It happens every time the pain or fatigue hits. What did I do this this time?
This week fibromyalgia has presented me with aching legs, sluggish and sore during the day with shooting pains at night. I think back to what I might have done to cause this new increase in discomfort and remember that I thought stretching those tight muscles gently in my Epson salt bath would be a good idea. Apparently not.
Last week it was crushing fatigue that kept me on the couch for three days, unable to interact with my family. What did I do? Too many outings – errands, running the kids to events, visiting a friend – I should have known better.
And there was the terrible stomach pains at Christmas. What could have caused it? Too much gluten, probably. I can’t seem to get my mind clear enough to organize my shopping so I can stick to a healthier diet. And I really wanted to have some of the cookies I baked with my daughter. I guess I had too many that week.
And the headache. I shouldn’t have had that glass of wine with my husband.
And the post-Christmas malaise – I guess I didn’t plan my activities well enough. I got over-tired and now I’m paying the price.
There is so much shame in chronic illness. Life with an invisible illness diagnosis is already rife with it. Doubts of the veracity of your disease exist in the press and even in your doctor’s office. Many live with disbelief from the very family members that should be supporting them.
But there is also the shame of never doing enough or getting it right. Every time this illness really socks me under, I find myself searching the internet for something I’ve missed – some diagnosis that might be treatable, a diet that might help, a supplement that I’ve missed. The problem is, the helpful tips are abundant but never simple and generally very costly. It takes a leap of faith and a fistful of cash to trust an online voice advising any one of them. I look for commonalities and try those, but even then, it takes organization and energy. My mind shuts down at some point.
B12…methylated or not…did I get a decent brand…my stomach is really hurting…could it be the B12 or is it something else…how do I know it’s helping…
But the shame, the shame that I haven’t tried hard enough, haven’t researched enough, haven’t searched out that cure. The shame that I overexerted. The shame that I ate that cookie. The shame that I had that glass of wine. The shame that I’m a human trying to deal with a disease that even my doctor doesn’t understand, but I somehow expect myself to be an expert on.
So here’s the thing. I’m like all humans, I’m fallible, just bumbling my way through life. It’s just that when I bumble, the results are a little more obvious and troubling than they are for most people. I’m just going to stop feeling guilty about it.
Because the reality is, my legs might hurt because I stretched them…or maybe just because the weather shifted. I may be exhausted because I over-exerted, or maybe my body isn’t absorbing nutrients properly. My stomach might hurt because I ate that cookie, or it could be totally unrelated. Maybe it’s all just fibro. Maybe that magnesium supplement that I haven’t tried yet will help, or maybe it won’t..
The fact is, my body does really strange, painful things that I can’t control. I can do my best to live a healthy life, to pace myself, to care for myself – but I can’t change the fact that this mysterious illness is causing havoc inside of me and no one really knows why, least of all me. Part of self-care needs to be the acknowledgement that I didn’t create this, that this wasn’t caused by my negligence – that I don’t have to feel guilty every time I feel worse.
It’s time to stop blaming myself, because it’s really not my fault..