Literature and Medicine II

26 Perceived skeptical attitudes and doubtful comments from members of the support system reinforce fears of a ‘discredible’ self (Davis; Matthews). When a person has a disability that is not apparent, or when acute symptoms are present one day and few or none are present the next, members of his/her support system often unknowingly minimize the experience or give an impression that the condition is not believable. Many family members and friends openly question the reality and severity of the disability (Charmaz and Paterniti; Matthews). Mary explains her experience with this within her support circle: “I still get the same type of response from even family and friends. ‘Ooh you don’t look that bad.’ ‘You go hiking with me, you can’t be that bad.’”

27 When interactions with authority figures regarding the disability are met with hostility and resistance, one might feel as though he or she is personally disliked because of the disability claim. Victoria explains feeling targeted and publicly humiliated when her requested accommodations were flat-out denied by a teacher that she perceived as spiteful:

I went through a remission at about age 12 or 13. My body developed, I grew, and I wasn’t as small and skinny and sickly-looking as I had been before. Coming out of remission caused a lot of problems, I think, because I looked like everybody else. I wanted to look like everybody else. I wanted to put makeup on, and I wanted to do my hair. I liked to keep myself looking nice. But because I did that, I think the teachers looked at me like, “There’s nothing wrong with you.” The teachers were really mean to me. It started in middle school.

28 Health professionals react differently to people with hidden disabilities than to those with visible disabilities (Charmaz and Paterniti; Davis). Service providers might react with disbelief, lack of knowledge about how the disability presents itself, and overall lack of responsiveness, treatment planning, and service referral (Taylor and Eisele; R. Taylor). Mary describes her experience:

I feel guilt, because when I do tell someone about it, I feel like they don’t believe me. I feel like, oh, it’s not that bad. That’s what doctors have told me. “Oh, it’s not that bad. At least you’re not in a wheelchair.” … I feel like I should have my lab results or my biopsy results with me and say “here, see, look, its right there.” … Even with doctors I feel like I need proof because I look too good … I’ve gone through hell because of it … Doctors looking at me like there’s nothing wrong with me. … I mean, I felt like saying to him, are you going to pay more attention to me and help me once I get into a wheelchair?

29 Even strangers express dissatisfaction with stares, frowns, silent disapproval, and outright verbal questioning when persons with hidden disabilities access special accommodations (S. Taylor). Persons with hidden disabilities then face the additional burden of explaining or proving to others why they need a particular service, which can, in itself, be a shame-producing experience (Matthews). Simply the fear of having to do so keeps Mary from accessing necessary accommodations:

I’ve never used (accommodations) even when I need to use them … because I didn’t know what to say to people. I even got the parking permit (application), and I was going to ask the doctor to fill it out, and I thought people are going to look at me and say, “She’s not disabled. She’s using somebody else’s permit.” I just never did it because I never wanted to deal with people saying anything to me. There’s that ‘different’ again. I mean, that’s my issue that I need to work on, but I’m getting this close to asking the doctor to fill it out. Because when I feel that bad, I would like to able to park closer so I don’t have to expend as much energy. I thought about it, and thought I wouldn’t use it if I wasn’t feeling bad, so I wouldn’t feel guilty. Here I am saying, ‘Oh no, I’m just going to use it when I get bad.’ Instead of using it preventatively. But then I think people will say, “She hikes, she does some exercise, why is she using this disability permit?” I don’t feel like going into a whole explanation.

I mean, even in the grocery store, I was almost stumbling, and my muscles were cramping stiff, and I probably could have used one of those wheelchair carts they have, but I didn’t use it. I just looked at it … (I thought to myself) ‘Oh, I don’t need that. Nobody’s going to believe that I need that. I can still walk. I might be stumbling but I can still walk.’ Instead of thinking, ‘this will help me to not expend any more energy and help me recover faster.’

30 Persons with a hidden disability may feel under constant surveillance when utilizing necessary accommodations (Samuels). An individual may feel self-consciously ‘on’ at all times (Goffman). Victoria describes this experience:

My handicap (placard) hangs. And when people see my car, I’m always thinking, “Oh my gosh, what are they thinking right now?” And I’m always thinking, “They probably don’t think it’s me.” Someone will come up and say, “Why do you guys have a handicap (placard)? What’s that about?” It’s hard because people will look at me and not think that something’s wrong. I think that’s the hardest part … having people looking at me and not thinking that there’s anything wrong.