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.

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Comments

View Comments (11)
  • Musicang
    4 years ago

    I felt this way after going on disability, and my soon-to-be-ex husband only helped add fuel to the fire by constantly making me feel like I was a burden and useless. After being off work for 7 years, and having been approved for disability the first time (which even he knew was pretty much unheard of !!! ), he informed me that he could no longer be married to me because he could not handle my MS. So much for our vows. I discovered (don’t ask!) a week and a half later that he was cheating on me.
    A year and a few months later, I am in my own apartment fighting for custody of my children as his verbal abuse of them has only escalated since I left. I know that nothing that happened was because of MS and being on disability. I gave up on life and went into a deep depression. I am now getting out when I can. I found ways to get the mobility equipment (power chair and accessible van) that allow me to take care of my kids. We are getting out to MS Society events, and I seek out low cost and free events in the community. We are having so much FUN!!! Even just hanging out at home, you would be amazed what you can do if you let yourself. I now know it is ok! I sought counseling, and it has helped. It is not easy to take that first step, but even in the best, most supportive family (my mom has MS and is very supportive) you may need that extra help coping. There is no shame in it. Best of luck to all of you.

  • Devin Garlit moderator author
    4 years ago

    Thank you! And sorry to hear of your troubles but it sounds like you have a great attitude and have really turned a corner!

  • Lainey
    4 years ago

    Thank you Devin for sharing your story. As I was reading it, all I could think was OMG this is exactly how I feel. I have voiced my guilt and frustration and sometimes even rage many times with my family. I just wanted to thank you for putting MY thoughts and feelings into words.

  • Greg-MSfl
    4 years ago

    Thanks for your reply Devin, and for being open enough to share the original post.

    As I was finishing my comments yesterday, a friend approached and asked what I was doing.
    When I explained I was posting to this site, he asked me if I felt any benefit from these articles. I told him “the greatest benefit is the ability to see that there are others facing the same things that I am”. I do believe that in itself contains a bit of healing, and it reminded me that even though we may not be able to contribute to the audience we once had, there’s great importance in reading and also sharing with others like ourselves with MS or other chronic illnesses.
    Life is definitely different. We’ve swerved down a different road. Maybe “up” a different road!
    I agree with Devin, there are many men I knew who approached their children’s landmark moments like High School graduation and they regretfully realized they spent too little time with them.
    There is no turning back, and no way to regain all we have lost. We have a choice every morning to enjoy every day, or to wake up on the wrong side of the bed. I always told my kids when they faced less than ideal situations, to remember there’s always someone who has it worse than them, and realize that with compassion.
    My favorite quote even before MS is this; “Life is 10% what happens to you, and 90% how you react to it!”.
    It might take us a while, but I think we might be able to rediscover ourselves and work with the cards we now hold.
    Obviously it’s no simple task, Instead of staring in the rear view mirror, we really need to focus forward, just like we did before MS derailed us.

  • Devin Garlit moderator author
    4 years ago

    Very true, life is what we make of it! And I absolutely agree that seeing that others are going through similar problems is very helpful. It’s nice to know you aren’t alone but more importantly, it’s nice to know that there are people out there that do understand, even if you don’t know them personally. That’s kinda why I wrote this article and the one before, it’s definitely not easy put it all out there like that but I know it can be very helpful to folks.

  • Greg-MSfl
    4 years ago

    Unfortunately, I can relate too well. It’s been almost five years since a major relapse caused me to go the disability route and stop working. I was 47, have a amazing wife, two kids, and I was earning about four to five times what I earn now with SSDI. Our daughter was diagnosed with leukemia that year, work was incredibly stressful and I knew MS was making it harder for me to be proficient at the career I had been good at over two decades. I feel guilty that any or every mistake I ever made may have caused this life I live. I feel guilt that my wife has to work more and even twice as hard as she once did. Our son needs new shoes, a new baseball glove, and his computer just died. Before disability, I could just go out and buy those items with no thought about it. We buy clothes now at Goodwill stores, and you get the point, all of which I feel is my fault. Fun is not often in the schedule as it’s clear that most people, friends, and even family, would just rather do all the fun things they do without including our family. Last July while visiting family, I listened just twelve feet away, as someone discussed how they are annoyed when I join conversations because I talk to much. I’m sure other MS patients have found ways to deal with the memory and circumlocution issues that effect conversations. I wish I could manage that but my mind doesn’t work like it used too.
    The guilt of not contributing, people not including us and then seeing they don’t even call like they used to, I always feel it’s because of me and MS. And I’ve not even touched on the pain and problems I face trying to be the old me. I discuss it with my wife occasionally but then I feel guilty that I’m bringing her down, though she never says or demonstrates that. She loves me dearly and I think God blessed me with her for many reasons. I don’t know if I offer anything for my family and just feel like a burden also. Somewhere in all that we’re facing, there has to be purpose, there has to be a better side to all this, some way we can redeem ourselves and our life.
    My son says he’s glad I don’t work 60 hours a week anymore. He’s happy I have more time with him and our family. We’ve got to hang on to the good things, and if we can focus on those and constantly give thanks for them, we should be better off.

  • Devin Garlit moderator author
    4 years ago

    I am sorry to hear but obviously I understand. I too am plagued by memory issues and I know I am constantly repeating things I’ve said. I can now see it in people’s faces and I’m just like, oh, sorry if I’ve said this already. It’s tough, I touched on it a tad in my last story but I too was making like 4-5 times as much before disability. To have that sudden drop is something that few will ever understand. And there is something about that happening as a man in today’s society that makes it even more crushing. But it’s all about perspective and seeing the good things. I think for every bad thing, there is a good things (they’re just incredibly hard to find sometimes). And having more time with your son and family is an awesome thing. Many people live there whole lives and at the end of it, that’s what they wish they had. Family is what it’s all about!

  • JULIE SAVENE
    4 years ago

    I too am constantly saying “I’M SORRY”. I had to give up alot over the last few years-Boy Scouts(hiking etc & I really like the outdoors), driving, laundry and cleaning (I still try to cook but mom is now my souz chef). I have to rely on other people (my husband or mom) to get anywhere. I am homebound most weekends 🙁 because of my lack of mobility,but I keep thinking everyone is better off because I am here-my husband, my children, my co-workers and my church family. I hope you can feel you are worth something to your family just by being there!

  • Devin Garlit moderator author
    4 years ago

    Oh me too! I’m so sorry that I feel sorry for being sorry!

  • Musicang
    4 years ago

    I find myself apologizing for apologizing. How insane is that?

  • Devin Garlit moderator author
    4 years ago

    If I had a dime for every time I blurt out “I’m sorry”, I’d be a rich man!

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