Applying for disability benefits in the US for ME/CFS and Long Covid

When my health collapsed in 2016, I tried to cling on, transitioned to part-time work, and then finally gave up my job. It was a big break for me to be able to fully dedicate time to my health recovery.

I didn’t apply for disability benefits. First of all – I had no idea where to begin, I wouldn’t even get a formal ME/CFS diagnosis until 2.5 years in, my mental stamina was greatly reduced, and everything felt overwhelming. The act of just getting in a car and going in to see a doctor and talking to them about my symptoms and situation was often exhausting on a physical, mental, and emotional level. 

My now husband was able to comfortably support us both, so I didn’t feel a reason to use energy I didn’t have towards something that could create a lot of work for myself with no guarantees. 

I’m well aware that not everyone has financial security, and obtaining benefits is crucial.

The team at the Open Medicine Foundation (an ME/CFS, Long Covid, and Chronic Lyme research and support charity) recently interviewed a disability lawyer with expertise in disability claims for people with Long Covid and ME/CFS.

This blog is not associated with the OMF. I am just sharing this resource, which seems helpful and informative.

Here is a bullet point summary OMF made of key points mentioned in the webinar (if you are currently employed, don’t leave your job before reading this):

Final words:

Our society often values people for their productivity. But I’m here to say, your value is inherent. I don’t know anyone who wishes they clung on to a job longer when they were ill. You owe no apologies for investing in your long term health and well-being.

I have several friends who did obtain disability (in the US, UK, and other countries), are glad they did, and who some years later significantly or fully recovered and are now able to work again. And often the work they’re doing now is more meaningful than what they did before.

There are better days ahead.

If you’d like practical and uplifting health recovery information, please sign up for our newsletter below. This blog is not medical advice nor meant to contradict what you have discovered yourself to be true. 

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