Have you ever awoken in bed and thought that what happened the day before must have been a nightmare? It CANNOT possibly be true that I have a rare disease with no cure and am now disabled and unable to work. But then the internal tremors, tight muscles, stiff neck, fatigue, and sweat on my body from wearing multiple heating pads are quick reminders there was no nightmare. You still have stiff person syndrome (SPS), which is pretty much a nightmare to have. 

Receiving this diagnosis in my late 30’s was pretty devastating. I still struggle to wrap my head around it certain days. Everything in my life has drastically changed, forcing me to adapt, grieve, and persevere. SPS is listed on the Social Security Administration’s Compassionate Allowance List (CAL), which helps to reduce the waiting time to reach a disability determination for individuals with the most serious disabilities. I was approved for long-term disability within 2 months of applying, which is fairly swift, especially during a pandemic.

I cannot stress enough the importance of securing private disability insurance if you are financially able to afford it early in your career. My father suggested I sign up for both short-term and long-term private disability insurance plans offered through my employer when I was in my early 20’s. Those were the untouchable years when I took my father’s advice but never thought for a second that I would ever actually use those plans. I had no idea how imperative they would become to my survival.

We have all heard how disability payments from states and social security are not enough for an individual to survive on. I found this to be true and heavily relied on my private plans to help with rent, health benefits (Cobra), out-of-pocket medical expenses, transportation to doctor’s appointments, food, etc. I was forced to file for a divorce roughly 6 months after my diagnosis to protect my own mental health, so I did not have a partner to rely on for financial support. Although I was lucky to have a support system of family and friends for all of my other struggles, I did not want to be a financial burden for any of them. Luckily that was not an issue. Since transitioning to Medicare I have hit some obstacles with treatment affordability, but have been able to apply for a financial hardship program offered by my home-infusion company.

I have found that with a rare disease diagnosis comes many complications. SPS has adversely affected my body, mind, personal relationships, and social life. My threshold for stress is very low and a simple issue can send me into a negative whirlwind of anger, frustration, and hopelessness. However, my long-term disability plan has helped to reduce the weight of the financial stress that I know so many rare disease patients and families face. 

My single piece of advice today to all young people starting their careers is to inquire if your employer offers private disability insurance plans and to sign up for them if you are able to afford it. We often think we are invincible when we are young, but life throws us many gut punches, some of which leave us unable to perform a job that will pay the bills and leave the lights on. Disability appears to be on the rise with new cases of long-haul COVID, and it is an eye-opening moment to reflect and prepare for the worst but hope for the best.