Sometimes I feel like I’m living life trying to be invisible and miserably failing. I remember when I was a kid, playing like we were invisible or trying to convince my younger brother he was invisible after a magic show we put on. We laughed and it was all fun and games. As an adult though it isn’t fun.Living with an invisible illness isn’t fun, but explaining that invisible illness is almost worse, so you catch yourself just wanting to disappear.
My symptoms began years ago, but because I was young and invincible, I shrugged it off as nothing. I continued to do that until I had my third child, then I knew something was wrong, but I also didn’t want to be labeled with a diagnosis, so I ignored it. What started off as aches and pains and other symptoms I didn’t realize were all connected, soon developed into nerve pain and debilitating joint and muscle pain that I couldn’t ignore any more.
After I had my fourth child, I was referred to a rheumatologist due to a very elevated SED rate (inflammation in my body) along with the rest of my symptoms. And guess what? The rheumatologist told me it was all in my head. She told me that I needed to lose weight and be active, and it would all go away. I left feeling dismissed. I brought all of my medical history, all of my bloodwork that doctors were telling me were concerning, all of my fears, and I left being told it was in my head and that I was fat. Gee, thanks doc…I could have saved a lot of money and time, and told myself the same at home.
So I set out to lose the weight and slowly I did. Over the course of a little less than two years, I lost 85 pounds. I’ve continued working to lose weight and while I am happy about the weight loss, my symptoms have been worsening. Brain fog, debilitating body pain, pure exhaustion, and nerve pain have made it hard to function, let alone actually live. So I’ve sought a second opinion at my mom’s urging. I was honest with this new doctor and told her I had seen another doctor who told me it was all in my head and that I needed to lose weight. I also told her that I had lost weight but that my symptoms were worse. I told her I just wanted to feel better and be able to live again. So we tried to get my SED rate down. The inflammation in my body was high and getting it down would help me feel better. We weren’t looking for answers at first; we were just getting my life semi-back.
After seeing this new doctor for a year, I was told we needed to do extensive testing. It was a lot of bloodwork, and it has to be repeated, but it would let us know what was going on in my body. The results showed us a few things, none of which were answers, but they showed that inflammation was up in my body, that I had an ANA marker for lupus, and that I had a DNA marker for lupus, all of which can also be markers for a number of other autoimmune conditions. During this visit, I started an immunosuppressant medication. One of the side effects is hair loss, but I went in knowing this. I was so happy when the medication started making me feel better. I could walk through a store without pain, I could play with my kids, and I could live again.
Then, the hair loss started. It was scary at first. To lose handfuls and handfuls of hair in the shower was scary. To readjust how I styled my hair because of losing hair was hard and thinking of losing even more hair was hard. When you have never felt beautiful in your own skin, but you have always loved your hair, the thought of losing the one thing that makes you feel pretty, is hard, but the thought of going back to a life that was so limited by an invisible illness was worse. So my doctor has put me on a medication to help lessen the hair loss, and I have three months for it to start working or she will take me off the medication since I am still battling a nameless enemy that limits the treatments I can have.
