This is a post that takes you on a journey through a career of maintaining work-life balance with a disability. Balancing work and life while dealing with a disability is not for the faint of heart.
Even the hardest and smartest worker who pays attention to health still demands time away from work to deal with life. And this makes it very hard to find jobs at times. Read ways I had maintained a work-life balance with a disability for my entire career.
At the ripe age of 13, I entered the workforce with a job cleaning up a neighborhood deli. By age 17, I had held two jobs already. One job I held was in a high-end NYC restaurant that mostly catered to a proud, early 1990’s NYC mafia customer-base. Being young and naive, I fell in love with this job. It had a family atmosphere and I grew quite close with the business owners.
At age 18, shortly before college, the restaurant owner was kidnapped and found murdered two weeks later. The combination of searching for him with police for two weeks, late nights, working and having a sad end to the search took a toll on me. Something snapped and I had a grand mal seizure. That summer I was diagnosed with Epilepsy.
Move forward in life and work
My life and work would never be the same again. Since that time, in spite of the disability, I still managed to hold a full or part-time job until age 43 when I stopped to care for my mother. My career path has been filled with obstacles unseen by most of the US workforce.
Thanks to the Internet, I discovered there are many just like me. Balancing work and life is a challenge with a disability. However, it can be done. This post dives into real-life experiences and discoveries while maintaining work-life balance with a disability.
Become an expert explainer
In my early 20’s, I discovered that disabilities require maintenance. Trips to the pharmacy, expensive doctor visits, and getting test results all required scheduling and documenting. I found having a job and a disability does not give me a free pass on life just because I get upset about having a disability.
I became known as one who constantly over-explains things, the result of having to explain why I miss a workday for unexpected reasons to keep a job.
Yes, I discovered I have rights as an employee with a disability. But this did not mean the company had to pay me. They are not forced to keep me employed forever. Like all with disabilities, I found I had to prove I can show up and complete the job required, especially if the company made reasonable accommodations set by me.
The reality of rights applied to business
I found out in my early 20’s why knowing my rights only gets me so far. My skills at explaining, scheduling, and documenting protected me much more. Companies hated that I could prove why I missed work. My disability was for real, even if they did not understand it.
The toxicity of working in companies that expressed regret for having to pay me when I missed work, plus accusations of medical insurance fraud were hard to handle. I did not understand why no one believed me and the confrontations were harmful to my health.
I discovered I need to take longer lunches than normal, and every six months, I required 2 days off for testing and doctor visits. In between, I made it a point to communicate when these things happened and kept records. Chronic disabilities are difficult this way. There is no cure and the disability becomes more pronounced with age.
Prioritize life over work and take unexpected breaks
In my 30’s, and with the rise of the Internet after the dot-com crash, I entered the age of entrepreneurialism. Now, entrepreneurs are known for putting work before life. I discovered I could not do that “work-as-a-lifestyle” thing. I had to maintain a “life-work balance”. Working in entrepreneurial jobs became difficult.
The reality I discovered is simple and profound: No work if my health is suffering. So, health comes first always. I have a disability. I must attend to life before I think of my work.
When things get ugly
Using a real-life experience, in 2007, I was a key employee during a Securities Exchange Commission audit for an insurance company. I had put in lots of work and was prepared for it. But the very morning the NY State officers were to come to the office, I had a seizure and went to the hospital.
The company kept calling me in a panic on my phone as I was in the hospital. They demanded I come into work. They used words like “chicken” and claimed I was “lying about being sick”.
Why? Due to a Human Resources error, the office managers never knew I had Epilepsy, which I proved through my documentation of communications. I decided that day in the hospital, “No job is worth my life.” I changed jobs a month later because several people at the company lost their jobs for demanding I come to work.
Discover why things happen
In my mid-30’s, I began to investigate and discover what US businesses must deal with and why many companies simply cannot afford to hire me. So, I mainly held jobs at remote companies based in South America and Europe from 2004 to 2016.
I found while working in insurance how US companies spend millions of dollars to make sure lawsuits are not filed and public relations problems do not become “trial by social media”. Entrepreneurs spend money on starting the business, state fees and taxes and hopefully one day, health insurance, unemployment, social security, and more.
A person with a disability like mine who spent nearly $250,000 over the course of 15 years on medical treatment, would need much more than “strong will” to start a business.
Find peace of mind in unexpected places
Oddly, all of these realizations led me to find jobs in countries like Colombia, Australia, Canada, Germany, and Denmark. In these countries, I was able to find businesses free of fear, more sympathetic to my disability, and I could work remotely from the US.
Additionally, work-life balance was/is easier to manage when the company you work for sympathizes with you and does not understand why a country charges people so much money for healthcare.
Plus, working from home removes the fear of seizures during a commute and in the workplace. These companies cared more about the job getting done instead of where you are when you complete tasks.
Be honest with yourself and others
At age 40, I started to not disclose anything when it came time to fill out those EEO claim forms at the end of a job application after finding out I had been given some “sympathy interviews” for having a disability. In truth, that led me to start lying on my EEO forms and I gave that advice to others. Ultimately, I found out this is a mistake. If you know your disability requires accommodations, you cannot lie. It will work against you while employed, even if you have a disability that is hard to recognize. (Ex: OCD, Bi-polar, and Epilepsy)
But I quickly realized from that mistake that all I was doing was modifying my behavior to achieve new results. By age 43, I realized something had changed when I was laid off from a job I loved in Denmark.
As a person with a disability, I genuinely sympathize with anyone who feels discriminated against. However, I was finding out that through all my trials I had stopped educating myself on how to deal with changing times. In short, I stopped lying to myself and started taking a business course, which helped me figure out what I should be doing with my life; helping people get where they want to be.
The marathon never ends
The US Bureau of Labor Statistics reported in 2017 that only 18% of disabled persons in the US were employed while 10% were unemployed. The rate of unemployment to employment fluctuates greater than those without a disability. This is just how work-life works for the disabled worker.
As I write this post for Find My Profession’s blog, I am reminded that the choices I made in life make all the difference in the world. Life is short and fragile. If I had ever stopped to focus on how no one cared about what offended me, I never would have gotten anywhere.
To date, I have worked as an actor, voice actor, insurance business analyst, busboy, salesman, online community manager, and customer service manager/consultant.
For me, maintaining work-life balance with a disability requires 3 elements:
I am motivated by a sense of achievement, the love and support from my wife and family, and acceptance of all the things I cannot change as I use it to be what I want to be. The next time you are in a position to hire someone who has struggled with a disability, remember this simple fact: Employees with a disability are some of the most humble and honest people you will ever work with and they never take anything for granted. They understand more than most that nothing in life is “given”. Everything worth the effort is “earned”.
Above all, they know there is no such thing as finding peace in life by running from it.