Comments about "Suffering" and Multiple Sclerosis

How people with MS feel about their daily challenges and how they cope...

Around some things, I tend to be dramatic. For instance, when I work on something unpleasant, I "toiled all day." When I have to attend a social function that I am dreading, I announce that "I would rather drink poison."

However, I usually do NOT introduce drama into my descriptions of life with multiple sclerosis (MS). I do not know why, as even a conservative description of some of my MS symptoms and many of my days would probably sound shocking to healthy people.

I really hate to hear people with MS described as "sufferers," and I have never thought of myself as such. I am a person living with MS.

However, when you take away the semantics and the emotion, let's face it - there are times when we do actually "suffer." Things get hard, then harder and then, just sometimes, they get too hard. I was in the midst of one of these periods when I thought that I should write a piece about it and share what helps me, even a tiny bit. Even thinking about writing this made me feel a little better.

We are all out there trying to make the best of our journeys, we all have our challenges - although we do this alone, there are lots of others doing it alone, doing it their own way. Let's share our ideas and see if maybe, just maybe, we can ease our collective burden at times when it gets a little heavier than usual.

I wrote this article,  On "Suffering" and Multiple Sclerosis, and many of you responded.

 Here are some things that other people with MS had to say about suffering (both in response to the above article and in general): 

  • I appreciate your honesty! We have plenty of people telling us to think positive thoughts, look on the bright side, etc., not so many who will say it’s okay to admit we’re suffering. The truth is, at times it really, really sucks to have MS. I’ve had it for 30 years, and I remember thinking that I just wanted to be able to walk when I was the age I am now. My disease has progressed very little, but I’m not happy every day just because I can walk. I’m still miserable and scared when I have symptoms, and sometimes I’m angry. But we learn to cope with the bad times and savor the good.
  • When writing about these issues, it is difficult to not descend into platitudes and clichés, and you have succeeded. An excellent column.
  • I have had MS for 20 years, my mom has had it for 54, and she is one of the happiest, best adjusted people I know and therefore a great role model. She has never been depressed and I can only remember a few days of deep sadness.
  • Descending to clichés myself, I try to remember what my Dad said, “You play the hand you’re dealt.” I have MS, so be it, get on with life. My epiphany came when I was driving down the street the summer I was diagnosed and said to myself, “It would be a beautiful day if I didn’t have MS.” Then, I said, again to myself, “Get over yourself, you self- indulgent fool. It is a beautiful day whether or not you have MS.”
  • I try my best to stay positive, which is hard when you are reminded every day (or at least most days) that you have MS. I’m just now on my way out of a very long funk. I let people get to me with their “there’s nothing wrong with you,” “you’re just lazy,” and the one we all love - “but you look so good!” As someone else has said, I’m scared of what I could lose and I still mourn the things I have lost. I cope, we don’t have a choice but to deal with it and I try to stay positive and push on.
  • Thankfully, most of the time I’m able to appreciate the beauty of a beautiful day. I was also struck by the comment about mourning the things that we have lost. Over the course of 30 years, I’ve grieved many times. But just as often, I’ve been grateful for what I’ve been given. I think that would be true even if I didn’t have MS. My favorite quote is from Virginia Woolf — it applies to both my fiction writing and in my life: “Arrange whatever pieces come your way.”
  • I appreciated your opening the subject of “suffering.” My feeling is that many of us would have made a smoother transition into the changes we would face learning to live with MS if our neurologists would have done some education. By the time you’re diagnosed, you’ve pretty much accepted the worst, so shock didn’t really play much into mine at first. If my neurologist would have sat with me for an hour or so, and explained to me that getting medications squared away takes some time, and that you’ll have days that are miserable, because you’re going to be depressed, days you won’t be able to talk or walk, days you think your going to strangle the next person that tells you “it could be worse” or “get rid of your stress, and you’ll be better!” It’s true that we may keep ourselves out of remission with stress and depression, but damn it, you’re allowed to be stressed, depressed, and feel sorry for yourself for awhile. Because, let’s face it, it’s ok to be scared, and for some people it is worse than a death sentence. It’s a slow miserable disease, that’s decides how your days going to be for you. I say all that to tell the one who is looking for support. The tough part does end, you will reach remission, and you will have great days again.
  • Having lived with this disease for 20 years you tell it like it is. I find the schizophrenic nature of the illness to be the hardest. You’re up, you’re down and you have ZERO control. Have had days when I feel so good (rare but some) and I think I could even go back to work feeling so clearheaded and energetic and then “wham!” next day out of it – brain fog, disoriented, dizzy and I have replicated everything I’ve eaten or done the day before. I have to remind myself have felt this awful before and it does eventually pass. In the interim I have to remind myself that this is MS and I am not having a stroke or need to get to the emergency room ASAP as no one can feel this incredibly weird without some catastrophic health meltdown. Amazingly I wake up the next day back to normal MS good!!!
  • I think the important thing to remember is if you have multiple sclerosis (MS), you are like a snowflake – you are like no one else in your symptoms or the way you suffer, so PLEASE for the newly diagnosed out there please don’t compare yourself. Since I was diagnosed, it has not been easy, because I have brain and spinal cord lesions and (among other things) my walking, thinking and coordination have all been affected. One common thread I keep seeing is the fact that we don’t like to complain because others don’t understand, and I’ve found this to be very true. A good idea is to only talk to good friends or someone in a support group who understands. The main thing I see in the blogs is that I believe we savor the good times maybe a little more than others, and my mantra is to find at least one good thing in each day and be thankful for all the little things.
  • The “Do not Compare” really hit home. I have been pondering that a lot lately. I think of my older sister who has led a charmed life, but then feel guilty because I don’t really won’t anything bad to happen to her. She is a nice person, but why do I deal with so much more (not just MS – other things, too). Also, probably 90% of the population walks better than me. All you have to do is go to the store and know you are one of the unlucky ones. Then I don’t feel that it is right to look at people who have it worse than me to feel better about myself. To me, that is also wrong, so you have it right when you say don’t compare. I have to keep squelching it. Staying busy and distracting myself helps more than being still.
  • I like your advice about finding “grace” in feeling like crap. I could relate to this based on something that happened to me this week. In my morning commute, I need to search for where all of the escalators/elevators are so I can exit the train terminal and wait for my para-transit ride. For the past few weeks, the escalator that I usually use has been out of service while work on two new escalators is proceeding. This means I have to walk up two flights of stairs, one foot at a time because I can’t lift my left leg. By the time I reach the top of the stairs, I’m exhausted. On this specific morning, I had no time to rest because my car was already there waiting for me. Fearing the car would leave before I reached it, I tried to walk as fast as I could, bracing on my cane and trying not to make my left foot drag too much. Just as I reached a few steps from the car, my left foot caught on who knows what, and I knew I was going down. I braced for the fall, but I knew I was going to struggle getting up. I work in NYC, and don’t let anyone tell you that New Yorkers are rude and mean. Out of nowhere, four people were at my side, literally lifting me off the ground to my feet. Even as I write this, tears are coming to my eyes. I felt embarrassed, sad, angry at my disability and my “suffering.” For a few fleeting seconds, the “why me?” feeling hit, but the fact that total strangers were willing to assist me rather than watching me flail on the ground, struggling to pick myself up, was uplifting. It doesn’t make the MS easier to live with, but it makes living with it and within it easier to accept. The assistance from my husband, other family members, my co-workers, complete strangers, makes it easier to accept. I can find “grace” in that.
  • Julie, a wonderful article. You know, as strange as it must sound, I just take those times when it is too much to acknowledge that YES, I AM SUFFERING – and there is nothing I can do about it. SO I just bless it, accept it, wallow in it, and usually within 12-24 hours, I am not only out of the rut but have learned something about myself that I never really knew or get a refresher course on something I had forgotten. Then I get up, dust myself off, and go at it again! It does not mean a person who is affected like we are with MS and other conditions is weak or selfish to just wallow in their self-pity or suffering. Sometimes it helps tremendously and gives our bodies, minds, and spirits some time to regroup and get stronger. Let’s face it – we have MS, it makes us look lazy-drunk-stupid-klutzy-stoned-etc, and it is tricky to live with. Some of us have very supportive mates, some of us don’t. But when I am in one of these suffering periods, I tend to try to do it alone, without burdening my mate with it. He always knows though and calls me on it sometimes. Says he see it in my eyes. Darn eyes… Anyway, here’s to all of us MSers – may we wallow deeply and rise joyously and triumphant! Bless you!
  • I like the quote: “Never compare yourself to others. Someone will always be better or worse than you are, but never the same as.” This little quote has helped me a lot. It carries a lot of truth I think. Stay strong everyone. Even the seemingly most futile and hopeless days still have a purpose.
  • Thank you for letting me give myself permission to wallow. I have only had MS for a year, but I have also been diagnosed with an “orphan” disease called PXE. I have to get injections in my eyes to keep from losing my vision. Add the MS injections, the busted shoulder from multiple falls and life has not exactly been a happy trail. Despite all of this, I feel guilty if I feel too sorry for myself. If I don’t get off the couch. If I wonder if my family would be better off with the life insurance money instead of me. Like so many have told me, I’m lucky-at least it’s not cancer. Yeah, not feeling the luck so much. So thank you for being real and for letting me be real. Eventually, I may stop wallowing and get on with it. See all the beauty around me. Right now, my heart is as blurred as my vision.
  • I think one of the worse things someone can say to an MSer is “at least it isn’t cancer, you don’t die from it,” that kind of thing. Having MS is no better or worse than having cancer, they are just different diseases. Personally, I die a little every day when people cannot understand what I am saying because my cognition is so bad, or I get really clumsy in public, or I start crying when someone says hello, or I forget to change my incontinence pad (I call it my diaper) and I dribble so much I have to change clothes, or I really really want to see my grandkids celebrate their birthdays but can’t because I don’t travel well. MSers do die a little every day, just like everyone else with a serious medical problem. Honey, YOUR pain and medical conditions are just as bad-at a different level and in a different way. You have every right to have a ‘poor me’ session, we all do! Just don’t let it take over. I myself have MS, FIbromyalgia, Chronic Fatigue Immune Dysfunction, Osteoporosis, Osteoarthritis, Involuntary Emotional Expression Dysfunction, COPD, and a couple others I forget the names of. Damn right I wallow every once in a while, I earned it! But I do not let it take control, ever.
  • I cried, laughed, then cried again when I read your blog. It hit so close to home. I am in a funk place at the moment. (What a great word, "funk.") It helps to know that my reactions to this MS is so like others. I’m tired of the hard work it takes to get through the day but as I am so stubborn I won’t let it beat me. Hang in there everyone. Julie, thanks for telling it like it is.
  • Okay, so I think I’ll stay off this site. I’m pretty pissed off right now and all of the positive affirmations and pithy quotes are pissing me off even more. I know they are all meant with kindness and kinship, but I guess I’m just not ready for the hugs and hang in there’s. I’m hanging in alright, by a thread. And honestly, I’m not ready to stop being angry. I have a right to be angry and I’m holding on to it. It’s the only thing I have a smidgen of control over. Can’t control my vision. Can’t control my legs. Can’t control my speech. Can’t control the exhaustion. But by God I can control the anger. So I will control it long enough to wish all of you the best on your journey with this bitch of a disease. Maybe one day I’ll come back filled with insight and uplifting words. Right now I just want to punch the wall. Not a very positive affirmation and you all seem to be in a better place and don’t need me bringing you down so, I sincerely apologize if I’ve hurt anyone’s feelings and wish you all God speed.
  • I’ve grieved for my future. Those things I thought I would do or expected I would do have been reduced to just wanting to be able to walk and use my hands. And also not being incontinent at too young an age. I’ve gone through the anger, pity, depression, despair. I’ve gone through months of thinking, “I can do this” followed by months of, “No, I can’t”. I find that it runs in cycles of ups and downs rather than being a linear movement through darkness with light/acceptance at the end.
  • Before my diagnosis, I used to put things off…I’ll do that tomorrow or next year….I don’t know anybody at that party etc. etc. Now I feel like I don’t have that luxury, so I’ll do it today while my body still works. I don’t know what it will be like tomorrow.
  • I received my diagnosis June 19, 2009 at the age of 46. This disease has taken my family and I on quite the rollercoaster ride. My initial onset of M.S. left me in a wheelchair, in paindepression, dazed and confused. At that time, I was working as a full-time Admin. Assistant and going to night school towards my Bachelor’s degree. I was blind-sided and it took me almost a year to learn to cope with my new lifestyle. I eventually went back to work full-time and did obtain my degree. How I managed these hurdles was due to family support, good medical treatment, learning about M.S., joining a M.S. support group, individual counseling, and support at my employer and University. I still have “bad” days when I struggle just to get through the day but I have learned many things through Julie’s articles and blog and I want to thank each and every one of you who bravely share your experiences with me. Some of the reader responses really scare me but mainly I gain strength from your tenacity and determination. Stay strong!!!

Bottom Line: As I wrote in my article,  On "Suffering and Multiple Sclerosis, although many of us take offense when we hear the term, "MS sufferer," occasionally, we do suffer in the truest sense of the word. I think, it's important to acknowledge that there are these periods of suffering. Get angry, get sad, wallow in self pity if that helps. Just know when to stop.

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