It Could Always Be Worse

Unfortunately, there is sometimes a bizarre sort of “competition” that takes place within the community of individuals who have been diagnosed with the very same disease. Having been a member of the MS community for a full 25 years, I’ve witnessed this occurrence multiple times. When I was very newly- diagnosed with MS, it was very difficult for me to walk into an MS support group: I witnessed that the overwhelming majority of men and women were using assistive devices, whether canes, walkers, or wheelchairs. I felt extremely guilty for requesting emotional support for my hidden MS symptoms, since I needed no such adaptive equipment. Finding a support group for those with invisible MS was invaluable during this time. I received much-needed validation for the full range of MS symptoms that I was experiencing, including those that were not overtly detectable. Over time, I’ve come to deeply appreciate that disabilities are not always overtly visible. Don’t get me wrong, I am indescribably thankful that, 25 years post-diagnosis of MS, I remain fully ambulatory, with no need for assistive devices. However, this by no means implies that I have only “mild MS.” My MS fatigue is absolutely debilitating, on a daily basis. All of my MS symptoms are exacerbated by heat, which is not insignificant, given that I am peri-menopausal. I receive full social security disability benefits. I am no longer able to work full-time, despite having obtained the highest degree possible. I’m struggling to exist on a mere fraction of my former salary. I’m trying to go back to work, just part-time, due to sheer financial necessity. Just some of the thoughts that cross my mind, when someone blurts out “it could always be worse; you must have mild MS.”

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