Episode 92: Illness and Secrecy

Show transcript:

Welcome to The Broad Experience, the show about women, the workplace, and success. I’m Ashley Milne-Tyte.

This time, working with an illness…

“We have a stereotype of women as weak, or weaker. So I think that when you have a chronic illness and you’re sitting there thinking, I am weaker than my male colleagues, I do have more trouble with this, I think that part rankles in a way that would be very different than it would be for men.”

And how or whether to let the office know about it…

“Two people at work asked me oh, what happened to your arm? And I lied. I said oh, I just fell and sprained my wrist. And that’s when I really started thinking more about how am I gonna handle this at work? What am I going to say?”

Coming up, we look at our attitudes to health and strength at work.

Mary Ratliff lives in Virginia, just outside Washington DC. She was one of several listeners who wrote to me after the show I did on working with Asperger’s. I asked if you’d be interested to hear more about people working with some kind of health condition.

And part of the reason I wanted to talk to Mary was because of something she said about being in a creative field and having a chronic condition. She’s a documentary filmmaker, but like so many filmmakers that’s not how she earns all of her living. She handles social media for a Washington think tank 15 hours a week, and she does various other gigs. And her condition isn’t the kind of illness where people offer you immediate sympathy or understanding.

We spoke on Skype.

AM-T: “When you wrote to me you said you had a sleep disorder…”

“Yeah, so people with chronic illness are familiar with this – I have a diagnosis that is their best guess. I’ve had so many tests that have come up negative they’ve said OK we think you have idiopathic hypersomnia – which when you boil it down means you have extreme fatigue where we can’t find a primary cause…so I’ve been tested for apnea, narcolepsy, all those things. None of them are what my issue is.”

The first time she went to a doctor for this was when she was 14. She’s now in her mid-thirties. So she’s been dealing with this for years.

“I’ve had good months, bad months, that kind of thing, and like I’ve said I’ve been tested for apnea 3 times actually because I’m also overweight. And being an overweight woman in the American medical system means you have a tendency for doctors to discount what you’re telling them. And they have a tendency to be like, oh you’re just out of shape, you need to exercise, eat less…so I was wading through that for a very long time. But for me it started to come into a conclusion in 2012.”

She was doing post-production on her documentary and making silly mistakes. She was also working on a couple of friends’ films and just knew she was not doing as good a job as she could. Added to the built-up lack of sleep was the stress of bringing in these projects in good shape, on deadline. She says she’s had anxiety issues for some time…

“So the anxiety was at an all-time high. I spent 6 months, almost a year where I’d be awake for 30 to 36 hours and sleep for 14 hours. I was non-functional. I was no good to the rest of the world.”

She had to figure out what was going on. So she started seeking out specialists. She’s been through 3 sleep studies since then, received tons of suggestions – yes, she gave up caffeine years ago. Now she has a doctor she really likes – but no one’s really got to the bottom of what’s causing this - yet. Right now she’s doing better though. She’s on medication to help her stay awake, rather than to help her sleep.

“Once I started taking that and I’m awake for more of the day – you know, I used to get to a point where at 2 o’clock in the afternoon I could not keep my eyes open, and I would fall asleep and if I didn’t set an alarm I’d sleep for 2 or 3 hours in the middle of the afternoon, and that throws off your sleep cycle. Now I’m on this medicine during the day I’m sleeping better at night.”

AM-T: “You spoke to me specifically when you approached me about this, about your life as a creative, and you said there’s a lot of advice and rules for creative careers that can be hurtful or difficult when you have a chronic illness. What did you mean by that?”

“The one I think of first whenever people bring this up, is when you do anything to do with writing people say write every day…and when you have a chronic illness and you have bad days you can feel like the biggest failure in the world if you’re not able to do something everyone else acts like is so simple. Where they’re like, ‘you can’t be a writer if you don’t write every day. You don’t really mean it.’ They do this with art too – if you’re not working on your art every day, and if you’re a freelancer, if you’re not looking for jobs every day, you’re not committed, you’re not really doing it, you don’t really mean it.”

But there were days and still are days when she feels like she just can’t put finger to keyboard. Her brain’s in a total fog. And she knows she’s not the only one who’s struggling.

“Especially someone with a chronic illness like fibromyalgia that has a pain component and you can’t even sit up at the computer, how are you supposed to be looking for a job that day? But then you’ve got all of these little voices saying you don’t want it, you’re not chasing your passion, and that starts to wear you out, and that is where I started to get upset and resist my diagnosis and say it’s gotta be something that’s fixable, it’s got to be just me. And maybe if I just change this one thing, maybe if I just do this, I can be this creative like they say I’m supposed to be.”

She says it’s only been during the past few months that she’s been able to tell herself on bad days, she can’t do that particular task.

“And that doesn’t mean that I’m a failure. It just means I have a different situation.”

AM-T: “I was gonna say, how do you feel about this situation, I mean frustrated, guilty, less than, all of those things?”

“Yeah, it’s definitely all of those depending on the day, sometimes all at once, and to be a bit topical about it all the discussion in the past few weeks about Hillary Clinton’s health has really bothered me. Because I already feel there are already people looking at me thinking oh, she can’t do this. And to see someone who’s trying for the most powerful position in the country and because she likes to sit with a pillow behind her back, people think she can’t do it...”

And in case this Hillary pillow story passed you by, back in August there was a flurry of internet chatter about photos taken of Clinton using a pillow or leaning against a stool at public events. The question seemed to be – if she needed these props – could she lead?

Mary and I had this conversation right after Clinton revealed she had pneumonia, but she hadn’t let on about the illness for a couple of days after her diagnosis.

Mary isn’t surprised Clinton kept her mouth shut. She says it’s partly why she’s been so hard on herself. The image we’re supposed to present at work is one of strength – anything less and you can be branded not good enough.

“The rhetoric comes across as very derogatory towards people who aren’t perfectly able bodied. And so it does, it makes you start to feel so less than, that you have to say that’s a thing that’s beyond my abilities. I can’t do that.”

Just because she can’t work on a film set 6 days a week for 12 hours a day, she says that doesn’t mean she’s a less creative person, or someone who’s coasting, not making an effort…

“But that’s very hard to get through to people. My parents are both disabled so it’s something I’ve noticed for a very long time. Things like, when people think it’s funny to laugh at people who take the elevator up one flight of steps and to insult them and say they’re lazy. And it’s like, you don’t know them, you don’t know the challenges they’re facing, you don’t know why that person wanted to sit down on the subway. Maybe they just had knee surgery, you have no idea. Our society has some problems with that that they need to work out.”

And as we were talking about these perceptions of weakness and laziness, I was thinking about the other side of this story – men. In a way I wonder if this stuff is harder for men – after all the stereotype of the invincible alpha male is very much out there. So are you thought even less of if you’re a man who has some kind of condition you’re dealing with?

Mary doesn’t think so.

“You know there’s this idea that if a woman wants to be successful in the workplace she has to be twice as successful. So you’re already coming from this disadvantaged place where people don’t have the same expectations of you. Again going back to Hillary Clinton, if a male candidate had said he felt overheated, people probably wouldn’t have thought that far into it. But with her, there’s amateur people saying she has Parkinson’s and trying to diagnose her from random things. And I think a little bit of that is that idea that we have a stereotype of women as weak or weaker, that women are weaker, physically. So I think that when you have a chronic illness and you’re sitting there thinking, I am weaker than my male colleagues, I do have more trouble with this, I can’t lift that box…I do have to go get help. I think that part rankles in a way that would be very different than it would be for men.”

If you have a different opinion, let me know – especially if you’re a man who’s had his own experience of illness at work. 

When Mary first got her part-time social media job she wasn’t comfortable letting on to managers or colleagues that she had any kind of health issue. She’d do her utmost to make sure she was ‘on’ the whole time she was at work. She’d arrange therapy sessions or doctor’s appointments around that.

But later, when she’d been there a while, she was put on an experimental regime to limit her sleep, and this was going to interfere with her work. The idea was to re-train her body and mind…

“Trying to re-set your body and re-set your body clock, so I was trying to function on even less sleep than I’d been getting, and I finally realized I’d have to tell them…and I was like, ‘right now my brain is Swiss cheese because I’m not getting any sleep, and it’s on purpose, I’m under doctor’s supervision…but I just need you to be patient with me and to help me, like if I ask you go back over my work, try not to judge me for it.’ And they were perfectly understanding, I have amazing co-workers, I love my job.”

She realizes that compared to a lot of people she is lucky.

My next guest isn’t using her name. You’ll find out why a little later. She can say what she does for a living.

“I’m a human resources professional, I am a generalist, and I work in a large corporation.”

She just turned 35. She’s been married since she was in her late 20s. No kids. Back in April of this year she went on vacation.

“And I went to a tropical location, and even walking on the beach was painful – my knees were just bothering me so much and it really worried me, also because there was swimming pool and I realized I couldn’t tread water any more, there was no strength in my legs. I’ve always been a strong swimmer.”

She says the pain wasn’t like anything else she’d experienced.

“It felt really heavy, almost like I had a bag of hot coals tied around my knees, it was just extremely uncomfortable.”

This wasn’t the first time she’d noticed something amiss. About ten years before she’d had some issues with her balance and had to be hospitalized for a while. Then lately she’d begun feeling odd sensations in her body; she was tired, she had go to the bathroom more often. But none of it really seemed like a big deal until what happened on that beach.

When she got back from vacation she saw a doctor, had a bunch of tests.

And one day she’s at work – and the phone rings. It’s her doctor. So she’s sitting there, no privacy…

“We have open plan cubicles, and I stepped away into a conference room, I have a conference room near my cubicle. He said based on what you’ve described and some of the tests, we did MRIs, and some lab work, based on all that I think that you have MS.”

Multiple Sclerosis.

“He was pretty confident, pretty sure it was MS. I just knew in my gut he was right, you just get that feeling, you know. I knew that it was MS. I still had to get a confirmation from a neurologist, but I knew that was it. I was just in a conference room by myself on the phone with him, I just sort of started crying, and then I called my husband, and then I cleaned myself up and got back to work, because I was in the office. And then just kind of processing that for the rest of the day and the day and weeks to come.”

On the one hand she thought, how can this be me? I can’t have this disease. On the other something at the back of her brain told her, yup, this is what’s wrong – it all fits. And the thing about MS is, people have quite different experiences with the disease, so she’s not sure how things will pan out for her long term.

“For some people it’s their eyesight, and for some it’s their balance, and for some like with me, odd sensations and trouble walking. So they really don’t know what you can expect, everyone is different. From what I’ve read online there’s a percentage, maybe 20% of people that do end up wheelchair-bound – so that part has probably been the scariest, is thinking about the future and not knowing.”

AM-T: “I mean you were at work when you got the diagnosis which is typical that this should happen in a place where we’re trying to maintain our privacy. Talk about how you’ve handled this at work because you mentioned you’ve had some trouble walking and some people are going to notice that.”

“Yes, one person did notice and she said are you OK, what’s happening, your walking…and I just said oh, my knees are a little stiff today, I’ll be fine, I said something very quickly, in the hallway, I didn’t know how to react. Up to that point I really hadn’t thought about how to react to questions at work. I didn’t prepare, I shrugged it off, she wished me well and we went on our way.

But I needed some treatment that required an IV on my arm, so I had a bandage on my arm for 5 days. And 2 people at work asked me oh, what happened to your arm? And I lied. I said oh, I just fell and sprained my wrist. Again I just didn’t know what to say. So I did lie. And that’s when I really started thinking more about how am I gonna handle this at work? What am I going to say? Because lying, and keeping that secret, just started to make me feel really uncomfortable.”

After all she sees these people every day. And they’re well intentioned. But…

I do have some concerns about the consequences of disclosure.”

Now she works in HR. She says she’s not worried about losing her job over this revelation – in fact the law would be on her side.

She wanted to be anonymous on this show for slightly different reasons. For one thing her boss doesn’t know yet that she has MS. And her boss may sympathize for all she knows…but it’s more complicated than that.   

“Thinking about promotions and opportunities, would I be held back from those because I might be seen as less competent or less able to handle stress because I have multiple sclerosis and so that really is my main concern. And I know this because I am an HR professional, I know that biases exist.”

AM-T: “Well I thought that was so interesting to me, that you wrote you work in HR and you know how things really work, you said. Because we’re all presented with this idea that HR in America at least is terribly fair, and there are all these rules, and American companies have to jump through all these hoops if they want to get rid of somebody, so what’s it really like?”

“Well what I mean by that is all these rules do exist – the ADA, Americans with Disabilities Act, protects against discriminating in hiring and promotions at work, and that’s all true – but again if a hiring manger is faced with that decision, he or she could simply say I am not the most qualified candidate for whatever reason, maybe I don’t have enough experience, or I don’t have the right certification, it could be anything else, and I’d have no way to prove that’s because the manager is aware that I have MS.”

She’s been reading a lot online. And she says even the MS Society advises you may not want to say anything at work because of just these things – the possibility being treated differently, losing out on better positions. Again, this whole thing of being seen as weak and not up to the job.

Still, she wonders…should she tell people? After all…

“There’s a lot of talk nowadays about authenticity at work, right, bringing your authentic self to work. And so that’s something I’ve been thinking about, OK, I need to get more comfortable. And I know I will over time. This is who I am, I have multiple sclerosis and that is my authentic self now, and it’s different from who I was just a few months ago, and just getting comfortable with that and saying that if need be.”

But at the same time I don’t think she should be under any pressure to tell because of an overblown management trend around being authentic. But you may have other ideas. I told my listener I’d ask – is there anyone out there in a similar boat who has any advice for her? Let me know if so.

I wondered how much her diagnosis is affecting her outlook on life.

“It’s amazing how in a few short months it’s impacting everything – the way I see the world and especially in my interactions at work, and maybe that’s a silver lining, right, it makes us more empathetic and more open to that. We just don’t know what someone is going through at work. It’s impossible to separate what’s going on in your personal life from work. And that’s been one of my biggest takeaways is I just don’t know what someone’s going through.”

AM-T: “What about your thoughts about your future career? Some people when they get a diagnosis, they say it’s changed my view of what I think is important, somebody who was wildly ambitious now wants to spend more time with their family. It’s a bit of a cliché but you know what I mean. I wonder, are you thinking at all differently about career versus the rest of your life, or not really?”

“I am a little bit and I’m not superbly ambitious or anything like that, not to this point. One thing I am thinking about is um, the stress level. If I wanted to be in a leadership position or a management position that comes with a lot of stress. And stress can make my condition, can cause a relapse or exacerbation.”

Which obviously she wants to avoid.   

“What has not changed is wanting to be a solid performer. Because now that I’m ill, obviously I’ve always needed my job, we all need our jobs. But now I really need my job. I have short-term disability with my job, and long-term disability, and that has become just crucial in my thinking. OK, if I become severely disabled or anything I know I have this security at work, and that’s a comfort. So I don’t want to do anything to risk that. So whatever the future holds I don’t know, but being a solid performer, that hasn’t changed.”

Thanks to my listener for sharing her experience on the podcast.

And as I said earlier if any of you want to contribute to this discussion, particularly about how and whether to come clean about an illness or other condition at work, let me know. You can post on the Facebook page, at the Broad Experience dot com, or you can email me via the website.

And my first guest, Mary Ratliff, does her own podcast called Introductions Necessary – it’s all about women in STEM fields, most of whom we’ve never heard of.

I am getting married at the end of this week and I’m a bit busy so you won’t be getting a new show in two weeks – but I promise the one you will get is relevant to our current times.

And I get that not everyone can contribute with a donation to the show but maybe you can write a positive review on iTunes – I’d love it if you did.

That’s The Broad Experience for this time.

I’m Ashley Milne-Tyte. Thanks for listening.