Living With Pain, IC, and Autism in a Broken System
Diseases
Chronic Pain, Urological Disease
Issues and Challenges
Hotaru has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Medicare / Medicaid Issues, Mental Health Access, Rare / Underserved Disease, Abuse (Mental, Physical, Elder), Disability, Financial Assistance, Food Insecurity, Gaslighting, Invisible Illness, Job Insecurity / Loss, Legal, Prior Authorization, Suicide / Self-harm
My Story
I worked in retail for 10 years of my life, and my last job was exceptionally brutal. It caused me to acquire cervical radiculopathy and to finally realize that I was autistic.
In April 2021, I got an epidural steroid injection in my neck. The procedure wasn't explained to me properly, and the surgeon, instead of looking at my MRI, asked me where I felt pain and marked my neck with a Sharpie before the procedure. Two weeks later, I started having pain in my kidney area. I thought my interstitial cystitis was acting up. I went to the hospital, told them I had IC, but they still said that all I had was a UTI. IC is apparently so rare that doctors don't know that IC patients' urine always looks like that.
After the pain got worse in my back, being unable to move, and five hospital visits later, doctors gave me nothing, even when I told them I wanted to kill myself because of the pain. I saw specialists, got tests, and after exhausting all my options for relief, I finally asked for pain meds. Every single doctor told me the same rehearsed line: "We don't do that here." I tried for disability, to be diagnosed as autistic, but there are no services for adults, and disability was not granted.
I have been jobless for three years because of the physical pain and PTSD my last job gave me. IC still doesn't have a cure, even though it seems so easy to do. I'm not in as much pain as I was, but there's still no way I can do retail or any standing work again. If I could only have a small dose of opioids every day for the pain, I'd be happy. But now, because of this horrid world we live in, I can't wait to go to the next one, if there is one.
My Motivation and Inspiration
None. The world sucks.
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