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Unsolicited Advice: When It Backfires

When you suffer from an incurable disease like Multiple Sclerosis, one of the many unique situations you come across, again and again is when friends, family, and even strangers bombard you with unsolicited advice on how to deal with your illness. Once you get diagnosed, you find out that everyone you know has a third cousin’s butler’s gardener’s grandmother who not only had the disease, but did something to feel better and you should do it, too. When it isn’t someone they “know”, it’s something they’ve seen on the internet (so it has to be true, right?). While all of these people are well-meaning, it sometimes makes me feel a way that they are unlikely to expect. Occasionally, it makes me feel like they must think I’m to blame. That whatever I have been doing with my life led me to this and that whatever I am doing now isn’t enough. Please read some more as I try to explain.

How this makes me feel

Now, before you suggest that I am misunderstanding them and that they are simply trying to help, I’ll reiterate, I know they are well-intentioned and I count myself lucky to have such people in my life. I don’t expect them to realize this (though maybe if enough people read and share this, maybe more will). I am generally appreciative that they care to offer a suggestion, but I wish they could understand how that makes me feel at times. To stop and tell me (or even forward me) some outlandish claim about my disease often feels like, at best, they are telling me I am not doing all I can to fight the disease, and at worst, that this is all my fault. I must be so bad at having my illness that I wouldn’t have heard about this miraculous information you are sending my way.

No diet or exercise can “fix” me

I’m clearly not living correctly and that’s why I have this disease. That is especially how I feel when I am given some of the more farcical suggestions, like, oh, so and so did this diet and it cured their illness (sorry, if you feel better on a diet, that’s great, but that doesn’t mean you are cured). There is NO cure for this disease, no matter how badly you want to believe there is (as an aside, we should all have a decent diet though). If there were, we’d all be doing it. This is especially a slap in the face when someone suggests that a diet or exercise or something of the like can fix me. It really is like them saying, “oh, well, you’re so unhealthy, that’s why you have this disease, if you did these simple things and were just more healthy, then you’d get healthy”. Again, I know they don’t mean it that way, but still, I sometimes feel like that’s what they are saying.

We’re just tired

This feeling that we must not be doing all we can extends to other information passed on as well. Sharing that latest article on fixing something MS-related in mice? Of course, that’s well-meaning, but, please don’t assume I haven’t seen it. I guess that’s the gist of all this, don’t assume we aren’t doing everything we possibly can to fight this disease. Trust me, we’re on top of things. This disease is awful and most of us are doing absolutely everything possible to fight it. This fight is extremely exhausting too, which is why some people can see a gesture that, ordinarily is wonderful and confuse it for something that’s not. I guess that’s how these feelings happen, we’re just tired of fighting, every single day, doing everything we can to beat this disease.

Now, I admit, I didn’t know I had some of these feelings until one of my readers mentioned that they felt this way to me. In some ways, this started as an attempt to explain how they feel, to put it into the words that they felt they couldn’t, but using the personal pronoun “I” because it was easier. As I went along, I realized that I occasionally feel this way too, and didn’t even realize it. I think most of us are always happy to see people care enough to offer advice, however, when it happens so much and isn’t thought out, it can actually backfire and be detrimental.

Thanks for reading!

Devin

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Comments

  • boomorbust
    7 months ago

    I have had MS for 37 years. Fortunately, I am still walking. Albeit with assistive devices, but walking. My spouse has a “Superman” attitude about life and thinks if I do more exercises or exercise mor frequently ( I exercise 3-4 times week for about 30 minutes) I will be able to walk longer and faster. I am frustrated because I feel he is accusing me of not tryin hard enough.
    Trying to tune him out but I can “read” his disapproval and it hurts. We have been married for 36 years, he is a good man but am totally frustrated with his viewpoint.
    Any suggestions to stay positive and not feel less than adequate?
    Frustrated so all comments are appreciated.

  • Janus
    8 months ago

    Wouldn’t it be nice when friends, or family etc. heard about our struggle with m.s. instead of giving advise, they would embrace you with a hug and a simple “what can I do for you?”

  • Devin Garlit moderator author
    8 months ago

    It sure would Janus! Thanks so much for taking the time to comment!

  • gilly12
    8 months ago

    Hi Devin.

    To begin, I like reading your articles because they give me another perspective to look at.

    I don’t have MS, but care a great deal for a man who does. A very caring and beautiful man.

    We live very far apart, thousands of miles, in different countries and we have known each other for more than thirty years.

    I often send articles to him and I often wonder if I appear condescending, … as you suggest , you know a lot of stuff that’s out there, and I am always afraid of appearing insulting.

    All we want it to
    Offer support because our only wish is to see improvement in the lives of the ones we love.

    If You can think back to a time when you didn’t have MS, I’m sure they must be an instance where you wished you could give someone you love their health back.

    My friend has a brilliant mind and is highly accomplished and I am always cautious and fearful of insulting him by sending him information…. and I do it a lot. But he has said to me …”how is someone who struggles just to get through the day supposed to stay on top of all this information… new studies, new drugs…
    You have to rely on your professional caregivers, but they may not be aware or open minded to new therapies.

    He does what he chooses with the information, I only provide it to him, and I truly hope he is as genuine as he appears to be when he thanks me for it.

    As your loved ones, we feel helpless. Have faith that we are not suggesting it’s your fault in any way, that if you made better choices you would be cured.

    We know it’s a struggle.
    We know you hurt.
    We would give anything to take it all away from you.
    Out pain, concern and tears are all real as is our desire for you to get better.

  • Devin Garlit moderator author
    8 months ago

    Thanks so much for sharing your thoughts gilly12! Appreciate you adding your perspective! I think many people can offer advice in ways that don’t feel negative, I have a feeling you are a person like that!

  • IzzyB
    8 months ago

    Thank you for this article. I think many of us feel this way. Personally, I’ve experienced this even more now that my husband has cancer. Suddenly, I’m his Caregiver, & everyone has an opinion about it. They have NO idea what I am experiencing. Even when I tell them that NO two people with MS experience it exactly the same & that I am doing the best that I can, they still don’t get it. It’s painful being compared to anyone else, particularly in a shaming &/or condescending manner. It completely invalidates who I am.

  • Devin Garlit moderator author
    8 months ago

    Thanks IzzyB! Hang in there, so many of deal with this, and like your situation, this spans pretty much any condition you can think of!

  • Anonymouse
    8 months ago

    Very good essay, Devin. I try to be patient and kind with said miracle cures/advice, but I’ve never smoked, have always eaten a healthy diet, and so on.

    It seems strange that the general idea is that a patient can simply make a few easy lifestyle changes, and suddenly not have MS (or at least, zero symptoms). The implication in some ways does seem to be that patients aren’t taking care of themselves properly, thus their disease outcomes. The MS patients I’ve met are informed, responsible, and are doing their best to handle quite tough situations.

  • Devin Garlit moderator author
    8 months ago

    Thanks so much Anonymouse! I think that’s the biggest thing here, that it often comes off like an assumption that the person with the condition isn’t doing all they can to fight it!

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