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The Unsolicited Advice We Get

The Unsolicited Advice We Get

Life can change a lot when you are diagnosed with a chronic illness like Multiple Sclerosis. You slowly learn that, over time, the way some people interact with you will change. Some people will be ignorant, some will try to pray for you, and some will try to fix you on their own. It’s this last situation that I want to talk about today. Specifically, the massive amount of unsolicited advice you get when someone learns you have an illness. Many of these people mean well, though some simply think they know better; it can come from those with MS and those without. No matter who it comes from, it can be extremely overwhelming and unwelcome.

Those without MS

I’m sure many people reading this have experienced it. Someone you know, it could be family, friends, coworkers, even just an acquaintance sees something about the disease online or “knows” someone with MS (it always seems like it’s their great aunt’s college roommate’s sister or some other odd connection). Despite not being a doctor or even having first hand knowledge about the disease, they feel inclined to inform you about what they’ve heard. This should be nice, right? People are trying to help. The thing is, when you have an incurable disease like MS, you tend to be on top of any major developments. I appreciate people’s sentiments, but trust me, having a painful and debilitating disease tends to make you follow all of the right things to keep informed. I worry that my expression or response isn’t exactly a happy one. OK, I know it’s not, because I’ve heard the same news from ten other friends before you. That and I probably also heard about someone trying whatever snake oil theory involved more than a decade ago. So please, forgive us, but we get a tremendous amount of this.

Also please remember that we have a complicated disease, we see specialists for it, and we are doing whatever we can to feel better. So while you may mean well, and a kale smoothie seems to work great for you, understand it won’t stop our disease. Giving us advice like “oh, you just need to exercise more” or “you need to sleep more” is in no way helpful. Trust me, we are already trying all of those things. We are also under the care of an educated and experienced professional (or should be). We will complain, because it’s hard not to, but that doesn’t mean we aren’t already trying to do everything in our power to feel great. Remember that MS is a real disease, and giving us some basic advice really diminishes that. It’s disrespectful. That said, I’d love to hear about your kale smoothie, just not if you telling it to me because you are expecting it to cure my MS!

Those with MS do it too

More and more, I’ve witnessed people with MS who are feeling good try to push their treatment onto others. They think they’ve conquered the disease and now they need to spread the word. They’ll tell everyone they come across about it, they’ll even create their own “expert” Facebook page. They essentially think they’re a hero and many look to become an “MS Celebrity” (which should never exist). While I am happy that someone feels good, I wish that everyone would remember a few things. For one, this disease is filled with peaks and valleys; having MS is a rollercoaster ride. You will feel good for periods of time and bad for others. This disease is also a long game, and whatever you are doing or feeling at any given moment is not indicative of your future.  Maybe you feel good because you stopped your medication, well, that may still have a profound effect later in your life. The treatments we use for the disease are always for later, not for now. Yes, there are medications and actions we can take for symptoms, but those are separate from the what we call the Disease Modifying Therapies (DMTs). So you may feel great in your fifth year of the disease, but how will you feel in year ten or twenty? Symptom-free does not ever mean disease-free.

It’s been said many times that those with MS are all snowflakes. It’s so true. We all have different symptoms and progression. There is overlap, but everyone’s disease course is different. Remember that before you extol the virtues of your treatment plan on someone else. It’s wonderful to see people sharing information, but there is a fine (and important) line between sharing what works for you and telling others that they need to do it too.

The “C” Word

When it comes to sharing something with me, one thing I wish everyone would realize, is that if something uses the “C” word (meaning cure), it’s probably a false hope. We see this a lot with MS. Every now and then, someone exclaims they are close to a “cure” or already found a “cure” or this one person is “cured”. I’m sorry folks, there is no cure for MS. They are likely not even really close. They don’t even really know the cause yet, let alone a way to stop it for good. That doesn’t mean that every time one of us sees that “C” word, that we don’t get excited. That’s a pretty awful thing to go through, those emotions you go through, even if you should know better, getting that hope that maybe someone found something to stop this disease. It is always wrong though, or it’s a theory, or a ways off, or worked in a very small sample size. So please, be very wary of anything using the “C” word and think before you share it. Don’t let your emotions get the best of you. Trust me, if a real cure was found, we’d know about it. Despite what conspiracy theorists would have you believe, there is a lot of money in a cure.

There is no cure, but there is still a lot to be hopeful for. We already have around three times the options of disease modifying therapies than we did when I was first diagnosed. That’s HUGE. We have more options than we’ve ever had and that’s a reason to rejoice. We have those options because people spread awareness about this disease. They spread information on fundraisers like Walk MS, Swim MS, the MS Readathon, and Bike MS. They’re getting closer to that “”C” word because of all of that. So please, share things that are MS-related, but understand what you are sharing, don’t buy into hype, and don’t try to fix us with an anecdotal tip you heard or saw from someone secondhand. Please do talk to us about MS, but don’t focus on a quick fix that doesn’t exist.

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

  • swampdoctor dave
    1 year ago

    Good article Devin, It has been several years since I have received any “advice” about my MS, although when I do I always thank the person but sometimes I tell them they don’t have a clue about what they are telling me. That usually ends the discussion.

  • CatDancer
    2 years ago

    Loved the article!!
    Is it just me or did anyone else notice the unsolicited advice that followed? I shouldn’t even phrase that as a question.

  • Devin Garlit moderator author
    2 years ago

    Thanks you CatDancer, yep, even despite the nature of the article, some of it still happened!

  • Pammie
    2 years ago

    Thank you Devin for writing this article! This has been one of the best ones yet! I know friends and family are only trying to help but it is sooooooo frustrating!!! Everyone else always seems to have “the cure” for MS. If you would only do this or eat that…I am on my 3rd MS treatment and I pray this one works for me. I am so tired of feeling so bad all the time. I would like just 1 day to wake up and feel “normal” again. You never realize how important your health is until you start loosing it.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Pammie , I appreciate that! Good luck with your 3rd treatment, I hope 3rd times a charm for you!

  • jn99
    2 years ago

    Thank you for this! Yes on the uncle’s best friend’s, sister’s brother-in-law’s sure cure. When I complained about our recent and record-breaking hot weather and how it affected me (brain melt, total muscle weakness, and emotional unreasonableness) a good friend told told me about an apparently famous person with MS who got a shunt in his carotid artery and, well, he was better than fine now. Really? A new one on me and I thought I’d heard them all in the 14 years since my diagnosis. What I really wanted was an empathetic ear and maybe some reassurance. Thank you for writing about this.
    Its supposed to cool off soon!

  • Devin Garlit moderator author
    2 years ago

    Thank you jn99. I think the number one thing anyone really wants, is for someone to listen. It can be so very helpful to be able to talk and explain your issues without someone trying to fix it.

  • Nomdeplume
    2 years ago

    Although I generally agree with you, I think it would have been better if you had omitted from your article the words “some will try to pray for you” from your statement, “people will be ignorant, some will try to pray for you, and some will try to fix you on their own,” because it suggests that people who pray are somehow in the same category as people who are ignorant and people who try to fix your MS on their own.

    For those of us MS-ers who do believe in prayer, probably half your readership or more, it’s mildly offensive.

  • Devin Garlit moderator author
    2 years ago

    Thank you Nomdeplume! I certainly meant no offense. Please do understand though, that for a portion of the people out there, not necessarily myself, they do see those offers of prayer as being in the exact same category.

  • AJH5521
    2 years ago

    Perfectly stated! I felt as if I was reading my own words. Great article!!!

  • Devin Garlit moderator author
    2 years ago

    Thanks so much AJH5521! Appreciate you taking the time to comment!

  • Jake
    2 years ago

    Many times when I share how MS has affected me, i.e. walking into things, locking the door to my home while the keys are laying on the counter, my mother never fails to say “we all do that”. But her best comment so far is ,”Ann Romney was able to find a ‘cure’, why can’t you?”.

    Grrrrrrrrrr ………..

  • Devin Garlit moderator author
    2 years ago

    Thank you Jake! Ugh, that’s infuriating! I’ve heard similar things in the past as well!

  • JanG6036
    2 years ago

    What is so sad is I know where mine comes from and there is never going o be a fix for me for as long as I may live

    Mothers mother was a diabetic Alcoholic which caused my mother to suffer from fetal alcohol syndrome which was passed to me ( my mother didn’t drink ) which is the cause for the stupid mutated gene . So anything with he “C” word is a joke to me but hurts all the same knowing nothing will ever work for me

  • Nancy W
    2 years ago

    I read the first few comments and see they are full of unsolicited advice! When someone who I feel i can talk to offers advice, I tell them that since this is an incurable disease, there are lots of theories out there. Many MSers who offer their own advice are just trying to control their lives. I think they figure if what they are doing works, then they don’ have to worry about progression.

    For me, one thing I think would be good for all MSers, is bodywork. I get a massage once every 6 weeks. It has really helped with stiffness. I used to take baclofen and haven’t needed it in years since getting regular bodywork. I think I will research this and see if it is a proven benefit.

  • Yoshitail9
    2 years ago

    Devin…on point once again. Unfortunately the world has become one big sound-bite so what little things people hear, react to and pass on without thinking or checking out becomes a very big thing for us MSers.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Yoshitail9 !

  • kelly1827
    2 years ago

    This! This is exactly why I am so circumspect about which diagnosis I have especially online. Not because I am ashamed or doubt it, but because I don’t want to subject myself to all the well-intentioned-but-no-less-annoying suggestions from Joe and Jane Interwebs. My Dad had PPMS before there was an internet and I watched him be subjected to an unrelenting barrage of “help”. I felt the need early on to protect myself from that. Typically I refer to my disease as an “autoimmune” or “neuromuscular” disease.

  • Devin Garlit moderator author
    2 years ago

    Thank you kelly1827! My grandfather also had MS, so like you, I’ve been around people with this behavior for a very long time. I 100% understand referring to your disease as an “autoimmune” disease and not giving specifics. I kind of with I had thought of that when I was younger!

  • Yoshitail9
    2 years ago

    Kelly…how about this….I bought a Harley-Davidson motorcycle baseball cap and when I feel feisty just tell them I ran off the road one day !

  • cmokon
    2 years ago

    Thanks for the article about one of my pet peeves. I get especially annoyed by the dietary “miracles” (“this woman cured herself of MS by eating an organ meat diet”–a vegetarian’s nightmare).

    I have friends who seem hurt when I respond with anything other than acceptance of their advice. I realize they “mean well” so my go-to reply is, “thanks! I’ll have to consider that.”

    But you nailed it.

  • jn99
    2 years ago

    I need to practice your response! Otherwise I’mafraid I’ll get pretty lonely out here….

  • Devin Garlit moderator author
    2 years ago

    Thank you @Monk, you are very right. Many of these people are quick to say the pharma buisness is just out for money, but are in fact making a lot of money themselves by peddling their “natural” cures. “Cures” that have no scientific studies to back them up, only anecdotal evidence, if that. “Natural” does not mean better and does not mean that no one is profiting.

    Your point about blame and depression is on point and one of my biggest concerns as well. So many people push these alternatives to what their doctor says, it doesn’t work, and then it effects them. It’s dangerous and unconscionable. I tend to point this out a lot in many of the pieces I write and take some backlash for it too, but it must be said.

  • Devin Garlit moderator author
    2 years ago

    Thank you cmokon! Yes, the dietary miracle people are often the worst, extremely judgmental too! Pretty sure I’ve used that exact reply on many, many occasions!

  • Monk
    2 years ago

    @1q96ddy Dietary “miracles” are one of my pet peeves, too. Some who have “cured” themselves write books, have clubs for around $200 a year or retreats for $1000 or more to learn the special diet and meditation, etc. We need to hold these people, who make these claims, feet to the fire and ask tough questions. i.e. Are the profiting from their claims?
    One of my concerns is that people will blame themselves if the diet doesn’t work. Self-blame can lead to depression. Depression is higher in the MS community than the general population. We need to learn more self-compassion not blame.

  • tfs
    2 years ago

    You made me laugh, Devin. Kale smoothies. Keep writing. You are wonderful.

  • Devin Garlit moderator author
    2 years ago

    Thank you tfs 🙂

  • Devin Garlit moderator author
    2 years ago

    Thank you 🙂

  • Monk
    2 years ago

    Ditto from me, too!

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