find comfort in the people who truly understood what I was going through. The idea was fantastic in theory, but in practice I was extremely anxious searching for a group because my queer identity made things complicated. A space that was homophobic or transphobic would never be a place I could be vulnerable about my disabled identity. To be that open with people who could not accept my queerness was not an option. And so, I avoided seeking a support group for some time. I tried to find support in my other identities by attending queer events around town. Every time I went out, I would end up meeting one new queer person with a disability. After a while, I had met so many people like me that an idea popped into my head. I chatted with a few of my new queer disabled friends who encouraged me to make a group. That night, I went home and immediately set one up on Facebook. I posted the new group on a few queer pages, looking to gather people in Austin’s first queer disabled community. And thus, Chronically Queer was born. After only two months, our group now holds space for one-hundred different people, each with their own unique queer and disabled experience.

We, the disabled queers, came together and created our own community. My one-person-band became a team effort by adding three other dedicated administrators and we got to work. We were all determined to create a space where we could all thrive and find support with one another. Our forum flourished, our events were healing, and our community has helped bring accessibility and awareness to the wider Austin LGBTQIA+communities. Our current efforts are focused towards partnering with non-profit organizations, including allgo, to hold discussions surrounding disabled identities and how our communities can advocate for the needs of our disabled friends. Together, we can move towards a world that we all can participate in, a space where we all have the chance to thrive.

 Out of a simple desire to find acceptance, I was able to create a home for both myself and the people who are now so near and dear to my heart. In our community, not a single person has to feel unwanted, broken, or unseen. We all can come exactly as we are and know we will be loved and accepted. I had finally found my home, and for once the only pain I felt was in my back.

It has taken me a long time to feel at home in this disabled body and there are still many of us who have not yet defined what disability means to them. For our friends who are still searching, learning, and listening, I encourage you to join us at allgo on the 29th at 6:30 PM to discuss Disability as an Identity

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