Monday, February 11, 2019

Struggling to Find a Purpose


Since I’ve been writing about my life with Multiple Sclerosis, I’ve covered a wide range of topics. Many of those will typically include pieces that discuss, not necessarily a specific symptom, but the changes and emotions I (or others) encounter because of living with MS. While symptoms like painfatigue, and cognitive function are extremely difficult to live with on their own, the collective effect that the disease has had on my life is sometimes the most difficult to deal with. One of these unfortunate effects that I struggle with, often on a daily basis, is trying to find my purpose in life.

Questions purpose in life

While not everyone with MS is on disability or forced to leave their career, there are many that are in just that situation. No longer able to work full time, struggling to fill their days. Additionally, many people may still work, but their bodies allow for little more than that. They are still making a living, but perpetually paying the MS Tax for it, leaving them with a tired life of only work. Whether the disease takes your livelihood or your social life, or both, it can create feelings of unfulfillment and lead us to question our purpose in this life. What’s a life when I’m not contributing and making a difference? What’s a life, if all it is is work?

When You’re Doing All You Can

“What about this? What about that? Have you heard about that other thing?” Our well-meaning friends, and sometimes even ourselves, are constantly looking for the answer to our chronic illness. Searching for that magical treatment that will fix us and let us live the lives we once lived. The not-always-welcome-truth of the matter though is that many of us are already doing everything we can to fight our disease. It’s not easy to accept that multiple sclerosis has no cure. It’s also not easy to accept that you may be doing everything you can and you’re still not back to your old self. Coming to terms with having an incurable illness is extremely difficult. Accepting that you are doing all you can doesn’t make you a quitter though, it allows you to begin to live.

Are you really doing everything?

I can’t talk about accepting your position until I emphasize that, maybe more than any other disease, multiple sclerosis requires you to do a tremendous amount of work. Are you seeing a knowledgeable enough doctor? Are you maintaining as healthy a diet as possible? Are you getting some form of exercise? Have you seen speech, occupational, and/or physical therapists? Are you taking care of your mental health? Treating multiple sclerosis requires much more than a great neurologist. Even if you are taking a disease-modifying medication and you haven’t had an exacerbation in a long time, you may still not be doing enough. There may still be room for improvement. There is a lot you can do to fight this disease, it really is a pain in the ass. I have to be blunt here: honestly, if you aren’t a little frustrated by the number of appointments and things you have to do to fight this disease, then you aren’t fighting it as best as you could be.