These past few weeks have been crazy, to say the least. My mental health experienced an unexpected decline, I have started experiencing new fibro symptoms, my covid vaccine appointment got canceled due to weather and was never rescheduled, I got a 14 on an exam because my mental health just did not allow me to prepare for it, and I am still stuck at home losing my mind instead of at college. To sum it up, life feels a bit chaotic at the moment.
Amidst all the feelings of despair, I remembered all of the times people have told me there’s going to be a day I am 100% cured. And I really wish they hadn’t said that.
A lot of people have told me this- that one day all of my symptoms are going to go away or that they can cure me. I always took this with a grain of salt because even though there are a few lucky people who go into long-term remission for a lot of the illnesses I battle, they are still considered incurable by many medical professionals. However, I think part of me always gained some false hope from their words, and I don’t think the people feeding me this false hope realize how mentally draining it is.
Every time I experience a new symptom or am unresponsive to treatment, I feel like it’s my fault. I feel like my body is inherently flawed and that’s the reason I can’t be “cured” when in reality people shouldn’t be telling patients with typically “incurable” illnesses that they can definitely be cured. I understand wanting to reassure people or convey effective methods, but the diction one uses when talking to a patient or chronically ill loved one affects how they see themselves.
If you know have witnessed people experience a full recovery from fibromyalgia, please don’t tell other people with fibromyalgia this will be the case for them. Instead, say things like:
“Don’t give up, I encourage you to keep exploring your options.”
“I know a doctor who has great patient outcomes, I can send you his contact information if you would like. “
“It’s okay if this medication did not work out, I am sure you will find one that provides you with relief.”
And if you’re a medical professional, just from a patient’s perspective, I prefer it when my doctors tell me they can help me rather than telling me they can cure me, because that isn’t always guaranteed with patients with chronic illness, no matter how good of a doctor you are.
It already takes patients with chronic illness a long time to accept that their illness isn’t their fault, so saying things like “you will be cured one day, you’re so young” makes us feel flawed and broken, especially if we don’t respond to treatment.
Hope my insight helps!