Becoming Disabled: The "D" Word

Part of accepting disability is being able to name it.

Photo by Artem Maltsev on Unsplash

In 2017, I finally had to call my condition what it is: a disability. Though I was still doing a lot of running around, and I was getting out a couple of times a week, it was getting harder and harder for me to function. Those outings and activities started costing me more dearly than they had in the past.  I had a good day or a string of good days once in a while, and I took advantage of them when I did!  Unfortunately, I was starting to pay for them more steeply.  My flares were getting worse, and I was staying tired for longer periods of time. I also found myself not able to stand or exert myself for as long as in the past.  I had to rest after every task or after every 15-20 minutes of activity. Sometimes, I would find myself done for the day after hanging the laundry, for instance.  I couldn't concentrate on anything for more than an hour or two. I went for about a year being unable to read! It was not that I had forgotten how to or developed a learning disability. It was physical fatigue. My brain was physcallly tired. That sucked, as reading has always been one of my favorite activities. (Fortunately, that symptom finally went away, and I’m happy to say that I’m back to having a book pile.)

These factors made it harder for me to find work that would accommodate my needs for rest and time to refocus my mind.  I had been looking for a part time job for over two years without any luck. After much discussion with both my partner and my client (who had been more than understanding with me,) and with much hesitation and emotional struggle, I made the decision in July of that year to apply for disability. I knew what I was getting into, and I knew that getting it would potentially be a long process and that most people do not get it the first time they apply, so I took it all one step at a time.  In the meantime, I continued to look for work and for clients.  I wasn’t going to just sit around and wait for it. I realized that it could take years and that I might not get it at all, even on appeal.