Each month I go to the hospital for intravenous infusions of immunoglobulin (IVIG). The way I understand it is that they pump me full of antibodies from thousands of donors’ plasma. The hope is that all those good antibodies will flood my system and negate the impact that my bad antibodies are having. And it does help, along with the steroids, and the immunosuppressive drugs, and the cholinesterase inhibitors, and the copious amounts of rest that I have to engage in each day.
The hope is that all of this together will be enough to keep me going, to keep me moving, to keep me breathing, to keep me somewhat functional. Although I still can’t work, I have difficulty driving, and I have difficulty doing most things, but it’s enough that I can still feed my family supper most days, I can take care of my daughter, I can sit and knit and go for a walk.
Last month as I was getting my infusion I was sitting beside a lady and I noticed she had orange fluid in her IV bag so I asked “what are you getting?”
She said “I’m getting iron, what are you getting?”
I answered “I’m getting antibodies.”
She was surprised “oh, I just assumed we were all getting the same thing.”
I explained that we’re all here for different things and I’m always curious about other people’s situations but I’m never sure what’s appropriate to ask.
So we chatted a bit and she told me she had had three treatments in the past week and she thought he she might need some more. And I told her that I come every 4 weeks and that I find it very helpful.
And she finished by saying “well isn’t it nice that there’s cures for these sorts of things.”
And I didn’t know what else to say so I just smiled and said “yep!”
But as I left I thought about how different our situations are. She was there in the medical day care unit so I assumed that she was like me – a sick person- and that she lived with the knowledge and impact of illness. But she wasn’t. She was still operating from a point of healthy privilege.
Over the past few years I’ve become very aware of all the privilege that I hold. As a white, straight, cisgender, average sized, mostly able bodied, educated woman living in a wealthy western society with a good paying job, I have a LOT of privilege. Everywhere I turn the media is reminding me of that privilege which is very good. I think it’s important to recognize and appreciate when things go well for us by chance. But over the past year I’ve realized there’s another type of privilege that I used to have but no longer do. I’ve been living with chronic illness for the past 16 years (I have type 1 diabetes) but I’ve never really experienced true illness the way I do now until I was diagnosed with Myasthenia Gravis (MG) just over a year ago. With diabetes, even though I was living with a chronic illness, at least it was a well known one. Everyone has heard of diabetes, everyone knows someone with diabetes, and so there’s a general level of understanding in the public about the disease. Everybody knows it has something to do with insulin and something to do with sugar and what you eat so it’s pretty easy to explain to the people around me how it impacts my daily life. It’s pretty easy to get support and understanding and it’s pretty easy to find other people with the disease.
MG is a different beast. I have not yet met a real life person with the same disease. The number of people I’ve met who know someone else with the illness I can count on one hand (and most of them are doctors). And the stories I hear are often “oh yeah my parent had that and it almost killed them”. They’re not stories of young people who are trying to function.
It’s difficult to explain it to people because I look more or less “normal”. I tried to go back to work briefly part time last fall. I would be there until about noon and then go home to rest. And I remember one day when I was leaving someone asked me “so what happens now? What happens at noon that you can’t work anymore?”
I should have said “it’s nothing that happens now, but I’ve been fighting all morning just to move, I’ve been enduring incredible discomfort and pain for the past four hours. What happens now is that I can’t endure it anymore. I can’t keep it up any longer or else I will collapse. What happens now is that I’ve reached my breaking point.”
But I didn’t think of that at the time and I don’t remember what I said but I’m sure it wasn’t very eloquent or informative.
I’ve also had people say “well I hope you get better soon” or they see me and because I look “normal” they say “oh you’re better!” And the answer is no. No I’m not. Maybe my eye isn’t dropping today, maybe my face doesn’t look like its falling apart, maybe I’m not using my cane to walk, but you can’t see that I’m struggling to breathe. You can’t see that every time I lift my arms I feel like I’m bench pressing a hundred pounds. You can’t see that I can’t press down on my pen hard enough to write. You can’t see that when I try to type my arms start to tremor and my hands start to fail. Those things you don’t see on the outside because I can shift, I can jiggle, I can move, I can hide it.
But that’s the benefit of living with healthy privilege. You don’t think about those things. For most people when you get sick, you take medicine, go to the doctor, maybe end up in the hospital or have a surgery, but then it’s solved. It’s done. You go into remission, get better, whatever, and then you move on.
Chronic illness is not that. You get diagnosed and you know there’s no out. There’s no escape. From now on the rest of my life is just going to have a layer of shit on top of it. It’s just going to be a little more difficult. Every movement is going to have to be managed and measured and accounted for because I need to make sure that I don’t overspend my energy in any one area. Everything I do will be accompanied with discomfort or pain. I’ll have to pay later for the activities I enjoy now. Everything I do will have the potential to throw me into a crisis. I’m going to have to say no to a lot of things. I’m going to have to repeatedly say no to my child when she asks me to do things or to go places with her because I just can’t. There’s no end to that. This is for always. And people with healthy privilege don’t get that. They assume that there’s a fix,a cure, away out.
And so it just threw me to receive that comment from a woman in the medical day care unit, getting infusions like me. I just assumed that we were in this together and that she got it. But when she said “isn’t it nice that there are cures for all of this” my heart sank because she didn’t get it. And it’s not her fault. I’m glad she’s not in it. I’m glad that for her there is a fix, a cure.
But I still think it’s worth talking about, just like its worth talking about all the other kinds of privilege we may hold. Talking about it helps those of us who have lost that privilege feel seen and it helps those of us who still hold that privilege to be more aware and appreciative of what our bodies do for us every day when they’re not faltering.