Guilty! The Shame I Experience While Living With an Illness and Having Fun

Before I got sick, I didn't feel guilty at all about having fun. I was a productive member of society. I worked, went to school, and generally excelled at the things that I chose to do. I got my black belt when I was fourteen, I was on the rowing club all throughout high school, I volunteered, got good grades, and by the time I finally graduated I had 31 college credits under my belt. So, of course, I was allowed to have fun! I'm an introvert and a homebody. So, my definition of fun mostly involves staying at home, curled up on the couch, and watching TV. Occasionally, I would also hang out in small groups of friends. I like going to the movies, going out to eat, shopping, writing, and working on crafts. My idea of fun hasn't changed since I was a teenager, but my body's abilities have.

When I turned 18 I was kicked out of the house and told not to come back. I was pressured into going to a very expensive private college for a major I didn't feel too strongly about, Occupational Therapy. But, I was convinced when my mom said she'd help me pay for it. But, when the second year rolled around my mom withdrew her offer of support. I switched to a cheaper, regional college and moved into an apartment with my friend. My mom said I was a failure, and 6 years later I still feel the sting of shame. I had trouble going to classes, sleeping, focusing, and holding a job. I was confused as to why I struggled with these basic things when I excelled at them in high school. Little did I know, PTSD, anxiety, and depression were just starting to show their ugly heads.

I ended up dropping out of college after I earned an associate's degree because I had little to no financial support from my family and I needed a full-time job to stay afloat. At the age of 20, I took a job as a phlebotomist and did my best to pay my bills making $10 an hour while my family made fun of me for living in poverty. Then, at the young age of 21, my first major symptoms of Ehler-Danlos Syndrome appeared. I developed neuropathy, dystonia, and had severe neurological reactions from Mast Cell Disease (slurred speech, blurry vision). I was in and out of work for the next two years, floating between jobs. I was constantly in the hospital or a doctor's office, running tests. Sometimes I was close to eviction, and when I asked my family for support I was told I should have finished school and they had better things to spend their money on.

I still didn't have a diagnosis, but my wife and I finally got to a better place financially and I was able to drop down to working part-time. For the first couple of months, all I could do was sleep. It was like I had years and years of missed sleep to catch up on. After that, I started to feel well enough to return to school and start my bachelor's program. And, a few months after that, I finally received a diagnosis. A total of three years after my symptoms started.

With the proper treatment, I finally had the energy to do the things I needed to do (working, school, cleaning) and the things I wanted to do. But, when I settled on the couch to watch my favorite shows I would, again, feel an immense amount of shame. I told myself I wasn't working hard enough, making enough money. I looked around at my apartment and beat myself up, at this point I should have had a house! When I would visit my family, who lived in McMansions and laughed at the neighborhood I lived in, I was reminded of how much harder I should be working. Look at what they have, I should have that. Then, I'll fit in with them. 

At my wife's encouragement, I sought therapy. There, I learned that everyone's ability levels are different. She reminded me that I was working as hard as I possibly could, and I should be proud of all that I had accomplished. My therapist frankly said to me, "Listen, most people with your background are in a permanent group home. The fact that you finished a degree, live on your own, and got married are amazing accomplishments in themselves." And, I began to realize that many of my feelings of shame are rooted in my mental illnesses vs. my physical illnesses.

My mother made it very clear that I wasn't a worthwhile person unless I served a purpose, so I felt useless without working. And, I felt that I didn't "deserve" to have fun.

I am close to celebrating one year of no contact with my family (I'll write more about that in a separate post). And, I  continued therapy. Today, I can still feel a little shame when I think I'm getting "too lazy." But, I remind myself of all the things I've accomplished. I learned it's not fair to compare yourself to others. In the race of life, some people get a 100-meters head start and some people start 500-meters behind the start line with a ball and chain weighing them down. Sometimes resting and enjoying myself is exactly what I need to do to refuel and work efficiently.

I am a survivor of abuse. I live with PTSD, anxiety, and depression. I was born with Ehler-Danlos Syndrome. Look at all I've done despite that. Now watch at me enjoy a meal at a restaurant and then binge watch Law & Order. Because I deserve it!