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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

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  • Dorry
    9 months ago

    Kim is seems like you have written as some sort of philosopher who is sent to put people right by looking at both sides of the coin and see things through your eyes or another perspective.
    You quote WE a lot as if you are speaking for other people when you can’t read hearts and minds to make such judgements.
    We live in a flawed world and we are all flawed in some way and so people react in all sorts of ways. We can take them or leave them especially if they don’t add value or meaning to our lives. We don’t need them. That doesn’t label us UNCARING. We all come in to the world and by birth right should expect good nurturing. But because people are flawed and not perfect not everyone is nurtured well and so goes through life learning and adapting all the time.
    As one gets older and matures their perspective changes. Many become ill and end up with a disease that changes their life and perspective so such sites as this is put in place for information, learning, and people telling their stories to help others who don’t know what is happening to their bodies. People should be Respected and Validated as they tell their stories. Not forced in to a situation where they are judged if they speak out against their doctors and not getting their needs met or not being understood by their family or friends. RANT is all they feel like doing out of sheer frustration. They should not be put in a situation where they have to defend themselves from speaking out or being tagged as self absorbed. For someone who can identify with MS I don’t find you having any EMPATHY.
    Many people do care about others and what they are going through whilst struggling with their own issues. This doesn’t mean they shouldn’t tell their own story without being judged as speaking out of both sides of their mouth. This is an offensive statement to those struggling with MS and have a voice that needs to be heard and Validated. We all have some intelligence to know what battles we have to fight. Support wouldn’t go afar to reaching out to other’s who need it. I am wondering what makes you an expert or authority in what a normal person is? It they have your vision as expressed the way you have done I would not feel normal.
    Normal is being compassionate, caring, loving, and Respecting People. Not putting them down if they don’t see things through our eyes. It is a mark of Maturity and Wisdom to be diplomatic in any given situation whether we understand it or not. Your view of things is not the popular view. I don’t think people go around thinking they are unique because they have MS and should be treated special. They have a condition. RESPECT IT.

  • LuvMyDog
    9 months ago

    At 72 years old and having lived with MS for nearly 40 years I couldn’t care less what people see, like or don’t like.

    The majority of my long time close friends have passed away and being an introvert, I’m not one to dash out to make new ones.
    I enjoy a more solitary life, I value my privacy and found that my dogs have always been my best companions since I was a little kid.

    When the grocery clerk or someone in a department store or at the Vet’s office says, “hi, how are you doing today?”
    My usual response is, “not too bad, thanks.”
    The majority of people who ask that question do it without thinking, it’s part of their routine, they really don’t care how you’re feeling or what’s going on in your life and I think 99.9% of them hope you won’t go into a long story about your aches and pains and other problems.

    I don’t complain to everyone I meet.
    My few friends know I have MS, they don’t treat me differently because of that.
    If someone tells me I look good, I say “thank you, that’s very nice of you.”
    I’m not offended, I know if I look half-way decent or if I do not. If I know I’m looking somewhat crappy that day, I know that person is just trying to be polite and I tell them so in a nice way.

    When I look at a stranger I basically see what they want others to see. If they have their own set of problems, I merely hope for them that they are making an effort to deal with them and not give up.

    Going to a doctor’s appointment, none of us are unique. We are going to the doctor because we have a problem or we wouldn’t be there!
    The doctor’s office is probably where most of us can feel like everyone else, no explanations needed.

    People cannot understand something they’ve never experienced for themselves and never will.
    I will never understand what it feels like to be attacked by a Great White while snorkeling a short distance from the shore of a beautiful beach and that same person will never understand what it feels like to sleep 9 or 10 hours, get up in the morning and feel like I’ve been run over by a train, after not sleeping for 6 months!

    In order to survive, especially in our old age, I think we must be self-absorbed, it’s a requirement. There’s no one else who feels our pain, our exhaustion, our struggle to get through another day.
    And in my mind, no one really cares, it’s not their struggle and they are thankful that it’s not.

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