By Dawn DeBois

I have a rare autoimmune Disease, and soon after being approved for Social Security Disability (SSDI), I started receiving Ssdi Ticket to Work program information. At the time, I had just begun understanding my rare disease diagnosis, and I was working with my provider to find the best treatment plan. There was no way I could think of returning to work.

Intravenous immune globulin (IVIG) was the first-line treatment for my rare autoimmune disease. And as wonderful as the treatment benefits were, the low energy levels before each subsequent infusion and the recovery periods following each infusion made the possibilities of working full time unreliable.

So, two Years Ago, I switched to subcutaneous IG infusions at home, which I lovingly refer to as SubQ. Why refer to a treatment lovingly? The reason is simple: SubQ treatments have allowed me to live a full life with a rare disease without energy dips or nasty side effects. That’s a true love affair in my book.

Changing to SubQ got me wondering about the possibility of returning to the workforce full time. I’ve worked part time for the majority of the time I have been receiving SSDI, either writing or working with rare disease patients. But SSDI places hard limits on the income patients can earn to continue to receive benefits. This income restriction makes my life difficult since my meds are not cheap. And, because my income is far below the poverty line, I have to obtain help with my out-of-pocket medical expenses.

The income restriction also prohibits me from having things to look forward to. I don’t have the ability to save for vacations or simple trips to visit my sons who live out of state. I spent my 401(k) savings years ago. The only thing I can currently look forward to is the fact that my monthly payment from SSDI coupled with inflation means my money is going to be worth less and less as I get closer to a true retirement age.

But, what I’ve learned is that SSDI’s Ticket to Work program offers promise for people like me in this predicament. The program allows us to attempt to go back to work without the fear of immediately losing our SSDI benefits. Here’s how it works: For several months, individuals receive both their SSDI payment and their income from working. After that, SSDI pays the difference if a certain livable wage isn’t attained in any one month. There’s even a guarantee of being immediately reinstated onto SSDI if a person’s health can’t stand up to the demands of working — without having to file a new application.

This program has me imagining the possibilities now that the COVID-19 pandemic has made working remote more of a norm than ever before, which gives those of us with chronic illness another opportunity at employment. I’m not ready to be public-facing 100 percent of the time. However, if I were able to use my writing and patient communication skills, as well as my experience in pharma (both as a former employee and now as a rare disease patient and advocate), in a full-time role, I would have many things to look forward to.

For more information about SSDI Travel to Work, go to yourtickettowork.ssa.gov.