This post is by a friend of mine, Michele Harold, who holds the subject of disclosure near and dear to her heart.
“You’re always sick,” my coworker said to me as I entered the office.
I had called in sick the day before due to my disability. My disability causes chronic pain, fatigue, and low-grade fevers.
It takes a lot for me to call in sick. I usually have to be at a 9 or10 on a 10-point pain scale, have a fever over 100, and/or feel so fatigued that I don’t think I can safely drive.
In terms of “sick days,” I’ve never taken more sick days than I earn. But in American workplace culture, taking sick days is looked at negatively.
Standing in the lobby of my office at a local university with my coworker, who has just made an ableist comment in front of students and other coworkers, I am faced with my first disclosure situation of the day.
It’s barely 8 a.m.
Do I simply smile and walk to my office? Or do I “prove” that I am sick?
What does disclosure mean?
Disclosure can mean different things for different people, especially in the disability community.
For me, someone with invisible disabilities, my disclosure is, in theory, up to me.
No one can see my disability.
I say “in theory” because many times a seemingly “innocent” question, such as “Are you contagious?” or “Why are you always so tired?” can lead to disclosure that feels forced.
For someone with a visible disability, such as a mobility impairment, disclosure is made through the visible use of a wheelchair or cane.
The person with a visible disability doesn’t have the “choice” to disclose, but she may still get awkward questions, such as “What happened to you?” or “Why are you in a wheelchair?”
In my experience, there’s rarely a day without a disclosure decision—deciding whether to disclose my disabilities to someone.
Disclosing your condition is an ongoing process
I work in disability services, a field devoted to advocating for people with disabilities, but even there, I face disclosure decisions regularly.
Because my disabilities are invisible, I am more selective at work about when, where, and to whom I disclose.
Even with friends and family who already know about my health, I often need to remind them of the impact of my disabilities.
On a work trip a few years ago, a colleague and I had decided to go to dinner outside of the conference center.
The restaurant we chose was a few blocks away, and because I “don’t look sick,” my coworker suggested that we “just walk.”
I was embarrassed.
I didn’t want to make a big deal about a few blocks, so we walked.
While we ate dinner, my legs were burning in pain.
I knew I wouldn’t make it back if I walked.
I finally thought of an excuse about my shoes hurting and caught a cab back to the hotel.
Another time a friend planned a day trip for us but neglected to mention that it included a “strenuous three-mile walk.”
She knew my health history but also knew that I walked my dog on occasion.
“You can do it,” she had said, less as an encouragement and more as a declaration.
I felt forced to remind her of the unpredictability and impact of my disability.
She took great offense when I canceled.
I felt horrible and exposed.
Not being able to do things a typical person can because of my disabilities brings up feelings of “less than” and worthlessness.
This message to disabled people is an all too common undercurrent in our society.
Checking in with yourself when you feel pushed to disclose your condition
Here are some things I like to ask myself when face-to-face with a disclosure decision:
1. Do I feel safe?
In any situation, if I don’t feel safe, whether I disclose or not, I find a way to leave. It’s hard to always think of an excuse. I often feel flustered in these situations, so I usually fall back on good old “nature is calling” and exit to find a bathroom.
2. Do I trust the person?
Whether it’s a family member, friend, or coworker, feeling a sense of trust with the person with whom I disclose is essential. How the person will react, will his/her/their treatment of me change, what the person will do with the information—these are all areas of trust that impact my choice to disclose.
3. Who benefits from my disclosure?
This can be a challenging assessment to make in the moment of spontaneous conversation. But looking at why the disclosure issue has come up is important. Am I feeling forced to disclose? If so, I try to take a step back and evaluate what’s best for me. Typically, if I’m unsure, I err on the side of not disclosing.
4. Are my rights being violated?
In my field, I have learned a lot about the laws that protect people with disabilities. I have learned what my rights are and when and where violations may occur. The most salient point about our rights is to remember that our health information is private and not everyone has a right to know. (If you feel your rights are being violated because of a disclosure issue, such as in the workplace, consult with your regional Americans with Disabilities Act (ADA) Center)
5. Is it my decision to disclose?
As I’ve mentioned, my health information is mine to decide what to do with and when. Disclosure does not need to be a negative situation; in fact, it shouldn’t be. I have found that choosing to disclose information about my disabilities can be incredibly empowering and impactful when I make the decision.
Disclosure on social media
With the emergence of social media, our lives feel more “out in the open” than ever before.
Sharing and oversharing seem to be the way of life for many.
Many people share every moment of their lives on social media—from what they had for breakfast to what they ordered online to an unpleasant encounter at the coffee shop.
Sharing on social media for disabled people presents more disclosure decisions. The stigma surrounding disability is still present and strong in our society.
Sometimes, I’m hesitant to share if I’m having a bad day due to symptoms of my disabilities because I fear insensitive comments or mere dismissals with “I get tired too.”
Experiences with these types of reactions to disclosure from family and friends can weigh heavily on disabled people. That’s what makes disclosure such an intensely personal decision.
In most disclosure moments, especially when I feel forced, I’m more likely to disclose that I have an autoimmune disorder.
I’m less likely to disclose my fibromyalgia and depression.
Immune system dysfunction is “provable” in my case with blood work.
Fibromyalgia and depression are not diagnosed by any test. Both have camps of believers and nonbelievers, preconceived ideas and prejudices.
I choose to disclose my conditions more now
Over the years, I have become much more open about disclosing my disabilities for two reasons.
First, I work in disability services and want to raise awareness.
Ableism is real.
Our society is built by and for people who are “able-bodied,” aka, non-disabled.
This needs to change for full inclusion to become a reality, even among those who are in the disability community.
Second, I am working through my own ableist expectations of myself.
As I write this, I’m exhausted. But I’ve napped today.
The “shoulds” start to swirl in my head.
I should be able to fold the laundry.
I should be able to wash the dishes.
Even in my own mind, ableist stigma exists.
I make myself feel bad because of my disability.
This is something I continue to work on, and hope to help others with as well.
Michele Harold is a disability services professional in higher education and a career coach and resume writer for disabled people. When not working or talking about work, which is her passion, she can be found reading or catching up on true crime podcasts, or hanging out in the mountains with her fur crew of dogs and cats. Michele thrives as a disabled woman with fibromyalgia, behcets disease, and depression. Connect with her at @atlcareercoach on Instagram, or check out her website.
It’s such a tricky topic and different for everyone I think. Personally I disclose as and when I feel I have to or want to. I don’t all the time because I prefer conversations not to be centred on my health, but others time it is a must.
Claire, I totally agree!
I can relate to all of this. Great awareness post, Alison!
I personally don’t care if people know or not. I work from home and don’t need to worry about disclosing with employers since I’m self-employed. For outings, what’s most important is that I can protect myself from potentially harmful activities. So I’ve done that whole spiel with ‘not walking three blocks’ and my friends get it. I also won’t commit to anything over 2 hours outside my home and I’m firm about staying seated. My friends know I can do about 20 minutes on my feet each day and then I’ll pay for it later. I feel like I’ve been sick so long and I’m so open about it, the convos never really turn to my health anymore. Everyone who knows me understands now.
Thanks, Carrie! Sounds like you’ve set up your boundaries with your friends really well! It’s so good that you have that support and understanding! I especially like your 2hr guide for being away from the house. I’m going to try that!
This is always such a debate for me, I never know when the right moment is. I tend to be pretty closed mouth, but then sometimes that bites me in the butt when I have a flare.
Yes! It’s a challenge to protect ourselves and get what we need when we have a flare. Thank you for sharing!
I totally identified. Although, I have leaned towards sharing. I lean towards trust. However, that has burned me a few times. I want to be truthful, yet I don’t want people to feel sorry for me. Just understand. Invisible illness is difficult for others to understand and acknowledge.
Thank you for sharing your story. The ‘shoulds’ plague us all.
Thanks, Katie! Yes! I want to trust people, and I don’t want pity. It’s a hard balance.