Thursday January 24 2019 10:00 AM
This week Trevis Gleason deals with familiar, often unwelcome, phrases people with MS hear very often.
Nearly everyone who has MS has heard “You don’t look sick” or “But you look so good….” Well, I’ll tell you why.
It’s well into the third week of January and I’m still hearing a lot of “Happy New Year” greetings. It’s not because people are stuck in a rut or have forgotten that they’ve seen me about town. It’s the first time I’ve been seen by many in our close-knit community. I’ve had a tough go of it since just after Christmas. MS and MS-related setbacks have kept me mostly at home for the past several weeks.
What I’ve been hearing alongside those New Year greetings has been the acknowledgement that I have been missing from the everyday life of the town. Many suppose that I’ve been away on holidays or traveling for work. I’ve come to realise that this is the flipside of the “You look so good” coin. We ‘look so good’, not because we are ‘good’ all the time; rather because we only get out when we are on the good side of the MS spectrum.
Firstly, the broader public doesn’t see our invisible symptoms. They also don’t see the effort – oft Herculean – to get ourselves out the door and into the community.
The people we meet also don’t realise that our interaction with them may be the only one we have for the whole day. It’s not a full trip to the shops we’re making, we’re simply out to get milk before we must return for an anesthesia-like recovery nap.
Then, as I’ve experienced this week, people just don’t realise that we’re not out all of the time. People who see us at work mightn’t know that the seven or eight hours we are with them are the only hours in the day when we aren’t wrecked beyond recognition. That the anti-fatigue meds mask to the world the truth of what we felt like before the meds kicked in. Those loan-shark meds will be demanding heavy interest when they wear off in the evening.
Finally, the world only sees us as looking good because that’s what they want to see. They’re not looking very hard if they don’t see than I’m not ‘okay’. I know this doesn’t fit for everyone out there.
The truth, however, is that our world needs to see that everything is okay. Those who know us moderately well may have known us ‘before’ and it’s important that we’re fine because if something like MS happens to them, they need to feel like they’ll be fine too.
Our disease makes people face their own frailties. It’s the same reason cancer was whispered about, if it were ever talked about, in decades past. People don’t want to know that it could happen to them… as a species, we get spooked very easily.
Part of the reason people see us as they do is because of the face we put on for the world. There as many reasons we put on the “I’m fine” mask as there are people living with MS. We do it because we need to stay employed, because we don’t want our children/spouses/family/friends to worry, because we don’t want to admit to ourselves that it’s got as bad as it has.
That list could go on for pages…
I can’t (or at least don’t) give my list to people who mention that I look good or ask if I’ve been away. I’d be a very off-putting bore were I to spout off all of the above information to the casual acquaintance! It’s one of the reasons the MS & Me blog and other places where we can be ourselves with others who simply get it are so important.
We’re not always fine, well, okay, or even good… but that doesn’t stop us from trying to be those things. I just wish we’d all do that a little more for ourselves than only for those in our lives who need them from us.
Wishing you and your family the best of health.