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Survey Reveals Women with MS Try to Hide Symptoms at Work

Hiding MS symptoms at work?

Recent research revealed an interesting point about women with MS (multiple sclerosis) in the US workplace. The national survey found that women with MS had at least once tried to hide their MS symptoms at work. MS is a progressive illness that affects the brain and spinal cord (that comprise the central nervous system).

The survey’s results were put into the Women and MS: The Working Mother Report. The research was done to find out more about the challenges faced by women with multiple sclerosis who have careers and are caring for their families. There were 1,248 working women surveyed; the median age was 40, and they all had an MS diagnosis. The Working Mother Research Institute conducted the research, and the study is sponsored by Novartis Pharmaceuticals Corporation and the National Multiple Sclerosis Society.

One of the conclusions was that 60 percent of the surveyed women indicated they tried to hide their MS symptoms during their workday. At first, when I read that result, I thought, well they’re perhaps not wanting to worry other people about their disease or cause any disruption in an office routine. Then I read in the report that 59 percent of surveyed females said they were comfortable talking about their MS with supervisors and 61 percent noted they felt at ease discussing the same subject with their coworkers.

So, then, that leads to this conclusion: Women are comfortable talking about their MS at work but not so at ease showing the symptoms of the disease. Common symptoms experienced by people with multiple sclerosis are feeling tired, numbness, issues with mobility, pain, vision issues, tingling, and memory lapses. Of the surveyed women, eight out of ten of them said they currently or had recently (within the last three months) shown symptoms of MS.

Again, though, I wondered why women hide MS. Then it hit me. It is part of a category of “invisible” illnesses. Depression is another disease that has invisible aspects or reveals itself at least partially in ways we do not see visually. Look at the symptoms listed above. Aha, yes, memory lapses are not something we reach out and touch; that is a hidden symptom. Fatigue and pain are invisible too. Of course, the severity of the symptoms differs from woman to woman just as they do to all people affected by the illness.

Again, you ask, but why hide their symptoms, such as cognitive issues? Perhaps because not everyone may understand that a symptom you cannot see or touch does, yes, actually exist. For example, multiple sclerosis sufferers may fear their co-workers think they are making it up or don’t really have anything wrong with them. Therefore, the working women with MS hide their symptoms to avoid being doubted for having their diagnosed disease.

As well, it is one thing to describe an illness generally to someone such as a co-worker or boss but quite another thing to explain you are then, right then in that moment, experiencing pain or one of the other symptoms. The former me, several years ago, would have hidden a cold for fear of making a scene in the office or drawing attention from others toward me. I’m not saying that is what all of these MS women are doing but maybe some of them are self-conscious too.

Also, they may fear losing their jobs if it looks like they have symptoms that may prevent them from doing their work effectively. If a woman, for example, says she feels numbness then the supervisor may think, well she may not be able to type much in the near future then and so they will start looking for a replacement employee.

What are your thoughts on this survey and its finding that many women hide their MS symptoms at work?

You can download the full report here: Women and MS: The Working Mother Report

40 thoughts on “Survey Reveals Women with MS Try to Hide Symptoms at Work”

  1. As someone who has MS I agree – I hide it at work. There are only a few people at work that know I have MS but I choose to hide my illness not through worry about my job but because I refuse to let it define who I am. People who fret and brand themselves with it are letting the illness win. I imagine most women (or men) out there choose not to say anything as they are just getting on with their lives and not letting it win.

  2. Hi Christy – when you mentioned ‘invisible illness’ it immediately hit home. I can understand why these women would hide their symptoms because many doctors do not take them serious so why would their boss? I don’t have MS but I do have Addison’s Disease, another ‘invisible illness’ and before I was finally diagnosed, I was told, by specialists, that I was everything from crazy to lazy, maybe not in those exact terms but close enough. If these women are getting the same kind of ‘diagnosis’ from doctors why would they want to share this with anyone. It’s embarrassing to hear that, let alone share it.

    1. Christy Birmingham

      Lenie, that’s awful you were made to feel like that by the specialists. Perhaps there needs to be retraining done in certain medical arenas in regards to invisible illnesses!

    2. Christy, you are right that specialists especially need to listen more and act less superior. Fortunately I had the best family doctor and he just kept saying, “Well, we know that’s not right” and he never gave up until we got the final answer.

  3. This report does not surprise me Christy.. MS you can not see the symptoms, and from experience of being a Fibromyalgia sufferer in the past who took 5 yrs to get diagnosed people just do not want to believe in illnesses which are harder to detect..

    When I had to change my career path because of it, I was reluctant to put my illness down on the application form of my next job… In case it went against me.. However luckily for me at the interview I had, I felt comfortable enough to disclose my illness..
    It did then lead to me being seen by a clinical Dr of the Company to see if I was fit enough to work for them.. Thankfully too he was also very understanding and once I told him the job I was doing and trying to keep in the workforce by altering direction, He was happy to tick all the right boxes..

    Great article Christy,
    Love and Hugs xx

    1. Christy Birmingham

      Sue, I am so thankful you had that doctor to support you! It is sad that we are scared sometimes to disclose personal attributes that may hinder us in the workplace; I don’t like living in fear and once it starts then it can snowball. Thanks for having the strength to continue to be true to your spirit. I admire you so much! Hugs, many hugs.

  4. Interesting read – thanks. I don’t have MS, but it touches my family and I’ve had co-workers with medical issues so my thought is this probably goes to trying to demonstrate that having the illness doesn’t impact performance or fear that you will be judged as somehow less able than others to do the job (ie: job at all, or for promotion considerations etc…) if you flag symptoms and need for accommodation as a result. I think it’s fair to say I do this just as a mom “ie: yes I need to leave the office to pick them up, but I can finish that at home once they are in bed – see! I’m just as good as someone who doesn’t need that accommodation! – I can’t imagine compounding that feeling with then also having an illness. It takes a readjustment in how we think, but as the person impacted and as the employer and co-workers.

    1. Christy Birmingham

      Hi Louise, that’s a good point that aside from fear of job loss there’s also worries about hinderance of job promotion. As for accommodation, I have a feeling it is something many of us have gotten good at, so you’re not alone there. Your contribution here is appreciated!

  5. teagan geneviene

    I think most women try to hide anything that’s “wrong” with them at work… not just to keep the job, but to keep respect too. How wrong is it that it’s like that! :/
    Another great post, Christy. Hugs. :)

    1. Christy Birmingham

      It’s like we don’t want to be out of place,, I get what you mean, Teagan. Thanks for adding to the conversation with your insight here. Hugs!

    1. Christy Birmingham

      And it doesn’t help that the job situation is bleak in so many parts of Canada right now. I’m sorry to hear that your friend is in that difficult situation, Resa.

  6. This is a great post Christy. Thank you for bringing a little bit more understanding to this “invisible” illness. You have great Commenters as well. For me the more information one has the more one understands.

    1. Christy Birmingham

      Yes, more information is good! It helps keep misconceptions at bay. Thank you Melissa!

    1. Christy Birmingham

      ((Hugs)) Shehanne. I am passionate about women’s rights and learning more about the world in so many ways. If I can help at all then I want to. Thanks for joining in here and for your support. xx

  7. I agree with the fear of job loss…even with ADA regulations…there are still ways to release someone…complaining of symptoms plants a seed doubt in the minds of co-workers and supervisors about the woman’s ability to perform her job. Also…even though she discusses the disease and potential symptoms…that is impersonal…not the same as telling what’s going on in her life. The symptoms can be frightening…and talking about them makes them real…she may be frightened about her ability to continue to work and what her future looks like…if you don’t talk about it…it won’t happen. And…then there are many of us who just don’t want to complain…going back to work after brain surgery was the hardest thing I’ve ever done…but most of my co-workers thought I was just doing fine and never knew the pain and fatigue I experienced.

    Thanks for the great post, Christy!

    1. Christy Birmingham

      Hi Jane, thanks for sharing your own experiences after your surgery. I am so glad you are coaching women now and admire you very much!

  8. Also, I think people with illness or medical condition don’t want to be judged by others at work on basis of their illness or condition and don’t want to be pitied either – I find that the latter is particularly relevant as there are many who feel better about themselves if they have somebody around them they can express pity towards – oh, life can be so complicated when it shouldn’t be

    1. Christy Birmingham

      Good point about wanting to avoid pity, Ina. As for life being complicated, it does seem to be in some ways but not in others…!

  9. I get this entirely. Given my injuries cause disruption, including some similar symptoms to MS I understand fully why someone would hide the symptoms, I hide mine all the time. Your conclusions are dead on.

    1. Christy Birmingham

      I appreciate your confirmation, Val, but it is sad… I hope you have at least a bit of rest this weekend.

  10. Fear of the unknown, fear of labeling, fear of not living up to their own expectations. One of my co-workers, at least a decade younger than me, was diagnosed with MS about five years ago, and I remember how she talked bravely and plainly about it right from the onset to all of us in the department,
    Christy, but it was still an extremely elusive diagnosis. Good post here in MS awareness month.

  11. Thank you, Christy, for bringing to light the difficulties of living with an “invisible” condition. I hope that as awareness increases, people with MS and other conditions will not have to bear the added stress of concealing their symptoms.

  12. MS can be very insidious, and a childhood friend of mine began having symptoms when she was only 30. She began having unexpected falls. Symptoms vary with each person, some may have unexpected isolated tremors in a hand or in a leg, weakness is very common. Men can get it also, but not as frequently, and if they get it they do so in their 50’s. It’s usually depression and fatigue what can ultimately make a woman either hide her symptoms or simply stop working. Multiple sclerosis is the most common autoimmune disorder affecting the central nervous system with a wide range of signs and symptoms, including physical, mental, and sometimes psychiatric problems. There are also remissions and relapses. What I have observed the most with this condition is extreme fatigue.

    1. “The results of the survey are probably linked to an eventual layoff or displacement I think…” No, not at all. There are strict laws for reasonable accommodation for people suffering this illness under the Rehabilitation Act of 1973, Section 504. These people are guaranteed employment by law. As I said before, it’s usually depression and fatigue what can ultimately make a woman either hide her symptoms or simply stop working

    2. Christy Birmingham

      Hi Maria, thank you for sharing your knowledge here of MS as it expands the information being shared. Yes, it affects more women than men. I highlighted women in the blog post because, firstly, the survey is only of women, and, secondly, this blog is about women. I appreciate the addition of your details on the symptoms and more.

  13. Hello Christy,
    Thank you so much for this important information. As a woman, I can empathise why so many women hide symptoms of illness outside the home. We often have to deal with negative preconceptions in the professional world (even when healthy), and don’t want to add to it. As you say, fear of losing jobs… :( I don’t know anyone with MS that I’m aware of, I can’t imagine what it must feel like :( Again, thanks for sharing.
    Best wishes,

    1. Christy Birmingham

      Takami, how nice to see you here. I appreciate your reflections on the difficult subject. You are right that women may be judged in the workplace and so that would be a contributing factor. I am glad to be able to share what I learn in the hope of helping raise awareness. Take care!

  14. I agree with you, Christy, that they want to hide their MS symptoms because they want to keep their jobs. I have an extended relative who suffers from this and is already retired. It truly is an isolating illness, just like illness can be – especially the silent, ‘invisible’ ones. Pain in general is like that. I suffered an incredible debilitating injury that I was fortunate to make a nearly full recovery from. Pain is unseen. You can only explain why you are laying on the floor and not sitting in a chair like a “regular, healthy” person. Why you can’t stand around to talk… etc. etc. That even gets tiring. Great article, keep bringing awareness!

    1. Christy Birmingham

      Thank you for adding these details here, my friend, especially about the isolation that comes with this illness. With the ‘invisible’ conditions, what we don’t see DO hurt her, affecting her identity and more. Of course it affects men too but I focused on women as that was the study focus and because it is the theme for the blog. HUGS and I appreciate you being here xo

  15. Interesting post…. I’d say that this illness, as many others, might produce stigmatization and segregation… The results of the survey are probably linked to an eventual layoff or displacement I think…
    Such a coincidence, (a more mundane thing) I just watched yesterday an episode of a show called Cake Boss and Buddy’s mom has MS too… I cried!… It was very touching and sad
    It might be hard to deal with the symptoms as they produce a sort progressive paralysis of the body… Almost always starting with hands and feet…
    Thanks for your commitment, dear CB… Best wishes, xo. Aquileana :D

    1. Christy Birmingham

      Thank you Aquileana (first commenter!), very perceptive of you here to note the progression of the illness and how that would be not only difficult to experience yourself but to watch someone you care about (like Buddy’s mom) face. Hugs xo

    2. Indeed. Very well stated CB… By the way, that episode was so sad, but on the other hand, It was all about Easter Times, so the message was uplifting!… Thanks for this great post~ Love Aquileana :D

    3. Christy Birmingham

      I’m glad it had a positive spin on it. I have not watched that show for a while. Truly thank you for being here, BF :) xo

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