I Want to be Treated Like Everyone Else — Except When I Don't
We, the people with multiple sclerosis, in order to form a more nuanced union, establish self-justification, provide for the common defense of our moods, increase the general income level for welfare qualification, and secure the blessings of liberty to ourselves over a normal life span, do stand by the contradictions we state about how we want to be treated.
It’s true. We talk out of both sides of our mouths when we complain about how others treat us. About how we want to be treated and when.
We want them to believe us
We complain that people don’t understand, don’t believe us when we say we’re suffering. We want them to look at us and see our invisible symptoms, see our suffering. See that we are different, strange. If they could, they would treat us better, with more sensitivity and good will.
But I’m pretty sure that’s not how things would go.
People would react differently
People are afraid of strange things they see and hear. Like suffering. Many would avoid us and not want to deal with it. Others would be sympathetic and offer to help. Still others might see but not understand what they’re seeing, not be able to process it, and act hostile. All kinds of reactions. Because that’s how people are.
Seeing others' suffering
And we, being people too, are exactly like that ourselves. We are as self-absorbed as the people we criticize. The next time you pine for a public that sports x-ray vision and can see your suffering, check out your own x-ray vision. How’s it working? Can you see a stranger’s sciatica pain, killer menstrual cramps caused by severe endometriosis, or mental anguish from having lost a child to cancer?
When you observe a stranger, what exactly do you see? Do they catch your gaze and smile at you? Glare at the intrusion? Ignore you? Do you take all of that personally? The smile, the scowl, the indifference? If you do then you are normal. You are the center of the universe and everybody is aware of you, good or bad. Spinning on your axis while everything else orbits you. You’re acting like a typical person.
But you don’t want to be. Except when you do. And you think it’s up to you when that should happen.
The same person you always were
You don’t want your friends to avoid, judge and reject you just because you have MS. You want them to see that you’re the same person you always were. And yet, when they remark that you look so good, you are deeply offended. But you could think of it this way: Whenever they tell you that, they are saying that you look like them and therefore belong in the fold. Your little social group. The larger social circle. Society in general. The human race. You are one of them. You belong. You are the same person you always were. Why is that offensive?
Is it that you want to call the shots for when you belong and when you don’t? It’s not always up to you. It might be less stressful to go with the flow when someone pays you the compliment of a robust appearance. Besides, what do you want, really? To be told you look like a drowned rat in a drought?
Treated like "unique you"
One good example of wanting to be treated like ‘unique you’ is during a doctor appointment. This is often exasperating. Doctors’ perspectives are at odds with our own. They observe us in terms of the studies they’ve read. We are statistics. But we want to be observed as the unique case that we are in the way we react to medications, in our particular collection of MS symptoms, plus a discrete assortment of other medical conditions.
I pick my battles. This is all that’s really under my control. When to go with the flow and when to take a stand.
How well do people around you understand MS?