The Decision to Work While Receiving Disability Benefits Requires Careful Consideration

Amy Baker avatar

by Amy Baker |

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The last few months have been a whirlwind for me due to all of the life-changing events I’ve been experiencing.

Autoimmune disorders and stress do not mix well, and it took me a while to recover from moving, starting a new career, and experiencing a scleroderma flare-up. I was feeling overwhelmed, so I took a knee, so to speak.

I’ll admit, I missed writing, which is a passion of mine. I knew it would be only a brief hiatus to give me time to collect my thoughts.

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The most significant stressor in my life was the decision about whether to pursue a career again. For nearly three years, I’d battled bureaucracy to get my disability benefits approved.

Anyone who’s tried to apply for disability can relate to experiencing a seemingly never-ending saga. The process often looks like this: apply, patiently wait, receive a denial, appeal. I was hesitant to seek any type of job, but living solely on disability benefits with a child, three dogs, and six fish was starting to stretch the limits of my sanity.

While receiving Social Security Disability Insurance (SSDI), one can earn up to $1,350 per month; anything over that is considered substantial gainful activity. (For people who are blind, the limit is $2,260.) Earning more than the limit can wind up costing you your monthly benefit. So I had to weigh my options very carefully.

What if I started to have flares again? What if I got sick and couldn’t work? These fears are valid, but the biggest concern was this: If I could no longer work, would I have to go through the same steps I’d already done to apply for disability again?

After a lot of research and a fair amount of Googling, I found most of the answers I was seeking on the SSDI website. In my case, the answer was an SSDI trial work period, which allows you to test your work abilities for nine months.

Discussing all of this with my disability case manager helped provide clarification to make the best decision. If you have similar questions about whether to return to work, please consult your case manager, attorney, or disability advocate, who can help to clarify your options.  Also, check with your physician first to ensure that you won’t potentially harm yourself physically or exacerbate your disease symptoms should you decide to return to work.

Another reason I considered returning to work is that while I was on disability, I struggled to find my self-worth. The emotional toll was challenging. I decided that I’d devise a plan to change my life.

You can’t always change the hand life deals you with, but you can change your reaction to it. The first thing I did was to get control of my health. I started eliminating stressors, eating a healthier diet, and exercising.

My joint pain began to decrease while my mood improved. I started to have more energy than I’d had in years. I still have flares, but they’re less intense now.

Eventually, I found a remote position that allows me to work from home. Because I’m immunosuppressed, working around people increases my chances of illness, so I was able to find something that works for me.

I hope this ride I’m currently on doesn’t end anytime soon, but at least I know I’m prepared if it does.

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.


Rachel Hillary Lando avatar

Rachel Hillary Lando

Amy, thank you for tackling this huge topic and sharing your experience. I have been living with disability benefits for 5 years, and this is STILL a difficult aspect of my life to navigate, I'd love to hear more from others on this somewhat suffocating policy that I've seen friends hotly debate for months. "If I go back to work, I'll maybe have a better quality of life but won't be able to afford health care or my care takers who feed me." It's an impossible decision: live on 2600 working part time (plus possibly SSI with the SSDI) or work without access to disability healthcare... how does anyone choose?

Stacy avatar


Working part time and receiving ssdi benefits and health care as long as part time pay is not over 1,300 per month

Mary Hill avatar

Mary Hill

Would it be of any benefit to apply for disability if you are retired. I have Scleroderma, its hard to make it on income of $830.? I also have Reynolds and Fibromyalgia.


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