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An infinity chain made out of myelin sheath.

“When Are You Going to Get Better?”

When you suffer from a chronic illness like Multiple Sclerosis, you tend to get some interesting and somewhat baffling questions. One of the more puzzling inquiries that we often receive has to do with when we are getting better. If you’ve had MS or another chronic illness for a bit of time, you’ve probably been asked something similar. When are you going to get better? Feeling better yet? You’re still sick? How long are you going to be this way? All various ways of asking us why we’re still sick. Despite the disease having no cure, this question still comes up a lot.

Confusion from the name “relapsing-remitting”

I understand how there can be a little confusion when it comes to asking about someone with MS. Despite having no cure, the most common kind of MS is confusingly known as Relapsing-Remitting Multiple Sclerosis. This name seems to indicate that the disease can go away, even though it doesn’t. You may have periods of time when you are not in a full-blown exacerbation (or relapse as some call it), but that doesn’t mean the disease is gone or that your issues aren’t lingering. An exacerbation is when symptoms are worsening, when more damage is being done to the myelin that surround your nerves. Even when that exacerbation is over, the damage it did doesn’t leave.

RRMS doesn’t go away

At first, you may still appear pretty well after an exacerbation, but as these relapses continue to happen over time (causing more and more damage), you eventually have symptoms that don’t seem to ever go away. Just because you aren’t in a relapse, doesn’t mean the disease isn’t still active. It may be working slowly to damage your myelin, even though you can’t notice it yet. It also may not be doing much but waiting for the next chance to strike. (So if someone asks why you are taking that medication, you’re taking it to prevent further relapses). The idea that the disease remits and goes away isn’t really an accurate description, and I think it creates confusion. Not just amongst those with the disease, but with everyone.

You look fine

Many of the symptoms of MS are of the invisible variety: fatigue, pain, spasms, cognitive issues, etc. This world is incredibly focused on what they can see. If people can’t see an outward sign that you are sick, it can confuse them. Many people simply can’t get it through their head that you can be sick and look fine. This can lead many people to wrongly inquire about your level of sickness and even assume that it’s gone. As they say, looks are deceiving.

You can’t really beat MS the same way as other illnesses

Many people expect us to get better because they are used to seeing others rebound. Not simply with common sicknesses like the common cold or flu, but even those with maladies like cancer often end up cured. People are so used to hearing about so and so being a “survivor” and recognizing that they “beat” their disease. You can’t really beat MS the way you can beat cancer. You may be able to live your best life and keep the disease in check, but it’s never actually gone. That’s not a concept that a lot of people can understand.

The impact of these MS misconceptions

Of course, people asking you when you’ll get better is annoying. It’s also extremely disheartening because it really demonstrates a complete lack of knowledge about the disease. If it’s a friend or family member, that can be pretty upsetting. You’d like to think that those who care about us would take the time to learn a little more about our disease. I sort of think that’s the most important thing a loved one can do. Nothing warms my heart quite like hearing someone say “so, I was reading about MS…”.

We need people to understand

Aside from those that are close to us, when strangers or acquaintances ask us when we’ll be better, it can give us a different kind of crushing feeling. They know we have MS, but know little about it. That seems fair, but it doesn’t inspire me with confidence that we’ll ever cure this disease. If people think we can get better, I doubt those folks are donating to MS research. General lack of knowledge about the disease doesn’t only hurt hopes for a cure, it hurts the lives of everyone trying to live with MS. Yes, we want to raise awareness to help fund a cure, but we also need people to learn more about our disease in order to help us live our lives. We need people to understand that even though we aren’t in a wheelchair, we still need that handicapped parking space. We need employers to actually grasp that fatigue and cognitive issues can hamper our ability to work. We need everyone to understand that our problems, no matter how they appear or are named, won’t go away. We aren’t going to ever truly be 100% better, but for us to live with that, we need people to understand it.

Thanks so much for reading and always feel free to share!

Devin

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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

  • isuzyq01
    6 months ago

    I was diagnosed with PPMS and when I get comments like this article described, I just tell them to google PPMS and they will learn more about it. I sometimes tell them I wish I had RRMS so I might have a few days or weeks where I felt decent. MS is not for sissies!

  • Christina Hegarty PT, DPT moderator
    6 months ago

    Thank you for sharing, @isuzyq01. We’re here for you and thinking of you!
    Best,
    Christina, MultipleSclerosis.net Team

  • SueK
    6 months ago

    I cringe whenever I read, “You are better off with Cancer. At least that can be cured!” Just another case of “You will not get it until you GET IT”. A tumor can be removed. Cancer cells killed. Patient declared to be in remission or as the overly confident will say -“A survivor”. However, far too often a few cancer cells hunker down and set up camp, metastasizing elsewhere, coming back stronger and meaner. And if you have the good fortune of escaping that, the damaging effects of chemo may cause Leukemia or lead to other fatal conditions. That’s not to say some do not survive without an instant replay, but given time it is always in the cards.

    A close friend had breast cancer. She was treated and considered “cured”. A few years later, however, she developed a cancerous brain tumor (sneaky cells had escaped radiation and took up house elsewhere). Again she endured chemo, radiation, etc…. and fought to survive. And she won that battle as well. So those who believe cancer is curable will jump in now saying, “See! It is beatable!!” But hold on…. A few years later, the cancer returned, this time far more aggressive and not responding to therapies that worked before. She died at age 45.

    Now maybe I am overly sensitive about this because with the exception of one brother, I have lost practically everyone in my family to cancer. Or maybe, I just know a bit more about the scientific aspects of the disease as my husband is a Medical Research Scientist working on finding the “cures” people like you want to believe already exist. I would take MS any day over cancer. To compare these two diseases is reprehensible and irresponsible. Just look at my mother, she had both cancer and MS. The cancer killed her, as did the Diabetes, Heart disease and depression. MS may have caused these complications, but when she passed, the MS was dying out.

  • Christina Hegarty PT, DPT moderator
    6 months ago

    Hi @suek,
    I’m so sorry for how cancer has affected your life. You must have gone through a lot to see others so close to you suffer. No harsh medical diagnosis can be easy to deal with. Thank you for taking the time to share with us.
    Warmly,
    Christina, MultipleSclerosis.net Team

  • StephanieEVC
    6 months ago

    I know theres no cure and similar to you, I’m told that there will be one ‘one day’. I grit my teeth (like usual I’m surprised they haven’t shattered yet) and reply yeah maybe one day. Still they remain ignorant and don’t even know what multiple sclerosis is… Maybe one day they’ll find out.

  • Christina Hegarty PT, DPT moderator
    6 months ago

    @stephanieevc, Hopefully as awareness increases, so will a chance of a cure sooner rather than later! The ignorance certainly can be frustrating—we hear you!
    Thank you for taking the time to comment. We’re here for you and thinking of you 🙂
    Best,
    Christina, MultipleSclerosis.net Team

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