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Full Disclosure: MS at Work

Full Disclosure: MS at Work

When I was first diagnosed with MS, I was working in a small department of a theater. I’d been exhibiting (and complaining about) various strange symptoms for quite a while, so I told the people who I shared an office with about my diagnosis. I didn’t really want it going much wider.

I didn’t feel the need to tell everyone

A short while afterward, I had a period when I was working on a freelance basis for several cultural organizations. Again, I didn’t feel the need to tell everyone I came into contact with, but I always made sure that at least one person I worked with knew about my situation. Anyway, applications were by Curriculum Vitae and informal interview, so there was no opportunity or need to tell.

Maintaining control – or being in denial

I think a lot of this was down to a need to keep some kind of control – plus I was probably in the ‘Denial’ stage of the process.

When I applied for my current job, the application form had this question:

Do you consider yourself to have a disability?”, with a “Yes / No” tick box.

Being in the denial stage (and only being at the start of a steep learning curve), I ticked ‘No’.

At the time I didn’t actually consider it a disability, plus I think that – at the back of my mind – I was worried I would be overlooked if I disclosed too soon.

Deciding to tell my boss about the MS diagnosis

Anyway, I got the job and decided to tell my boss (who I share an office with) on the first day – pretty high risk, but he appreciated being told. And things went just fine until a year or so later when I had two bad relapses in fairly quick succession.

The extended periods away from a small organization couldn’t really be brushed under the carpet, so it was decided that I would tell everyone at a staff meeting.

Telling the rest of my team

In my head, I had a perfect vision of how this was going to go – ladies sobbing and offering hugs, men fighting back tears and punching me on the shoulder. Well, this wasn’t perfect – the only person in tears was me.

Now I can talk quite dispassionately about ‘demyelination-this’ and ‘steroids-that’ for hours. But when I had to look everyone in the eye and say, “this is what this is,” I lost it completely.

Take my advice – if you’re going to do this, make some notes beforehand. Or read the MS Society’s Work and MS: an employee’s guide for some in-depth information.

I’m pretty vocal about my MS

Since then, and especially since my last relapse, I’ve been pretty vocal about my condition: I’ve appeared on local radio to talk about the UK MS Awareness Week and my work, I blog under my own name here, etc. And if the question ever comes up (“what’s the walking stick for?”), I tend to just get it out in the open – I mostly work with nice people who are genuinely concerned, so I don’t say it in a way which might make them feel bad.

The line I tend to use is, “I’ve got MS… it is what it is,” which is a little bit flippant. But what are the other options? Recount the days spent staring into the abyss, trying to second-guess the particular path my MS is going to take, and the effect it will have on my life and those around me? What good does that do anyone?

“Confession fatigue” at social events

Sometimes if it’s a social event, I can get a bit of “confession fatigue” – once I was asked five times within 30 minutes. After gently laying it out for two people (responses: disbelief, tears), I fudged it for the next two and ended up making a joke of it for Number 5.

A personal decision

When and whether you should disclose your condition to your employer and colleagues is an entirely personal decision for each of us to consider. But once it’s out there, you can’t ever get it back in the bag. And you might even get addicted to ‘coming out’ of the closet and become ‘that annoying guy who’s always banging on about his MS’ (i.e. me).

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • ThisBSMS
    5 years ago

    No way I am telling. I had this diagnosis for 8 years now and no one knew at work and I had different jobs. I will make up things when I am sick, I will say it is a ‘neurological condition’ at most, but never MS. I came very close to disclosing it, but decided against it. The main reason being is because I don’t want to be perceived differently, as an unreliable person, as a sick person who can’t do her job, because of this condition. I don’t want to be passed for a promotion and I definitely don’t want to lose my job over it. Plus people in the industry talk and there is always someone who knows someone else you are going to work with in the future. So no, not revealing! And I agree that companies just want to make money and bottom line is they want people without any issues and if you think you are not disposable, think again, because anyone at pretty much any level within an organization is replaceable. Why give them reason to think that you are less valuable? It is business. Thats it. Harsh but true. Even if I were to reveal I would not expect sympathy. It Is What It Is! 🙂

  • Steve Woodward author
    5 years ago

    wow – i had no idea that things were so bad in the US (I’m guessing there will be regional variations?).

    in the UK we have the Equalities Act (formerly the Disability Discrimination Act) but I know that workplace discrimination DOES still happen.

    i’m lucky in that i’ve always worked in the Arts & Culture sector – these organisations are usually funded with government money, which means that organisations are required to work within the law – so Laura’s comment that “ticking that disability box ‘yes’ is now a good thing for my employer, who needs to show they have met their disability hiring quota”, certainly has some resonance.

    do you think that this is down to MS’ public image? i know when i heard “MS”, i certainly thought “wheelchair” and “rapid decline” – and while this is the case for some of us, it’s not the case for all of us

    my point is, if there are more positive representations of MS (in all its different flavours), employers may be more understanding and less likely to discriminate based on their own ignorance and fear.

    might be easier said than done and cold comfort for the other commenters, obviously.

    thanks all for the food for thought!

  • poppydarling
    5 years ago

    “Their reason for existence is to make money not provide jobs for the disabled”? Wow. American employers hire people–some of whom believe in Buddha, have brown skin, have adopted children from Asia, have a mother in a nursing home, are struggling to beat breast cancer, or have MS. They are required to follow the law, and give everyone a fair shot at employment as long as they are qualified.

    Good on you, Steve.

  • ToBeOrNot
    5 years ago

    I told my boss on a Friday afternoon that his comments about the health of my fellow colleagues was uncomfortable for me, particularly because as a person with MS (which he did not know until this conversation), it made me wonder about my future. During my annual review, I had been marked as “the best marketing strategist he had worked with in his 40-year career”. Before work on Monday I was asked to breakfast and fired. Keep in mind that this is a guy who commented to me that an absolutely top performing female employee “must not have thought about her career” when she revealed that she was pregnant. And also commented that one of my peers had no promotion potential because he had heart bypass surgery ten years earlier. I have now been unemployed since October 2013… first time since 1982. My advice: NEVER reveal to an employer unless ABSOLUTELY unavoidable.

  • julie brush
    5 years ago

    Turned into long term disability,and by law…the state i live in…you have to file for ssdi as soon as you get l.t.d….i was spinning. Attorneys? The hospital i worked for…..huge corporation,no attny would touch my case for less than 5grand. The eeoc,Ha! They are for the employer,not the employee. I have researched so much about these places,circumstances,laws,etc…since this happened. I lost everything. I got ssdi,and didnt even want it. Unless you are a trust-funder,married,or a celebrity,you cannot live on ssdi. I put myself through nursing school,logged over a decade at the same job….to be worried if i can afford food,gas,copays…daily. multiple sclerosis hasnt got me down….the system,and how,we,with ms,in the states are treated…is what gets me down. I have no clue what to do,I want my life back,I dont know how to get it back,Im forever changed by this nightmare,I had no clue people could break the law like that……..

  • julie brush
    5 years ago

    Im still ranting…my computer is slow. So! I file for s.t.d.,cuz i need some income,had to take out my 401k savings,to live and pay 700bucks a month for cobra…..i was looking for another job,but my reference was the job i had been at for 11 years. The job that violated the ada and told me i had to go out on s.t.d. ….noone would hire a nurse,that had ms,whose former employer of 11 years duped. S.t.d.

  • julie brush
    5 years ago

    tobeornot…..I have suffered the same crap you have. It has basically ruined my life. Im a home healthcare nurse…worked at the same job for 11 years. Diagnosed on 09. The place was a family run business up until 2010. When first diagnosed,they found out because my neuro faxed my home care company a referal for me to have home health come out and do salumedrol. My boss called,was so cool,the end. When we got bought out by a big corporation……my life became hell. Everything was good,I had allready had my reasonable accomodations in place(30 hours per week instead 40) had my fmla etc…..on july 13th,2013….my docs sent in my yearly updated fmla papers and accomodation letter. I get a call to come into the office,was told they could not accomodate what they had been accomodating for 3years,and they were offering me prn….prn is we will call you when we are short staffed and loss of benefits. Ha! That is not an equal or effective accomodation. I informed them of this,left…and went to work. The next day,I received an email from h.r. that I was on medical leave. Huh? I felt fine. I told them,how can you,and not my mds place me on medical leave,when I am not sick! I had to go in for a meeting a week later,at which time,the head of h.r. and I went head to head as though we were 2 employee law attorneys. I would not accept their ineffective accomodation,I would not quit,they would not fire me. It got down to the head of h.r. telling me I had to go out on short term disability. I was not sick,had never been written up,worked as hard as anyone else there. I ofwas actually fighting to work!!!! I left. Layed in bed,suicidal,saw my neuro a week later….she was livid. She called the president of the company,she called the local ms society,whom were so baffled,I received a call from the nationa.frrrrl fms headquarters in d.c. But! None of these so called
    we are here to help you” could do a thing. Not even the disability rights

  • Laura Kolaczkowski
    5 years ago

    I would be talking to an attorney or at the very least filing a complaint with the ADA office, if you can take the added stress. These conditions and statements are clearly out of step with the law. ~Laura

  • Laura Kolaczkowski
    5 years ago

    Interestingly, ticking that disability box ‘yes’ is now a good thing for my employer, who needs to show they have met their disability hiring quota. It’s still confusing for us, I can only guess at how the newly diagnosed is trying to sort this out. best, Laura

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