When Invisible Illness Means Having to Explain Why You 'Qualify' as Disabled
I’ve recently become OK with asking for help with my illness even when I’m not looking “sick enough” to need it –which is typical of having an invisible illness. With an invisible illness, unless you have a mobility aid, you generally don’t look sick enough to need the help you want.
Like in this photo set, for example.
In the photo on the left, I look great. I was out with my partner at the time in Niagara Falls, but I spent the whole time in the room, because I was in too much pain to do anything, and at the time this photo was taken, I was in agony. It had been a bad night. And the photo on the right is of me out with my walker, on a relatively good day — in far less pain, than of me on the left — but I look sicker in that photo than in the one on the left.
I experienced a shocking moment the other day at the airport when I was going through security. I had my cane with me, but hadn’t gotten a wheelchair because that exchange just hadn’t happened yet — perhaps, because I didn’t look sick enough, even though, on that day, I was indeed in a lot of pain. I went up to the security officer at the front of the line and told him I could not stand in the line, it was too long for me as I was in pain, and to please help me figure out a way to resolve this problem. I realized that I didn’t look sick. And I wouldn’t normally ask for help for this reason. Because I don’t feel I qualify. This is why I am afraid to ask, or have been in the past.
This is why I have a hard time speaking up about something like this or asking for the things I need and naming my disability — because to others, it doesn’t qualify, so how could it to me? And it’s why typically I am uncomfortable voicing 1. when I need such help and 2. that I need help and that this help involves some type of difference — I hate feeling different — and I hate that this difference isn’t good enough or enough of a difference to others for them to provide the help I need.
I was shocked by my own actions, probably like he was shocked that I was in fact sicker than I looked — but speaking up worked. They found me a wheelchair.
Then, my wheelchair attendant said to me, “You are very well dressed for needing a cane.”
While she said many positive things after that, and asked about why I had a cane, as people typically do, I was obviously taken aback by her initial statement, which I took as just another form of a “you don’t look like a sick person” but skewed in a very odd fashion, as though sick people don’t care about what they look like, or can’t have style.
Then, I had to go to the pharmacy, and do all other sorts of “sick people” errands during my trip, because invisible illness doesn’t stop or go away just because you are away from home. I had to renew my passport, also, and while at the passport offices, they asked me to go out and get a set of stamped passport photos. My knees were very sore and I had not brought my cane, despite debating about bringing it for 10 minutes before leaving the house.
Part of the debate about not bringing it, I realized later on, when I was without the cane, was actually more about the invisible part of my illness and how the cane makes it visible: something, that I have come to be comfortable voicing, without the cane. It is helpful, sometimes, to have my cane, in that if I don’t have the energy to do things or advocate for myself, it makes my illness visible and assists me in doing that.
However, I have become comfortable asking for these things on my own, even when I do not look sick or have my cane, and in this process I am finding out how much people respect your requests when you have to advocate for yourself without the tools to make your illness “realistic” in the stereotypical sense of what a disability looks like. I’m also finding out just how much people don’t really respect or assist you if you don’t look sick enough for them, such as, with or without a cane.
I asked the clerk at the passport office to provide me with a photo store that would be in closer walking distance as I had mobility issues and did not want to go far looking for a place.
She looked taken aback and gave me a store that was located directly to the right of the building we were in, but looked to be in disbelief of what I had said, as though I would be making it up. I felt frustrated, as though what would I have to gain from saying something like that, especially since, I thought now that cute guy sitting behind me who may have wanted to give me his number, now probably thinks I’m a loser, listening to me stand here at the counter talk to this total stranger passport officer about my invisible disability and my mobility issues, and this whole time my knee has been hurting, and I should have just bought my cane anyway and what was I proving, I thought.
And then I try not to limp on my way out of the passport office down to the photo store, and then I try not to limp on my way back up and some guy near the elevators notices me visibly in pain.
He asks me what’s wrong or if I injured myself, and I say no, I didn’t, and he asks if maybe I tripped, or fell, and I say I’m fine and then I just head on into the elevator, and the whole time I’m kicking myself for not having brought the cane to begin with. And I wonder why people ask these questions. Because I don’t look like a typical sick person, I guess. I do… look like I could have tripped or fell, because I look just like anyone else in the passport office. I don’t look like the people who are in ads for hospitals, the people you typically think of when you think of being sick.
When I get to the photo office, I realize that I had voiced the fact that I needed some help to find a store closer by. I am proud of myself for this fact, and again, a bit taken aback that I am beginning to feel more comfortable vocalizing my illness even on days when it isn’t as visible to others — because those days don’t always mean that I’m feeling better.
Looking well doesn’t mean feeling well.
It’s annoying to me that I don’t look sicker, because I wasn’t necessarily feeling as good as I look — if I had been feeling that great, I wouldn’t have had to ask for all that help. And yeah, it was a good day, compared to some others, but I’m also laying in bed right now, in a lot of pain as I write this, wondering if maybe there’s something I should wear, a sign around my neck perhaps, that says “I have lupus.”
By the end of this day, I am now, “legless.” I had to take my cane to an appointment that I would rather cancel which is only a few blocks away (but I can’t walk that far) and the cab driver asks me (again!) how I injured myself, even though I have a cane — a marker to others, that I am not well. But to this cab driver, it is not a marker that I am sick, because I don’t look sick, by society standards. (What does that mean, anyway?)
This time, I tell him why I’m sick, because by now, I’m fed up of people asking me if I’m injured. I tell him that I have lupus and then he asks me what it is. I just say quickly that it’s an autoimmune disease. He says “Oh.”
He asks when I will get better, and then I think to myself, why did he start this in the first place. Then I think to myself, that’s right, because I don’t look sick. I say I won’t get better, and then I feel deeply uncomfortable, and I say that there is no cure, because genuinely then the questions stop. And then he looks sad, and I feel terrible.
Then he gets very particular about where he will drop me off, what with the large snow banks that are surrounding us and my having a cane. I tell him not to worry, that it’s fine, and I feel very badly, thinking if only I could take it back that I had said there is no cure, but I can’t, it’s a truth, and the truth is sometimes hard.
I think to myself this whole time about what it means to look sick and be sick.
I think about stereotypically, how even when I looked sick, like in the cab with my cane, I wasn’t sick enough to be considered a sick person, because visibly, I was happy, and apparently by some standards not a “sick person” because I was well dressed, so to the outside world, I still looked like someone who had “injured themselves.” I wasn’t grey in the face, didn’t have IV cords stretching out on all sides, or an oxygen tank, things that represent sickness.
What represents sickness to me, I then wondered.
Things that have come to take up space in my life as articles of my disease: my perma pile of pill bottles in my handbag, my “date cane,” the one that folds up and that I would put in my schoolbag, so even on good days, I had a backup — my pillboxes, the Gravol suppositories that I try to hide, behind old hairspray in the bathroom cupboard but that men somehow always find anyway.
These to me are what represent illness. They have become over the years permanent fixtures that represent what I need to adjust to a life with an invisible form of disability. The somethings that make me different, even though I try to be just the same as everyone else. But the outside world doesn’t know these intimates of illness, so they presume it to be something else — illness to a lot of people is represented by the idea of using a wheelchair or being in the hospital.
And now, on days, when I look just fine, on days when I have no cane (but may be in agony, because that’s what an invisible illness is), I am comfortable asking for help and voicing that I have a disability that people may not see, because I know that my illness looks different than people think it would: it looks a million different ways, and I’m a million different things because of this, and I’ve come to be just fine with that.
I’ve realized that this feeling invisible illness gives me of having to constantly qualify that I’m disabled isn’t in fact something other people have over me: at the end of the day, those people who asked me if I am injured or why I am sick aren’t here in bed with me massaging my sore knees, or sitting up entertaining me while I can’t sleep because I’m in pain. They do not decide if I am ill, or what it means to be sick, and I have nothing to prove to them.