MS Reclamation

Communication Rant

There are loads of articles that explore this subject, but I think people are missing some elements. Talking about what NOT to say, how to say X.

What People SHOULD Say to Someone Living with Multiple Sclerosis
How to Be a Friend to a Person With MS

I don’t think these are wrong,  especially not from the place the narrative is coming from, but I think it’s important to remember maintaining a relationship relies on both people involved.

I saw read a story from a well-intending friend of a PwMS, who is struggling with ideas on how to offer their support – without seeming condescending or reminding their friend that they’re ill.  Attempts to console their friend were rebuffed, friend expressing that the well-wisher can’t relate to their experience.

I  understand how frustrating it can be when someone doesn’t have a frame of reference for any of this and doesn’t understand this isn’t something you can “hope will get better”, since you’re forced into a lifelong commitment with something you didn’t ask for and have limited resources with which to manage.

For those that don’t understand what’s going on here…  Maybe I can offer some insight. Maybe not.  Everyone is different and there is no definitive answer, especially for a condition that varies so widely from person to person.

We don’t have a cure in sight, there doesn’t seem to be one just on the horizon, everything won’t be magically okay tomorrow.  The study you just read about remyelination in mice,  that one antihistamine (if we megadose) might be a cure-all,  drinking bleach? If you Google “Multiple Sclerosis Cure” there are “About 8,900,000 results”. In case there is any question…

If you’re suggesting any secret new cure-alls and your family member/friend/coworker etc,  gets frustrated: you’re probably the asshole.  However well-meaning, it’s not something we haven’t heard or maybe even tried before.  I already have one crazy tin-foil hat wearing family member I have to listen to, and that’s more than enough. They don’t think about what they say, or even why.

The first non-ad hit on Google is from Mayo Clinic, indicates “There is no cure for multiple sclerosis.”

For right now, that’s okay.   Generally, we all have doctors and we’re doing our best to make the most of each day.

This leads me to the “I hope you feel better”. I appreciate this. 100%.

I can also appreciate how this could make others livid. I know that this comes from a place of insecurity, good intentions, sincerity and concern. It’s a confusing mix of not knowing what to say and genuinely caring for another person. I will simply take it as that and it won’t make my day any worse for wear.

However, in contrast, we might not ever get better.

It’s impossible to say either way. I have mild/moderate RRMS and for me, it’s optimism and good vibes. My daily symptoms are largely invisible and if you didn’t know me you wouldn’t know anything is wrong. Sure I might accidentally kick something, drop my phone 20x in a day (or accidentally throw it). Extra fun: it might even look deliberate. (It’s not. 😒) I don’t know how or if I will change my interpretation when I get worse. That’s the kicker though.

I expect to get worse.

My first symptoms were very mild. My first relapse, not so much. Then my second, and third. I have symptoms all the time now. They change, it’s mild to me, I’m mobile and I know what this disease can do. I can only infer, the conversations I have with my neurologist don’t give me much clarity here. I don’t think she herself has many ideas either. I feel mild, but my “MS team” has been “concerned”.

This is the uncertainty. This is why  I think “I hope you feel better” could be taken so poorly. It’s an “I hope I feel better too”, but it’s loaded,  and can act as a simple reminder that we might never be okay again.  At the same time, we’re all so different, each of us might take all of this different directions, and it can be really hard to remain objective when you feel like crap.

“But you look so good.”

I see everyone saying to stop saying this, ala “for the love of GOD please stop”. I haven’t seen anyone mention to just drop the “but”. Please tell me when I look good. I put effort into it and want to feel pretty.  If I look like shit, I’m still a human, keep that to yourself. Thank you.

The main thing I would want to remind friends and family: you have to take care of yourself.   I need my friends and family in my life, and if I’m making them feel like assholes, I want them to tell me so.  I’d rather have an uncomfortable conversation than getting the slow-fade of “not really friends anymore” or just seeing the family over the holidays out of a weird sense of obligation.

I won’t discount the potential of people wanting to make others feel like assholes for shits and giggles, but we’re talking about reality here – assuming your friend/relative is worth having: just talk to them. If they find a thing particularly offensive, figure out why. Don’t try to be psychic and do backflips to appease us. We might feel bitchy sometimes or just have no fucks at a particular time, but communication is the still best choice the all of us have here.

If you’re a PwMS, I’m sorry. I’m not saying you are  bitchy (context matters), I’ve been there.  I know it’s a lot, and on at least some level I can relate.  People without MS don’t have a frame of reference and we can’t give it to them. It’s not our job, all of that. I’m sure if you think back to a time prior to DX you can recall a point in your life where you just didn’t get something and would approach the situation differently now.  They’re like that version of you (and me) that handled things poorly.

A great read for literally everyone:   Being sick doesn’t excuse being a jerk

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