I have decided that I don’t want to talk about my problems anymore. It’s bringing me down and keeping me trapped in a version of myself that I don’t like to be. But I’m also not sure about how to move forward, either.
It’s true that MS is a pretty major diagnosis. A very scary one. And though it’s hard for neurologists to really define much about the disease course in specific people, all five of the neurologists I’ve ever seen said my case is pretty advanced and was already either progressive or some rare variant from the time I was diagnosed.
They say it looks worse than typical relapsing-remitting and I wasn’t diagnosed until it had done a lot of damage to my brain. But at the same time, an MRI that looks really bad doesn’t necessarily mean a really bad prognosis. Several neurologists said that based on my MRIs, I shouldn’t even still be able to walk.
Then again, six doctors told me years ago that I’d never be able to get pregnant. I had to use fertility drugs for the first, but went on to have two more children without any help. So clearly, doctors aren’t very good at being able to make predictions, especially about what the body can or can’t do.
My mindset counts for a lot. I’ve given in to being more negative about my illness in the past six months, especially after finding out I couldn’t work full-time and had to file for disability. But I’m deciding now that I’m not going to be negative about my health anymore.
I don’t want to have my whole identity be the sick girl. I don’t want to be one of the many people I know online with MS who are wallowing in misery every day. I don’t want to define myself by my illness, because frankly there are a lot of other really interesting things about me and gifts that I have to offer the world.
But. That said, it brings up the question of how I can avoid focusing on my problems without also slipping back into the denial that I’ve battled for so long. That’s good when I’m not focused on my illness, but also bad because it’s harder to take the illness seriously enough. I will have to walk that fine line and figure it out, I guess.
I think avoiding being focused on my problems is more important for me than the risk of falling back into denial, though. I can look back and see old friendships that just kinda faded away without drama, and I realized years later that it was because I talked about my problems too much. Being focused on my problems is a part of depression, for sure, but it has had a very negative effect on my life.
I had always thought that since they were my friends, of course they’d want to hear about my problems. I just didn’t know when to stop talking about them. And they had to get tired of hearing about the same problems over and over because I have gotten tired of hearing other people do the same.
In a kinda strange comparison that helped me put it into perspective, my oldest always suggests watching movies that he describes as really bleak and depressing, but still worth watching. I can’t ever psych myself up enough to want to voluntarily watch something that will bring me down. Then I had the lightbulb moment that I was having that same effect on other people. No wonder they backed away from me. Why would you want to talk to someone who was likely to bring you down?
So I started to work on making a really serious effort to stop doing it, to talk about things that were more interesting to other people instead. Sometimes that’s a challenge with chronic depression, for sure. But it was an effort worth fighting and I was making some progress.
I regret that I lapsed back into talking about my problems and seeing things as so negative again. Some people brought out that negativity in me and I had to distance myself from them. I have to prioritize my health and do better.
It may always be a big fight for me, especially since I’ve had depression since kindergarten. But regardless of my challenges, I have more control over my mindset than that. I need to be around more positive people so it’s easier for me to be more positive, too.
I specifically have to resist the MS support groups because they are solely focused on the disease. I don’t want to become like the many people who use hashtags like #sickgirlsclub. I might even remove my illness from my bio on Instagram, just because I really don’t want my challenges to define me anymore. I don’t want to seem like I’m seeking attention for being sick. Getting attention for being sick doesn’t in any way lessen my actual suffering.
I did make real progress on my mindset before. It just took consistent effort. And that’s what I need to do again. I’m still better than I was before I started working on it, but I let myself get sidetracked into focusing on my problems again.
Because even if this disease sucks a lot, it is not the whole of who I am. I have so many other skills and accomplishments and interesting things about me and I don’t want them to be forgotten compared to my disease.
I don’t want my problems to be what people know about me. I want to be remembered for how much I triumphed even in the face of my challenges. I want my MS to be an afterthought. I just need to remember that achieving that will take constant effort and I can’t slip up again.
Now to decide what to do about a blog that has had a lot of MS-related content. I just don’t think I want to write about it as often anymore. Not writing about it won’t mean that I suddenly feel great or that the disease has become any less scary. Just that there’s so much more substance to me than my problems.