So? How does one deal with it?
Whether it’s fibromyalgia or depression, all of us have been there. You’ve tried to explain to your loved ones how you’re affected by your symptoms… maybe they were even there when the doctor was diagnosing you.
But they just don’t seem to believe in the F- word. Or the D-word. They don’t outrightly say this but their actions speak volumes.
At least, this is how you feel.
Chances are, if you suffer from fibromyalgia or depression (oops…I said the bad words…naughty me *slaps hand*) you have encountered some of the accusations that I and many of our friends have.
Accusations of laziness, unproductiveness (at work or home), not paying attention, being spaced out, being too negative, not trying hard enough…. “You sleep too much!”
I’ve heard of some of our friends getting sarcasm from their spouses, being ignored or being expected to function as a super human being when they can barely get out of bed in the morning.
This can all be hurtful and can sometimes create fissures in our relationships.
How to deal with the lack of support
This is a toughy. Unless the situation is extreme and you’re facing abuse, don’t do anything drastic, particularly if these are people you love and who love you.
1, Have a conversation – Sometimes it takes time for the people in our lives to understand what we endure daily. Have a loving conversation where you explain what you grapple with and what your needs are. Remember to use positive language and don’t accuse.
2, Corroborate – as bad as this may sound, sometimes our loved ones need to see data, research, articles, news stories…aka proof to corroborate what we are explaining to them. Fibromyalgia is still relatively newish in the medical world and there are still loads of people who’ve never heard of it. And go to a trusted source. Wikipedia doesn’t count here.
3, Support Self – No self-pity is allowed here. You won’t get it from others so don’t give it to yourself. Try. Invisible disabilities are rough to cope with. I always say it might be easier if I used a walking stick. But not really. The world carries on, and either we carry on too or get trampled on in the madness. Be strong and find the support you need, whether that’s a local or online support group, or understanding doctors who will endeavour to find what works for you.
4, Acceptance – It might be easy when loved ones are unsupportive to blame and get all disgruntled. If there is mutual love, I’m sure you could think of other ways that they demonstrate it. Living with a chronic condition can be stressful for loved ones too, and perhaps there are other issues at hand. Consider (and I’m working on this too, trust me) that we don’t all respond to situations in the same manner. We don’t all display the same levels of sympathy, empathy, kindness etc to others. If after the conversation and the passing of time the status quo remains, look for support elsewhere. No point in getting upset over something you can’t change. Again, you might find support in friends, support groups and work/school colleagues. Oh, and of course here! On the InvisibleF!
Gentle hugs my darlings 🙂 x