Being in a Minority and Feeling Isolated

Does anyone feel resentment towards those with MS who are better off than yourself? Not resentment towards healthy people without MS, but towards those supposedly in the same shoes, but whose MS hasn’t progressed as quickly or as far, and who can still function well in their daily lives despite their MS?

Let me explain where I’m coming from.

People with SPMS make up a minority

I’m classified as having the secondary-progressive type, and I know that people with SPMS make up a minority within the MS community (so do those with primary-progressive). Those with the relapsing-remitting type by far outnumber the former ones. I used to belong to that group for the first 16 years of my MS journey. During that time I felt I had a connection with others sharing the same fate.

But for the past six years I’ve been classified as secondary-progressive, and my MS has been progressing particularly fast and to a point that many with MS will (thankfully!) never have to face. Generally I feel happy for each and everyone of us whose MS is progressing only slowly and allowing them to lead a fulfilled life with minor limitations. I often hear of people who were diagnosed decades ago, and yet they are still walking. Yes, they may have their issues: Fatigue, perhaps some cognitive issues, or having to rely on a cane on bad days. But they can still function to a certain degree and have a life that to some extent resembles their life before MS.

Still a mystery

It’s still a mystery why some people’s MS is relatively mild, while others’ progresses more quickly or is more severe. Is it the DMDs, their diet, their general lifestyle, is it in the genes, or is it just down to pure luck? We may know one day, but we certainly don’t know now.

Many people struggle with the diagnosis of MS, although I feel that at least to some degree it’s not the symptoms they experience and the limitations they face in the here and now, but the uncertainty of the future. I was one of those who seemed rather unfaced by my diagnosis 22 years ago. Probably because I was in denial. When several years later my symptoms became more obvious, and I could no longer deny that I had MS, I seemingly took it in my stride. There was a moment of acceptance, when I had to admit to myself that I no longer belonged to the healthy part of the population, that I had a chronic condition that forced me to slow down and adapt my lifestyle around the disease, and which may get worse over time. But I felt that by accepting that, I could move on.

Of course there were times when I wished it all away, wishing I could go back to my former healthy life, jumping out of bed and under the shower in the morning in five minutes flat, or working long hours at the office, with energy to boot. Yes, there were times, when I was sitting in a street cafe, watching people walk by, thinking how nice it would be if I could just get up from my chair without even thinking whether I could keep my balance, and walk alongside them, without having to pace myself, or without having to rely on a cane for support. But never did I feel resentment towards all those healthy people, or at least not as far as I recall. They were in a different category, beyond my reach. There seemed no point in comparing myself to them, although at one point in the past I had been one of them.

My deterioration has been fast

But what happened over the last several years is that I seem to have developed a resentment towards those with MS who seem to be getting a better deal than me. Granted, I got a crappy deal: My deterioration has been fast. I haven’t been able to stand for the last six years. I can no longer transfer by myself. My left arm and hand are paralyzed, and my right side is getting weaker. My days revolve around my lengthy morning routine to get me up and into my chair (and vice versa at night), personal care administered by others, physical therapy to at least try to hold on to the little ability I have left (though gradually losing that battle), Internet, TV and napping. that’s my day in a nutshell.

So when I read about so many people with MS, who can still go out and work, albeit with some limitations, or whose symptoms can be lessened or relapses prevented through medication, I’m outright jealous. Jealous because, although we share the same disease, they are getting a better deal than me. Non-disabled people are in a different category, so I can no longer identify with them, nor do I want to. It’s a different league altogether, so it’s not relevant. But people with MS are in the same league, so I feel I should be able to identify with them and compare notes. Yet, I find myself unable to do so because the majority can’t identify with someone like me, whose ms has progressed this far. And although I know it’s wrong, and I feel bad for doing so, I resent them. Or at least the fact that they got a better deal than me.

Little in common

Most chats I have with others online fizzle out after a relatively short time because we seem to have so little in common. MS, yes. But they seem unable to relate to my feelings and my daily life – and vice versa.

I know, I’m a minority. Not as someone who has MS among a population where the majority of people obviously don’t. But as someone with SPMS, which makes up only a minority share among those with MS. And even as someone with a severe case, within the group of those with SPMS. A minority within a minority.

If there were more of us – people with advanced MS, who can no longer lead an independent life -, would that make me feel better? It obviously wouldn’t change my daily life, but something inside of me thinks that it would make it easier for me, as there would be more people that I could relate to and compare notes.

Those may be strange thoughts, and if anyone feels offended by this, then I apologise.

However, I do wonder whether there is anyone in a similar situation who – at least from time to time – harbours similar thoughts – and is struggling with them.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (26)
  • Carol
    7 months ago

    Yes I, unfortunately, feel resentment toward those MSers that seem to be enjoying their lives normally and are able to walk. They don’t know the isolation and the having to be dependent on others that we feel. I think it must be genes and not simply luck. I try my best to project a positive view to others.

  • ClumsyMumsy2
    7 months ago

    Haha! Thank you! I thought I was the only one!!!! I think it is natural to feel that way. I used to be one of the “better off” MS’ers. I realized though I was angrier or more resentful of the MonSter rather than the people.

  • tunderdue
    7 months ago

    Yes, of course I compare myself to other MSers…and of course, I start to feel bad, as I realize others with my disease are still working for employers, and still walking, and even running! for MS. But I’m sure you realize as I do, that comparisons do nothing, but make us feel even worse, as we cope with MS. So I’ve learned to find happiness in the fact that some people still achieve much, in spite of their MS. And I focus instead on just myself. I remind myself that it take a heck of ANY person, to cope daily and nightly with MS. I am a wonderful person, to be able to face this disease! And I hope that you, too, realize how special you must be.

  • maryelaperezpinkston
    7 months ago

    Have you heard of LDN?

  • Whatevermom
    7 months ago

    I’m so sorry- I’m in MS Yoga class with people who have a variety of conditions- the guy with the best attitude has progressive MS and he fairly young. His legs are stiff and won’t move. It inspires me every week even though, MS-wise I have nothing to complain about. (But alone I get depressed)

  • Alygail
    7 months ago

    Oh my gosh, yes. I know that it’s petty and childish.
    But now that I’ve lapsed into secondary progressive MS, and I’m “too sick” for any clinical trials – because I lost the ability to walk, I wonder just exactly how you can be classified as SPMS and still be ambulatory.
    Seriously.
    I’m an RN, I can’t work because I can’t walk and I’m losing my hands – but my mind is fully intact.
    I wish I had ALS instead of MS.
    Then you get 2-8 years and it’s over.
    This crap goes on forever and ever, without end.

  • rolly author
    7 months ago

    thanks for sharing your thoughts, alygail. it proves to me that i’m not alone with such feelings. your statement about ALS may sound very harsh to many, but i know exactly what you mean!

  • NightWolf
    7 months ago

    Never

  • Julie
    7 months ago

    I don’t think your thoughts are strange or even wrong. When we have our DX and our physical or even mental problems that come with it I believe that is only human to question “why me and not them”.

    I’ll take it even a step further and wonder why MS magazines seem to put the most body-able people on their cover. Sometimes I feel like these being rubbed in our face and I wonder why I can’t run or even walk a straight line. I would love to go hiking in the mountains again.

    You aren’t alone. I’m sure others with physical problems ask themselves the same questions or feel the same as we do. Still, I am really happy for those that are able. Sometimes I just have to sigh and wonder why I drew the short straw.

  • HeatherH
    7 months ago

    Grateful for all the honesty in your article, Rolly. These are very real and tough feelings to wrestle with. My dear friend was recently diagnosed and I’m working as a patient advocate on FlywheelMS and honest words like this help me understand how to do a better job representing MSers in my work. Sending you a big hug and thanks for helping me learn how to be a better community member. Please keep writing your truth! <3

  • rolly author
    7 months ago

    thanks, heather. your words mean a lot to me!

  • wandaholt
    7 months ago

    Thank you for sharing your story and your struggle with this disease. I identify with your frustration regarding the “uplifting stories” of those doing well with m.s. Written as if their successes depended on fortitude or attitude we know those stories only serve to make some of us feel bad about ourselves even when we have a thankful attitude for each moment lived and believe there is a purpose in everything.

  • Pam
    7 months ago

    I do not think of these thoughts as strange, I think of them as completely normal. I think it would be strange if you didn’t have these feelings.

  • potter
    7 months ago

    I am one of those MSer’s that is still walking (not great) but I feel guilty when I am around other people who are in much worse condition. It is not just other MSer’s it can be people with cancer or other diseases. I don’t know how to handle those feelings. Potter

  • Allison Presley
    7 months ago

    Hi, rolly, and thanks for voicing your thoughts about MS progression. I feel like i’m in the same boat as you … more rapid progression that doesn’t seem to stop. Losing contact with the ‘normal’ world and even most of the MS world, too.
    I don’t want to negate anyone’s MS experiences, but it does hurt and anger me that we see so much of the “I’m doing great in spite of MS” and very little of the struggle and small triumphs we SPMS’ers achieve. Today, my victory is transferring to and from the toilet. I can usually stand enough to do that, but yesterday wasn’t one of those days.
    I also wonder about my life next year, three years, more, down the road. I’m not ‘young’ and neither is my hubby/caregiver. I wonder when other health issues will rear their ugly heads and trap me more than I already am. I feel isolated now, much of the time. I’m concerned about the future. I like to think that I’m still mostly independent, but the fact is … I’m not, and I’m losing more ground, sometimes over the space of a few days.
    I am usually up-beat, in spite of my many challenges, but with each slight decline, it’s harder and I’m finding myself slipping into apathy. It’s extremely frustrating and disheartening.

  • rolly author
    7 months ago

    thanks allison for sharing your thoughts, which i can very much relate to. progression is so fast that i feel i’m always trailing behind, with no chance of ever being able to catch up.
    and yet, we do have the small triumphs. for you it may be that you can transfer to and from the toilet by yourself. for me it’s holding a cup without dropping it and spilling the drink all over myself. i need those small victories, even if they are becoming smaller and fewer inbetween.
    i try to be positive and take one day at a time. but i cannot help but wonder about the future. i know that worrying won’t change the future. but as you said, with every small loss of function, with every slight decline, i feel that i’m losing ground. it was suggested to us already two years ago that a care facility may be the best option for me, as it’s becoming harder for my wife to look after me. back then, we both dismissed the mere thought of it, thinking it was an outrageous suggestion. but since then i have practically lost all my independence, and i’ve started to wonder whether it’s fair to ask so much of my wife, and whether it wouldn’t be easier on both of us if i moved into a home with 24/7 care. i’m sure it would break my heart, as well as hers. but the thought is on my mind quite often these days.
    yes, it’s extremely frustrating and disheartening.

  • ClumsyMumsy2
    7 months ago

    I was raised the same. Illness in others never frightened me.

  • LuvMyDog
    7 months ago

    Everyone is different, everyone with MS obviously has their own unique experience with MS.
    From the time I was a kid I was taught that I’m better off than some, worse off than others. That applies to just about everything in life.
    I don’t resent anyone who has an illness, I know those who do suffer in their own way. I was diagnosed with MS 37 years ago and as I’ve aged, MS has become more of a burden.
    I don’t have anyone to help me, I do everything for myself, which means I have to keep exercising, lifting weights, staying as strong as possible.
    My neurologist of 23 years was a great guy, he kept a close watch on me and gave me a lot of good advice, one thing, plain and simple, “keep moving or you won’t be able to.”
    I know there are people who are worse off than I am, many are much better off. You can’t resent anyone who has an illness, they didn’t ask for it.
    Just be glad you’re on the green side of the grass, live your own life, do the best you can.

  • rilano
    7 months ago

    Hello, great article. I am 25 years old, Dx RRMS 5 years ago. I understand your feelings, as I recently moved to an environment where I made friends with another young woman who has RRMS. With her Dx she picked up Thai boxing, is super sporty and optimistic, and full of energy, so meeting her just killed me. It reminded me very much of my attitude soon after my Dx, and it just hurts so much to see her with the ‘can do!’ attitude now that my symptoms have been piling up. I’m just tired.

  • Anonymouse
    8 months ago

    Great writing, Rolly. I currently have RRMS, and you most certainly have not offended me.

    I think that the overload of cheerful stories about MS (in general) paint a very skewed and unrealistic picture of the disease. The darker side of MS is seldom presented.

    Like Devin, I applaud you for speaking out.

  • Devin Garlit moderator
    8 months ago

    Rolly, I absolutely feel this way, and often too. I’m not the most proud of it, but it happens. It’s natural. It can feel like even more of a slap in the face than seeing someone without the disease. It certainly doesn’t help that many publications and organizations love to run, what they consider, feel good type stories. Stories about people with MS that are running a marathon or climbing a mountain or something like that. Even just seeing people with the disease that are still able to work bums me out some. Definitely don’t feel bad about feeling this way, a lot of people do. I applaud you for writing this!

  • rolly author
    8 months ago

    Devin, thanks so much for your response! Good point on the ‘feel good’ stories. I guess they don’t want to scare those that are newly diagnosed, making the point that an MS diagnosis doesn’t automatically mean a future in a wheelchair. Understandable, I guess. But it somehow makes the likes of us feel ‘left out’. I wrestled a long time with myself before writing my thoughts here, afraid that people would feel offended, but I’m so glad that I’m not the only one feeling this way!

  • braindeadmom
    8 months ago

    My sister and I both have MS. I was dx several years before her. She, too, resents ofhers who have not progressed as rapidly or experienced as severe deficits as she has experienced.

    Because each person’s cpurse can be SO DIFFERENT I think it is probably a normal reaction to experience some resentment for those whose disease progression is less severe. Recognizing that u have those feelings is the first step in not allowing them to “run your life”.

    Just becuz I don’t share ghe same symptoms, doesn’t mean I am incapable of empathizing with loss of function and the fear of further progression.

    When cognitive issues forced me to stop working, I saw a behavioral neurologist. She suggested some counseling with a therapist familiar with MS. I found it helpful to have a safe place to vent things I didn’t feel I could share with others. I don’t know if u have ever explored counseling options, or have any interest in doing so, but perhaps being able to vocalize your resentments/feelings in a safe/nonjudgmental space might b helpful??

    At any rate. I hope today was a “good” day for u(whatever that entails)

  • rolly author
    8 months ago

    Thanks for sharing your thoughts. It helps knowing that I’m apparently not alone out there with such feelings. Am I right in understanding that your sister has progressed more quickly than you, although she was dx several years after you? If so, it wouldn’t surprised me at all that she resents that fact, with someone so close as a reference point.
    Thanks for your advice. I could imagine that talking about my feelings in a ‘safe environment’ might help me control them a bit better.
    Just to note, though, that I don’t feel like that all the time. It’s on my bad days when those thoughts creep up. But I have my better days too, still – thankfully.

  • Carol
    8 months ago

    Yes, sometimes, I know it is wrong, but I just can’t help being a little annoyed that other MSers are able to do more than I can with my MS.

  • rolly author
    8 months ago

    I’m a bit relieved to know I’m not alone out there with such feelings. Thanks for sharing your thoughts.

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