Illness and Isolation - Part One

Someone recently wrote me with an interesting question: "Why is it that my friend with FMS is so isolated and alone? And a lot of it is self-imposed: when she's sick, I want to come visit her but she pushes me away. Why does she do that? It isn't healthy." This got me thinking. Before I had full-blown FMS, I would sometimes get sick as anyone does. But I never was as isolated as with FMS, and I never had that urge to push people away as I do with FMS. So what is it about FMS? Why do some of us with FMS want to be alone when we are sick, even though it makes us lonely?" There are a lot of reasons I can think of, from simple to complex, reasons that I think people with FMS will relate to, but that are really counterintuitive to other people. So here I begin with the simplest reasons.....

Part One: I don't like the way I'm judged and treated when people to see me at my worst

When I go out to meet people, I dress, I do my hair and makeup. I look professional, or I dress in eveningwear, or maybe even something very hip. I hold myself a certain way, I project an image, and people treat me a certain way based on the impressions they get from how I look.

Like it or not, people do judge you by your appearance. And they treat you differently depending on the judgments they make, conscious or not.

I don't like the way I am treated when I am looking weak, disoriented, vulnerable, and disheveled. I don't like being at best, pitied; at worst, taken advantage of. I can't tell you how many times I talked myself into going out anyway, in a weakened state, and had a bad experience with someone I met based on how I looked and carried myself.

All that holds true for being out amongst strangers - but my friends and loved ones should look beyond that, no? Well, of course it feels different to be around people who know me well, and even among friends, it feels different depending on how close I am to that particular person.

But I still don't want them to see me.

Part Two - Call it vanity or insecurity, but I want to look attractive to the man in my life

For my husband/boyfriend/lover, I always want to look attractive. I want to be gorgeous, I want to be sexy. I have a lot of anxiety over him seeing me again and again, looking sick, looking run-down, unsexy, unglamorous.

No matter how often he tells me that he loves me no matter what, I still worry about it. How many times I can let him see me being sick before the excitement and romance will disappear from our relationship?

Deep down I feel it's unfair to him to have to be in a relationship with someone who is sick all the time. I want to hide the most unattractive aspects of my illness from him.

I try to believe in our relationship and overcome this - but there is so much lore for even healthy women (true or not, it's a common story) about how a man leaves a woman because she had "let herself go" and "stopped being sexy to him."


Part Three - I don't have the strength to deal with my friends' emotional reactions

When it comes to my friends, I don't want them to see me "looking sick" because hate seeing the reaction on their faces. I have friends who have 'known' for years that I have a chronic illness. I meet them for coffee when I am well enough to go out, and they listen sympathetically while I agonize and rant about the hell that I have been going through. They know all the facts about how my life has changed, they hear me talk about it on the phone, the experience the results of my no longer being able to join them for strenuous activities and having to cancel get-togethers.

And still...... These are friends that 'know' that I am chronically ill -- and yet that first time that they see me, with their own eyes, in the midst of being really sick, it is still a major event. I can see their shock, their fear, their confusion, dismay, pain, and more. I can see it on their faces, I can hear it in their voices, and I can feel it in the tension in the air. I don't know how our friendship will be affected after they go through this. I don't know which will happen, and taking that risk is one more major stress that I don't need when I am sick.

I don't know what is the appropriate degree for me to help my friend deal with their feelings. My friend who sees me at my worst for the first time, goes through a major emotional experience. What's my role - "The Sufferer" who needs all her energy to deal with her own crisis, or "The Supportive Friend" who wants to help my friend deal with their own emotions. A part of me really resents having to hold someone else's hand and help them deal with the fact that I am sick! And that's one reason that I don't want people, even friends I know, to come over and see me when I am sick. Because watching them go through this realization is very emotionally strenous for me, and when I am already not feeling well I want to spare myself that stress. Some friends adjust quickly and smoothly and are focused on me, other friends are deeply confused and unable to adjust.

It's very hard to say this part to people. Friends who want to help, will be very offended to be told that I don't trust them to be able to handle what they see, or that MY having to deal with THEIR reaction to MY illness, really tires me out. But, I have found, that the people who get the most offended and try to persuade me that they can handle it and they know exactly what to do, are too wrapped up in themselves and their egos, and are the ones I least want around.

At this point, I do have a few friends and loved ones who have seen me ill, and who have made me feel better emotionally by accepting me equally at my best and at my worst, and adjusting themselves to my energy level on those bad days. I am very grateful to have them in my life, and yet it doesn't make me any more willing to go through that again with someone new.