Chronic pain on campus: 'It's a silent, daily battle'

By Louise Kinross

Judy Sookehan Woo is a part-time student studying sociology, linguistics and women’s studies at a university in Western Canada. Judy has fibromyalgia and chronic fatigue. Fibromyalgia causes constant musculoskeletal pain and problems with sleep, fatigue, memory and mood. “If someone comes up and gives me a hug, it hurts,” Judy says. “Every day is unpredictable.” Chronic fatigue is a condition where the person feels exhausted no matter how well rested. “My illnesses are invisible and it’s a silent, daily battle,” Judy says. As a woman of colour with invisible disabilities, Judy has experienced what she describes as ableism and racism on campus. Follow her @Woo_Judy on Twitter.

BLOOM: What’s the biggest challenge you’ve faced with an invisible disability?

Judy Sookehan Woo: Negative reactions from professors who assume I’m healthy and able-bodied and treat me like I’m cheating because one of my accommodations is extensions on when papers are due. One professor, when students were in the room, told me she had ‘looked up and down’ the school policies and there was no mention of extensions.

This is a documented accommodation for me that is sent in a letter to the teacher by the Disability Resource Centre through interoffice mail. Usually, during the first week of class, everything's fine. Then, I can tell when the professor receives the letter about my accommodations because of the way they react to me.

It’s like they expect me to be the model minority student and they’re in a state of shock when I’m not, and then I’m treated awfully in class. They had it really rough when they went through their degrees and I appear okay so I shouldn’t use this letter as a way to manipulate the system. 

BLOOM: What did you do after that professor made that inaccurate remark?

Judy Sookehan Woo: I complained to the school’s Disability Resource Centre but they didn’t know what to do. There wasn’t a form for me to fill out or any kind of process to address this. There was no ‘I’m sorry this is happening to you.’ I asked if I should go to the Human Rights and Equity office and they dumped me over to that department. It was up to me to go to a different department I didn’t know to explore what I could do.

BLOOM: Have you found any administrator on campus helpful in resolving issues when your accommodations aren’t recognized?

Judy Sookehan Woo: Yes, the ombudsperson. There have been times when I e-mail a teacher to say I’m sick and I’ve missed a midterm and how can they accommodate me? And the professor doesn’t respond. Nothing. So going to the ombudsperson is the only thing I’ve found helpful. They’re neutral, but when they’re involved, professors are more likely to communicate.

BLOOM: Was there a group for students with disabilities on campus?

Judy Sookehan Woo: Yes, but it was an advocacy group that was more interested in politics than supporting people. It was like a popularity contest. They weren’t helpful when I came to them for advice and support.

BLOOM: Do most of the people in the group for students with disabilities have physical disabilities?

Judy Sookehan Woo: No, all of them had invisible disabilities. But except for two other women, they were all men and all white. I was the only person of colour who was transparent about my illness. It was very alienating.

BLOOM: Besides negative reactions about accommodations from professors, are there other challenges for you on campus?

Judy Sookehan Woo. Yes. There’s a lack of designated lockers for students with disabilities. I carry a big heavy knapsack and I try to find a locker assigned to people with disabilities that’s close to the class I have, but they’re scattered across the campus and the ones they have are usually already taken. There’s a similar problem in the main library where there are about 100 computers, but only one set up for people with disabilities that’s accessible. If I need it I have to kick that person off.

BLOOM: You mentioned there are designated rooms in the library with accessible computers. What are they like?

Judy Sookehan Woo: The computers in the designated rooms are very old compared to the computers available in the main library. They are constantly being fixed, so they’re not always there. There are two tiny rooms with four computers so it’s very cramped. There was never a working printer or access to the USB drive in the computer. If a person was in a wheelchair there’s no way to plug in their stick, unless they lift the equipment and plug it into an outlet in the wall.

BLOOM: What advice would you give a student with an invisible disability who’s just starting on campus?

Judy Sookehan Woo: Surround yourself with a supportive network of people and administrators.

BLOOM: How do students find supportive people? Like in your case, you didn’t find the group for students with disabilities helpful?

Judy Sookehan Woo: If you can find even a core of two to three people it’s important. When school policies change, a lot of the time students like us find out through word of mouth. I went to three clubs before finding a couple of people I consider friends. 

One of the clubs I went to was the students of colour collective. It took me a long time to find out who was a really good friend and who wasn’t. The people who work at the student loan department are very familiar with people with disabilities and grants and funding, and they can be a good source of support. They can help explain what the criteria is to get different kinds of funding.

BLOOM: What are other tips you’d give?

Judy Sookehan Woo: Have your accommodations written down for the professors. Do not compare yourself to other students and recognize how hard you have worked. 

It’s a full-time job to take care of yourself and keep up with classes. If you find yourself just coping, but not managing your illness, don’t be afraid to drop a course and regroup. To me, coping is like treading water and it’s not very healthy. You can end up burning out. 

Because school is stressful, be aware of your emotional and physical triggers. For example, I can’t drink coffee because it triggers my anxiety and school is already high anxiety as it is. Reward yourself every time you accomplish a goal. It’s not easy having a disability and going to school at the same time.

BLOOM: What would you like to do in the future?

Judy Sookehan Woo: I’d like to use new media to educate others as a woman of colour in the social sciences. Whether it’s Twitter, or filmmaking or using other social media, I’m interested in digital sociology.