"But you look great! (or...fine! or...healthy!)"
-or-
"But you don't look sick..."
A lot (maybe 95 percent?) of my MS peers absolutely hate being told this. I used to find it annoying. Not so much anymore. In fact, when I hear "you look great!" I feel pretty good, like something's working for me. And I feel some relief, too, because there's a weight to this secret I carry around with me, which I can't share (at least not yet) at my workplace, and when somebody says I look great, what they are actually saying is I pass for normal.
Anyhow, who DOESN'T like to be told they look great?
Well, when you feel like crap all the time and you are deep in the trenches with an invisible illness which bombards you constantly with reminders of its existence, it's easy to take the comment "But you look great!" as a kind of denial or trivialization of what you are going through.
The fact is, people say this because they want to be supportive, they care, and they don't wish to deny you anything. They may not understand what you are going through, but their hearts are in the right place.
I think my cohorts dislike this phrase because it makes it harder for them to convince others that their illness is REAL. So let's get this one thing out of the way right now.
People without MS, please master one simple truth:
If the MRI and the blood tests and the lumbar puncture and the
neurologist and the patient all agree that it's MS, then IT'S MS.
It's not some version of hypochondria the MSer is putting on to gather
sympathy or special favors from others. It's not an excuse to get out of
chores or job tasks or physical labor or parenting. It's not something
any of us MSers hope to have so we can live a life of leisure.
Capiche?
Of course it seems ridiculous to reasonable, educated, compassionate people that anyone should assume that someone with MS is a hypochondriac, or lazy, or a system abuser. But it happens all the time. Not so much to me (in fact, I don't think I've really experienced this at all).
HOWEVER, AN EXAMPLE...
Just today I heard from a youngish peer that she was getting out of her car, which was parked in a wheelchair access spot at the grocery store, with her cane clearly in use, and an elderly man caught up with her and told her to save the spot for someone who needed it. Here is my peer, standing there, CANE IN HAND, and the man, who walked up to her of his own volition, with no need for an assistance device, was suggesting she was a fake. When my peer learned the man also had a handicap parking permit, she politely told him, "I have multiple sclerosis," then asked, "And why do YOU need YOUR permit?" His reply? "Because I get tired sometimes."
I'm not going to say that the elderly man's needs aren't legitimate. I work everyday with elderly people who are tired all the time. It sucks being tired all the time. I get it. I, myself, am tired. All. The. Time. But why in the world would someone decide that a younger person with a cane didn't also deserve the same privileges they enjoyed as an elderly person who gets tired sometimes?
There probably aren't enough handicapped spots at the store these days. Between a growing population of elderly people who need some additional assistance and the fact that there is now greater, more expanded access for all disabled people (which is actually a good thing... we want people in our society to be independent, after all), we might rethink the number of slots available to people who need them. In a perfect world, people of all ages and with all legitimate concerns should not be put in the position of fighting over access to handicapped spots. Certainly none of them should be judging the other as to the general worthiness of their disability in the first place...
Before anyone gets their panties into a bunch, I am not trying to demean the elderly here. This is not the first time that I have heard stories of elderly people mocking or judging or accusing young people with disabilities of abusing the system in some way. The elderly are not saints just because they are elderly. Some elderly people are perfectly lovely and some elderly people are perfectly unlovely. This reflects the truth about every age demographic.
I mostly wish to use the example to point out that MS is a disease that frequently and primarily ravages the young. It can necessitate the use of a cane or the use of a handicapped access spot for someone as young as their teens because (and I have felt this keenly more times than I wish to recall right now) MSers of every age are freakin' EXHAUSTED and IN PAIN and THEIR LEGS ARE NUMB OR FEEL LIKE THEY ARE MADE OF LEAD. I myself can barely make it in and out of the store sometimes without thinking constantly about using that bench seat near the pharmacy for a nap just to get through the otherwise simple chore of buying milk.
Most of the MSers I know who are dismissed as lazy, faking it or somehow imagining they have the illness are young people. Our society demands a lot from our youth and when they get struck down by something like MS, it's twice the curse. If you are older, people will accept your disabilities as part of being elderly. They will go out of their way to help you, even. But if you are a young person, it can be a much harder world out there. You still need to work to pay your bills and be present in your role as a parent and/or spouse. Sometimes you are suffering the ides of MS while simultaneously caring for an elderly or disabled family member as well.
In a sense, deciding that young people with MS or other chronic illnesses or disabilities don't deserve the same respect as the elderly is essentially enacting a form of reverse ageism, which is in no way more acceptable than the opposite. Nobody is more or less worthy of compassion and assistance just because of their age demographic.
BACK TO MY POINT
I want to add that I think the kneejerk response, "But you look fine!" happens without any harmful intent for a couple of less obvious reasons:
1. When someone you know finds out you have an illness, one response is fear. Could it happen to them? Could it be contagious? Could they lose their loved one? The statement "But you look fine!" is really them fending off nagging fears that even their lovely friends who work hard, have families and give to their communities are not immune to chronic illness. If you look fine, then it must not be too bad. And they think this not because they wish to reduce the severity of your condition, but because it comforts them to know that, well, okay, you look good, or well, or fine, and that means it's not threatening. We know the truth, and so do they, but there's a heartfelt act of grace inside these words that should not be overlooked.
2. Some loved ones in our life are generally positive people and when they say "But you look fine!" they are truly trying to be your cheerleader, a motivator, a coach. They want to lift you up and say, look at you, you are winning! I'm "guilty" of this myself. I have said the same thing to loved ones with cancer who probably hated me for saying it to them, but my intent was never to diminish their suffering, but to express, honestly, that they still appear healthy and lovely on the outside and, to me, that's a great sign, even though I intellectually know better. It's my impulse to look for silver linings, bright sides, hidden blessings and, heck, if you look hearty and hale on the outside, then rock on. Just spreadin' some good vibes!
So that's where I stand on the issue, though I know it's complicated and many people will disagree with me about my last two points. I think, ultimately, that though we all have absolutely NO CONTROL over what others say to us, we DO have control over how we respond. and we DO have the ability to be discerning about the motivation behind their words.
So I have a new system for dealing with this. When somebody says, "But you look fine!", I assess their intention, not with my eyes, but with my intuition, to see what's truly in their heart...
And you know what? Most of the time... it's love.
