Voices Across America

My Patient Story

Kaitlin

State: Pennsylvania
Congressional District: PA17

Diseases

Chronic Pain, Gastrointestinal Disease, Genetic Disease, Immune Disease, Lung Disease, Mental Health, Neurological Disease, Rare Disease, Reproductive Disease, Skin Disease, Urological Disease

Issues and Challenges

Kaitlin has encountered: Access to Expert Providers, Copay Issues, Insurance Issues, Premium Payments

My Story

I have Ehlers-Danlos Syndrome, RA, Crohn’s Disease, Interstitial Cystitis, pudendal neuralgia, MCAS, dysautonomia, endometriosis, and more. I was never a “normal” kid. I was born with hip dysplasia and a fractured femur. I grew up with some many “mild but weird” issues and it became something I joked about to in order cope and to get laughs from friends. I had scoliosis, many dental issues, trouble walking and with fine motor skills, TMJ, Osgood Schlatter in my knees, and tendonitis in nearly every joint. I had a couple of wrist surgeries in my early and mid-teens that stopped me from playing instruments and I turned theatre. I also began having severe neck pain at age 13 that kept me home from school 2-3 days a week for several years. “Nothing was wrong,” but the testing at the time was not geared toward the common problems EDS-ers have, nor was there much awareness about the disorder.

Pain was a huge theme of my teens year on. I took pride in it even as I feared it. I could “take a lot.” And I did. I wrote poetry about pain (and I still do). And I began acting, particularly in Shakespeare, as I felt that the words gave me the ability to be bigger than I was in life.

My health worsened, yet I completed degrees in English and Nursing and a Master’s. I began having trouble sitting and developed bladder problems. But I took up yoga and was so happy to be told I was “good” at something athletic.

Finally, in 2016, following a trip to Peru, I became severely ill and began accruing pain and injuries rapidly. My life became a blur of pain. Doctors, tests, medications, procedures, and having to leave my career. In 2017, the diagnoses began to fall into place. But I was still very sick. I had to sell my house, and lost most of my life-savings on medical treatment. I eventually, after 2.5 years, won SSDI, and later Medicaid.

I learned a lot about myself during those years. If I could spend a couple of minutes upright and not screaming, I was relieved. I got back into theatre and poetry. I met the love of my life and we run a theatre company together. He doesn’t view me as a burden. I’m on a host of medications and procedures and have had several surgeries.

But amidst it all, I find acceptance through community and from art. My body is not just where “I” live. It truly is part of me. My illnesses are a key part of me! And that is perfectly beautiful.

My Motivation and Inspiration

I am inspired by art and by advocacy. In art, I act and direct in classical theatre as my body allows. Even in this time of isolation, I’ve been training in the field of intimacy direction for stage. This field grew out of the #MeToo movement and is aimed at protecting theatre practitioners through boundaries and consent, and also thereby creating better art! I also write poetry, which is inevitably informed by pain. I model as my body permits (even if I pay for a shoot with 3 days in bed), which celebrates a body that is often incredibly unruly:

I am inspired to advocate for the agency and equality of chronically ill and disabled comrades! We often are made to feel like burdens. We hate to rely on others in a culture that so highly values independence and individual achievement. I want to allow for the perspective that asking for and needing help can be a gift to our loved ones and communities, as it allows others to show their love and care. Relationships don’t have to be transactional. People aren’t machines. And I hope we can remind ourselves that we do not need to “benefit” our significant other(s), friends, or family to deserve care.

I also advocate strongly for marriage equality in the disabled community. Something that doesn’t affect us all, nor does it affect us all equally, which makes the topic confusing or even divisive. For married couples, strict income limits and asset caps prevent marriage by triggering these that result in loss of healthcare and/ or government assistance, sometimes entirely. Discouraging disabled people from marrying, or worse, incentivizing them to divorce may not be the intent of Social Security rules, but it is certainly the practical effect.

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