Leading a double life with a MS diagnosis

Leading a double life with a MS diagnosis

Living with an MS diagnosis is challenging to say the least. We have to deal with a variety of symptoms, make life changes and slow down the progression of the disease through intense drug therapy. Coming out to friends, family, colleagues and others is also challenging. It can be intimidating, scary and down right stressful (like we MSers need any additional stress…).

For me, coming out to my friends and family was and is easy. I’m lucky. Everyone is very understanding and the best part is no one treats me any differently. This is what I want. Life goes on and so do I; my loved ones know this about me.

Coming out with my diagnosis to my colleagues is an entirely different story. Except for the boss man and one trusted friend, I have not revealed my health status at the office. Why? I do not want to be evaluated based on my health but rather the work that I do. So, I work incognito, like a double agent. During the day I live as a business professional and at night I live as someone with MS. My mission? No one at work must know that I live with MS and I cannot blow my cover. I know, I know. Ridiculous. I believe I have them fooled yet it’s beginning to get exhausting being a secret agent.

First, the discrete phone calls are getting harder and harder to make. You know these calls right? The ones we place to our neurologists, the MRI scheduler, the infusion room, the pharmaceutical support office, the billing office (that MRI costs how much?!), etc. If I place these calls from my desk in the cubicle farm, my colleagues will surely overhear and (gasp!) my cover will be blown. So, like a good agent, when I need to call in I quietly grab my cell and walk around the office, looking for a private place to duck into so I can freely convo about The Secret. Either my office mates think I am a very, very private person or think I’m chatting it up with an employment office looking for a new job. This can only mean one thing: I am a very good agent indeed. I have them fooled.


Sometimes my physical symptoms make it difficult to conduct my spy work and I risk exposing the mission. This can be very difficult to cover up. For example, one afternoon, during a meeting with about ten analysts and statisticians, an episode with double vision came up for me. I told myself, as I began seeing about twenty calculators spin around the conference room, “Just blend in, like any good spy, while they talk about their findings and insights and pray that they do not ask you any direct questions.” And I did. I just sat there, calmly, and listened to everyone, nodding my head once in a while in agreement as I waited for the spinning to stop. “Whew!” It finally did pass, twenty calculators reduced to ten, and I managed not to attract any attention

Alas my cover remains intact.

Sometimes when I am walking around the office with spreadsheets in my arms, I lose my balance, bounce off a couple of cube walls and trip a bit. To cover this up, I start into a slow jog, as if telling my colleagues, “Yeah. I meant to do that. I’m in a hurry because I’ve just been called into the EVP’s office to explain those numbers and I’m feeling a bit frazzled about the whole thing.”

But, is all of this so smart? Am I adding additional, unnecessary stress by playing these spy games? At what point do I just blow my cover, let “them” catch me and relax about who I am? I am a number crunching photographer who loves riding my bicycle really, really fast and just happen to live with MS.

How about you? What has it been like to tell your colleagues, friends and family about your life with MS? Are you out at work with your diagnosis and how did you overcome any obstacles? Or, like me, are you leading a double life?

Best always,

Agent C.

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

View Comments (28)
  • 4 years ago

    i had no problem “coming out,” tho i was a little concerned how my kids would take it. (they did fine.) i only wish that people knew a little more what it means to have MS. maybe they’d better understand when i say no to a social invitation, or back out of an event at the last minute. i told my boss back when i used to work just so she, and the rest of my co-workers, didn’t think i was drunk when they saw me stumbling down the hall. the entire company was wonderfully supportive and accommodating. i even got a cake when i “retired.”

  • vikingkitty
    5 years ago

    Agent C,

    This is agent VK – It is uncanny how close my story is to yours. My boss and trusted friends (have two in very large “cubeworld”) are the only ones who know. When I lose my balance I joke and say that I have vodka in my coffee cup 😉 – same sneaking around with my cell to make my calls to all the other important ‘agents’ keeping my MS in line. You basically wrote my own story.

    I would love to just jump up on my desk one day and shout “Ok, yeah, I have MS! and be done with it 😉

  • ThisBSMS
    5 years ago

    Yes, I can proudly say I am a double agent! 🙂 I really don’t have much choice though. I am not revealing, bc I don’t think the management will be understanding or accommodating. In fact I am sure they won’t be! So for now, double life!

  • Christie Germans author
    5 years ago

    My fellow agents (ThisBSMS and Agent VK): it is not easy to manage the “secret” yet, like both of you, I continue to live a double life, as Agent C.

  • tesoroms
    5 years ago

    Everyone has expressed the challenges of MS and employment. I would like to add another experience that was not so positive.

    My initial strategy for dealing with MS was DENIAL. I travelled that famous river for 20 years as a way to survive a long custody battle, earn a decent living as a single mother and to prove my worth in my career. It worked for a while. It got me through a second marriage and the devastation of losing my health care plan and my job.

    I lost my health care plan because of how the high cost of the betaseron affected the increase in company premiums. That was a real slap in the face. I thought that being discreet about my MS would be respected by the health care plan that my employer offered. However, when the president of the company was told that the health care premiums would increase substantially because of the big medical expenses of one of his employees, he asked around and found out through one of my staff that she thought it might be me because I had innocently mentioned that I had MS.

    I thought that I could finally start “coming out of the closet”. I was so proud of myself that I was doing so well in my long business and academic career in spite of my MS. I finally thought that I could start trusting people to accept my MS. At that time the MS was pretty invisible and I was optimistic about my ability to continue working even though I struggled privately with the MS.

    I was doing well at work and there was no question about my ability to keep up with the demands of my job. The president of the company told me that because of my excessive medical expenses that now everyone would have to bear the financial brunt of the increased premiums to cover my expensive medical needs. He was trying to make me feel guilty that others would be resentful of me because of the increase in their premiums. I was given the option to stay on the plan as long as I paid the overall increase in premiums from my salary!

    Eventually I reported this incident to the government employment and labour standards branch in Alberta. I inquired about my rights and the government department wanted me to pursue this but warned me that I would probably be suspended from my job while this was investigated. I was devastated and couldn’t risk losing my job until I was ready to leave. So, I told the president of the company that I worked for that I was investigating my employee rights with the employment and labour standards branch. I was hoping that he would back down. However, he found another tactic to get me out. He made demands on my time and work load that were unreasonable, he tried to find fault in any project that I was leading and he restructured the company so that I was demoted and could not get a salary increase that he had promised in writing before he found out about my health issue.

    I was forced out of the job that I loved because the pressure to leave was so pervasive that I was feeling the effects on my health. What an irony. The job that I was so proud of handling in spite of my MS was the very thing that caused my MS to get worse. The job that I had been hired for was to start a private vocational school and develop it through all the licensing with government, marketing and growing the business. It was demanding and took up all of my energy but I was successful and it is flourishing today as a result of my work.

    Eventually I did leave to start my own private school where I was accountable to no one but myself and my team. I didn’t have to justify my work schedule or my choice of projects to anyone but myself. I found a government health care plan that cost me a little more that the former company plan but it still saved me the exorbitant $2,000 per month cost of my MS betaseron drugs.
    I earn about the same salary as I earned before and have been able to slow down and reduce my stress level by being self employed. I know that this not possible for everyone with MS but this is my experience. I hope that some MS suffers will be able to relate to my experience and perhaps benefit from by hearing about my struggle with employment and employee rights as an MS suffer.

    Are there any other people who have encountered this kind of discrimination at work because of MS? How did you deal with it and what were your strategies and stories ?

  • julie brush
    5 years ago

    just read your entire post. BEEN THERE! however,I refused to quit…they went so far as to tampering my md’s notes request for my yearly acccomodations. I am not making this up! My doc called the president of the company,he tried to say it was a fax ink error,she had him fax her the letter 3 times,and she faxed it back to him 3 x’s.no error! She wanted to go to the media,she had to get an attorney. It was nuts. And I must add,they have wanted me out for over 2 years,and the tactics they used,were fascinatingly bizarre! YOU ARE NOT ALONE.

  • julie brush
    5 years ago

    YES! OH YES! and I will never be able to wrap my brain around it! I was a nurse at the same homecare company for 11 years. Was dx’d in ’09. Had been at the job 9 years at that point. Just got forced out of my job,that I fought so long to keep,at 30 hours,for so long. I did not even finish reading your post I was so floored someone else was in my shoes. The course of my entire life has changed. Not d/t ms at this point,but d/t my job loss. I was a financial burden. I never got patient complaints. We must talk. This is something horrible I hope no one has to go through. It’s one thing when your md’s tell you that You cant work anylonger,but when your employer tells,and they do not follow the ada guidelines! I do not know if I can pout my email address on here,but Im going to anyway..brushj1@comcast.net. We must talk!

  • k8kix80
    5 years ago

    This post really resonated with me. I have a similar story that I have written on my Walk MS fundraising page… about coming out, dirty little secret, being hesitant to share, etc. I only wish I was as good of a writer as you!! It is exactly as you describe and totally feels like a double life!

    I, too, had a couple trusted work friends that I confided in. Aside from that, I was basically forced to ‘come out’ when I had a significant relapse in 2010. Even at that point, it was kept rather hush hush… per my request. After that relapse I definitely had a slower recovery. My boss at the time was very supportive. Shortly thereafter I can remember standing at one of my employee’s desks having a major episode of vertigo and nearly falling over. It was somewhat a relief to be able to just blurt out I was having an MS moment. Nonetheless, it was always in the back of my mind that people were judging me and thinking about me and my work differently. And in a position of leadership, almost as if I lost/would lose respect. I’m not sure why, but that is a nagging feeling I have.

    I think a lot of my apprehension may have to do with a doc I had at the time of Dx (I’ve since switched) who was all too eager to give me these stats about lower quality of life, higher divorce rates, challenges with insurance coverage, difficulty getting a job, etc. etc. etc. that planted some of this in my head. Yes those things are realities, but it really put some fear in me and like a poster put below, my ultimate goal became that no one could know I had MS.

    I’ve since moved to a new department where I’m fairly certain people don’t know. Tomorrow I am going to my doc to get checked as I feel like I may be having an exacerbation. So this topic of ‘coming out’ happens to be top of mind for me at the moment. My current boss happened to have had a prior employee at a different company who was applying for a position with us. He shared ‘confidentially’ (but obviously not!!) that this person had MS and went on to rave about her being in the hospital and still doing work while she was having an attack. It was uncomfortable for me on a couple levels… one, I feel like if my boss knows I have MS he’ll ‘confidentially’ tell other people, and two, there will be an expectation that because this person was able to work through her attack I can and should do the same. It makes me nervous!! I’m not sure how to handle this if I’m going to need to take time off for treatments, rest and such…

    Thanks,
    K

  • Sharon Lakey-Jean
    5 years ago

    Ladies, I believe instead of feeling like I don’t want to ‘tell”, I don’t want to admit that I have had to slow down, now have not been able to work since 2010. That in itself told ppl I was UNABLE….
    YES, I tire easy, this year for the first time, heat has been an issue. I was diagnosed in 2000, try Avonex for a very short time, and in 2010 my awesome neurologist , Kathryn Chenault of North Little Rock, convinced to to try Copaxone. No new lesions since, BUT spasms and never knowing when an MS hug is going to feel like I need it…LOL.
    I am very fortunate enough have friends thru church, and my immediate family that do understand, and I am not treated as though I am Less.
    On July 20,2011, my first born Matt, at 28 years old was killed by one of his closest friends that was very impaired from drugs in a head-on collision.
    Talk about STRESS….after a month or so of constant grief attacks, my primary care dr put me on antidepressants. Figuring out which ones would work for me was a challenge, for for several months Cymbalta/Wellbutrin combined has helped. Recently I have had extreme leg spasms that wake me and the worst pain from MS/fibromyalgia combined. Just yesterday my Cymbalta was doubled and I can truthfully say I was not waken by any spams all night. Well, 6 hrs of sleep is alot for me. I do have to rest during the day, several times, but not napping. I also have severe sleep apnea, so napping means getting the c-pap / nasal cavity etc prepared, so a nap is not worth all the effort.
    I lean on God, family and friends, as an awesome support group.
    This is a crazy disease, and having facial pain, a spasm who knows where from next time, or the MS hugs, is difficult, along with the drop foot, ppl think you are intoxicated.
    I take it, this is a small thing to deal with, compared to others, with incurable fatal diseases. My first support group, a young lady said,,,’ I HAVE MS, MS DOES NOT HAVE ME. It is hard when it is at its hardest, but there is a reason. Thanks for letting me VENT

  • julie brush
    5 years ago

    Sharon….oh boy. To say I am sorry for the loss of your son,is so cliché. vent away sister. wow! and,to quote the cliché,i am sorry for your loss. I hate cliché statements. But I don’t know what else to say. My cousin,my aunt and uncles only child,was murdered in 2007 and the started at the end of October,and ended in a mistrial. that stressed me out,and Im not a mother nor the mother. so,I cannot imagine. I cant. I just cant. And ya know what,the symptoms you,or I or others have,are not small things. I used to think,as bizarre as this sounds,after finally getting a diagnoses,I wasn’t worthy of the diagnoses. does that make sense? I thought to myself”You don’t have ms,its all in your head,your lazy,worthless and now you think you have an excuse to be lazy,buck up Julie” I still think like that sometimes. vent all you want. you deserve it.

  • north-star
    5 years ago

    This was a tough summer for anyone who has MS. When you can’t cool down for a significant period of time every day/night MS does have you, regardless of your determination.

    And when the world crashes down on you as yours has, MS will complicate daily life with crazy pains and intrusive symptoms. Have you thought about massage? Your neuro might be able to prescribe them if you have insurance. At a couple of times in my life with MS, massage by a physical therapist helped a lot. The PT gently stretched out muscles that were constantly cramped and painful. It’s a small thing that made a big difference physically and, surprising to me, emotionally as well. During one massage I started crying and all of a sudden I could feel how much tension I was under. The PT said tears aren’t that unusual and I realized I needed to give myself permission to be a wimp once in awhile.

    It’s good you have a doctor you like and support you can count on, Sharon. Anyone would find your life tremendously challenging right now. Keep venting!

  • jfalasco
    5 years ago

    I started a new job right after my DX (2.14.13). A few friends from the old job knew but new job environment is not so friendly. No one can detect my symptoms but I’m am always thinking about the future and possible relapse. I just don’t know what to expect. My lesions continue to grow in number so I’m guessing the meds will have to change. Hopefully the transition goes well. Trying to take each day as it comes. It is helpful to read the comments on this site.

  • 5 years ago

    Hi everyone I told my employer that I had MS and they do not care. I do not know how to deal this. Any advice would be welcome thanks

  • julie brush
    5 years ago

    Sally. I have been in your shoes. I think we need this thread or a different thread to talk about how we are treated in the workplace. I know there are possibly some good employers out there,possibly. But what happened at my job of 11 years,changed me as much as the diagnoses of ms changed me.

  • toshalee
    5 years ago

    For a long time, I felt the need to hide my “other life” from my co-workers for the same reason. I didn’t want to be looked at through an MS lens as if it was a disability. I’m 29, was diagnosed at 22 and have a whole life and career ahead of me. I first thought that I wouldn’t say anything until my symptoms got bad enough that people could notice. But then one day, a co-worker asked me why I raise money for the MS Society (because I had mentioned Walk MS) and I just spilled the beans. And it felt like a huge weight had been lifted off my shoulders. Since I am so young, I get the puppy dog look very often when I tell people. But I didn’t get that look. Instead, he responded “wow, I never would have guessed. you manage it well”.

    I don’t actively just tell people, but if it comes up in conversation or if they overhear something on the phone and they ask, I’ll talk about it. But I don’t hide it. Because it is who I am. And I can’t help it. It’s all about your attitude and how you relay the message. I joke about it sometimes too and that helps, similar to what you do when you lose your balance. I think people such as myself, with mild cases, can shed a different light on MS. MS does not equal wheel chair. MS comes in all shapes and sizes. And maybe I can give hope to others, that MS is a manageable disease and life does go on.

    I definitely think it’s necessary to let your immediate manager or HR contact know so it’s on your file, in case you have a bad day or relapse and miss more days than usual. Full disclosure will help you.

    Thanks for sharing your story! I think we all can relate, you are not alone! Wait for it to come up in conversation with a co-worker and see what happens. I think it even helps with the mental healing process. 🙂 Good Luck!

  • Susan
    5 years ago

    I am an attorney and partner at a large law firm in the southeast. Attorneys tend to eat their weak so I have not disclosed my condition. When people ask about my limp, I just say “oh, nerve damage that occured when I had my 10 lb baby” and no more questions. I went a few months after diagnosis when I could barely make it from the parking garage to my office and thought my gig might be up but through the miracle of Tysabri, I am back to relatively good walking and easy to hide the MS. That, of course, may change but for right now, all is well. Also, I have only let a few very close friends and my husband know — not my daughters (13 and 6), not my parents and certainly not my husband’s parents (when I was engaged, my M-I-L and I were discussing his aunt who had MS. When I asked if she ever married, my MIL said “yes, but they divorced when her MS was found because it wouldn’t be right to require him to be married to her” and that she would expect the same of anyone married to her son. — In the end, I found out that they didn’t divorce because of her MS but rather she was just mean. And, when I called my husband sobbing about my diagnosis and relayed this story, he told me that there might be other reasons he might divorce me, but this is not one of them). So, back to the actual question — MS is a secret and will be for as long as it can be.

  • Lauren
    5 years ago

    also, the “double life” caught my attention. I feel like because nobody can “see” my disease I struggle with it in my mind all the time. and I want to hide it from everyone but it’s always there. I’m definitely double sided.

  • Lauren
    5 years ago

    Hi Christie,
    Thanks for bringing this up, I can relate but I’m not even in the workplace. I’m a stay at home mom and I feel it’s my goal to not let anyone know I have MS. I like that nobody can tell right now, and when meeting new people I SURE DO NOT bring it up… I can’t BELIEVE the stories people are telling about being fired for their disability!! That’s total crap, makes me mad and it’s not even me. I’m about to the stage where I’ll be going to look for a job soon (kids are growing up) and you bet your behind I will be faking it as long as possible… it’s nobody’s business and I want to keep it that way. I don’t know what will happen when/if my symptoms start showing on the outside…
    Thanks,
    Lauren

  • Amy B Mel
    5 years ago

    Christie,
    Thank you for sharing your journey and your humor.

    I was diagnosed 8 years ago and I kept my secret from my clients. I worked as a Massage Therapist for 14 years and it was certainly not an environment where sharing your chronic illness was appropriate!! When it became clear that I had to close my practice, I had to tell them why.

    I know it was wise not to share my health issues (no one would want to come to me to feel bad, defeats the purpose!), until necessary. I also feel very lucky that I had the time to get comfortable with my body changes and keep doing what I loved, knowing that some day I would have to say enough is enough.

    Now it feels freeing that I can be open about who I am. Unlike you I had to stop riding my bike years ago so now I can let people know it’s not because I got lazy!!! Though it’s been sad to end my practice, I can feel very proud that I did it for 14 years, I can be more open with people in all aspects of my life, and I can use my energy doing things that I want to do.

    Amy

  • Nobu
    5 years ago

    I am in the process of looking for a new job, and just got my resume passed on to what might be a capstone type of job for me being in my late 50’s. The catch is that it may be too much for me, but I just don’t know. I don’t think I should pass up the option to find out more though. Might write my letter of interest and in closing saying that I have MS and see what happens. It might be that they will have something else in the project that is less rigorous that I can do and still be a contributor. Once I interview, the cat is out of the bag anyway because I walk slowly with orange forearm crutches.

  • ToBeOrNot
    5 years ago

    I would not mention the MS. The use of crutches could be due to many factors. Let them just assume that it was an auto accident. Get the job and the disability insurance that goes with it. Then if you can’t handle the workload, file for disability.

  • ToBeOrNot
    5 years ago

    You just described my work life with amazing accuracy… the extra attention to walking when I first stand up, keeping a hand on the rail while on the stairs, etc. Only the HR director knew of my MS, and she understood the legal requirements regarding privacy. About 9 months ago, during my annual performance review, my boss told me that I was their rock star and that I had a great future with the company. He then proceeded to point out the other middle managers and concluded by saying that one of my colleagues would never be promoted because of his health problems (which occurred 10 years ago). Oh dagger through my heart! That one comment was a crushing blow.

    Fast forward. On a Friday awhile back, I explained to my boss that his comment had really hurt my morale and I explained why (that I have MS). I was fired on the following Monday. Nice, huh?

  • julie brush
    5 years ago

    This is infuriating!!!!!! And good for you for sticking up for a fellow worker! That is integrity. Unreal. unreal! What was their reason for firing you?

  • Laura Kolaczkowski
    5 years ago

    Fortunately my work situation allowed me to come out to everyone immediately, without much concern. I’m sorry you are in the position of covering your MS, but also that you are now considering the big reveal.

    My staggering is now easy to explain because I definitely can’t hide under the cover of hurrying, because hurry is out of my vocabularly. It’s much easier not having to be undercover, but I could sure use one of those secret agent decoder rings, though, to decipher MS.

    Laura

  • Joybo
    5 years ago

    Been there, done that, “Agent C!” Exhausting and THEN some.
    The ICING ON THE CAKE for me was when (after quietly coming out to my employer and using all correct and necessary forms– FMLA, doctor note, etc– THEY REFUSED MY REQUEST FOR REASONABLE ACCOMMODATIONS. (First they SAT on the request for a year; it’s documented.)
    Following the denial, it was just months until I was fired for some random made up reason.
    Such is life.
    Double life is over. Real life is MUCH less lucrative but at least I don’t spend each day ANGRY WITH FLAMES SHOOTING OUT OF MY HEAD. I loved that job; miss it still.
    Stuff happens.
    (I would have taken them to court if “they” weren’t a large, non-profit (my a$$) corporation with legal power out the wazoo… and they knew it.
    No more colleagues, no more secrets, must make peace with ones’ self!
    I hope your “cover” remains intact as long as it suits you and I hope you are treated fairly and legally if/when you come out or cover blown.
    Nobody ever promised us a rose garden that’s for durn sure!
    All the best at work and play!

    Joy (AKA FORMER lier, sneak, storyteller, excuse-fabricator)

  • Christie Germans author
    5 years ago

    Hey Joy, thanks so much for stopping by to leave your comments. It’s great to hear from you. So sorry to hear about all of the troubles with your employer, hardly seems fair. Sounds like having your ‘cover blown’ has brought some peace in your life; glad to hear it. Hope you’re well. Christie

  • Kim Dolce moderator
    5 years ago

    Christie,

    I’m so glad you addressed dealing with the “dirty little secret” in our work lives. I did the same things you discussed when I was still working, and it was indeed like living a double life as a secret agent–and for me, it added stress, I’m normally such an open person.

    The reveal is risky; despite the ADA, we are not protected from losing our jobs because we are at-will employees, and all the employer has to do to legally dismiss us is to claim we cannot fulfill the requirements of the job.

    I hope you can continue to work for a long time to come.

    Kim

  • Christie Germans author
    5 years ago

    Thanks Kim, great to hear from you. Yes, the reveal is tricky and it can be difficult to decide who to tell and when. Thanks for the good wishes as I continue to work and I hope you are well.

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