On a lovely warm summer day in 2008, I was sitting in a restaurant with my sister-in-law. She works at the same university at which I am a doctoral student, and summer classes had just begun. I was nibbling self-consciously at my sandwich, aware of the 40 prednisone pounds I had gained since she saw me last. All week, in fact, I’d been painfully aware of those pounds, experiencing again and again the shocked looks on the faces of classmates who hadn’t seen me in a year. Since I was keeping silent about the RA, I had to live with the knowledge that most of them probably thought I had just let myself go.
My sister-in-law, who did know about the RA, asked me how I was doing. I told her that so far, I was holding up pretty well, but I was concerned about my upcoming doctoral comprehensive exam. Not because I was feeling unprepared, but because it would involve close to four hours of longhand writing. There would be breaks, but still, I didn’t see any way I could possibly do it.
“You need to go register with the office of disabled student services,” she said, matter-of-factly.
Disabled? Who, me?
“I don’t think those services are for me,” I said.
“Yes, they are,” she said. “They do test modifications, so you won’t have to do the writing. You’re entitled to them. You need to do this.”
So, reluctantly, I went to the office. They gave me forms and explained that my doctor would need to verify my disability before they could provide services. So I called my rheumatologist’s office and spoke to his medical assistant. And I have to admit, I thoroughly expected her to say, “No, those services aren’t for you – you’re not really disabled.” But she didn’t. Instead, she told me that this is done all the time for RA patients, and told me to fax her the forms.
About a week later, I was called in to the office at the university to meet with the director of disabled student services. He stood up to greet me and held out his hand to shake, and it was immediately clear that he was blind. Feeling embarrassed, foolish, and deeply fraudulent, I sat down in the chair across from him.
“So how can we help you?” he asked me.
I said, “I have rheumatoid arthritis,” and was surprised (and a little bit horrified) to find myself getting slightly teary-eyed. Still deep in denial, I had said those words out loud to very few people. I fumbled around for awhile, explaining that since it was still a relatively new diagnosis, I wasn’t really sure exactly what I needed – I had no experience with disabled services. “A lot of the time, I’m completely fine,” I said. “It’s just that sometimes, some things are hard to do. But I don’t think I need much help…”
He was silent for awhile. Then he said, “I always feel sorriest for students with conditions like yours.”
What? This blind man felt sorry for ME?
He went on to explain that conditions like RA are hard to manage because they are both unstable and progressive. Unstable, he said, because they change from day to day – you never really know how you’re going to feel, so it makes it very hard to plan, and also very hard to adjust. Progressive, because they tend to get worse over time. Then he told me the story of the degenerative illness that took his sight. Each time things worsened, he had to adjust to a whole new set of modifications – first, getting larger-print books, then reading with magnifying glasses, then having someone read to him, etc. Finally, he was completely blind. “Believe it or not, things got easier then,” he said. “I knew what the limitations were, and I could make permanent adjustments. The hardest part was the way things kept changing, and it was kind of a relief when they stopped.”
I had a lump in my throat.
Then he asked me not to think about the days when I was doing well. “I need to hear about things at their worst. We’ll make a plan that fits those circumstances, and have it in place for you. That way, it’s there if you need it, and you don’t have to use it if you don’t.”
I heard myself describing days when it seemed impossible to get out of bed. I talked about the time when I had to have shots in the soles of both of my feet and couldn’t walk at all for two weeks. I talked about swollen fingers that prevented me from being able to write longhand, and made typing painful and difficult as well. I talked about the deep fatigue and brain-fog that made a four-hour exam seem like torture. It sounded to my ears as if I were talking about someone else, someone who actually needed help. Someone who just might be disabled.
He described the options available to me, and put all of them into the official plan, to be used as needed. I was entitled to use voice-activated software for my doctoral exam, and would take the exam in an adaptive lab instead of with the other students. I would be given extra time to complete the exam, as well as breaks “for fatigue and pain management.” I also had the option of using a “human scribe.” (This one seemed bizarre to me – my sister and I later cracked jokes about how she could be my scribe, and I would buy her a funny hat, snap my fingers at her (if I could) and call, “Oh, scribe!” when I needed her.) If I needed to, I could take the exam over two days instead of one. I was entitled to record lectures or have someone assigned to take notes for me. I could even have a research assistant, who would run around the library gathering books for me. I could get a disabled student parking permit once I got a regular one from the DMV (it had never occurred to me to do this). I still couldn’t believe that I was actually entitled to these things, that I might actually need them.
That was when my denial (the other “D” word) began to crack for the first time. I went home after this conversation and cried for a long time. I felt all kinds of things – strangely humiliated, sorry for myself, aghast and guilty that the director had felt sorry for me. Still felt fraudulent, too. And I was still surprised that it had gone so easily, that both the doctor and the university agreed that I needed all of this help.
The exam came and went, and I did end up using a few of the modifications. I continued to feel guilty and horrible as I sat in the adaptive lab, using the voice-activated software, surrounded by students whose disabilities were more visually obvious than mine. I also felt frustrated by how poorly the software worked, how the computer kept freezing up, how little tech support there was for this tiny little lab. I started to understand that while it was great that the university offered disabled services, they still had a long way to go before things could be considered truly equitable.
Confession time here – I’ve always said this blog will be completely honest: I am a college professor, and in the past, I felt a secret frustration whenever a student handed me a sheet from the disabled student services office, describing their test mods. Of course, I always complied, and I believe I was always pleasant and professional about it, but every time I saw one of those sheets, I knew that it was going to mean extra work for me. So it was hard for me to go to the professor in charge of the exam and give her my sheet, knowing that she, too, might be frustrated by the extra work. Now, of course, I’m ashamed of those feelings. (Do you think less of me now?)
A few months later, my sacroiliac joint flared up and I had to use a cane to walk. One day during this time, I drove to the campus where I teach and couldn’t find parking anywhere except at the bottom of a big hill. The only way up that I could see was a large concrete staircase with over 100 steps. I hobbled up the steps with my cane and arrived at the top exhausted and in pain. The next day, when the situation repeated itself, I found the “accessible” route from that parking lot – a long, winding wheelchair ramp up the hill. Great for people actually in wheelchairs, but the distance was MUCH longer for someone walking. So, finally, I bit the bullet and asked my rheumatologist to fill out the forms for a disabled parking permit. And again, I was surprised when both he and the DMV granted it, easily and without question. Seems denial was still alive and well…
Although my denial still comes out to play fairly often, things have changed somewhat since that time. I have gotten used to the parking permit, and use it more often than I expected to. I’m not quite guilt-free about it, so I try not to use it when I’m doing okay, and I still feel weird when people watch me getting out of my car. I used the free disabled shuttle when I went to the zoo. And a few months ago, I was in Costco with my toddler and a full cart when overwhelming fatigue suddenly hit. (Don’t you love how RA does that?) I went over to the customer service desk, smiled at the person there, and asked, “Is there anyone who can help me get my things out to my car? I’m disabled.” No tears in my eyes, no lump in my throat – the word came out surprisingly easily. And the Costco workers were happy to help.
Tags: Acceptance, Denial, Disability
After five years of having RA, I still have my moments of denial. I’m glad you were able to get the help that you needed.
God Bless!
That gave me a good cry this morning. 🙂 It is hard to see ourselves in a different way and I admire your strength to work so hard.
I have a new RA diagnosis and I have deep fear of what you have described. I too think that guilt might be one of the hardest parts to overcome. When I told my boss my diagnosis she said “well you look fine” and I realized that unless you “look disabled” you don’t get much sympathy! 🙁
I know what you mean. I too have a disabled parking permit and when I do need it I am very happy to have it. But I do feel like a bit of a fraud.
And I was sort of shocked to get approved for the disability tax deduction On a good day I feel as though no one could tell I have a problem, as long as I put my hands in my pockets. But even on a bad day I don’t look that bad. Watching the Olympics makes me regret that I did not follow more athletic pursuits when I could
Annette
Up until recently, the hardest part was asking for help, and more things got harder. I can also understand Amanda’s feeling towards hearing “but you look fine.” Denial comes becaue finding acceptance from others is hard. The director is right about the limits stacking up. Eventually, when there is nothing left to lose, there are no more fears. I still have many moments of deniala and as I read your post, I understood all too well your relectuance to get assistance. (((Hugs.)))
This post left me with a lump in my throat, too. Thank you for sharing those experiences with us.
I often feel fraudulent, too, when I accept any assistance or modifications to things I feel I should be able to do. It’s a difficult feeling to overcome.
It is so hard to accept help. I think for me it is not denial but rebellion against this cr@ppy disease. I used to feel guilty about the disabled parking permit, and like you, I only use it when I am bad. But most people think disabled parking is only for wheelchair bound people. I actually had a man retort back to me “yeah, so you are handicapped?!” I showed him my hands and told him I had RA, and he shut up fast. Of course as far as he knew I had a wooden leg. People can be insensitive to say the least.
~Judy
This post really hit home. Peachy planner referred me here as I wrote a similar post this morning. I’d love for you to read it and comment. I am wrestling with the disabled label myself and have not come as far with it as you are. Psychologically I think this has been the most difficult part of this disease
Laura, thanks for your comment. Where is your blog?