Sharing the Good Days When You Have AxSpA
At the beginning of the holiday season, I was struggling through the start of a flare up. I knew that the holidays had been very difficult in the past and I decided to speak to my rheumatologist and be direct about what it was that I needed and asked for additional supports to help the holidays be festive and jolly, instead of painful and stuff.
I feel much better, but I also feel fradulent
As a result, I’ve had one of the best 2 weeks physically of 2020, and I suddenly feel fraudulent and wonder if I ever was really sick at all. You see, bad days and weeks can feel like a lifetime. Good days and weeks can make you feel so present and quickly make the flare ups feel like a mere feverish memory.
Sharing that I felt good was difficult
Sometimes sharing that your feeling good, when you have a disease like AxSpA can be really difficult. For me, I never want to feed into any stereotype about chronic illness, that healing is linear, and that if a medication or diet works well for a while it will work forever, or will work for everyone. I think a lot of people have a difficult time grasping the idea that AxSpA is forever and that some of us are in pain everyday, and that we won't get better. So I often have stopped sharing with others when I feel good or bad because I generally feel like it will be taken as “I’m all better now.”
Sometimes I just want to forget that I'm ill
It’s also hard to want to discuss my health issues at all when I am having a good couple of weeks. When I’m having those good periods of time I just want to do the things I wasn’t able to do during a flare, enjoy my days, and forget that I am ill.
Though it can be just as scary to share the good days as it is the bad, I think its important to share how we're feeling, good days or bad, to the people closest to us who love and care for us, and invite them to understand the complexities of having AxSpA!
Does reading AxSpA patient stories help you in your journey?