“There’s pain with MS?” inquired the110,000th person to ask me about it. “Well, there certainly can be,” I calmly answered. “Not really,” said the neurologist sitting there – that obviously didn’t know me. “I beg your pardon,” I asked, still kindly, yet sitting up a little straighter. “Well, MS itself doesn’t cause pain. There are other comorbidities that can go along with MS that can cause pain, but MS itself doesn’t cause pain.” Sardonically chuckling now, I leaned in to size up this doc who suggests he knows my pain – or lack thereof. “I have no other diseases, no other issues, no other problems, no other “comorbidities,” I said. “How do you explain my pain?” “Your comorbidity may be depression which is very common in MS. That can cause physical pain – or more specifically, it can cause one to believe they are feeling physical pain.”
Oh no he d’int. As I felt the steam coming out of my ears and my head about to blow off, I stepped back and took a deep breath. “I am not depressed, nor am I suffering from clinical depression. I do, however, have very real, physical pain, directly attributable to my Multiple Sclerosis.” There, take that. “No you don’t,” said the soon to be late-doctor, daring to challenge my interpretation of my own pain. “There’s something else going on that you don’t understand. There is no pain with MS.”
And so it goes. I’ve heard this, or some general semblance of this scenario, over and over from multitudes of MS’ers. Why is our pain questioned? Judged? I don’t understand it. If I had cancer, my pain would be accepted and treated. Thankfully, my own neurologist gets it. He understands the pain and will work to treat it as best he can. The biggest gift he gives me – is believing me.
So much of this goes back to MS being such a “disease of disguise”. So many of us have no outward signs, we seem just fine. But oh – the pain. Or, the cog fog. Or – well, you name it, some MSer’s dealing with it. But the general public can’t see it so it’s tough to quantify. However, I certainly expect more of my doctor – and you should too. Now, more than ever, it’s our responsibility to cull through the stupid. If you know you’ve got an issue, don’t let the medical community talk you out of it. Don’t be intimidated by a medical degree. They aren’t you. They don’t know what you’re feeling. If they don’t believe you or aren’t treating you with appropriate measures, move on. You cannot afford to coddle an ego at the expense of your health. Move on. Find someone who will help you.
And, just for the record – I know my pain is real – and I know yours is too. Have you been questioned about the authenticity of your pain, your symptoms, your disease? If so, how did you handle it. Please share your experiences in the comment section below. Your experience could make the difference for someone in our community.
Special thanks to www.FreeDigitalPhotos.net for letting FUMSnow.com use this scary picture of a woman really hurting. Hope that was just for the picture.