Coping with an Invisible Illness

I haven’t been doing much with the Sleepy Dragon Workshop lately, because I’ve been really struggling with my health. I generally try not to talk about it much, because I don’t want it to seem like I’m always complaining. But I think there are a lot of other people out there who could benefit from knowing that we share some of the same struggles. So I’m going to be a little more transparent about how I’m doing, and I hope that it’s an encouragement to you rather than a downer.

I have several invisible diseases: Addison’s, Hashi’s, Sjogren’s, fibro, mild scoliosis, peripheral neuropathy, erythromelalgia. Each one of these comes with its own set of frustrations and the ability to affect my day and how much I can accomplish. The pain levels, fatigue, and muscle weakness are utterly unpredictable. This makes me want to avoid making promises to do specific things at specific times, because I never know ahead of time whether I will be capable of following through. And to people who don’t have to deal with the unpredictability of these illnesses, it can look an awful lot like I am an unreliable flake.

In all honesty I can be a little scatterbrained, as I’ve struggled with ADHD all my life and “fibro fog” has not helped. But knowing those facts, I now put EVERYTHING in my calendar. So if I don’t follow through on meeting up with you, or getting something done, it’s not because I flaked and forgot, it’s because I was physically incapable of doing that thing. I don’t necessarily want to be a hermit, I’m just loathe to make promises that I don’t know if I’ll be able to keep.

So to all you other invisible disease warriors out there, you’re not alone. I understand your struggle. I’m right beside you as we try to do the best we can with the challenges we’ve been given. If you need an ear to listen, feel free to message me and vent to your heart’s content. Sometimes it helps to get it all out, and to just know that there’s someone else out there who knows what you’re going through.

One song, with its accompanying video, has been a huge inspiration to me lately: Won’t Stop Running, by Great Big World. Seriously, the video is amazing, check it out. And in the meantime, I’m not giving up. I won’t stop running. I hope you keep on running too, my friends!

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