22/01/2024
PSA - saying to someone with rheumatoid arthritis, (or any autoimmune or other hidden disease), ‘BUT you look good’ is NOT helpful. This month has been my worst ever in terms of pain and mobility issues, in both my hands and my feet. Here’s a snapshot of how my right (dominant) hand has looked over the past week. Pretty ugly and not at all conducive to going about my everyday life some days (I’m talking eating, drinking, dressing, let alone getting out and driving). But, even when my hands don’t LOOK this bad and I’m able to straighten them up and strengthen them a little with my splints and go about my days ‘normally’, it’s still bloody hard. Also, it’s rare you’ll ever see my feet, but I can confirm my toes are as crooked! What you don’t see is everything else going on. The fatigue (not tiredness, another thing I don’t want to hear is you know how I feel because you’re tired right now) is unreal. My entire body just saying no. No to anything, physically and mentally. I may be out of bed and dressed, but that might be todays biggest accomplishment and it might have taken 4 hours to get there. The ongoing chasing and management of my medical support (or lack of), the deep diving into all the self healing and support I can do for myself. Sometimes it feels like a full time job. But what I sometimes find most frustrating is the constant ‘BUT you look okay’ from people around me. I know people mean well, but honestly, what I hear is ‘you’re being dramatic’ or ‘it’s not really that bad’. I’ll be honest, I’d take looking like a sack of rotten potatoes 24/7/365 if I could just feel better. So please, when someone you know has a disease/condition/disability that you can’t always see, don’t make it about the things that YOU can see 🙏 (To be clear, it’s the ‘BUT’ that makes all the difference, saying ‘you look great, how are you feeling?’ is a whole different thing). Here endeth todays lesson.
