But I don't deserve to...
Today, at my wife’s suggestion, I want to talk about an issue that pops up all too often for me. For me, having Multiple Sclerosis means having a fair amount of guilt, all the time. I could go on and on about how I sometimes feel guilty that I am a burden or that I feel guilty for having to cancel plans all the time or guilty that the house is kept extra cold or guilty that I couldn't take out the trash. Well, I’ll stop there because as you can see, deserved or not, the feeling of guilt can be pretty prevalent for someone with Multiple Sclerosis. The thing I want to focus on today, is a constant feeling that I don’t deserve to have any fun. I’m sure for many, that might sound crazy. You’re in pain all the time, you have trouble walking, you have an assortment of issues, of course you deserve to feel good and have fun! Well, I counter that with I can’t work anymore, I can’t help around the house as much, I can’t contribute as much financially as I once did, etc. For me, not being able to contribute in the same ways as I once did has been an enormous problem for me.
My siblings and I were raised in a honest, hardworking family, sure, we had advantages that many didn't but we were always taught not to take those for granted, that you still have to put in your amount of effort. That great work ethic led my brother, sister, and I to good success as adults (not to mention, it’s been invaluable to me in my fight against MS). My sister and I used to always say we “work hard, play hard!”, and we did. Whether it be going out, going on vacation, buying something new (and maybe even a tad frivolous), whatever, we did it in good conscience because we knew we worked for it, we earned it.
So then what happens when suddenly you can’t work anymore? You not only aren’t the main bread winner but you also aren’t able to help around the house as much? Well, for me, it becomes hard to justify doing things that seem enjoyable. Things like going out with friends, partaking in fun hobbies, or even giving input on what I want for dinner. There’s a feeling that I haven’t earned it, that I just don’t deserve it. There are many occasions where my wife has to really prod me to do something and I eventually have to tell her that I just don’t feel I should be able to go, I didn't earn it, I don’t deserve it. All I've done is lay in bed for a few days, she’ll often reply that that is exactly why I should go.
This is all a constant struggle I have, so I wanted to bring it up. Not just as a way for me to work through the issue but on the chance that others with MS (or any chronic illness) also deal with this. It’s tough to convince a guy in his mid-30s, who’s either been very independent or the main “bread winner” (as people like to say) otherwise. I don’t really have a solution, it’s a mental game to keep playing. I’ll work hard at getting past it though.
Does your employer provide workplace accommodations due to your MS?