Deciding to Work from Home with Crohn's
Between the last 16 years and dealing with things that pop up as a result of a diagnosis of Crohn's disease, I've felt a lot of things. I've felt isolation, depression, completely lost, confused and most of all, completed invalidated.
Stigma around taking medications in public
During my initial diagnosis for me, it meant taking upwards of 35 medications a day - for a 17-year-old, imagine the stigma I had the fear of other people seeing them - or even knowing this fact, made me crawl into a figurative hole.
Some of those meds were daily injections, monthly IV infusions. Some I have been on have been labeled as "black box" medications - meaning death is a possibility & has happened in other cases. I still have anxiety taking the medications I need to in public, despite knowing I need them and knowing I should have no shame or fear of being judged.
Knowing I have friends that have diabetes that are shamed for using the meds where and when they need to is heartbreaking to me. They are sometimes forced to change a sensor or inject a medication immediately and I have personally heard needle-shaming in restrooms based on the fact that there is a Sharps container in nearly every public restroom. Can you see why we feel stigma now?
Diagnosed with Crohn's in high school
When I was diagnosed, I wasn't working - I was in high school and I wasn't a great student. I spent a LOT of time studying only to get okay grades. When Crohn's hit, some people had their own suspicions as to why I was gone and never returned to school that year. In my senior year, I focused on taking the medication that I needed to, my homework, and really nothing else. I also had a massive case of moon face that made it incredibly difficult to be seen in public, so school was never fun for me.
Working with Crohn's disease
Now that I've been working for a solid 15 years, things have changed. I've had a handful of meaningful jobs and ones that have taught me to be a better human being while empathizing with those around me. But working with active Crohn's has always been the hardest part about work for me.
I truly enjoy what I studied in college and have truly loved every single "job" I've worked at. In my career, I have always been a servant leader working with groups of underprivileged or high-risk patients and people. I have always enjoyed filling up someone else's cup and helping someone realize their potential. But Crohn's has made that extremely hard.
Living with Crohn's is all or nothing
Crohn's disease forces me to exert twice the amount of energy, while I actually only have half of that. Instead, I smile & put on a happy face when I'm actually feeling completely isolated. In the close to 16 years living with IBD, I still have not perfected or come close to fine-tuning what organizing my energy looks like. It's all or nothing and feels like it always will be some days.
I still feel guilt for the amount of time I spent taking off for doctor's appointments when I was working full-time. Because for me, the last 10 years have all been up in the air in terms of hospitalizations, surgeries, and therapies/treatments.
Medication side effects
There are scary, expensive medications and many of them have been very low doses of chemotherapy, so I obviously felt very sick on those days and fatigue so many days after. I'm still not sure that "fatigue" is the right word. Many chronic illness patients will tell you after their treatments, they are unable to do much for the next few days without feeling nauseated, tired and completely run down. (It's important to note not all patients experience this!)
Kelly shares more on this in "The Decision To Work From Home – Part 2."
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