"Disabled" in My Twenties
Imagine losing the most basic things that your body can do. They are so basic that you rarely think about them and so you often take them for granted. Things like being able to clean yourself, dress yourself, and feed yourself. Walking up stairs, being able to control your bodily functions...
All of this happened to me before I had even graduated college and I had over a million dollars in medical debt to show for it.
Disabled and coping with long hospital stays
Just thinking about the word "disabled" made me feel ashamed, so bringing myself to say it out loud was out of the question. I had just spent 6 months in a row in the hospital without health insurance and during those 6 months, I had multiple blood transfusions, 2 emergency surgeries, was on very expensive daily intravenous nutrition, and spent some time in the ICU with a blood infection.
Then of course there was just the cost of the hospital room itself and everything that comes with being a hospital patient. Did you know that some hospitals charge you to watch the TV? Twenty dollars per day to watch television, which doesn't seem bad until you multiply that by 6 months and you don't have a job to cover the bill. Crazy! But of course, you're going to turn the TV on because you'll go even more insane than you're already going when you're trapped in a hospital for so long without any distraction at all.
"Why don't you apply for disability?"
Everyone was asking me that question. Looking back, it did make sense. I clearly needed help but at the time I couldn't wrap my mind around the idea of disability before I even graduated college.
Disability felt like admitting defeat. My Crohn's disease had become very severe again the year prior to this six month hospitalization. It would have even made sense to apply for disability then but I wouldn't even consider it. Instead, I just lost my job and had to drop out of college and move back in with my parents.
My world shrank to the 4 walls of my bedroom. It was a life of daily fevers, night sweats, arthritis so bad that I could hardly walk, blood loss, weight loss, fatigue, severe abdominal pain, and countless trips to the bathroom. I was pretty sure that I was dying.
A six-month long hospital stay
Little did I know, it was about to get even worse. And that is when I was admitted to the hospital and didn't come out again for six months. I went into my surgeries in such poor condition that I had many complications; it seemed like everything that could have gone wrong did go wrong.
When I was finally discharged from the hospital, I weighed only 82 pounds and I'm 5'5." Because of my poor nutritional state and all of the medical trauma, most of my hair had fallen out. I would run my hands through my hair over and over in the hospital and then throw the clumps of hair to the floor.
I was so depressed that it was something I did robotically - run my hands through my hair until I had a clump in my hand, toss the hairball on the floor beside my hospital bed, and repeat. Disgusting, I know! Severe illness and poor nutritional status will do that to you; it destroys your body. My hair was falling out, teeth were chipping... I couldn't have felt more depressed and scared about my future.
Weak and unable to care for myself after the hospital
After being discharged it became more apparent to me how bad things had become. My muscles had atrophied from laying in the hospital for so long that when I got home I wasn't even able to walk up the stairs to get to my bedroom.
I couldn't believe that I was so weak that I couldn't even walk up the stairs; something that my body could always do so I took it for granted. I had to sleep on the sofa bed in my parent's living room for a couple of months until I had the strength to climb the stairs again.
I also had lost control of my bowel movements after my surgeries and I was wearing adult diapers on my skinny frail body. Babies and old people wear diapers, not ME! How was this my life? I was throwing up after I would eat almost every time that I ate, and I was extremely weak that bathing and dressing myself seemed like a huge chore, and yet I still refused to apply for disability.
There was no way on earth I could have held a job! I could hardly brush my hair, but I wouldn't allow myself to be on disability.
"Why don't you apply for disability?" Why? Because I'm in my twenties! I'm still in college! My life is supposed to be just beginning.
This is what I thought it meant to be on disability
There is such a stigma that surrounds what it means to be on disability and I didn't want that associated with me. To me disability seemed like it would take away my whole identity.
I had been working at the same two places since I was 14 years old. I made it through High School with those jobs and then in college I began working over 40 hours a week as the lead cake decorator in a bakery and as a dance teacher/choreographer who was teaching national champion dancers.
I worked my butt off all the time and had a very driven and perfectionistic personality. I did all this working against the odds - having Crohn's disease, being kicked out of my house at 19 and having to support myself, and with some other very difficult things going on in my life.
Worries about not being able to work and being seen as lazy
I simply could not imagine not working. Disability would take away my whole identity. What would I be if I wasn't doing those things? What kind of loser would I be if I wasn't earning the things that I have?
To me, disability seemed like it was admitting that I can't do things and I didn't want to accept that. Disability also seemed like it was giving up or being OK with being sick and I also didn't want to do that.
I felt like if I was on disability I would be judged as lazy or that people would think that I didn't deserve it. I was also worried that if I did apply for disability and received it that I would never be able to work again.
My fears about what it meant to be on disability extended to how it would affect my relationships. I was afraid that it would prevent someone from wanting to date me or marry me because they wouldn't view me as someone fit to be a wife. I might seem defective or not capable of handling the things that "non-sick" women can handle.
Learning the truth about disability
I never did apply for disability back then and that was a huge mistake. Instead, I let my debt keep piling up and then lost most of my assets. I was disabled and yet I refused help.
Help. That's what disability is. It's OK to accept help if you truly need it. Eventually, I was able to eat and not throw up, I gained my strength back, I put on weight, and I stopped having accidents and having to wear adult diapers. My quality of life improved and I was able to find a part-time job doing something different which gave me a sense of purpose again.
Unfortunately, I started having more health issues not long after and ended up having several more long hospitalizations and more surgery in the following years. Every time it happens, I am out of work, not able to earn a living, and not able to reach my potential.
It's a confusing cycle of getting back to my life and feeling hopeful and then out of nowhere my health declines and everything is taken away from me again. It took a lot of convincing from my loved ones, but I finally applied for disability.
Disability is help and is not admitting defeat
I have learned that disability is not admitting defeat. It doesn't mean that I cannot work ever again or that I am a loser. Disability is help, simple as that.
It's a stepping stone that allows you to focus on your health and getting better if possible so that you can get back to working or going to school, and get back to it without losing everything that you have in the process. Disability was made exactly for situations like mine.
Thankfully with the advances in treatment and surgeries for Crohn's patients over the past decade less and less patients will need to apply for disability. It's there if we do need it, and we should seek the help we need, but most of us will not even have to think about applying for disability which is a beautiful thing.
Would you consider participating in a clinical trial for a new treatment if you had to see a different doctor during the study?
Does exercising regularly help in the management of your symptoms?