Getting Used to Being Disabled as a PF Patient

After being diagnosed with pulmonary fibrosis, I resisted seeing myself as disabled. My disease progressed quickly, and within two months I needed to use supplemental oxygen whenever I moved around. I used a portable oxygen concentrator in my work as a marriage and family counselor, even though it was a bit noisy during my sessions.

After six months or so, my portable oxygen concentrator didn’t produce enough oxygen for me to walk from my car to the parking lot. Even though there was disabled parking, it was too far from the door to my office. One of my wonderful colleagues, Laurie, decided to take matters into her own hands and had a reserved parking sign made just for me. Every morning the first therapist to arrive put the sign out to reserve the closest space for me.

Touched by kindness

I was so touched by her kindness, and it made a big difference to me. I was able to work for a while longer thanks to having a parking space close by.

When my doctor suggested I get a disability placard for my car, I resisted and began to cry. I said, “I don’t see myself as disabled.” He signed the form and told me to turn it in when I was ready. I turned it in a few weeks later, as I had got used to the idea. I’m now so grateful for it, because it has made parking and walking to the store, or doctor’s office possible. It also helps me stay independent for as long as I can.

Applying for Disability

Four months after I was diagnosed and using oxygen, my doctor brought up applying for Social Security Disability. I also resisted this reality because I was still adjusting to having a disease that would only worsen.  I started the process, because I heard it would take a long time.

I was pleasantly surprised that the application and approval process went easier than expected. 70% of most applicants are turned down for disability benefits the first time around. The Social Security Administration realizes that many applicants cannot wait years, or even a few months, for their disability benefits to begin. In 2008, the SSA implemented the Compassionate Allowances program to address the fact that some conditions are so severe that they warrant immediate attention.

According to their website, “The Compassionate Allowances (CAL) initiative is a way to expedite the processing of SSDI and SSI disability claims for applicants whose medical conditions are so severe that their conditions obviously meet Social Security’s definition of disability.”

There are many conditions that qualify a claim for faster handling under the Compassionate Allowances guidelines, and idiopathic pulmonary fibrosis is one of these (also pulmonary fibrosis). Finally, we get a break! I was approved within six weeks, and began receiving monthly disability payments five months later.

What I’ve learned about being disabled

It takes getting used to. Each step, each form, each fight involved a grief process for me. I would resist the new reality, get angry about it, allow myself to be very sad, and then eventually accept it. It is a messy process.

Say “yes” to every possible benefit you can. Get your placard, apply for disability and ask for help when you need it.

I don’t see myself as completely disabled. I think of myself this way, “My lungs are disabled, but I’m not. I’m the same person,  just with a very difficult illness and an oxygen tube!”

Be compassionate with yourself. This disease and the process we are going through is indescribably hard. There are no words to explain the reality we are experiencing. Be gracious to yourself, and speak to yourself with compassion,

Here is an example of of a compassionate conversation I had with myself:

“This is so horrible. I don’t want to see myself as disabled. I don’t want to get a placard, or have to apply for disability. I don’t want to face the reality that I have this disease or face being disabled, now or in the future. I have barely enough energy to get through the day and I’m supposed to do all this, too?

I have every reason to feel the way I do. At the same time, having a placard to park closer would help me so much. The process of applying for disability feels huge, and maybe I can get someone to help me. Getting some money every month would really help.

I think I’ll be kind to myself about how hard it is to handle this disease and all that goes with it. I deserve all the kindness, compassion and help I can get.”

I hope this column is helpful to you. I’d love to know what your experience has been getting used to being disabled, now or in the future. I know I am still learning.

I’d love to hear from you! When did you first realize you were on your way to being disabled? What has been the hardest to get used to? What are special allowances you’ve been able to benefit from? What words of wisdom can you share with us?

Please share this post with anyone you feel could benefit, or on social media. We’re in this together.

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Note: Pulmonary Fibrosis 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 Pulmonary Fibrosis News, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

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