I hear it on our Facebook page all the time: people question MS’ers about their diagnosis. To some degree, I thought of it as simply ignorant questioning. Most people know very little about multiple sclerosis until either they or someone they love is diagnosed with it. Along with navigating the other gifts of MS, we have to also act as public health advisors and educate the masses. I get tired of it sometimes, but I can understand it and appreciate that it most often comes from a good place of genuine concern. Additionally – let’s face it – there is no definitive test that says “yes – you have MS.” It’s really a diagnosis of exclusion. Sure, there are the telltale signs of lesions on the brain and/or spine that show up on MRI, the unusually high levels of immunoglobulin G (IgG) antibodies as well as other proteins and fragments of myelin in the spinal fluid upon the lumbar puncture test. But beyond those clues – and that’s all they are because those things alone could be indicative of a lot of other issues, not just MS – there’s no gold standard test that someone can take and get a definitive stamp on their forehead that says “MS.” Is that why people question it?
Perhaps that it is so unpredictable that it can change literally in an instant and often causes us to cancel plans at the last minute that seems suspect. Maybe – for those of us lucky enough to have the Relapsing Remitting form of MS – people see us when the MonSter is remitting and they can’t understand how someone with a chronic, often-times progressive, debilitating disease could look and function so well. I’ve often heard MS’ers lamenting the fact that people always comment on how good they’re looking. I take it as a great compliment and don’t look at it through the filter of MS.
I’m a big believer in weighing intent. If the person I’m talking to is asking questions because they are concerned about me or they want to learn more about my disease, I’m beyond happy to oblige. If, however, the questions are in some way based in ill-intent or are intended to question my intelligence or integrity - well, I have a real problem with that. I’ve just had my first taste of this – and it’s quite bitter. An old “friend” has inquired of others whether or not I “really” have MS or if I’m just telling people that story. I’ve been blind-sided. I can’t imagine why anyone would lie about having MS. What could I possible get out of that: pity (nothing worse in my book), HUGE costs, I had to leave a job I LOVED, there was a question as to whether or not I could drive, my children have been saddened and scared, my husband has had his world ROCKED many times and my mother prayed every day until the day she died that I’d be “cured.” It’s beyond ridiculous. For anyone to suggest it would be maddening – but this is someone who knows me – and has for 30+ years. There is a hurt in this that is so deep it’s hard to describe. The potential doubt that was planted by this one question could have reverberating effects – I work to raise money for MS research and awareness. Can you imagine if I were “faking” it?
I’m going to a charity event in September to raise money for alumni of my high school. It’s such a beautiful coming together, of people who grew up together, to raise money for those within our community that need it. I so look forward to it each year. This year, based on the poison that has been spread, I want to take the microphone and share my MRI and lumbar puncture results. But I won’t. I’ll hope that those people – the ones that have known me the longest and the best – know me better than that. That they know my intentions and they know my heart. Then again, I was counting on my “old friend” to have known me better than that too.
Have you been “questioned” about your diagnosis, symptoms or level of illness? How have you handled it?