After months (or even years) of questioning our symptoms, questioning medical professionals, questioning “Web – the Great and Powerful,” and questioning others with multiple sclerosis, we have reached the inevitable answer: we have MS.
Why then do so many people feel like they have the right to question us?
We have just acknowledged the seventh anniversary of our Life with MS blog and in those years nothing has frustrated me more than reading about our brothers and sisters being told they were “faking,” were “lazy” or that their symptoms weren’t “real.” Look, I know people can’t see many of our symptoms, but I can’t see their heart beating within them either. Does that mean I should call them “heartless?”
Well, now that I think about it…
We all know that just because a symptom might be invisible it does not mean that a symptom isn’t real. Many people will experience headaches in their day-to-day life, but would think us total jerks were we to say to them, “Well, you look fine to me.” Why then do some people – even some people who are very close to us – take up a pike and run us through with such phrases? More importantly, why do we let them?
Self-Advocacy is a pretty broad and sometimes misunderstood term. I know I didn’t understand it fully when I first heard of it. It has to do with standing up for ourselves even if it’s difficult (or impossible) to actually stand. But self-advocacy begins with knowing what we need, finding out how to get it and not allowing anyone to tell us we are wrong.
We are not to be bullied – and make no mistake about it there are some people who will try to bully us because they see us as weaker than or even “less than” because of MS. We should not accept anything short of empathy from those we love and understanding from MS professionals. I believe we should measure people’s treatment of us and our MS the same way we would in any other part of our lives.
Would I accept a co-worker who told me they didn’t believe my computer was having trouble? Would I allow a family member to speak ill of me because my car was in the shop? Would I keep a friend who stopped asking me to do things because I wear green trousers? Would I keep going to an eye doctor who told me I could read his chart but wasn’t really trying?
A big, fat “of course not” to all of the above.
If people do not believe that I have MS, why would I want them in my life? If said people must be in my life (co-workers, for example) I mustn’t let them get away with this abuse. If my family pushes the bounds of decency, I am allowed to push back.
We do not have mythomania (compulsive lying), we have multiple sclerosis. Seriously; why won’t they believe us?
Wishing you and your family the best of health.