When I was first diagnosed, I told my boss because it was clearly going to diminish my effectiveness at my job. They responded with the helpful anecdote that they knew someone who had MS one time and they got better. Here is a non-comprehensive list of "helps" that you should consider at least twice when someone reveals this kind of thing to you... especially if it is a brand new Dx. This is not a list of "never do this"... just consider how you present it.
The single thing that I would wager that the vast majority of chronically ill people want is to not be what they are. To not be a burden. To get another chance with a healthy body. To accomplish their hopes and dreams. They almost obsessively research and read… looking for the hidden exit door from the trapped existence in which they live.
You are trying to help. You don’t know how to help all the time… so you read and research. And you mean well. You take your findings to your chronically ill friend or partner and say, innocuously, did you see this? or more exasperatingly, you should try this. Your person knows that you’re trying to help. They are desperately trying to help themselves, too… so yes, they did see it. For whatever reason, given the information available to them when they saw it, maybe they decided it was not a good fit. It could have been anything. With a Dx like MS, the disease is so wildly different from person to person (I mean yeah… at its heart our immune systems attack our myelin sheaths of our nerves, but the range of disease expressions goes from full out wheelchair debilitating to clinically isolated syndrome which just kind of… goes away)
Ultimately, there is a list of unhelpful “helps” that may be of assistance. In no particular order, a list of these (many of which I have heard) follows:
1. “I have a friend who was diagnosed with <MS>. They got better. You’ll be fine”
Ok… MS is different. There are four distinct disease tracks, and yes… one is called “Clinically Isolated Syndrome”, which yes… perhaps your friend was told he had MS. The mechanisms for MS and CIS are the same in that both are caused by the body attacking the myelin sheaths on the nerves. Perhaps he did “get better”. A CIS attack usually lasts about 24 hours, and could or could not be progress toward one form of full-blown MS or not. But a dismissive “oh I know this disease… you’ll be fine” is not the way to approach someone with a chronic illness diagnosis… especially a fresh one.
2. “This person I saw on television made their MS disappear by simply eating nuts and berries and forage tinctures”
Paul Harvey though.
3. “Did you see this research study in Canada? It looks really promising! You should look into it.”
Yes, I did see it. You have no idea how desperately I want it to be true. However… the medical basis of this “study” is tenuous at best. Also, it is from 2016. If the breakthrough truly was right at the tip of our fingers 5 years ago, I would not be sitting here writing this right now. I have vetted it as well as I, a patient, possibly can have done. Believe me. If the cure was out there, I would be on it. Promise.
4. <Insert celebrity here> has MS. She is in remission! Can you get on what she got?
Oh, man… if only I could. But I did hear about her. In fact, in our daily correspondence, she has been quite supportive and helpful to me. Ehh… that was unnecessarily snarky. I apologize. Oddly, <famous person> and I don’t chat much even though we share a Dx. She’s also not using her financial strength to Venmo me money that I am using to get the finest care that I can. Sadly, the way that I am trying to manage that is by volunteering for clinical trials of new treatments. Actually, that is how I came to be on the Disease Modifying Therapy that I have been on for 6 years now. I think that remission is one of those hard medical concepts that we conflate with “cured”…
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My MS, in purely technical terms, is also in remission. For the entirety of the time I have been on this treatment, I have (as confirmed by yearly brain MRIs) had no new evidence of disease activity. This doesn’t mean that I am “better”. It merely means that I am not taking any new damage. The holes are already there. At this time, they’ll stay there. But believe me… I’m out here turning over every rock I can find to not let that remain the case.
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