Let’s say we’re meeting for coffee. I arrive, we order, we laugh and we have a terrific conversation. You go home thinking Patti looked great.
And perhaps I did!
What you didn’t see was everything that happened before I got there. Or what might happen when I get home.
That’s the thing about invisible symptoms. People see the result. They don’t see the negotiations.
I’ve lived with MS since I was 23. I can look fine, sound fine and have an enjoyable afternoon while managing symptoms that aren’t remotely interested in making themselves visible for your convenience.
Before the coffee even arrives
I’ve probably already considered how much energy I have, whether the heat will be a problem, how far I’ll need to walk and what else I need to do that day. My balance may have an opinion. My bladder might, too. What a delightful committee to consult before leaving the house!
You don’t need to know every detail of those calculations. But it’s worth understanding that an ordinary outing can require preparation you never see.
And even with all that preparation, MS doesn’t always follow the plan.
Fatigue isn’t a competition
When I say I’m experiencing MS fatigue, I know people sometimes respond, “Oh, I’m tired too.” I understand the intention. Everybody gets tired.
But MS fatigue can be something else entirely. It can interfere with movement, concentration and the things I actually want to do. And I might look exactly the same as I did an hour earlier.
Sometimes I don’t have the energy to explain why I don’t have the energy. There’s a particularly ridiculous problem for you!
I’m not asking anyone to rank whose tiredness is worse. I’m asking people to accept that the word fatigue doesn’t necessarily describe the same experience for everyone.
Brain fog: I KNOW that word!
Have you ever been halfway through a sentence and lost the word you were looking for? Now imagine that happening when you’re already working hard to concentrate.
Brain fog can make finding words, organizing thoughts or following a conversation more difficult. And because you can’t see the effort, you might assume I’m distracted.
Trust me, I may be concentrating harder than anyone else in the room.
During my academic work, I discovered that concentrating and processing information could be exhausting even when I hadn’t done anything physically demanding. That challenged just about everything the former PE teacher in me thought she knew about effort.
Apparently, my brain could have a workout while the rest of me stayed in the chair.
Numbness: how would YOU explain it?
Numbness is a strange one because the person experiencing it may struggle to describe it. My hands can look normal while changes in sensation make an ordinary task more difficult.
People ask what it feels like. Fair question. But I don’t always have the perfect comparison, and I’d rather not spend the afternoon inventing one.
Here’s a thought: if I can’t describe a symptom in a way that makes complete sense to you, it doesn’t mean the symptom isn’t real.
You can believe me without being able to imagine exactly what I’m feeling.
“But you look fine!”
Ahhhh, those words.
I know they’re often intended as a compliment or reassurance. But occasionally I’d like to ask, “What exactly were you expecting me to look like?”
Should I stop smiling? Arrive looking miserable? Wear a sandwich board listing today’s symptoms?
Looking fine describes my appearance. It doesn’t tell you what’s happening in my body. I can be laughing with you and still be having a difficult MS day.
Both things can be true. Amazing, isn’t it?
The symptom isn’t always the hardest part
Sometimes the hardest part is everything that comes with it. Deciding whether I can keep a commitment. Wondering whether I’ll need to leave early. Explaining why plans have changed. Or trying to decide whether I have the energy to explain any of that in the first place.
You might see a cancelled visit. You won’t necessarily see how much I wanted to be there, or the decisions that led to cancelling.
And that’s why I’m cautious about assuming I understand someone else’s day just by looking at them.
What I’d really like people to understand
You don’t need a medical degree to be a decent friend to someone with invisible symptoms. You don’t need to offer advice, solve the problem or tell them to stay positive.
Ask what would help. Listen to the answer. And if they tell you they’re struggling, don’t make them prove it.
This goes well beyond MS. We meet people every day whose appearance tells us very little about what they’re dealing with. Yet we make assumptions anyway. I know I have.
So the next time someone looks perfectly fine, perhaps don’t assume you’ve seen the whole story.
You might be looking at someone who’s already done an enormous amount of invisible work just to be there with you.
Now, can we enjoy our coffee?
