Multiple sclerosis is not something to be ashamed of, but the choice of when or if to share is entirely yours.
Welcome to Ask Ardra Anything, an advice column about life with multiple sclerosis from blogger Ardra Shephard. Ardra has lived with MS for 2 decades and is the creator of the award-winning blog Tripping on Air, as well as the hashtag #babeswithmobilityaids. Got a question for Ardra? Reach out on Instagram @ms_trippingonair.
When is the best time to share that you have MS? I had a terrible experience at work, and now I’m reluctant to share with anyone.
— Tara K.
When I was first diagnosed with multiple sclerosis (MS) 20 years ago, I didn’t think twice about telling the important people in my life. I, naively, had no expectation that I would be treated differently.
That said, I made my mom call my friends while I hid in the next room. It wasn’t that I couldn’t stand to say the words “I have MS,” it was that I was still reeling from my diagnosis and I wasn’t yet ready to reassure everyone else that I was OK.
Unfortunately, the decision to disclose my diagnosis to my wider circle would not be mine to make.
During a brief leave of absence from my job, a well-meaning colleague sent an email advising 600 coworkers of my new “sick person” status. The message even included a collection for an MS nonprofit.
I felt like I’d become the poster girl for chronic illness overnight.
When I returned to the office, there were whispers and sad looks from people who’d only ever seen me in the cafeteria, but now felt they could give me advice, or ask personal questions. Someone even told me everyone’s insurance premiums would go up!
It’s also true that I had a lot of much appreciated love and support — at least in the beginning.
Whether you decide to dish, or to keep MS your sick little secret, your workplace experience will be impacted. And chances are your health will be, too.
According to recent research, disclosure and concealment attitudes around MS can lead to anxiety and depression.
There are pros and cons to both paths.
Workplace anxiety, complications, or job loss
There are employment laws to protect people with disabilities. In reality, many still manage a range of consequences after sharing their diagnosis, including feeling forced to quit, invasive questioning, missed opportunities, and even job losses.
Stigma, stereotypes, lack of understanding
Stigma and stereotypes can lead to being treated unfairly or as less capable.
At work and in my personal life, I’ve felt the need to explain or prove my disability.
I felt I had to justify vacations when I was working reduced hours. Some of my co-workers saw my accommodations as luxuries or special treatment.
MS affects us physically, but the stigma associated with disability can be an emotionally devastating invisible symptom.
Years after my negative experiences of being transparent, I started keeping my MS to myself, but I quickly learned that hiding my health status came with its own problems.
I lived in fear of being found out or of missing new opportunities.
I remember the panic of being at a wedding and slipping away to a private room to give myself an injection (of the disease-modifying medication I was on at the time) when someone walked in. I was sure they thought I was using illegal drugs.
I also remember taking a class and being asked in an accusatory tone, “Why are you walking like that?” as if I had been drinking.
Keeping secrets is stressful.
Even the language we use around sharing our disability status as something we need to “disclose” contributes to the idea that we’re hiding something nefarious or that an illness like MS is something to be ashamed of.
Employers are legally required to provide reasonable workplace accommodations to people with disabilities.
Whether you need a shorter work day, more bathroom breaks, or a closer parking space, there are dozens of modifications that could make it easier for you to do your job.
Many governments offer significant financial incentives to employers of disabled people.
Your company or prospective employer may not be aware of these incentives, so do some research and bring any perks to their attention.
The opportunity to be your authentic self
Being open puts you in control of your story and allows you to decide what it means to have MS.
The opportunity to effect social change
Disability is vastly underrepresented in the workplace, while the percentage of unemployed people with disabilities is disproportionately high.
As a society that strives to be inclusive, we’re slow to understand that true diversity includes disability.
By being open and unapologetic, you contribute to inclusivity in a meaningful way. This can have a ripple effect on attitudes around chronic illness.
If you need workplace accommodations, you are required to provide your human resources department with medical documentation to support your requests, but you do not have to share any of this information with your boss or co-workers.
If you don’t need accommodations, you don’t have to tell anyone unless (and until) you want to.
I wish I’d understood that all HR needed to know was that leading a 2-hour seminar without a bathroom break was problematic for me. I didn’t need to explain the excruciating details of my bladder dysfunction to my boss.
It has been liberating for me to finally be public about my MS.
Parts of my disability are no longer easy to hide, but even after 20 years, I still face disclosure decisions from time to time.
Understanding that it’s a privilege for me to share personal details about my health — that I don’t owe anyone an explanation — has empowered me to protect my privacy when I feel it’s necessary, and to share my diagnosis differently when I do decide to divulge.
Now I only share my diagnosis when it benefits me, not to satisfy someone’s curiosity.
I am matter-of-fact in my disclosure, knowledgeable about my rights, and confident in my requests, without feeling like I need to explain or justify my needs. I say “thank you” like a decent human, without gushing.
I no longer allow myself to believe I’m a difficult employee or a problem to be solved.
Whether it’s with your employer, prospective employer, or even in your personal relationships, sharing your MS diagnosis is a deeply personal decision, with many factors to consider.
The right time to share is the time that feels right for you.
Ardra Shephard is the influential Canadian blogger behind Tripping On Air – the award-winning, irreverent and funny, insider scoop about life with MS. Ardra is a story consultant for television network AMI and has partnered with Shaftesbury Films to develop a scripted series based on her life with MS. Follow Ardra on Facebook, and on Instagram where Yahoo Lifestyle reported that “@ms_trippingonair is the number one chronic illness account to follow.”