Nov 18, 2019
Remote work is more than a job perk—for people with chronic illness, it’s life changing
Remote work is so much more than just a job perk for digital nomads. Going to an office daily isn’t a possibility for some people. Their minds are fine, but their bodies don’t cooperate. Remote work allows people who are chronically ill to have full time jobs & excel in them. Some people don’t understand how empowering that is.
10 years ago, someone very close to me had a bizarre episode at work. She said that all of a sudden it sounded like everything around her was under water. She sat down to join a meeting to discuss a design project that her team was working on, and when she attempted to give feedback, her words came out in what sounded like garbled alien language. She said she heard the noises coming out of her mouth, but couldn’t figure out why it was happening. She tried again, and again, strange sounds came out instead of the words she was trying to say. Her co-workers, very concerned, took her to the ER, where she was told initially that she had had a stroke. She was 28 years old.
Following that episode her health started to rapidly decline. She woke up one morning hardly able to move her legs. She started feeling like she had the flu on a weekly basis. Her hair began falling out, her hands started to turn blue and white in the cold, her face flashed bright red, her hands began to swell regularly, and her veins stood out. She was barely able to get up out of chairs, had to use a cane, walker or wheelchair to navigate around depending on the severity of the day, had trouble breathing and severe chest pain, kept repeating herself over and over again, lost time, and had episodes where she stopped understanding speech and needed to sleep immediately afterward.
She was terrified. She went to see a flurry of 12 different doctors and specialists, underwent a spinal tap, multiple MRI’s, EKGs, EEGs, and blood tests of all kinds and varieties. No one could figure out what was happening.
She got her affairs in order because her kidneys and central nervous system had begun malfunctioning as well and she had a young child. She was eventually referred to a rheumatologist and neurologist team that diagnosed her with mixed connective tissue disease and a rare seizure disorder that only affects a specific portion of the frontal lobe of the brain.
Once she started treatment for the seizures and and MCTD, her health began to drastically improve. Her seizure symptoms were completely under control, and the pain that kept her from being mobile went from non-stop, to only a few days each week.
Her doctor still demanded that she obtain a handicapped license plate, and recommended that she pursue disability because her health would not sustain having to go into an office every day. The longer she tried to continue doing it, the worse and more frequent her episodes would become. Her body just couldn’t handle it at the time.
She was furious. Her mind was completely fine once the seizures were treated, her professional experience and skillset hadn’t changed, but the physical symptoms of MCTD were getting in the way of her pursuing her career.
Her design team had a front row seat to her rapid health decline. Her boss graciously offered to let her work remotely off and on as needed since she was able to maintain her workload without any issue, as long as she was able to do it from bed on the bad days. Being able to work partially remotely kept her off disability.
Some stressful situations happened in her personal life related to a family member’s health, and her heath tanked again as a result. Her seizures were still completely under control, so her mind was still fine, but her physical health crashed to the point that she wasn’t able to come into the office anymore.
She was devastated. Being able to work was one of the only things keeping her sane.
She wound up having the opportunity to interview for a completely remote position at InVision, and landed the job thanks to the awesome management team there.
No one other than her boss (who she needed to coordinate specialist visits with) had any idea that she was even ill. On bad health days she just stayed off camera. On good health days, she looked absolutely fine. Working remotely in combination with her treatment plan caused her overall health to improve dramatically.
That remote job saved her life. Full benefits, the ability to be a full time employee contributing 100% without anyone even knowing she was ill, and having the opportunity to grow in her career was the most incredible gift she could ever have been given. She went from a person with very little hope, to a person climbing the corporate ladder. She said it changed her entire life.
I am she.
Remote work is far more than just a job perk for digital nomads who want to see the world. It’s a life changing opportunity for people with chronic illness whose minds are fine, but their bodies don’t cooperate. Want to make your company more inclusive? Create opportunities for people to work remotely. The impact is staggering.
