Applying for Disability Benefits

Posted on April 02, 2018   |   
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This blog post was written by Cynthia Flora, patient advocate and head of NTM Support Group

Applying for disability with the Social Security Administration (SSA) can be a daunting task, but also is working with chronic lung conditions. My best piece of advice is EDUCATE YOURSELF AND PUSH FORWARD. If your symptoms and/or side effects from medications are making it difficult to work, think about getting more information and possibly applying. Typically, this process gets more difficult each year as the agencies have less money and our population ages. The level of difficulty will depend in part upon your local office.

I was lucky enough to find knowledgeable, kind employees that I could sit down with and actually helped talk me through the process. Go in armed with a clear one-page synopsis of dates, diagnoses, symptoms, and ways your condition affects your work, etc. You can always expand from there. If you cannot go in person and have to do it via phone, I would not recommend spending much time with a worker who is not being helpful, even though you may have to wait for another phone rep. Keep in mind that a bit of kindness and gratitude on the phone often goes a long way when you are asking someone to help.

Everyone is on his or her own journey. As for me, not long after I began a three year stint on the "big three antibiotics", it was obvious to me that my new job should be staying well. Exhaustion and the fear of getting the flu or an upper respiratory infection every time I used a phone, computer, or fax machine that a sick co-worker had just touched made work a huge impediment.

In general, the older you are, the sicker you may be, and the more difficulties you face doing your current job are key factors. You do NOT want to put a brave face on your condition. You want them to understand how difficult your worst days can be. If awarded disability your monthly payment will be the amount you would receive had you remained working and applied for Social Security at your full retirement age. This varies with age due to the government chipping away at benefits. You can look it up on your individual SSA account or call the SSA if you can't figure it out.

The government has a blue book that lists diseases that qualify for disability. Bronchiectasis is one of them, as are numerous immune disorders. You can find the list at

Chronic lung infections are another category, which is where NTM would fall. It used to be listed as an actual illness, but I could no longer find it when I looked to write this post.

That does not mean that NTM lung disease will not be an illness that helps you qualify for disability benefits. Often times, it is a combination of conditions that makes people eligible for this benefit. The key will be documentation and comments from doctors treating you for each condition. The end goal is to prove that you are no longer able to perform your current job or one similar.

Do not let yourself get caught up in all the particulars for respiratory factors. I did not have a FEV or O2 count low enough to qualify, but I did have fairly extensive bronchiectasis and had been on the big three for NTM/MAC for more than a year.

I also have Sjogrens Syndrome (which qualifies) although I did not have very debilitating symptoms as yet. Be sure to document any pathogenic infections such as Pseudomonas aeruginosa or Stenotrophomonas maltiphilia. Note any hospitalizations and duration of antibiotics or corticosteroids. It is up to you to prove you are ill and that your symptoms, side effects from medications and the demands of your treatment protocols are making work difficult.

Don't be shy about admitting to experiencing side effects such as brain fog (a real side effect from antibiotic use) if this applies to you, as brain fog makes it really difficult to complete job tasks. If you suffer from depression due to medication side effects or the overwhelming stress of dealing with a progressive, chronic condition list it as a side effect. Even if you are experiencing depression but are not taking drugs, you should still list it. You should also mention it to your general practitioner so it is documented.

Presentation is key. If you have a doctor that realizes your life is REALLY difficult and the stress and germs and demands of work are likely a big drag on your overall health you may succeed. I succeeded and am now able to focus on staying well instead of dragging myself through another day at work. This has made an enormous improvement in my overall life.

If you are denied first time around, as many people are, start the appeal process immediately. There is a big backlog in many area's judicial systems so it can take many months to get there. Hang tough. Keep documenting your illness.

One weird side will be forced to go on Medicare after you have been receiving Social Security Disability for two years. I actually had more choices and better health insurance through the Affordable Care Act than under Medicare. But it was well worth not having to drag myself to work those four extra years.