The Multiple Sclerosis Community And Letting Go Of Anger

“One of the most courageous decisions you’ll ever make is to finally let go of what is hurting in your heart and soul.” ~Brigitte Nicole

Growing up I enjoyed listening to people’s stories, trying to help if expressly asked. When I went back to school for my patient advocate certificate one of my courses dealt with something I already knew: listening with empathy and compassion.

When I write or speak I apply these principles at every corner.

But I’m troubled whenever I hear negative comments within our own MS community about each other. It’s true that MS manifests its ugly head in each of us differently. We can be envious that Sally can walk and we can’t, or Jane can afford the gold standard of insurance that we can’t. That’s understandable.

That’s human nature.


We want a better quality of life, we’re tired of living with the monster and want to have what someone else has that makes their life better.

But if someone else has the ability to do something we can’t shouldn’t we feel good for them instead of feeling anger?

Wouldn’t we want people feeling good for us if we were doing well?

If someone can walk, work or travel do we have to harbor anger toward them because that’s not our life, and we refuse to acknowledge any happiness for them at all?

When I was first diagnosed I decided to lead a support group for the National Multiple Sclerosis Society. They were in need of a leader for a local group and I thought I’d be perfect for the job. I scheduled some wonderful speakers who were MS specialists. My fiancé (now husband) and I went to the meetings together.

After three meetings I threw in the towel.

Why? I was the only MSer who walked through the door; the others had wheelchairs, walkers and canes. They told stories of husbands and boyfriends leaving them after their diagnosis, and they repeatedly whipped their caustic comments at me. Their anger was palpable.

Did I deserve that?

In those early days of living with my MS I was made to feel like a pariah because I could walk through the door. Because I had a fiancé. Because I didn’t need an assistive device.

I felt horrible.

It’s difficult not to feel anger about our MS. I’d love to travel, not need to take long daily naps, be more productive and feel my legs again.

It’d be nice not to catch every cold that floats through the air, feel awake and vital after 5 hours of sleep and not worry about my million bathroom breaks every day.

But I refuse to be upset if another MSer lives a better quality of life than I do, experiences small MS victories that I don’t, or gets more exposure because of fame, wealth or ability.

We’re all on the same team. We all deal with our private brand of MS no matter what the media reports.

I love the MS community. They empower and inspire me every day. You ALL inspire me every day. Let’s continue to empower and inspire each other. We deserve that.

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 (18)
  • chalknpens
    3 years ago

    Cathy, your essays always give me pause for thought. I’m one of the ‘lucky ones’ with few mobility issues and with invisible cognitive issues … I spent a few early years feeling guilty about losing my ability to organize, to remember, to function as I always had as a classroom teacher. Fatigue was a major detriment; depression resulted in self-disappointment, and reading all those angry comments at MS World brought me to believe that others must resent or disbelieve my diagnosis. In fact, I disbelieved my diagnosis. After nine years, four with treatment and the past five without, I have learned that MS is the epitome of the lackadaisical saying, “It is what it is.” I’ve written what I can about it, and have moved on to just living with “senioritis.” So many people express age related forgetfulness, fatigue, etc., it is just easier to agree with them and give up trying to inform that that it is different with MS … easier just to deny it, live with it and find the positives in life.

  • Cathy Chester moderator author
    3 years ago

    It is easier to JUST BE YOU and know that you live with what you have and not allow others’ opinions affect you and who you are. That, my friend, will be a step closer to wholeness and wellness. And you certainly deserve it.

  • Larisa (Ris)
    3 years ago

    This is a rough subject. I can honestly say that I don’t involve myself that much with the blogs and online communities that much anymore. There is drama at times, that I am just too tired to deal with. I do occasionally participate with a local support group, who are luckily a great group of people. Personally, I do have to admit to being an angry MS gal, but I am angry at the disease not others. I know sometimes my boyfriend gets the brunt of that anger, but I have made the commitment to go to therapy to try and work through it. He goes with me as well.

    Maybe it is just my life experiences and the fact that I am a hospice nurse ( in the few hours that I can handle doing it anymore) that allows me to keep an open mind and remembering that every single one of us experiences the disease differently. I deal with that very final life step that we must all take, and in doing so have cared for many types of patients, including those with MS. Even then, in the final stages, the MS has effected each of them differently.

    My two biggest problems are a personal guilt that I can not do what others with MS can, especially when it comes to my boyfriend and his kids;and getting angry at my co-workers, who are nurses and should know what the disease does. Yet, there are some who still question my absences and actions, even with FMLA in place. If I look at all that in a positive way though … ultimately, if my boyfriend had an issue with what I can’t do he wouldn’t be here still; and the co-workers? their ignorance provides an opportunity for education, which is an important part of nursing anyway :o)

  • Cathy Chester moderator author
    3 years ago

    You must be a very special person in order to do hospice. I applaud you for that. Not everyone can do that work.

    As for the rest we simply (well, not that simple, but we try!) must realize that our story is unique to us and we have to travel down our own road at our own pace. Others will always have something to say because that is the human condition. But I feel that the people who care and understand are out there, and there are more of them than people who don’t.

  • Katroc
    3 years ago

    I absolutely look forward to getting my emails from multiple sclerosis.net because I know that I will be reading some terrific viewpoints and wonderful writing. I also enjoy the comment section. And dead brain walking you should join this blogging because you are quite an excellent writer! I also seem to recall that somebody quit blogging because of that anger that is out there. We need you to still keep writing because you are one of those kinds of people that I need going on year two of my diagnosis of MS. I am still in the “sponge” stage. What I mean is, soaking up all the information that I can and sorting through it for what is best for MY MS. Keep on writing!

  • Cathy Chester moderator author
    3 years ago

    I agree with all you said. Never, ever quit because of what others say or think. They are not our story! Bravo to your comment.

  • Catgirl66
    3 years ago

    Cathy, here’s another with a dark tale of misplaced anger, but this one deals with the wellbies & HIGHER functioning MSers directing their anger at me for my decreasing ability to meet their expectations. Apparently, because I can usually still walk unassisted I should be able to pull 12 or 16 hour shifts, cook gourmet meals, keep a spotless house & still have energy to socialize. Yeah, a touch of ADHD, but while my mind still races, my body doesn’t come close to keeping up. One of the most moving moments I’ve had in far too long was my husband’s supporting my decision to reduce my work hours to 24 per week– and then he shocked me by suggesting that I quit as soon as my car is paid off. I can understand those who have been
    abandoned
    or can no longer walk being angry that I have blessings they don’t. What blows my mind are the bosses, co-workers, friends, family members, other MSers & my former neurologist telling me that it can’t possibly be as bad as I’m insisting & I should just get over it. But the only thing I’m really angry at right now is this %&#%$!&% smart phone

  • Cathy Chester moderator author
    3 years ago

    Bravo! I agree with you. And bravo to your darling husband as well!

  • Lisa
    3 years ago

    Thanks for this Cathy. And thank you “deadbrainwalking” for eloquently saying the thoughts I would have had a very hard time putting into words. It would be so nice if this dreaded disease acted the same in everyone. I spend a lot of time listening to people tell me how lucky I am because I can do lots of things that their uncle, cousin, friend can’t, so mine isn’t bad at all. Yes, I am lucky in some ways. In other ways, not. I co-facilitate workshops on living well with chronic conditions.This negativity toward others almost never happens in these groups because they are focused on the fact that everyone’s experience with their condition(s) is different. I think this is aided by the fact that there are a variety of chronic conditions represented. Whenever I encounter a participant who also has MS we bond a bit and discuss our different experiences during break time or before or after each of the sessions. This works for me and is the way that I remain connected.

  • Cathy Chester moderator author
    3 years ago

    Lisa,

    I’d love to know more about the workshops you co-facilitate. I think the more we communicate the more we understand one another. Good for you for leading such a positive group where this will take place. Go get ’em! So thankful you shared your thoughts.

  • deadbrainwalking
    3 years ago

    I’ve also encountered enough negativity and anger on MS blogs and groups to cause me to shy away, but the bulk of anger that I’ve encountered hasn’t been directed at others due to their differences in severity of symptomology, but rather in their differing approaches to treatment. I became so burnt out on people actually becoming angry with each other if one of them preferred a particular treatment and the other had less than favorable results, or if one person chose an alternative medicine therapy and the other chose traditional treatments, or even if one person chose to forego treatment of any kind while others couldn’t dream a living without. I can understand people becoming impassioned about the way they choose to manage their life altering illness and wanting to share their reasoning and choices, and it’s only natural that others may feel that their differing choice is better or more correct, but it’s in seriously bad form to voice such arguments in anything less than a friendly conversational tone. I’ve seen entire groups split down the middle, each side becoming louder and more insistent that their opinion is the correct opinion. It’s extremely frustrating for the rest of us who are just trying to find like minds with whom we might share our collective experiences and learn from them.
    As far as encountering people who are angry at others’ good fortune, so to speak, the most poignant example of this that I have seen was an extremely heated argument that arose when one person stated quite emphatically that there was absolutely no way in which people who did not have a chronic illness could possibly understand what we go through each day, and the person cited their very unfortunately negative experiences with friends and family as the basis for their deduction. Those of us who had had more positive social support experiences expressed our gratitude at having these people in our lives, but the discussion became quite intensely negative when the original speaker and others of the same opinion began insinuating that it was just a matter of time before our supportive friends and family could no longer tolerate our illness. For me, that argument, and how ugly it became, was the last straw. I withdrew from pretty much every online support in order to avoid such stressors.
    I will say this though: I had encountered on occasion that a discussion may have been populated by very mixed members, but the bulk of those contributing might be fairly high functioning members of our group, making complaints such as “I’m soo exhausted by the time I get home from work…”, or “Today I was too achy to even do yard work.”, and eventually one brave member would tentatively ask, “Is it okay that I feel frustrated by these comments, as I haven’t been able to work or do yard work for years?” My answer to such a question would be that yes, it’s definitely okay to feel frustrated. And I believe that, provided a person is not directing their frustration AT other members, but simply voicing their frustration, it should be accepted and others who perhaps do have the good fortune of being higher functioning should not take offense, but should listen, learn from what is being stated, and offer support to those who are having greater struggles.
    The stark reality is that MS is a degenerative illness, and while we’re not all following the same curve, those of us who are experiencing greater struggles than others likely remember a time when we could work a full day then go home and so yard work. We also remember times when we would work a full day then feel exhausted afterward. Then there are plenty of people out there who could clearly remember when they were functioning at our level and wish they could regain that functionality level. We should feel safe to discuss how this makes us feel, because we have a great deal to learn from each other. It should not be verboten to explore this topic with our fellow MSers. We just need to be mindful that our frustration over what we’ve lost or what we stand to lose should not be transferred to those people who may benefit from hearing our experiences, and who may help us to gain perspective on our own.
    I find it disheartening that I’m not the only person out there who felt so impacted by others’ negativity in what should’ve been a safe space that I withdrew entirely from such venues.

  • Cathy Chester moderator author
    3 years ago

    deadbrainwalking,

    Wow. I’m not sure how to respond except to say I think you are one helluva writer and someone who feels deeply and thoughtfully. I say you have such great value that we need your unique voice to add to the world. As Lisa said above you expressed so very eloquently what many of us feel. I wholeheartedly applaud you for that, and my wish is for you to continue to speak out. Your opinions make a difference – even if you think they don’t – they surely do. They made a difference to me.

    Keep on being exactly who you are, and I hope I hear from you again and again!

    Thank you for opening your heart to me and to everyone here.

    Best always~
    Cathy

  • kitminden
    3 years ago

    Sometimes it is hard to listen to another who is doing better or hasn’t had the same negative impacts as oneself but there’s no reason to be angry with each other for those differences. MS is hard as there is no one to blame. We have to rise above and find sisterhood and brotherhood.

  • Cathy Chester moderator author
    3 years ago

    Kit,

    Whenever I write I keep you in my mind’s eye because you and I have different journeys as far as how MS has manifested itself, but together we are traveling and it’s been a joy. My wish is the our entire community will band together as we have to support, enlighten, educate and listen to each other. I always have your back as you have mine.

  • Diana Chapman
    3 years ago

    I understand and know what you’re saying … I used to jump in on any MS related blog and answer questions and now I avoid them entirely because the people attack me because they’re angry with their situations and it gets really ugly and personal. In my mind I was trying to help squash some of the fear people have about their treatments etc. and all people did was say mean things to me so I stop blogging altogether and I think that sad…

  • Cathy Chester moderator author
    3 years ago

    You are a good and decent person trying to help, Diane. That’s what I am saying, that the anger and misunderstanding should stop. We have no control how our MS manifests, but we do have control how we treat one another. I’m so sorry you had to go through that, but know you are not alone out there. Your voice does matter and always will. I hope you will reconsider blogging!

  • Kim Dolce moderator
    3 years ago

    Very well said, Cathy. What’s funny is that I recently submitted an essay arguing in favor of embracing anger as a coping tool, lol–but only if it is directed at the walls while we are out of earshot of others.

    Though many “haters” populate comments on the internet in general, a health forum is definitely not an appropriate place for such expressions.

    Before we think about railing at others, it might be a good idea to envision the following disclaimer:

    “No MS patients were harmed during the making of this rant.”

    Thank you for reminding us to be supportive and kind to each other.

    Kim

  • Cathy Chester moderator author
    3 years ago

    Love that rant, Kim! Hahaha! And perfectly said.

    I was thinking about what you said last night – to embrace anger. Sometimes it’s good to do that. But for me, working through anger works better. It’s been too toxic for me. To get rid of the anger is difficult. So I try to get over it, and continue the work of writing for the MS community as best as I possibly can. That’s all we can do, right?

    Thanks so much for sharing your thoughts. I love hearing from you!

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