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Occupational Hazards

2 September 2015

As a wife, a mother and an employee, I wear many hats. For the most part, I love the multi-faceted nature of my life and very much enjoy my job(s). I work nearly full-time now at the local university, I have a wonderful husband and three charming and challenging children and I’m totally digging this blogging gig. (Needless to say, free time is not a commodity of abundance in our household.) I’m in remission. Life is good. Well…. more accurately, life is mostly good, most of the time. Rather than my previously reliable straight-A good health and energy levels, life post-diagnosis has become much more roller-coastery and unpredictable.  And therein lies the million dollar question - how to deal with the constant high level of demands of life, including the expectations from a paid employer, within the context of a highly variable and volatile disease manifestation? In this post, I will outline a number “occupational hazards” I have encountered post-diagnosis.

Firstly, there’s how to manage the cloud of uncertainty over if/when a relapse might strike and its impact on employment. As with Sam, I have a lot of “What Ifs” running through my head.

  1. What if my boss/colleagues find out I have MS?
  2. What if they don’t find out I have MS and just think I’m lazy, drunk or plain weird?
  3. What if I need to take a long period of time off work? What if I need to reduce my hours?

You get the picture here, folks. As if MS doesn’t cause enough angst regarding the notion of disease progression, it somehow finds a way to infiltrate my head (pun intended) and stamp its mark in an area where I’d much rather maintain the illusion of perfect health.     

Leading on from this, the next big issue to tackle is that of whether to disclose MS (or for that matter any chronic medical condition) to your employers and/or colleagues. For some, the condition is clearly apparent so there is no decision to make, but for many of us, the invisibility of the disease presents a dilemma. Is a frank disclosure of the condition going to help or hinder workplace relations? More troublingly, does the revelation of a chronic disease have the potential to affect future promotion? These are all questions that have plagued me for many many months. Once revealed, there is no going back, and since I am, at this point, less affected than even The Unaffected One, I have so far opted for non-disclosure.

Tired

Another matter that warrants discussion is how to manage fatigue.  For me this is a moving target. Every day it feels a bit I get to play the hand I’ve been dealt.  As with The Unaffected One, it’s the afternoons that are high-risk time periods, and like her, I also employ her tactic of outright denial. I feel if I radiate the right combination of vitality and liveliness, then maybe this will sustain me until home time. I very much enjoy the mental stimulation and social interactions offered by paid employment but I have to be mindful that I need to keep a certain amount in reserve because I’m simply not that well-positioned to come home and collapse. Even once the nightly routine of dinner, bath, books has been completed thrice over, there are still bags to pack, lunches to make, dishes to do and, if time permits… a modicum of precious Mummy-time. So I have been very careful with regards to gradually ramping up my hours of work. What seems perfectly acceptable and manageable during the highs becomes increasingly overwhelming during the lows.

Finally, I’ve had to figure out ways to lower the bar. The tuckshop helpers are my new best friends (pineapple on pizza counts as a fruit, right?). The rectangular device in the corner of the living room does a more than decent job as an evening mood-enhancer for the munchkins. And no I longer cringe when all the other mummies seemed to emanate a combination of career success and domestic bliss while I have that sinking feeling I’ve forgotten to put on make-up. Again.

What about you, my readers? How have you adapted post-diagnosis to make work manageable, especially when you lust after the mere notion of adopting a horizontal position?

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Comments (21)

I got a job with the CBA. I had an appointment with my neurologist & they said I couldn't have the day off for the appointment. I was having new symptoms so I wanted to see him ASAP. I advised my TL to at least get some sympathy & on my return to work they sacked me even though I had a doctors certificate. Will never divulge any medical issues now.

So sorry to hear that. I have to admit being sacked wasn't even on my radar - I was more worried about lack of promotion. Surely there are discrimination laws?

There is definitely a case of unfair dismissal here, I would have pursued it further. And such a big corporation also, Slater & Gordon would love such a case I'm sure.

I've encountered both ends of the spectrum. The job i had at the time if my first relapse promptly fired my ass...nice bunch! But my current job (3 years in) have been so supportive and accomodating. They understand now when i'm slurry, so we rearrange phone conferences to suit and on my fatiguey days, i work from home with a late start or regular rests. I told them quite early on of my condition as the stress of my 'secret' was too much to bare and i needed their help to make our relationship work on both sides (plus i'm an 'open book' kinda gal. I hope u find a method that works for you!! (ps sorry bout the 4:30 am solumedrol rabble)

Eeshk! This is the second firing story mentioned in the comments. I'm relieved to know it had a good ending, and that your current colleagues are very supportive and flexible. I agree keeping silent is a bit stressful and feels secretive and almost deceptive. I think I will eventually be open to disclosure, at least once I feel more established in my role.

I had no choice as I had a major relapse at a work conference , at which time I was diagnosed. I work in a quite demanding role full time plus and am a single parent. I have had nothing but support from work. I get quite tired by the end of the week and they are very understanding of this.

I'm glad things worked out given you had no choice! Also that you are a single parent. I can only imagine how tired you are at the end of each day as it sounds like you also have multiple responsibilities. My heart goes out to you.

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I generally choose not to disclose, but recently had to on account of a relapse requiring me to take a week off work. I only disclosed to my senior manager who was incredibly supportive and understanding of my desire for discretion within the company, which was a huge relief. However, I agree, you can't help but fear the 'what ifs'. What if I need more than a week off work next time, what if my eyesight doesn't return to 100% and it affects my graphic design skills - would my manager be so understanding then? There are always those thoughts in the back of my mind.

I like your 'need to know' approach. Sometimes telling just one person makes a difference, doesn't it! After all, it's your supervisor who will be most closely judging your performance (and potentially sick leave). Thanks for sharing your experience.

I have been lucky enough to have an amazingly supportive workplace. I had my first relapse just after returning to work from maternity leave. I was able to reduce my hours and build up back up to normal hours when I was ready. I feel very blessed to not have had any extra stress or pressure. I love my workplace and if I'm having a tipsy day, everyone gets it!

Sounds like disclosure a completely positive experience! I often wonder what people might think of me on my off days and just keep on bluffing! So glad that you have been shown such support.

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I disclosed 2 years ago to my boss and close colleagues, due to the massive stressful workload I seemed to continually have in comparison to my same position colleagues. Also I decided along with this work stress the stress from keeping this to myself for 9 months (since diagnosis) couldn't be good for you. Besides I have always thought how riddiculous it is to keep this disease in the closet, for so many other diseases that are ok and acceptable to discuss out in the open. As more of us that come out, only then will the fear and stigma hopefully disappear in employers eyes. The decision to tell was supported & received well by my boss and colleagues, my workload has been somewhat more proportioned with my colleagues. I now don't have to sneak off to appointments, etc...This in turn reduces my stress levels. And if things were to ever not be okay and I am dismissed because of this disease well I know I have rights.

It seems a recurring theme that keeping MS 'secret' is stressful for many. I agree it is a a great opportunity to raise awareness of the condition. Thanks for sharing your thoughts!

I've been lucky. During my initial onset/diagnosis I was open with my employer (telling the CEO I needed to go to hospital on my first day at work didn't leave me with much choise). They were great and generous with allowing the flexibility needed during an extended recovery. I've since moved to more senior roles within a much larger organisation. I now opt for selected 'partial' disclosure. I've advised my boss that I have 'auto-immune issues' when he specifically asked following my bi-annual request to visit a specialist. He's been polite enough to not to ask detail but I'd be happy to tell him if he did. I've also shared with staff who've disclosed simiar medical issues to me, which has been cathartic me and reassuring for them. Afternoom fatigue sucks. I generally try not have anything important booked post 3pm. Alternatively, suck down lots of cold water and try convince myself everyone feels this way. ☺

Wow - having to disclose on Day 1 would've been tough! So glad to hear you had such a positive experience. I like the term "auto-immune issues". I also agree that disclosing to those who have faced similar issues and can empathise makes sense. Like you, I try to avoid working late. Cold water - gotta try that one!

My partner had her first major M.S. attack this year (June) after around 18 months of head scratching symptoms and one earlier attack that was misdiagnosed as an ear infection. This was only about 2 months after being made redundant from her previous job and had only been in her new job for about 3 weeks. So she had no choice but to disclose her M.S. Her attack was massive and completely paralyzed her entire right side. She was in hospital for over a week and it has taken months of rehab to get to the point that she can do a gradual return work. She has to use a motorized wheelchair to be able to get the bus to work and needs to use it constantly for fatigue management. She was very determined and all she wanted to do was get back to work. There's no hiding it from employers for her. Once we get Christmas and New Years out of the way I need to begin looking for work but I have to a lesser degree the same dilemma. I need to decide if I should disclose to potential employers that my partner has a condition that could require me to take time off to care of her if it should relapse. Since I'm in my 40's and finding a job is already hard enough for me I'm worried that telling employers this isn't going to make me a prize applicant. But i'll just tell them and hope for the best I guess.

Good luck with the job hunts Jon - both for you and your partner. I hope you get a wonderful Christmas and New Years in first though. I'll keep you in my thoughts... and fingers crossed everything falls into place for you.

I guess I'm in a rather good environment for disclosure compared to most. I'm a nurse in a hospital! It never occurred to me not to disclose. And my colleagues know what it is so I never had to do any explaining. And for all its issues, working for the government has the advantage of needing to provide aids or in my case flexible rostering. Now it may come to where they need to help find a suitable position for me as I've relapsed again following only 7 weeks back at work after the last one. I just take leave without pay. Thankfully my job is one that they have to have the correct number of staff on each day so they fill my shifts with casuals.

Yep - I guess one of the perks for medical professionals is that your colleagues know (in principle at least) what MS is! I'm sure there are both payoffs and pitfalls though, but I'm glad that you do have the option for flexibility. Sorry to hear about your latest relapse - get well soon.