What I Learned When I Asked for Accommodations at Work for My EDS

I have been battling hypermobile Ehlers-Danlos syndrome (hEDS) for most of my life. Aside from addressing the intense chronic pain, crushing fatigue, and constant joint dislocations and subluxations –which seems like a full-time job in and of itself – I would work full-time hours, parent my teenage son, be a full-time wife, and try my best to help my husband keep our home in some sort of shape fit for human habitation. The rest of the time, I either battled back tears of pain, or slept.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I was put off of work for nearly four months after a rotator cuff repair. During my time off of work, I was given the chance to let my body rest and recover from not only a surgical procedure, but rest in a way that I have not been able to in a very long time. It made me realize that as much as I’m loathe to admit it, I am not a superhero and need to balance my daily responsibilities better.

When I was permitted to return to work, it was on a modified early shift and four day work week. I realized how much of a positive impact that my reduced schedule and earlier shift had on my life. I was sleeping better, and taking less pain medication, because I was able work earlier. The more I move around, the worse the joint laxity and pain becomes. I realized that I didn’t have to spend all of my spoons running around before work, as I was able to have my husband drive me to and from work – thus minimizing subluxations in my right hip. If I don’t feel up to running errands immediately after work, I can go home and lie down for an hour before tackling any urgent tasks that need to be taken care of, and reprioritizing non urgent tasks or errands. The problem is, this was a short-term modification to allow me to come back from surgery and graduate back up to my regular midday shift schedule and full-time work week.

When I went for a follow-up with my EDS doctor, he mentioned reducing my work hours. When I told him what schedule I was on, and how it had helped me, he made the decision that I should work this schedule on a long-term basis. Please don’t misunderstand me – this wasn’t and isn’t a “cure” for the chronic pain that I experience. This is a modification that allows me to better manage my hEDS symptoms, and thus helps ease the intense pain that comes along with it.

I was apprehensive bringing my doctors forms into work for several reasons. I didn’t exactly hide my hEDS at work, but I definitely downplayed its impact on my life and wellbeing. I didn’t ever let on that I was usually in enough pain to make the average person sit on the floor and cry. I didn’t let on that I was scared of what my future holds, and I definitely didn’t let on that I was terrified that I’d lose my job for being sick. I was also nervous about being put into the “disabled” category, and worried about how it would affect my employment. In short, I didn’t ask for help from my employer, as working at Agero, which is a busy roadside assistance contact centre, I thought that I’d get the eye roll and told to suck it up.

I dropped off my doctors forms, and had an impromptu meeting with Stephanie from human resources (HR). Stephanie and I have always gotten on well. She is someone that I genuinely like, both as a person, and the HR employee relations point of contact. I knew that Stephanie would have no issues with the fact that I was in fact much sicker than I let on, however issues like this are dealt with through our head office. Stephanie was her usual fantastic self, and sent my information off with the reminder that she is always there to help.

I was expecting a call from our HR department from head office, and was absolutely primed to defend myself, my body, and my illness. After all, the only aspects of my hEDS that can be seen without the benefit of X-ray and MRI technology are finger splints, a cane, and the fact that my joints move far past the “normal” range of motion. I was nervous about head office questioning the legitimacy of my illness, the fact that there is no cure, and that treatment is supportive care – especially since they can’t actually see my mobility aid or any physical “signs” of my illness, coupled with the fact that Ehlers-Danlos syndrome isn’t a widely known disorder.

I had resigned myself to the fact that I’d most likely hear the polite but impersonal response that my employer was not equipped to accommodate my needs, because as a chronically ill person I’ve become accustomed to my challenges being dismissed, with the underlying subtext of somehow not being “worthy” of help.

To my absolute surprise, when I spoke with Christina from head office, I didn’t hear “you’re not worthy of help” or any variation thereof. I did not hear a manager speaking to an employee. I did not hear fake concern or any kind of exasperation. I heard one human being speaking to another, with the sincere offer of help. After switching myself off of defense mode, I detailed what I would need in order to be more successful at work – simple things like moving my desk closer to the entrance, and schedule accommodations recommended by my doctor.

Stephanie and Christina told me, “Yes, we’ll help you,” but that’s not all I heard in that simple sentence – I heard so much more.

I heard “we respect that you have different needs than traditionally abled people”.

I heard “we value you as a human being.”

I heard “you’re a valuable part of our team.”

I heard “we can’t really understand what you go through, but we’d like to try – please explain it to us so that we can figure out the best way help you.”

I heard “we are on your side.”

I heard “please don’t be afraid to ask for help.”

Though neither Stephanie nor Christina knew it, they had given me an invaluable and much cherished gift – they listened to me talk about my challenges without judgement, and took my needs seriously. That may sound simple to the point of ludicrous, but as a chronically ill person, being listened to by a layperson without judgement, criticism or the question, “Well, can’t you just ___?” is truly a rare experience.

I absolutely recognize how lucky I am that I work for a company that strives to embody this quote from Richard Branson:

“Clients do not come first. Employees come first. If you take care of your employees, they will take care of the clients.”

I always strive to be the best employee I can be regardless – but after hearing “we value you as a person and want to help you,” it makes me want to work harder and be better, because I know how very lucky I am that my employer values me as a valid, worthy human being, differently abled parts and all.

I learned some valuable lessons last week. I learned that corporations can and do care about the health and well-being of employees. I learned that fear of being dismissed for being chronically ill has held me back from living my best life. I learned that allies can be found where you least expect them. Most of all, I learned that the perception that all contact centre corporations do not care about their employees is completely and utterly false – in my experience with Agero this week, I’ve had nothing but offers of help, and a couple of fantastic women going above and beyond to help me live my best life.

I’m so very glad that I faced my fear. I’ve gone from someone terrified of being fired for being “too sick” to someone that feels that even with hEDS all things are possible.