Tips for Living and Working with an Invisible Illness

Like many people, I had a relatively uneventful childhood. That stopped being the case one night, when I woke up feeling sick and ended up unconscious on the floor after fainting and hitting my head as I fell to the ground. I came to a few minutes later, in my mother’s arms, with her crying over me. She thought I was dead. As it turns out, this was my first ever vasovagal episode, a condition where certain triggers can cause your body to overreact and lose consciousness. Fast forward about 15 years and I can now mitigate most danger associated with—or ideally prevent—vasovagal episodes and I haven’t had one in a handful of years. However, from that moment on, my life was never the same. There was no more “normal”. I am always wondering when the next episode will come and what people will think when it does.

Though I haven’t had a vasovagal episode in many years, invisible illness has continued to be part of my life. When I was around 20 years old, I was diagnosed with Crohn’s disease, an auto-immune inflammatory bowel disease (say that five times fast). While I won’t be going into the nitty-gritty details of Crohn’s disease in this post, I would like to elaborate on what it is like to live and work with a chronic illness and how it led me to start an Employee Resource Group at WillowTree for people affected by similar conditions.

Figuring out how to live and work with Crohn’s disease had been a struggle for me for a few years, especially when I was still in school. Now that I am a working professional, having a chronic illness is a whole new challenge. Rather than skipping class or doing poorly on an assignment or exam, I now have challenges like communicating my needs to my co-workers and supervisors and deciding whether or not to opt in to short-term disability insurance. Pairing these new concerns with the ever-present worry of when my next flare will happen—and what people will think of me when it does—makes for a never-ending stress-induced cycle of symptoms. I am very fortunate to work at a company that is both understanding and flexible with me about managing my symptoms and balancing my work with my health, but not everyone has the same experience as I do.

Like many others who have chronic (sometimes invisible) illnesses, I have severe anxiety around my condition, how others perceive me, and managing symptoms/flares in a work environment. This is not uncommon: many people with chronic illnesses have to deal with anxiety about their condition. Early on in my full-time career, I often wondered if anyone else dealt with issues similar to mine. “I can’t possibly be the only one dealing with chronic physical or mental illness,” was something I thought frequently, but I never had a way to connect with those individuals. Not long after, I made a friend at work who also has Crohn’s disease. We were able to discuss our issues, treatments, and anxieties about living and working with an often debilitating chronic illness. I wasn’t alone. I now had support from a friend who truly understood what I was going through and we were able to help each other cope.

When WillowTree first announced our Employee Resource Groups, I knew I had to form one. My friend and I couldn’t be the only two dealing with chronic illnesses. I was right: we aren’t! Our group now has almost 30 people in it and we cover a variety of different illnesses and mental health issues. We act as a support group for each other and have provided input to the company on policy changes and plans for our new office space accommodations. Though you may not be in a position to start a resource group at your workplace, here are some tips for living and working with a chronic illness:

  1. Be open and honest with your employer and team. Don’t let the stigma surrounding your invisible illness cloud others’ opinions about you. Help them to understand what you’re dealing with and work with them to find proper accommodations to make your time at work manageable.
  2. Build a support network. You are not alone in this. Find people that are dealing with similar issues to you and talk through the issues together. Especially at a new job, it can be daunting to try to explain your condition and get accomodations. Chances are that there are people in your company who have dealt with similar issues and they can help you navigate them.
  3. Don’t be afraid to ask for help. Everyone deals with stress differently and, inevitably, there will be stressful situations at work (interviews, presentations, deadlines, etc.). Don’t hesitate to ask for help when you need it.

If you are in the position to not know what it is like to live and work with a chronic illness, please keep in mind: you are fortunate. There are people around you that deal with invisible illnesses and the stigma surrounding them on a daily basis. Be kind to people and understand that no matter how someone looks, they may be fighting a battle on the inside. Be supportive and inclusive of everyone and try your best not to make assumptions about a person without first learning their story. I am very lucky and grateful for WillowTree’s open and inclusive environment. WillowTree has given me the platform to share my story and spread awareness of an issue that is very important to me while supporting my needs as I deal with my invisible illness.

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