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.
Doing all that? Good, you’re probably still frustrated
If you are doing everything I just talked about, good for you, it’s not easy. The sad thing about MS is that you can still be doing everything right, everything you possibly can, to fight the disease and still feel like you’re losing. You may go to physical therapy and use a cane regularly, but you still fall. You can go to speech therapy and still slur your words. You can take your medication and still relapse. All of this is extremely frustrating. Everything we can do to treat MS and its symptoms will still never makes the disease go away. You can do everything right and still not feel great. That can be incredibly demoralizing. It can also make you unappreciative of the efforts you are making. Whether it’s always noticeable or not, your medication does slow the disease, speech therapy does help you get words out, and a cane does make walking easier. It’s hard to really appreciate how helpful your efforts are if your expectations aren’t realistic.
Life with MS is a delicate balance when it comes to expectations. You should always be fighting and advocating for yourself. Always be ready to try a new doctor or a new treatment, but it’s important to appreciate the successes that you have too. It’s easy to say, “Well, MS doesn’t have me and I won’t stop till I’m cured.” How realistic is that though? It’s OK to have MS and your life not be the same as it was. It’s OK for life to change. It’s OK to adapt. If you are honestly doing all you can to fight the good fight, then it’s OK to accept that your life is different now. Whether they have a chronic illness or not, most people’s lives don’t go the way they expected, that’s just how life works. Having MS doesn’t have to be the worst thing in the world.
You can still live a great life
Coming to terms with the fact that you are doing all you can but you aren’t what you once were can be an incredibly important moment. You can have MS and still live a great life. There can be no cure and you can still live a great life. Sometimes, we have to set the proper expectations and go from there. We have to accept that maybe our lives won’t ever be the same. Always remember though, that different isn’t the same as bad. When you’re doing all you can, and can accept that, you can truly begin to live.
Does your employer provide workplace accommodations due to your MS?