a man looking nervous talking to their boss about his axial spondyloarthritis with a shadow of a spine behind them

To Disclose or Not to Disclose Your Illness at Work

I recently started a new job. In my experience, starting a new job with a new employer comes with lots of uncertainty and anxiety without adding a disabling chronic illness into the mix. But starting a new job with axial spondyloarthritis adds more concerns and more questions.

Some of the questions that have been running through my mind lately include:

  • Will I be able to function at a high level in this new position with my AxSpA?
  • Can I get through the stress of the first few weeks without a flare-up?
  • Should I disclose my illness to my employer and/or my co-workers?
  • If I choose to disclose, who do I disclose my illness to?
  • How do I go about having that conversation about my AxSpA?
  • Will my supervisor be empathetic and understanding when it comes to my illness and my needs?

The decision to disclose

It’s hard to anticipate the answers to any of these questions before accepting a new position. And it’s hard to anticipate how someone may respond to a chronic illness disclosure. For that reason, I’ve had to think long and hard about whether I should reveal my illness to those that I work with, and if so, how much I should reveal.

I like to weigh the risks and benefits before making a big decision like this, but honestly my list of pros and cons are completely subjective. Not only that, but something that I see as a pro may quickly turn into a con if I miscalculate the reaction of the person that I’m disclosing my illness to.

The benefits of disclosing

But assuming everything goes well, here are what I consider the major benefits of disclosing my AxSpA to my supervisor:

First, I think a certain level of transparency is important when it comes to the circumstances of AxSpA symptoms at work. For example, I work at a desk in an office, but sedentary life only exacerbates pain and stiffness. I need to get up from my desk and walk around more often than others in my office, and I want my supervisor to know why that is.

Second, my AxSpA and its treatment, at minimum, means several doctor’s appointments throughout the year and lab work every three months. It can also mean frequent imaging, referrals to specialists other than a rheumatologist, physical therapy, and surgeries. All of these obligations take me out of the office more frequently than those without a chronic illness (not to mention the time I take off to nurse a flare-up). In my opinion, a little context on the matter isn’t a bad idea.

Third, AxSpA is a disability, so disclosing the illness within the appropriate channels makes me eligible for reasonable accommodations to help my work day be more manageable and less painful.

The drawbacks of disclosing

With that said, sometimes the perceived drawbacks of disclosing a chronic illness at work outweigh the benefits. Here are the major drawbacks that I worry about when deciding to reveal my disease at work:

The biggest drawback for me has to do with impressions. I value a certain amount of privacy and so it’s not always easy for me to talk about my health. I don’t want to be viewed as less than or judged because of my illness. In my experience, many people tend to either be supportive or listen, ask a few questions, and then hardly ever bring it up again. That’s fine with me. But there’s always that person who will judge you for being fatigued, for not trying a miracle remedy, or just for existing with a disability.

Then there’s the conversation itself. Let’s face it--that conversation is nothing if not awkward and stressful. And planning for the conversation is nerve-wracking. At my last job, I waited until I set up several doctor’s appointments before I disclosed my illness to my bosses, which provided me with precedence for the conversation. But it still wasn’t easy. The thought of having such an awkward conversation makes me want to shy away from it.

Whatever the drawbacks, I tend to always disclose my illness to my supervisor at work, if no one else. I don’t feel like I need to reveal every little detail about my life with Axial Spondylitis, and that’s okay. Instead, I hit on the basics and how that may affect my time at work. If I build more of a trusting relationship with my supervisor down the road, then I may feel more comfortable revealing details of the struggles of life with AxSpA.

Community Question: Have you shared your AxSpA diagnosis with your employer?

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