Just because you can’t see it doesn’t mean it’s not there!
When I described my symptoms of Scleroderma, I didn’t include the weird ones…Raynaud’s episodes in the hot shower (Denny cannot wrap his head around this one!); phantom stinging/jabbing pains; swelling that comes and goes in the oddest places and unpredictable debilitating fatigue.
Doctors that are well versed in Scleroderma put these in the bucket of “random” because there is no rhyme or reason. Sometimes my doctor will literally shrug her shoulders and say, “that’s Scleroderma.“
Scleroderma patients are often referred to as “suffering in silence” because they don’t have outward signs, even as their internal organs are being attacked. It’s so rare and misunderstood that patients are often gaslit by doctors and even their friends and family. Meaning they are either not believed or made to feel like their symptoms are all in their head because they look fine on the outside.
Wanna put a Scleroderma patient on the defensive? Just tell them how good they look. I know it sounds funny, but even when meant as a compliment, it can feel invalidating to someone dealing with a hidden illness. That’s because it’s hard for people to fathom how much energy and pain it can take to look presentable when leaving the house.
So what’s a more helpful way to phrase it? I’ve had a couple of people say to me, “I hope you feel as good as you look today!” I was really touched by that acknowledgment of my efforts and where I was at that moment.
Can we talk about fatigue for a minute? I understand that a lot of people are tired these days. It’s kind of an epidemic. I’m not here to compare. When I refer to debilitating fatigue for myself I mean I can get 9 hours of sleep and wake up exhausted. I eat breakfast, take my meds and have to rest. I take a shower and have to lay back down. Simple tasks require a sit down break to complete; needing one, sometimes two naps throughout the day is not uncommon! I can have two good days in a row and be down for the count on my couch for the next four. It’s unpredictable and crazy making.
Some of us are made to feel lazy, either by others or by ourselves…our own worst critic. My previous philosophy of, “just try harder” doesn’t work. It took me a very long time to recognize that although it helps, exercising more to build stamina is not a magic bullet.
I’ve always been a reliable girl who likes to plan things in advance. I think I’m a fun girl. My amazing hubster and I love being active and adventuring. My head and heart still wants to do all the things, but my body says, “no way!” Now I literally plan out my movements each day and hope for the best. I have to say no to lots of things I’d love to do. Sometimes I say yes, but then have to cancel. Please don’t take it personally!
Have you heard of the Spoon Theory by Christine Miserandino? It’s not just for Scleroderma but any hidden chronic illness. It’s helped me to put things in new perspective, cut myself some slack so that I can still enjoy my life. Check it out here. https://m.youtube.com/watch?v=GDio-hS-M54
