The Path to SSDI: Tips and Challenges

Squares of people working in an office environment. A bolt of lightening strikes through the middle.

There is one day that many people with MS see looming in the near or distant future: the day they can no longer work. For some, the actual timing of this day comes as a surprise—and the resulting financial strain is huge. But what can be even harder is the process of applying for and possibly being denied medical disability.

For Mitch Sturgeon, the answer to it all became obvious. Not easy—but obvious.

Sturgeon recognized that disability was a ‘when’ and not an ‘if,’ and so he scheduled the last day he could work, before his body could make the decision for him.

We posted his story on the Facebook page on June 8. It struck a chord. More than 100 of you reacted, and more than 40 of you commented.

Here’s what you had to say.

“Timing is everything, I quickly learned.”

If there is any takeaway to be had from Sturgeon, it’s that the disability process works best for those who apply well before it becomes a dire need. Some recommend applying as early as two years before it’s necessary—as the process can take two years, give or take. Those who only apply once they’re already desperate may not be able to sustain themselves during the wait. What’s more, the government may question how you lasted so long without aid and may deny you the much-needed assistance. So, apply. And apply early.

“I wish I had known more about how disability worked before I applied. Timing is everything, I quickly learned. I kept thinking I’d be able to return to work, so I put off applying. When I finally came to realize that wasn’t going to happen, I was denied.”

“Don’t go into it thinking you’ll get the help anytime soon. Most people took two years to get approved.”

“Getting denied from SSD is not the hard part; it is the waiting periods in between.”

If and when you do apply, be prepared for a long wait afterward. That said, if you start the application process early, and with the awareness that it is a long wait, then you’re better prepared for what comes next.

“Getting denied from SSD is not the hard part; it is the waiting periods in between and the appeal process as you are at their mercy. All while trying to stay stress free and calm during this. My walk into this hell is the worse of the worse. [sic]”

“I was finally given social security disability after I hired an attorney.”

This is, in many ways, a legal battle. To obtain disability, you’ll need to work within a system, and it’s a system that many of us won’t immediately understand—especially if your first exposure to the process is your own application. When you can, stack the deck in your favor and get the assistance of a lawyer. In the event you’re denied the first time, apply again—this time, with a lawyer’s help.

“I was finally given social security disability after I hired an attorney. Get your medical records from the doctor and read them. It will help you refresh your memory and get a complete picture of progress of the disease. It really helped me.”

“My HR department came to me and said that I needed to apply for my long-term disability through the company provided benefit. They told me that I qualified. I did, but Prudential denied me. I now know that so many of these companies deny you. The ERISA laws are not written in your favor. My company was not willing to alter my job to adjust for my needs. I had one week to make a decision. Get fired or go on disability. The stress was intense. I think that the waiting time for SSDI is too long. And then if you are denied, you need to get lawyers.”

“They kicked me off of disability after two years because I was ‘too holistic.’”

One of the hard parts of insurance is that providers often don’t support Eastern medicine, or any plan that doesn’t include prescribed medicine. Unfortunately, many with MS are finding that holistic therapies allow for a healthier, better-feeling everyday, even if it means going without disability. It’s a decision that may not be right for everyone, but is worth considering. For many who believe in and follow the advice of Eastern medicine, this route can often bring lifelong healing.

“They kicked me off of disability after two years because I was ‘too holistic’ even though I took their medications and saw my doctors regularly. I fought with a lawyer for three years. Had it since I was 7. I now use cannabis and celery juice instead of the multitude of pills they’d prescribe. No side symptoms and no big brother over my shoulder constantly. The stigmatizing belief that ‘you need to actually look sick’ is degrading and bad for mental health.”

“I’m in the beginning process of disability now and it’s completely overwhelming.”

A few of you shared how utterly overwhelming you find the process. We wish there were an easier way. The process takes what it takes, but it’s our hope that you’re able to connect through and vent about the process, chat with others on the same journey as you are, and to find hope in the success stories of those who started before you. You’re not alone.

“Thank you for sharing… I’m in the beginning process of disability now and it’s completely overwhelming….”

We wish to say thank you to everyone who shared their journeys. We thank you for your truth, kindness, hope and courage.

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