Navigating Work-Life Balance by Asking for What You Need (Part 1)

Picture this: You are young, you are ambitious, and you have big plans for career. Suddenly, chronic illness manifests itself, and everything changes. Now, you’re not simply a novice employee trying to make your mark, but you’re trying to figure out what’s going on with your body, how to hide your symptoms so you don’t look unreliable, and you aren’t sure how you can make all this work.

Sound familiar? The please read Leah Roman’s story below, in her own words, and share your experiences. It’s an insightful and thoughtful look at one woman’s journey in the professional world, and I think many of you can relate to the building tension and frustration in her story.

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In January 2006 I was 25 years old and very busy! That month I graduated with my Master of Public Health degree, started my first “professional” level job in the field, and landed in the emergency room with what I would later realize was the initial flare up of my chronic illness. I had swelling in my face and neck. I had hives. I had started having strange reactions to foods. I had a low-grade fever. In short- I felt terrible. Convinced it was simply an allergic reaction; the doctors pumped me full of Prednisone and Benadryl and sent me on my way.

I remember feeling paralyzed with anxiety during that time. How would I tell my new boss of two weeks that I needed to take a sick day? How would I ask her for the hours of sick time necessary to accommodate the follow-up appointments and tests to address my symptoms that simply would not go away? What if I eventually got too sick to work? I was single and needed to work full-time to keep my health insurance.

Since 2006 I have been operating with a “working diagnosis” of Undifferentiated Connective Tissue Disease (UCTD) to account for my joint pain, fatigue, sun sensitivity, and rashes. The chronic fevers, flushing, and food sensitivities remained a bit of an outlier until two years ago. I was referred to a talented autoimmune dermatologist who finally attributed that group of symptoms to a mast cell activation problem. The way she explained it was that my mast cells (the cells in your immune system that make histamine) “behave badly” and react to things they shouldn’t (e.g., food, heat, and sun). While there remains some debate about which symptoms are attributed to which condition (and whether I meet all the criteria for each), I have responded well to the updated cocktail of rheumatologic and antihistamine medications.

The first few years of work with this chronic illness were the hardest. Being young and naïve in the workplace, I did not always know my rights in terms of privacy. I did not always know how much to share and how much to keep private (especially when asked a direct question about my health by a supervisor). When I first got sick, I only ate food that I brought from home (due to my new food reactions). Several co-workers, to my face and behind my back, speculated that I must have an eating disorder- what else could explain my weight loss and refusal of catered or communal food?

In Laurie’s new book In the Kingdom of the Sick, I felt especially connected to the section about the workplace. Chronic illness symptoms do not always meet the criteria for a disability. Therefore, you may not be eligible for a formal accommodation. As she also points out, one of the major challenges is that your symptoms are often inconsistent- you may need an accommodation one day and not the next! And what about asking for accommodations for diagnoses that are unknown or tentative? Many of us wait years and years to get the correct diagnosis.

I found that I needed accommodation around issues that did not seem “normal” to my co-workers. For example, early in my career I declined an invitation to a staff sporting event being held on a near-by athletic field. Since it was being held outdoors in July (without shade), I had to decline. I declined because my extreme sun sensitivity can trigger fevers, rashes, and full-on flare-ups. Although I tried to explain the severity of my situation, I was told by my supervisor “You better start going to these events or people will think you are not a team player.” I received similar “warnings” over the years when I declined work dinners or parties where I was unable to eat the food and/or too fatigued to stand all night at an event after working all day.

I think it can be difficult for those without chronic illness to understand the intricate level of planning it can take to navigate a “normal” day at the office. For example, I have lived with low-grade fevers for seven years. When I shop for work clothes, my focus is primarily on finding layering options that can allow me to get down to short sleeves at a moment’s notice if my temperature begins to rise. I often “pre-treat” myself with Tylenol prior to an important meeting to ward off a fever and its resulting flushing. The experience of severe chronic flushing at work silenced me during meetings for many years.

I also spend a lot of time protecting myself from the various “hazards” in my physical environment. Having spent much of my working life in Boston and Philadelphia, I have worried about the health of several old buildings which have housed my offices. Some spaces have had a history of mold or water damage. How does that environment affect my poor easily activated mast cells? I have had reactions set off by colleagues sitting in close proximity while wearing strongly scented perfumes or lotions. And then there is the art of dodging co-workers who insist on coming to work sick and putting colleagues who take immune suppressant medications at an unfair risk for illness.

And finally, while it is exciting to be invited to present and attend conferences…work travel can be treacherous with a chronic illness! From the physical strength needed to maneuver your suitcase, to trying to stay on the eating-exercise-medication schedule that keeps you in balance…it can be exhausting. I once traveled to Missouri to co-facilitate a training. At the last minute, I discovered that I could not eat the meal options being provided by my host organization. As a result, I was up at 5am to visit the grocery store to purchase all the “Leah-friendly” food I would need to survive for the next two days.

To be fair, for each challenge and difficult situation that I faced in the workplace, there was a sensitive friend/co-worker/mentor/colleague that I met in my offices and travels as well. These people grabbed my suitcase and hoisted it into the overhead without asking; they sat apart from the group just to have lunch with me in the shade; they strategically steered colleagues to choose a restaurant where they knew I had safe food options; they did not ask why my schedule was a bit more flexible that everyone else’s. I am incredibly grateful for the kindness and friendship of every single one of these people.

I have spent the last seven years balancing these challenges and victories in an ongoing debate about my ideal work situation. Finally, I approached a turning point in August 2012.

Want to see how all of this resolved? To be continued….

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10 thoughts on “Navigating Work-Life Balance by Asking for What You Need (Part 1)

  1. Leah, I’m sorry to hear about all the difficulties you’ve had! It can be so hard to figure out how to deal with these things in a work context – what do you say? What do you not say? How do you show you’re a good worker while at the same time taking care of yourself the way you need to? A while ago, I had my own thyroid-related issues that affected my ability to focus and think clearly when some of the primary work tasks I had at the time were to write strategies and reports. You don’t want to fall back on excuses, but at the same time it was out of my control. I’m glad you’re writing about this so that others in a similar situation may not feel all alone, and I’m looking forward to seeing what happened last August! (Was it the decision to become a consultant?)

  2. I’m in tears after reading that. It all sounds so familiar. You just have to live your life at a different rhythm, your rhythm not anyone else’s. it is comforting to hear about how other people have found their way through such uncharted waters. Thank you Laurie and Leah.

  3. It is so nice to be a part of this conversation! I’ve been thinking about sharing my story publicly for quite awhile…but was not sure about the right angle and venue for sharing. Lucky for me- Laurie provided both when she invited me to contribute to her blog.

    Nedra- thanks for your kind words! I think figuring out what to say (or not to say) to supervisors/colleagues in the work setting is one of the biggest challenges. I learned from mistakes along the way. Specifically, I think I said too much at the beginning- thinking I had to share that level of detail with my supervisor and I thought I could trust everyone. It did not always work out. About 2 years into my illness I went to a Supervisor Training offered by HR and found out all the rights that employees have in terms of privacy, accommodations, etc. I was so surprised! HR should teach every employee about their rights- not just supervisors.
    And yes- accommodating my health was a huge part of my decision to become a consultant. I look forward to sharing Part 2 later this week!

    Helen- thank you so much for reading. It is nice to know that my experiences resonate with others. I also like your idea of living “at a different rhythm”. That certainly describes what I’ve started doing!

  4. Leah, your story is so familiar to me that I was shaking my head YES as I read it. I went through the lack of diagnosis, the diagnosis and the living with it in the workplace for many years and it took a toll. My clients, who are fortunate enough to still have jobs, struggle with these issues as well. It sounds like you are particularly good at knowing what you need and getting it — a skill that is critical when you live with the unpredictable, invisible and debilitating. I’d love to have you guest blog at my site, http://WorkingWithChronicIllness so you can share your insights with my readers as well.

  5. Hi Laurie, Leah and Rosalind,

    Your stories also resonate with me. I was diagnosed with fibromyalgia fall of 2012 after a five year diagnostic odyssey. Unfortunately, my work place has been anything but supportive and I have realized that I cannot allow my health to be adversely affected any longer. I would love to learn how to start my own consulting business, which I had at one point on the side to earn extra money. I really want to operate from a place of empowerment than than victimization! Can you share how you started to create a life that worked for you? I know I have so many skills but I’m not sure of the best way to get started.

    Thanks so much!

    • Sorry you have faced these challenges, but so glad the posts have resonated with you, Jennifer! Rosalind is an amazing resource–I’ve interviewed her for both books I’ve written–and I definitely suggest checking out her site, for a start: As Leah’s story suggests, the first step is to ask for what you want, and it sounds like you have a sense of what that is–now, it’s a question of making that work.

  6. Wow, Leah — your experiences sound so much like what I’ve gone through! (Except that the job I had when I got sick was being a full-time stay-at-home mom. But there were still things to juggle and accommodations to figure out.) I’m six years into this and have the UCTD label too, although it doesn’t explain all my health problems. Kind of feels like it’s a place-holder diagnosis rather than a “real” one.

    I look forward to reading the rest of your story!

    And thanks, Laurie, for giving Leah the location to tell it!

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