Disability Employee Awareness Month

"Invitation to Self-identify: During Disability Employment Awareness Month, I hope you will take a few minutes to report if you have a disability."

This was the title and first introductory sentence of an email I recently received from my employer. I am not sure why it bothered me and provoked such a visceral reaction from me. The topic of disclosure to my employers has been something that I have struggled with in the past. I have had some jobs where I have been very open about my JRA and other jobs where I felt it was unnecessary to ever mention it. At my current job, I have told my supervisor and some co-workers and even though I am certainly not hiding it from anyone, I am also not shouting about it at the top of my lungs. All of this is ironic, considering that I work in healthcare as an occupational therapist and work with kids with many different disabilities every day. You would think that I would feel more open and honest about discussing my JRA, but honestly it is something that I always initially struggle with revealing. 

I am often afraid to disclose my JRA at work because I do not want to be treated differently than any of the other employees. Although I know it is illegal to discriminate against people because of their disability, it is hard to not be worried about this. On the other hand sharing the impact my JRA has on my everyday life, may help if I have to ask for reduced hours or work accommodations. I continually struggle between these two thoughts.

I think one of the reasons this particular email caught me off guard is that it forced me to define whether or not I consider myself "disabled." The email from my employer defined disability as:

You are considered to have a disability if you have a physical or mental impairment or medical condition that substantially limits a major life activity, or if you have a history or record of such an impairment or medical condition.

They then listed a variety of disabilities such as cerebral palsy, diabetes, multiple sclerosis, PTSD and Bipolar Disorder. Rheumatoid Arthritis was not listed. Typically on a day to day basis I do not consider my JRA as causing me to have a disability. I work over 40 hours a week and my JRA does not impact my ability to perform my job. However, I am usually exhausted after working and would not be able to keep up with my physically and emotionally demanding profession if I didn't have my supportive husband. I also have to constantly juggle medical appointments in order to not miss too many work hours. Just managing my JRA on a daily basis requires extra effort and sacrifices so I am able to perform my job without any accommodations or concessions. 

I am still undecided about whether or not I am going to "declare my disability" to my employer on their human resource website. Identifying myself as disabled will not change how I perform my job, nor will it automatically provide me with any job accommodations. In essence it will not change anything for my benefit. Instead, I believe there are other ways to improve awareness about disabilities in the workforce that will be more beneficial than just declaring it on website.

The White Lie

"Did you hurt your knee?"

If you live with JRA you have inevitably heard this question and have been faced with the dilemma of telling the complicated whole truth or just a white lie. As a child in middle school, the occasional mean 6th grader would ask "why do you walk funny?" I would just ignore them because explaining the truth would take far too long to sustain a 12 year old's attention span. However, the comments and questions don't stop as you graduate high school.

Recently, my right knee has been slightly stiffer than usual, causing me to occasionally limp. As I was walking into work a co-worker, who I barely know by name, asked if I had hurt my knee. He was probably just trying to be nice, initiate some casual conversation and voice his concern. However, I barely know his first name and I only see him once a week for a few hours in passing. I decided it would be much easier to tell a white lie. "Oh, I hurt it skiing." Then delve into the complicated past of my JRA. He responded, "Oh yeah, I've had some knee injuries." We connected over our mutual "injuries" and the conversation moved on.

Sometimes I feel guilty about telling these white lies, but I know it will save the inevitable follow-up questions. "Oh, you're too young for that." Or my favorite. "My dogs has Arthritis too." Yes, that's exactly the same thing... Occasionally, I will take the opportunity to educate people about JRA to help build awareness and advocacy, but some times you just want to to get through the day without having to explain your life story to everyone you meet. Sometimes you just want to be able to blend in without the questions. Sometimes telling a little white lie is what it takes.

To tell or not to tell...

This topic has been something that I have struggled with internally for many years, but have not been able to put into words until recently. I always knew I wanted a career in healthcare since a young child. Having to deal with doctors, therapists and medical professionals my entire life, I felt comfortable in that setting and wanted to help others in a similar way. For a variety of reasons my education and experience led me to choose occupational therapy as a career. I wanted to be able help the entire person, family or child, both physically and emotionally, to help them enjoy their lives.

Which is why it is ironic that I find it stressful and am unsure of how to discuss my Arthritis with my employers. I have had a handful of jobs since earning my degree and I currently work for 3 different companies. One employer knows a small amount about my JRA, enough to be flexible with my schedule and caseload when needed. Another employer knows nothing about my JRA, because it has never conflicted with my employment or work performance in that setting. And the third is a new position and I have not discussed it yet. Legally I know that I can not be discriminated against as a result of my JRA but does that really stop prospective employers initial reactions and thoughts? Even working in the healthcare field, I worry that employers will anticipate extra time off, see physical limitations or have reservations about hiring someone with potential health problems. As a result of these concerns, I almost never mention my JRA to employers in my interview and I wait until I demonstrate my therapeutic skills or build a rapport with my supervisor before I discuss it. Which is a shame! Because I do think that having JRA helps make me more empathetic towards my patients and hopefully a better therapist. 

I am not sure if my feelings on this matter will change as my career and work experience grows, or if this is just one of society's unfortunate stigmas that may never change. I have been fortunate to choose a career that I enjoy and can be flexible, as well as have employers who are understanding. However, I know for some people with RA, this isn't the case and they battle with the balance of working and managing their illness every day. I know I am fortunate to be where I am now and I am hopeful that I will continue to be able to find that balance of work and life in the future.