Skip to Accessibility Tools Skip to Content Skip to Footer

Rose Colored Glasses: How Do We View MS?

There was an immediate outcry in the Australian MS community when their patient organization ran a fundraising campaign that shows the very dark side of MS.  You all know the picture I am talking about –the crippling, life sucking monster that some with MS live with.  They used the rationale that they needed to reach their donors at the lowest emotional point to get them to open their wallets the widest.  MS Society of Western Australia said that people respond more if the picture is grimmer than if they see people living successfully with MS. You can read more on this story and the various reactions  at Pity Porn or Outrage over saw style charity ad. 

The bottom line for this campaign seems to be give money now or people with MS will be trapped and die.

I continue to waffle on how I view the presentation of MS – many people when newly diagnosed immediately jump to the conclusion that they will die from Multiple Sclerosis.  Many times over I have said MS won’t kill you – it doesn’t work that way.  But I also have to explain that the complications of MS can become life threatening and even life ending. This thinking fits right in there with other confusing & contradictory sounding MS statements such as MS is not inherited but we can be genetically predisposed to having MS.

Technically,  MS itself is rarely a killer disease, unless we happen to have brain stem lesions that can interfere with critical autonomic functions such as breathing or our heart beating.  That, from what I read, is very rare. What are more common are the complications from MS, especially for people with Primary Progressive MS (PPMS) that can lead to serious illness and death.  We all know the importance of activity – especially to keep our muscles strong, working out our lungs, and our circulation going.  Picture being in a wheelchair and the effects on the body. – this inactivity increases the odds of pneumonia, which can be a killer. Dysphagia, the condition that makes swallowing difficult, can cause a person to choke and aspirate fluids into the lungs, also setting up the right conditions for pneumonia along with other problems.

Infections are more likely to occur if we are sedentary- this includes UTI’s and pressure sores.  The cause of UTI’s can be obvious and if left untreated they can cause sepsis, a life-threatening infection carried in the bloodstream.  Pressure sores, often called bed sores, happen when we sit or rest on the same skin contact points over and over, until the skin thins and ruptures.  All the germs around us are opportunistic and have no problem invading our body through bed sores.  Caregivers have to be especially diligent in skin care and watching for any signs of problems with the skin.

There are other possible complications that aren’t discussed much, such as poor nutrition or depression, both of which can be amplified by the progression of MS.  The list might go on but you get the general idea – living with MS in its most aggressive form will erode health.

It used to be that people with MS had a lifespan about 7 years less than the general population, but that has changed.  The availability of the disease modifying therapies has slowed MS progression, keeping the majority of us out of wheelchairs and away from the possibility of developing life –threatening conditions.  Most of us with MS can now expect to live as long as the next person, but there are still those people who don’t respond to the DMTs or who have PPMS who face the possibility of a shorter life span.

I like wearing the rose-colored glasses to talk with the newly diagnosed and horribly frightened people out there who need reassurance and comforting.  But I also know I have to take those glasses off and look at living with MS realistically for so many people who struggle with much more.

So which picture of MS should we share with the newly diagnosed and with the general public?  It is possible to live well, despite having multiple sclerosis….  OR  MS is a life-shattering diagnosis in many ways, including the possibility of a premature death.  The public should know all the different faces – the big question is how do we find that right balance and share the message of MS?

Wishing you well,

Laura

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

  • rmdanielsom
    5 years ago

    I agree with Christie and the Australian Society. People should be frightened of an MS diagnosis. They should also be angry.

    It is pure greed and an unwillingness to acknowledge or face a killer that has 11-12 DMTs for MS and no treatment or cure.

    MS kills.

    It kills the spinal cord and the brain. You cannot live without your brain and its attendant spinal cord. Its that simple.

    I have PPMS. I DO NOT “live with” MS. I live INSPITE of MS. I fight this killer every minute of every day.

    Each day when my husband comes over to my hospital bed to wake me up he expects to find me dead because I have finally stroked out from one of the many spasms I have. Spasms that are so intense and so violent that breathing doesn’t happen; so violent and intense that I get day long headaches. Spasms that are often generated by the simple act of breathing. And yes, I have tried the anti-spasmotics and anti-convulsants to alleviate muscle spasms that strain muscles and are starting to dislocate joints. For me, they do not work.

    Based on family genetics, I should have lived an active life into my mid to late nineties. Then MS happened when I turned fifty. I am fifty-six. My husband and I figure that if I am “lucky”, I have maybe, maybe, five years before the MS kills me.

    So, yes, MS kills. And it is an ugly, ugly death.

    It is the rose colored glasses,the idea that someone can “live with” MS that stands in the way of finding a treatment or cure.

    I am incensed that anyone or any organization expects me to “live with” my killer and abuser. We don’t expect someone to “live with” their abusive spouse/significant other that often end up killing them; why should we expect someone to “live with” MS?

  • Lamarfreed
    5 years ago

    Thanks for bringing this up. I was dismayed at the MS communities reaction in Australia. It is true that for the first ten years after diagnosis I was able to do many things that others did, though I paid with terrible fatigue on days I marked for rest.

    But after 20 years my capacities are greatly reduced and I have only a few productive hours in a day though still with dramatically reduced cognitive abilities, most frustratingly in attention and concentration.

    Recently I remembered the complaint of a co-worker that I was always sighing in the years before I was diagnosed. It was, unbeknownst to me, the early signs of a fatiguing illness that would only become sufficiently dramatic to get diagnosed ten years later. Yet the first undiagnosed signs appeared in my teens.

    Because of this illness, I do not know what it is like to be fully rested and functioning for long hours at my peak. I have always been weary too soon. And now, in my late 50’s, even though I still walk without a cane at home, I am using a wheel chair in order to do simple things like “walk” around a museum, or visit local gardens for more than 45 minutes. I can no longer apply my attentions effectively to work for more than an hour or two on most days.

    I am fortunate that my wife understands and can afford to support me doing work that she loves. But this illness has been devastating for me and for my social support network which now has someone that needs help, rather than another resource with which to provide help.

    Perhaps with the new treatments and early diagnosis it can be slowed so that it does not get this bad for those who are being diagnosed now. But we should not lie to ourselves or others with MS. MS is a monster that we are fighting and in this case ‘sucking it up’ means being honest that this is a terrible disease.

  • Chrisite
    5 years ago

    I am NOT confused about this issue of how to portray MS at all. We should absolutely NOT sugar-coat the disastrous effects MS has on our lives; financially, physically, and emotionally. Sorry to offend the rose-colored camp or the newly-diagnosed, all of whose delicate sensibilities we’re so afraid to offend lest we scare them or otherwise force them to have to face something as distasteful as the reality of our disability. Apparently it’s just too ugly to have to deal with. I mean, it’s just so, well, gross, you know? – so they choose not to look at us, or even think about us. Why should we pander to that callous attitude, which does NOT, in fact, do anything to help our cause but rather hinders it. Case in point: because my first neurologist was so afraid to scare me and so wanted me to stay positive as long as possible, he actually told me in the exact words that MS is “not that bad, no big deal,” when he conveyed my diagnosis, even adding that with the newest treatment he was prescribing without informing me of the existence of other options (I won’t mention which had just come out at that time) the nerve damage I’d already suffered was “reversible.” Guess what? Because of that false optimism I cheerfully repeated that to my nearest and dearest when disclosing my diagnosis. I inwardly congratulated myself whenever I heard anything different from what I’d been told by my doctor, even support websites and books about MS (the few I’d found in the local library) because I knew MY case was different since I was being treated by such a brilliant physician who had me on the cutting edge and therefore I had nothing to worry about. Besides, MS was no big deal anyway, right? Because of the politically correct need and the false pride the disabled have in “looking good” and “being strong” I continued carrying on my life as if nothing had changed, leading everyone else in my life to expect me to carry the same crushing load of responsibilities I always had without change. And when I finally collapsed under that impossible load, which was inevitable, and I was no longer able to be everything to everyone, not one of them understood. Each one reacted with anger and mocking disbelief when I related how exhausted I was, or when I’d stumble or fall which embarrassed them in public, or canceled an engagement yet again. Today every single one of them, including my spouse and my family members, has decided I must be “faking” it to get attention and has disappeared from my life. After all, “look at Mitt Romney’s wife, she carried out all her ‘responsibilities’ on that grueling campaign trail and didn’t turn a hair” – “look how good she looks, you’ve really let yourself go” – “it can’t be that bad” – and by the way, doesn’t our claiming MS is really not that bad just serve to prove his point about those disabled people like us who make up a goodly part of those pesky “whiners” in the 47% who really don’t have anything wrong with them but are just too lazy to work and sucking all the resources out of those poor, bedeviled “job-creators” who toil endlessly to manage their hedge funds? Yes, I’ve actually heard all of these things verbatim, plus far too many other cruel, hurtful, unfair, and inaccurate comments to list here. And I believe it’s the direct result of this exact attitude here that we don’t want to offend or inconvenience anyone with the truth of what day-to-day life is with MS, and probably equally to blame, our own desire to avoid looking bad. Don’t you ever wonder why it’s so HARD to get SSDI when your diagnosis is MS? Hm? Think it has anything to do with us going to such lengths to make sure we convince everyone that hey, it’s not so bad, we can all have a great, fulfilling life with it, no biggie. So can quadriplegics, but that doesn’t mean they’re not disabled. The difference is they’re not fighting day and night to convince everyone they’re not. And their disability isn’t invisible, either, meaning we’re starting from a disadvantage to begin with. As far as scaring the newly diagnosed, seriously now, don’t you think it’s MORE cruel, not less, to let them believe as I did that MS is really “nothing” until that belief leads to them way overdoing it and damaging their health even more than to be honest with them so maybe they’ll actually listen to the importance of nutrition, exercise, sleep, and other things I ignored like I always had and I’ve suffered much more than I would have if I’d only been told it really IS something to take seriously, REALLY seriously! It’s BAD! Is it fair to cover up what it’s really like to be felled out of nowhere by hideously painful spasms that cannot be “walked out” or massaged away because it’s the faulty wiring in the nerves telling the muscles to do it rather than just your garden-variety Charlie Horse? So maybe when it happens while they’re on the freeway they’ll recognize it and be able to pull over before they crash into someone? Or that they might feel perfectly able to go out to lunch with a friend but by the time the server brings their food they could well be lying down in the booth, too weak even to scrape that sandwich into the box? Or that they might be just fine when they get to Chuck E Cheese’s for their grandson’s birthday party but they could well be lying in the backseat of the family car while the candles are being blown out and miss the cake and the gifts being opened because they couldn’t pretend to be “normal” in public one more second and didn’t want to spoil the kid’s party even though they know they’ll endure the wrath of their daughter-in-law later? (Like mine, the one who asked my grandsons, ages 8 and 9 at the time, “When is your grandma going to quit “faking MS and wasting my tax dollars?” – yes, she actually said that to those poor kids who related it to me, sobbing, when I picked them up at school that afternoon.) So why don’t we call a spade a spade and fess up? Yes, please do “show me the positives” because so far I haven’t seen ANY. Yes, I am fighting to carry on, but that is NOT a “positive” aspect of a horrible, life changing disease that I would have preferred to live without. It did change my life, but NOT for the positive, not in any way, shape, or form. It’s different, and I’m coping, and I’m not saying I don’t experience any joy. But if we ever, ever want MS to be taken seriously by the ones who can help or hurt us most – the politicians who have the power over our Social Security, Medicare, and Medicaid, the insurance companies, and our friends and families – much less the public, whom we depend on to fund the critical research and sway the opinions of those politicians and insurers, then we need to stop pretending it’s not the nasty, disgusting, never-ending struggle that it is. That is IS serious. That is IS dangerous. And it DOES end lives, even if you’re still dragging through.

  • AJoy
    5 years ago

    Christie, I am so sorry that you have had such a difficult time with your family! It certainly is NOT appropriate for your Dr to have given you such an incorrect perspective. My Mom had been diagnosed years before I had, so I had already been aware of the disease somewhat, but I still didn’t accept the reality until it really hit. My first symptoms were in 1993, but they went away (other than Fatigue, which I always put off to something else), until 2004 when my vision was affected. Diagnosed in 2005, I had very minor symptoms, always Fatigue. I wasn’t going to have the issues Mom did. My husband left, I started working on creating a career to support myself, and my children. When the disability crept in only a few years later, and I could no longer get around well, or work, or do as many things for myself, I still insisted that I was going to “get better”. I battled the ex in court just recently over how the disability was “my fault” because I didn’t “follow a the recommendations”, and “other people live just fine with MS”. I now have SPMS, and struggle to get around the house, and do things to take care of my teenage daughter. I live in fear, some days, about what I will do when she is no longer living here, and the one “friend” I have that helps me out (was my partner for 4 years, until this summer) is no longer around.

    MS takes its toll on our Bodies, our Minds, and often our Spirits. Showing the newly diagnosed more fairly newly diagnosed, or exceptions that have the resources and support systems to push beyond the day-to-day reality, does NOT give a full picture. Yes, there are people who go through life with almost no symptoms to struggle with, but there are just as many who begin to decline within a short period. There are many of us who likely had been dealing with MS for decades before being diagnosed, and there are some that never respond well to “DMDs”. The Medical Profession still can not tell us Why there seems to be no way to predict where the individual’s disease progress will take them.

    I believe that we need to show BOTH sides of the MonSter. Yes, there are people who are living full and productive lives, but there are also people who have great difficulty. New patients need to see this, and the General Public most definitely needs to know about TOLL it takes! There are so many of us that do not have spouses or caregivers that can support us, and when you can no longer make a living for yourself, you are stuck with whatever bare minimum you can get. Important things to make people aware of, when you are raising money! =)

  • Laura Kolaczkowski author
    5 years ago

    I wish I could reach through this screen right now and give you a hug and thank you in person for your brilliant, well articulated perspective on this question. Your voice is exactly what we need to be hearing to balance our presentation of ‘what is MS?’ I can’t thank you enough for taking the time to share this with me and everyone else. best, Laura

  • AJoy
    5 years ago

    Thank-you for the article! I have been finding myself concerned over what we present to the general public lately, as well. Watching video of a young girl, pushing herself to race well past the sense of numbness, leaves many of us with MS to wonder what the long-term result will be for her. While it is supposed to evoke a sense of inspiration, for me, it left concern for her, as well as concern for how many who do not experience MS, or are just starting on this journey, and what their expectations might become. Now I am at SPMS, and disabled, unable to work, struggling to walk, and FAR too often have heard “why can’t you do more?”.
    That isn’t to say that we should focus only on the disabilities and challenges. It is wonderful to also show the positives, the fight that people carry on. Why can’t we have a Realistic Balance?!

  • Grandma5
    5 years ago

    I am also confused on this issue. I think we make MS look not so bad. Especially when a newly diagnosed celebrity starts saying things, showing how good they look and with no disability, they never say anything about fatigue or how it has already affected their life. It gives the public the impression that life goes on as usual after the diagnosis, no big deal. That is not true for all of us. I would like to see a compromise, I don’t want to show the severely disabled but I don’t want to see those that don’t talk about how their life has changed.

  • Judy
    5 years ago

    I agree that we need to stop portraying MS as “no big deal”. I have PPMS, and have lost my ability to walk, stand, get myself into bed or transfer to another chair. I can no longer drive, after several years using hand controls to do so, I can no longer play the piano, which I used to enjoy daily. I feed myself awkwardly with my left hand (I am right handed) and have an indwelling catheter, probably for the rest of my life. I am in my power chair every waking moment, and lie in one position all night to sleep as I can’t turn anymore. I cannot comb my own hair, and my husband gave up, so I have it done professionally every 4 or 5 days, something we are fortunate to be able to afford, so that I can still look presentable. I am also fortunate to have a wonderful husband of 43 years, who has become my primary caregiver. Without him, I would be in assisted living. I do indeed feel trapped in my own body, much like the controversial ad tried to portray. I am tired of our magazines and web sites showing MS patients running, biking, carrying on their lives as if they have a cold or something. They are obviously RRMS patients, or newly diagnosed.

  • Poll