Surviving Ankylosing Spondylitis: The Workplace
How to work it, when your body won't work...
If you take a poll of the ankylosing spondylitis community, you will find that employment is a real trouble area. Most have great difficulty keeping up with a job, and several are unable to work full time or at all.
This is not just because of the pain involved with AS, but also because the workplace can be so unforgiving.
Employees are expected to:
- Keep up
- Be there all day
- Be there all night by working “after work”
- Go places
- Sit for long periods of time
- Go to staff parties and events
And do it all with a smile.
Work with ankylosing spondylitis is a struggle
I work as a full-time special education teacher. You are mistaken if you think teaching is just standing up or sitting at a desk and giving a lecture. Teaching can be physical, especially special education. The same goes for people in IT. It’s not just sitting at a computer and typing, they are also required to carry computers and other equipment, crawl under desks, possibly run cords across office buildings, and did I mention sitting for long periods of time.
Simply put, every job seems to come with additional tasks that can take a toll on the body.
One of the biggest reasons why people with ankylosing spondylitis and other chronic illnesses struggle at work is due to missed time. We miss work because we can’t move, think, or even breathe. We know that we could face possible judgment from bosses and co-workers if we can’t keep up.
The other reason for missed time is for doctors appointments. In a perfect world, all doctors would have late afternoon hours for all of us that work. But, instead we call up and the only appointment times they have are 10:00 and 1:30. If we were only going to one doctor once every 6 months, that would be fine. But, some of us need to see 5 different doctors, sometimes once or twice a week. And, even if you manage to get an appointment during your lunch break, from experience, your break will have passed, and you still wouldn't have seen the doctor.
How to make it work
Keeping in mind I am not a certified life coach, but these are some tactics I have found to make work a little more survivable.
Make work your own
As I wrote in “When Self Care Takes A Back Seat”, it is important to work at your own pace and try to create your own deadlines. You know your own sweet spot when it comes to projects so try to form tasks around that. Along those lines, do the work in your own way. If writing reports in big rainbow-colored fonts makes the task more fun, then do it! (Just remember to change it back) If you are more productive standing or sitting on the floor, then by all means, do that. Make work more enjoyable.
What I love about teaching special education is that I'm usually in a room with a ton of adaptive seating, dim lights, soothing sounds, and fidgets. To work my best, I need many of those things. I love a good ball chair, green filters on the lights, and the sounds of the seaside playing.
See if your workplace will provide you with adaptive seating, a standing desk, light filters, or anything else you think would help you survive the day. And, if they won’t provide you with these things, you can try to find them on Craigslist or you can get documentation.
The Americans With Disabilities Act (ADA)
“The ADA is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public. The purpose of the law is to make sure that people with disabilities have the same rights and opportunities as everyone else.”1
Just in case you are wondering, this means you! Ankylosing spondylitis is considered a disability. And, no, you do not have to be a full-time wheelchair user to qualify. If your condition makes any part of your job difficult and there is a way to assist you in doing that part, go to your HR department and ask for it.
I requested seating I could easily transport, and documentation that I should not be expected to run or carry children except in cases of emergency. I was given a camping stool (with swivel) and an understanding that I might need to sit when others are standing, but it won’t keep me from doing my job.
Your doctor will need to fill out a form, but at least for me, it was not a difficult process.
ADA is a federal document that protects you from workplace discrimination. An employer can not make life difficult or fire you based on your disability. Getting this coverage before trouble starts is a lot easier than after. So, I advise anyone who feels they need protection under ADA to get it, just in case you need it.
This brings us to probably the hardest piece of advice in surviving the workplace.
Make people aware
Even as I write those words, I shiver a little. Talking openly about your ankylosing spondylitis is never easy, especially at work. Your illness is and should be a private matter, but unfortunately, disclosure is sometimes your only option.
I want to remind everyone that an employer is NEVER allowed to ask you about your illness or disability. You allowed to share whatever you want, but if your supervisor asks you, especially in the context of job performance, you have all the right to say nothing and report him or her to HR. You have that protection.
For me, I choose to tell my direct colleagues. I work with them and I want them to understand why I might struggle in certain areas, and why I might need to accommodate my environment or teaching style. I trust that they will understand and accept my needs.
Now that I have protection under ADA, I am fully out. Because I have this federal document, I feel I am able to openly discuss my AS. My supervisors know and they are accepting of me.
This is my story, you may be in a different situation, so do what is best for you and share what you want with whomever you want.
Hard work does not need to be hard
Everyone with ankylosing spondylitis is different. We all are able to do different things, at different paces. Just because one person can work a 40 hour week does not mean you are any less of a person because all you can manage is 5 hours a week on a blog, or crafting, or just keeping up with your house the best you can.
You are still worthy and I hope this helps you in whatever you do to be you.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?