I Hid My Chronic Illness From My Employer and It Mostly Worked Out

When you’re sick in the UK, you don’t have to tell your employer how you’re sick. So when I became ill while living and working in London in May 2009, nobody at work knew exactly what was wrong, and I didn’t intend to tell anyone.

I have a chronic condition called ulcerative colitis, which was diagnosed in 2005. Ulcerative colitis, or UC as those in the know call it, is a type of inflammatory bowel disease (IBD). In my experience, few people have heard of it, but most people have heard of its big brother, Crohn’s disease. There’s no real consensus as to what causes it, but an overactive immune system is the usual scapegoat. It seems that my body doesn’t recognize my large intestine as belonging to it, so it randomly attacks it. The result is ulcers, bloating, severe abdominal pain, and internal bleeding. Left alone long enough, it can be fatal in several different ways—malnutrition, dehydration, and bowel perforation can all occur. In the short term, it’s painful and embarrassing. Imagine having really severe food poisoning. Imagine it much worse. Imagine it not stopping.

Obviously, it’s kind of a gross disease, so I used to gloss over what exactly was wrong with me. This was always a fairly easy task, because I spent long stretches of time in remission. My own fiance didn’t even know exactly why I took medication until 2009. When one of them stopped working, and I started to get sick.

It took me longer than it should have to go and see my doctor when I realized my remission was over. I was optimistic, I was an idiot, and I thought maybe this time it would just go away on its own. Unsurprisingly, it did not. Instead it got worse, and I had to face up to the fact that my blissful two-year-long remission had come to an end.

I took a few days off work and made an appointment with the doctor, begging for better drugs. He gave me prednisone, a corticosteroid that doesn’t fit the ‘better’ descriptor. It’s an awful drug that causes bloating (yes, more), water retention, insatiable hunger, weight gain, excess hair growth, and mood swings. Ghastly, but effective. A simple course of prednisone had always sorted out other minor flare-ups for me before, so I willingly started on my usual ‘fix this’ dose. It worked. I started to get better, and missed only a few days of work.

You can’t just come straight off prednisone, so after a couple of weeks I began the scaling-down process, becoming teary, hairy, and fat along the way, but mostly doing fine. I was able to go to work, and I was able to work while I was there, and generally, life was good.

But then I started to flare again, and had to miss a couple more days. I talked to my doctor and upped my dosage. I talked to my doctor and scaled back down. I got sick. I missed more work. I tried scaling down more, and I was fine; I scaled down even more, and I got sick. Underneath the water weight I was fast becoming stick-like, 10 to 15lbs down on my usual weight because I wasn’t absorbing any nutrients from my food. The hair on my head started to fall out, but the hair on my face grew undeterred. I couldn’t walk up a flight of stairs in one go.

But I still didn’t say anything at work.

I intentionally kept it vague, even with the good friends I had at work. They didn’t push, but must have been incredibly concerned. But I was really reluctant to tell anyone anything—both due to the ‘ew’ factor, and the simple fact that I was scared. In 2009, the recession was biting London hard, and though nobody was saying anything, we all knew our company was feeling it. There had already been redundancies, and anybody who left of their own accord wasn’t replaced. The atmosphere at work was strained and snappy. I didn’t wish to appear to be the weakest link.

This strategy worked well until September, when a colonoscopy revealed what we already knew—I was very badly sick. All that medication hadn’t even touched the ulcers, and I was at risk of bowel perforation. My prednisone dosage was immediately upped to the highest dose I’d ever been given, and the doctors started throwing around the idea of surgery.

Around this time I finally got up the nerve to sit down with the big boss and my direct manager and let them know that I wasn’t doing well, and that I was probably also facing another few months of not doing well. I had no choice, but it was not a good meeting. I was so wound up I almost cried when telling them, and while they said all the right things, the added burden on an already-understaffed company was an obviously unwelcome one.

I made it clear that while there were days I simply couldn’t come into the office, I was able to work from home. They agreed, and this worked well until the day that my manager told me she didn’t want me doing that anymore. She said she’d prefer I took sick days instead, but actually, her tone made clear, she’d prefer I was just healthy and in the office every day like everyone else. I had plenty of sick days to take—the UK is generous in terms of paid sick leave—but I didn’t want to use them. I wanted to work. I didn’t want excuses made for me, or by me, and I certainly didn’t want anyone to think I was taking advantage.

So I went into the office and worked, day after day, through everything. One day I woke up and I couldn’t bend my knees. The joints were too swollen and stiff. Despite this, I was laughing as I called in to let my colleagues know that I would be late, because I couldn’t get out of bed. How else are you meant to react when you’re 25 and temporarily arthritic, and you are, once again, letting down the people who rely on you? It was the worst. The other worst was that I wasn’t allowed caffeine, and I was perpetually exhausted. All I wanted was coffee. The other other worst was that I was ugly. It sounds ridiculous, considering how many other things I had to worry about, but my face was bloated beyond recognition, my skin was flaky, and I had lost about a third of my hair completely. Every time I saw myself I was suddenly and unpleasantly reminded that I was ill—and I knew that every time my colleagues and clients saw me, they were reminded of the same thing.

Eventually I quit my job. There were reasons to do so beyond my health (or lack thereof), but it was certainly a part. Eventually it was clear that the prednisone didn’t work for me, even at the highest dose. A year after my symptoms first came back, I had a short hospital stay, a few blood transfusions, and an infusion of an immunosuppressant called Remicade. It worked, but it took months. I’m extremely grateful that I could get away with freelancing during this time.

It’s now nearly three years since I started on Remicade, and I am still—touch wood—in remission. I’m also still a freelancer, although with the recent end of a big contract, I’m starting to consider a permanent position again. It’s a scary proposition.

My hope is that I wouldn’t play the martyr again. That I’m older and wiser and braver now. That I would take the leave I’m entitled to if I were to get sick again. That I would give myself a chance to get better. But I’m not sure that I would. Though I’m much, much more likely to tell people about my illness now (and write about it on the internet!), I still feel that it’s a very large hindrance to permanent, full-time work. I feel that chronic illness is viewed with overwhelming negativity in the workplace, regardless of laws which forbid discrimination against it. So, for now, I look—and have my fingers crossed that I stay in remission.

 

Hayley Judd has lived in some places. // Related on The Billfold: The Cost of Crohn’s Disease, Year One

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14 Comments / Post A Comment

kellyography (#250)

Oof. That is so rough. Hank Green, my favorite videoblogger/internetainerpreneur, has UC and has talked at length about how expensive the drugs are and how shitty the company that makes them is, and his struggles with the disease in general.

Catface (#1,106)

Hayley, I admire your candor. Wishing you good health.

wallrock (#1,003)

Having a chronic illness and trying to maintain a full-time position is a very hard thing to do. A former coworker of mine was diagnosed with Crohn’s and it was rough. At the time I was at a small company that was relatively strapped for cash and we just didn’t have the ability to bring on temporary people to fill in for her absences. I hate to admit it but there were nights when I was stuck in the office trying to do the work of two and I really resented my coworker over it. I just didn’t know how bad a chronic illness affects simply everything in your life.

I am so grateful to not have a chronic illness, but also cannot stop imagining how utterly different this would be for Americans. I’m pretty sure my year’s worth of paid time off was used up by the second or third time Hayley “missed a couple days.” In addition, I earn my sick time as we go through the year (and my sick & vacation time are one and the same) so I think I have all of 3 days available to me right now?

And not to mention what would happen to my health insurance if I couldn’t work anymore and went into freelancing…

MagnoliaQueen (#2,614)

@polka dots vs stripes I am in the US with a chronic illness, also an autoimmune one. Luckily (?) mine is just trying to destroy my joints, so I don’t feel sick and need to miss work. And, definitely luckily, my insurance has approved and is paying for me to be on some ridiculously expensive drugs that are helping me. I always have some amount of worry about what would happen if I lost my job, and therefore my insurance, because I would have no dream of paying for these meds that cost more than I earn in a year.

@polka dots vs stripes I’m actually living in the States now, and yes…it is very different. I’m ridiculously fortunate to get health insurance through my husband’s job, and to have a profession that allows me to freelance. That said, we wouldn’t even be here had I not been able to get insurance.

Not going to lie, the US health system absolutely enrages me. It just seems so blindingly obvious to me that public healthcare is the only way to go, but as a guest in your country, I try not to be too vocal about it (although I mostly fail at that). It’s just so outrageously unfair and punitive.

@MagnoliaQueen, I wouldn’t belittle your illness! I had a side effect of terrible joint pain for the grand total of two days, and nearly went out of my mind with the pain. I’m glad the horribly expensive drugs are helping!

M57 (#2,581)

@MagnoliaQueen The individual insurance has improved greatly since the Affordable Care Act was passed. I have Crohn’s disease and was able to buy a great PPO plan. It’s not as affordable as through a job but my insurance paid over $30,000 for just my prescription medications and I paid a fraction of that. We’ll see how it evolves with the health insurance exchanges but so far so good.

If you are a student or unemployed, the drug companies will often help with the cost of those really pricey drugs. It’s disheartening to know that I can never earn enough money to cover the amount my insurance has paid for my care but I wouldn’t be alive if I had to cover my hospital bills up front so I’m incredibly grateful. The system is rigged for big bills but if you have a chronic/major illness, a support group can really help you learn how to minimize your costs.

I too have UC (isn’t Remicade great? Nothing worked for me before it), and I’m interviewing for new jobs right now and trying to decide just how much to tell them. (Everyone at my current job knows and is wonderful about it.) Good luck, Hayley!

Olivia2.0 (#260)

Try having a chronic condition like this (I have Lupus) and living in the US. Until literally this week, I HAD to have a full time job in order to maintain health insurance. I just got married and I’m now going on my husband’s insurance. And I’ve been VERY lucky to work mostly in non-profits, where I get a generous (for the US) # of sick and vacation days, but I still get flack for actually taking them. It’s hard to explain that I am sick, but for me sick is being in so much pain I can’t get out of bed.

Dancercise (#94)

Two people in my life have Crohn’s and it is just the worst. One of them has a degree from UC Berkeley but lives with her parents and works part time because it’s so bad for her that she can’t work a full-time job.

Thank you for sharing this. You’ve encouraged me to be extra generous in my annual donation to the US Crohn’s and Colitis Foundation next month.

Thanks everyone for the great feedback and lovely comments. I hope everyone who’s shared their stories is doing okay – it’s an awful, awful illness, BUT the good news is every day the researchers are learning more about autoimmune diseases.

James Reese (#4,460)

Hello I am wondering if any of you have had an experience like my wife and myself have had. I put a short My Story on my website about what we did and how we succeeded with a very serious health crisis. It took world wide research and many years to win. If you have had something similar I would be interested in hearing about it. My site is http://www.thereesewellnesssytem.com. Its nice to hear from those who have been down the path and won. Thanks Jim

salsachic (#4,522)

Hello all. I live in the US but I’m also dealing with a chronic illness. Thank you Haley for such candid input, it is good to know that us sick folks are not alone. And I fear that these auto immune diseases will continue to rise at epidemic proportions, unfortunately. I am unable to work in a typical corporate or office setting at all. I have 4 kids on top of it. So I run a business out of my home on the Internet. Even doing that is beyond hard and sometimes I just cry because I wonder how do I go on another day? I wish there were more advocates concerning chronic illness and that others could learn not only to be more sympathetic, but more AWARE. Maybe the lack of advocacy is due to the fact that we are too sick to do much more than what we are already doing, LOL. I do not tell anyone that I’m sick anymore, either. I honestly got tired of the bizarre looks as well as insincere and inconsiderate comments from others who cannot understand what it is like to live daily with a chronic illness. Again, thank you for sharing and thanks for letting me put my two-cents in. :0)

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