For Friends & Family: Your Friend’s Aunt’s Cousin’s Gardener’s MS

So you find out one of your friends, family members, coworkers, or acquaintances has been diagnosed with Multiple Sclerosis. It’s not a common disease, so your mind immediately searches for what you know about it and comes across a great factoid to share! Yep, you know someone else who has the illness! Your best friend’s aunt’s cousin’s gardener has it! Not only do they have the disease, but they’re also doing really well with it, too! I get it, it’s your way of trying to connect to us, it’s natural. As instinctive as it is to mention this connection, I want to clue you into a few things before you bring it up.

MS and invisible symptoms

While they may be doing well, it’s important to mention that they might not be doing as well as you think. Chances are, you probably don’t know them all that well. Maybe you’ve actually met them, even talked to them, and they appear to be doing fine. They might have even told you they are doing well. The thing is, that’s not always the case. Multiple Sclerosis can vary a ton from person to person, but one hallmark of the disease is a variety of symptoms that we consider “invisible”, meaning they aren’t very perceptible when you look at us. Fatigue, pain, brain fog, spasms, and many other symptoms can all be occurring while we are talking to you. Even when we are putting on a big smile. This invisible nature of our issues, coupled with the fact that we simply want to be considered like everyone else leads us to put up a brave front and act like nothing is wrong. So no matter what you’ve heard or witnessed about this person you know, even if it’s what they’ve told you, it may not be the full truth of the matter. People with MS tend to have a record of pulling it together for a bit, only to pay for it later, often when they are alone.

MS is different from person to person

Again, I get it, it’s the natural thought process, you meet me, learn of my illness, and your brain makes a connection. This is such a natural flow of thought, many of us hear it all the time, from almost everyone we meet. Here’s the thing: I’ve been at this disease a long time; I know that person may not be as well as they seem or that they simply have a different course of the disease than me. When I was starting out though (and even now if I’m having a bad day), it’s the very last thing I want to hear. If they are really doing great, awesome, I’m happy for them, but they are not me. The same is true if they are really struggling. They may have it worse than me, too; I may not have the same limitations as them. The point is, this isn’t a one-size-fits-all disease. I cannot stress enough how different it can be from person to person.

We are more than our MS

While it may not be your intention, mentioning someone else’s MS can be upsetting to some, particularly if that person is better or worse than we are. It also generalizes us and characterizes us by our disease. Even without meaning it, in an instant, it feels like you’ve made my disease the sum of my existence. It’s not super far from saying “oh, you are a person of this color, I know another person of that color, too, and they are like this”. That’s a very extreme way of looking at it, but just an example that these kinds of generalizations happen everywhere. In addition to generalizations, it invites comparisons. If the person you know is doing better or worse than me, I’m then left feeling a little defensive of myself. It feels like you are comparing and judging me based on this other person you know. I’m left wondering what you think of me, if I’m not doing as well as the person you know.

Time and a place

So much of life comes down to timing, and this is no different. Chances are, I’d love to talk to you about my illness and explain it more. I’d even love to talk about (and maybe get in touch with) your best friend’s aunt’s cousin’s gardener. However, let that discussion come about organically. Please don’t make it one of the first things you tell me. That’s the very situation most of us run into and have issues with. When you meet me, sure, acknowledge my illness if it somehow comes up, but please don’t make a comparison. That said, I’m more comfortable than most with discussing my disease. There are many that want to avoid the topic like the plague. As I said earlier, most of us are just trying to look normal for a bit. Let’s absolutely have that conversation, but at a later date, when we know each other more.

Just something to think about.

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

Devin