Tuesday, July 8, 2008

Voices From The Body Chronic: Chronic Pain in the Office: How to Work Through It

Quinn is the author of Life With Vulvodynia. She has inspired me with her quest to make her workplace more accommodating of her chronic pain and I asked her to share her story here. Her site is hosting a live online support group on Thursday, July 17 at 8 p.m. EST. Be sure to check it out.


Two years ago, I started my first adult job. I had to dress up, I had to show up on time, and I had to work at a desk all day. I had no idea how much this exciting lifestyle change would exacerbate my condition.

I have vulvodynia, pudendal neuralgia and the occasional bout of vulvar vestibulitis. I don’t really have a “body chronic,” it’s really more of a “vagina chronic.”

Sitting has become my enemy. I absolutely cannot sit in a normal chair for more than two hours without beginning to flare. My biggest problem is pudendal neuralgia, which is commonly described as pain with sitting. Unfortunately the pain doesn’t stop once you get off your butt. On the contrary, that pain can stay with me for weeks.

It became impossible for me to function at my desk job. I needed to make some changes fast, but I didn’t want to draw any negative attention to myself. I tried a number of cushions and doughnuts, but they made no difference. I had to do something drastic.

My mother suggested I try a kneeling chair. She thought it would help alleviate the pressure on my inflamed nerve and allow me to continue to work at my desk. Before I made the purchase, I wanted to know if that kind of chair would make a difference in my pain. I called my pelvic pain specialist, but he had never had a patient use one.

I then turned to the internet and consulted pudendal.info. This is a wonderful resource for women with pudendal neuralgia and I recommend that women who have been diagnosed with vulvodynia to take a look and learn the facts about this condition. It could be the ultimate source of your pain.

There was an entire section on seating and I learned that a number of people endorsed the kneeling chair. I decided to give it a shot, but I didn’t know how I was going to pay for it.

Very timidly, I approached my boss and asked him if he would finance the purchase of a kneeling chair for me. I explained that I had a chronic pain condition that was aggravated by sitting and that I needed an alternative.

He told me to contact the Disabilities Service Office (DSO) and see if there was funding available for the purchase of special needs equipment.

I work for a very large university that is expected to be an equal opportunity employer. I was intimidated by the thought of navigating the vast bureaucracy, so at least for the time being, I decided it would be best for me to buy the chair, and find out if I could be reimbursed later.

The chair helped, but there was still a limit to how long I could use it. But it was certainly better than nothing. That is, until it broke.

One day, I was leaning to pick up something on the floor and I heard a crack. The kneeling pad broke in half. On top of being a blow to my ego, the broken chair presented a very serious problem. I didn’t have a way to work at my desk.

I started kneeling on a regular desk chair and standing bent over my desk. It was miserable. I had to find a better way to function in the office.

I contacted the Disabilities Service Office and asked for advice. I was told to have an ergonomic evaluation to determine my office needs. The gentleman who preformed the evaluation was very sympathetic and recommended a height adjustable workstation. That sounded perfect. I could then alternate between sitting and standing to take pressure off my troublesome nerve.

When I followed up with the Disabilities Service Office, I learned that it was my boss’s responsibility to finance the purchase of special needs equipment. I was told that he should have paid for the chair and he must pay for the new workstation.

Apparently, the Disabilities Service Office acts as an enforcer. If an employer is reluctant to comply, they function as an employee liaison to inform the employer of his obligations.

I have a big strike against me having a noticeable chronic health condition. When I have a serious flare, I may have to miss time at work in order to see my specialist. I always bring a note, but I have been told on more than one occasion that my absences are understandably problematic. If I’m not at work, I can’t do my job. Naturally this is a frustrating for an employer.

I didn’t want to make any waves or ruffle any feathers.

Nervously, I asked my boss if he would support the purchase of a height adjustable workstation. I showed him a printout with a picture and the price. He asked again if the Disabilities Service Office would pay for it and, very softly, I told him no. I had no desire to tell him that he was expected to pay, and fortunately, I didn’t have to.

After considering the price he said, “if it was going to cost $3,000, I would say no, but because it’s just $300, that’s ok.”

I felt incredibly relieved. After paying almost $300 for the kneeling chair, I didn’t want to have to purchase the workstation as well. My contact at the Disabilities Service Office strongly encouraged me to pursue a refund on the chair, but I think I need to choose my battles.

I feel like I’ve won and I don’t want to fight any more.

As women with chronic pain it is important to know that we do have rights, but it is also important to realize that exercising those rights can cause an antagonistic relationship with your employer. Despite the laws in place to support our needs, it’s very easy to work around those laws to find ways to fire a difficult employee.

I’m extremely fortunate to work where I do, and to have a boss with some amount of compassion. Please don’t interpret my story as a call to arms. I’m not encouraging all women to go out and demand better work equipment. I do, however, want you to know that you have options, and it is possible to make your work environment physically tolerable.