Getting Used to Being Disabled as a PF Patient

Getting Used to Being Disabled as a PF Patient

Just breathe, passionate help for the PF journey
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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26 comments

  1. Faye says:

    I was diagnosed with progressive massive pulmonary fibrosis April 2016. I still work full time, and as of right now I don’t need o2 unless I’m walking too long. I still have 70% lung capacity, but thing are starting to get Really hard to do.. I was raised to Work for a living, it’s hard to get my head around the fact that I may be going on disability soon. I don’t like being so weak. I don’t even know where to begin the process. I have been missing a lot of work lately simply because I’m so tired! I call in sick and sleep for 16 hours! I tell myself I’ve accepted this disease, but still push myself to far, out of stubberniss I suppose. I hate this disease! How do I start slowing down and care for myself better? I do keep all my doctors appointments, but I always tell them I’m ok, I’m fighter..

    • Hi Faye, thanks so much for your comment. I know how hard it is to see a future where you will have to work less or stop working completely. My one caution to you is from my personal experience. I was a marriage and family therapist for 30 years, and I did not want to stop seeing my dear clients. I stopped accepting new clients, and then went to part-time, and then stopped completely. I let my desire to keep working push me to work a few months more than I should have. My heart started to be affected because it was having to work extra hard to provide me with more oxygen. I wish I’d stopped a little earlier because of this.

      You may need to talk with your boss and see if you could go to a part-time schedule or some other solution. Talk with your pulmonologist too…and let him/her know the changes you are seeing in your stamina, etc. Our challenge is to balance fighting the disease without harming ourselves, or speeding up the disease from being overly tired in the process. It’s not an easy process, but I know you can do it. It’s great to hear from you. Keep us posted. We’re in this together 🙂

      • Faye says:

        Thank You, and Thanks so much for sharing your story. I am already experiencing those heart problems, I’m 45 years old, work as a CNA/Transporter at a hospital, I don’t think I have an option for part time, I need a full paycheck. Lol.. Thanks Again for your reply😁

  2. You described my experience very well. I did not want to be disabled. I am 72 so not eligible for disability. I had a good income as a Realtor but that is gone. My self image went to heck. I had always been told that I looked younger than my age. Now I carry my oxygen to work. It is disheartening. I was angry and then depressed. Now 2 1/2 months after diagnosis, I am grateful for all I can still do. I still wake up each day and give thanks. My family and friends (especially my coworkers) have been very supportive. I have lost friends that I guess don’t know how to deal with my diagnosis. Hang in there. Every day brings a joy

    • Hi Marsha…thanks so much for your comment. I relate to what you shared so much. I’m so sorry for all you’re struggling with, and all the changes you are going through. It is a rough transition. I love how you described your process of being disheartened, angry, depressed and then grateful for all you can still do, with thanks. I’m so glad you have a good support system…that makes such a difference. Blessings to you, dear Marsha.

  3. Eileen says:

    I was “officially” diagnosed in April of 2013, though we had going down that rabbit trail since at least July of 2012. My mother died from IPF in 1993, so it was quite a blow to find out that I had the disease also. After I adjusted my mental attitude, I realized that my symptoms were relatively minor at that time. I did have to switch pulmonologist as I had one who was very negative and I did not need that to add to my burden. Best thing I ever did. Just started using supplemental oxygen this past February and have added pulmonary hypertension to the IPF. I have filled out a form for a disability placard and will present it on my next doctor’s visit – next week. The oxygen need was the hardest thing to adjust to and probably waited about 6 months longer than I should have due to pride. My doctor did not do automatic hall walks and sitting still, my oxygen level was usually at 94-95. Found out on my hall walk that I needed 6L! He was a bit surprised, but I think that the PAH added to that need, which is why he ordered the tests. I have discovered that people seem to go out of their way to be kind to me and shows me the best of humanity. I was afraid that my grandchildren might be embarrassed around me, but that’s not the case at all (my closest ones living nearby are 10, 13 and 15). All in all, it’s a learning curve and I appreciate your columns and even showed my husband the one of filling the oxygen containers for when the time comes.

    • Eileen,
      Thanks so much for your comment. You sound like you are handling this diagnosis and all the adjustments with grace and wisdome. So glad you’re going to get a placard…it helps so much! I’m so glad your grandkids have adjusted so well…you’re still their wonderful grandma, just with an oxygen tube! So glad my columns are helpful…It helps me to know that what I share is helpful to others and draws us closer together!

  4. I was diagnosed with pulmonary fibrosis in 2007. I am now on oxygen 24/7 Just so I can move about. Go to the doctors store and church what makes me mad is to see an enormous person in the store using a electric cart and filling it with all kinds of snacks and sweets. then I have to wait on a cart so I can so a little bit of shopping

    • Hi Charles…thanks so much for your comment. I know what you mean…being able to use an electric cart really helps with shopping, but so hard to have to wait for. I’m glad your PF is progressing more slowly than some. Blessings to you…

  5. Marilyn Jacob says:

    HI Kim, I was diagnosed with IPF in late 2008 and ended up on oxygen the last 6 wks before I received my transplant. I too was in denial and felt embarrassed to use oxygen in public. Fortunately I received my lung transplant on 4/5/10 so now 7 years later I’m still here. I was very much in denial about getting a handicap tag for parking when I see so many others in worse shape than I. My husband finally told me to talk to my Dr about applying for one. He said if anyone needed one I did so I got one. I rarely use it unless it’s raining or snowing. I accepted it when I realized that it was difficult for me to run in rain or push grocery carts through the slushy snow in the winter. No more in denial. Take care Kim, stay positive, accept help, pray and never give up hope. I promote Donating Life and forever grateful to my donors. God bless you!

    • Dear Marilyn…great to get your comment. Congrats on getting a lung transplant…7 years!!! I appreciate your encouragement and words of wisdom. “Stay positive, accept help, pray and never give up hope.” Amen! Will do! Great to hear from you 🙂

  6. Russel J Fabre says:

    It is amazing how those of us making this IPF journey can relate. For some the process is relatively quick. Others, like myself, are following the 3-5 year medium course. I was diagnosed in 2014 and took the attitude that “I can beat this”. As I think we all have. Then the realization that the doctors are right. I will get worse and there is no cure. I took every step kicking and scratching. No placard! Then gosh that would really help. Then NO DISABILITY! Wait a minute are you crazy? My disease has progressed in stair step fashion. Stable for a year and then an abrupt decline to a new level. The last low put me on the path for a lung transplant. After a week of physical and emotional rollercoaster ride it was determined that I would not be a suitable candidate because of a run in with Hepatitis C earlier in my life. Another challenge and another life compromise. But, I too talk to myself “Hello Morning, what good can I do today”? Guess what? We are prepping the RV for a month on the road. Hard? Logistically challenging? Going to be Fun? You bet!! “On the Road again, Just can’t wait to get on the Road again”!

    • Russel…so good to hear from you, and hear your story. Thanks so much for sharing with us. So sorry you’re not eligible for a lung transplant. At least you know, and you can live your life the way you want. I LOVE you are getting ready for your road trip!!! Your attitude and healthy balance of reality and living life to the fullest is admirable and a great example to us all. Have a great time, and let us know how you are doing!!!

  7. Gayle Hamilton says:

    I was diagnosed with IPF in 2010,but I think I had it for 2 or 3 years prior. I retired after 33 years in County government, a job I loved, because I was so tired. I enjoyed retirement but also had responsibility at home,because my mother-in-law was living with us. She had many health problems which kept us very busy. She passed in Oct.2015. Shortly after I was hospitalized with viral pneumonia. I had not required oxygen until this setback and I only used it at night. Now I use it all the time but I’m still on 3 liters so I’m stable. I try to pace myself with moderate activity. I am eliminating more but I do what I feel like. I am taking one of the new medications for IPF, Ofev. I seem to tolerate it well. I try to stay inside as much as possible. The only complaint I have with Oxygen is nosebleeds!

    God is taking care of me and I am so thankful. My husband is amazing in all he does for me. I am living my life with a greatful heart.

    • Hi Gayle, it was great to hear your story. Wow you’ve been dealing with a lot. I’m glad you are stable now and are able to keep active. I’m so glad you are doing so well on Ofev. I love your beautiful take on life…grateful to God, your husband and living life to the fullest! Amen!

  8. Russel J Fabre says:

    Here’s a new one for me. One that is definitely going to require a little bit of planning. In my career I have always maintained a very high level of First Response Training (I worked at a Nuclear Weapons Reservation). Unfortunately, I have driven upon accident scenes and heart attack situation several times in the last 30 some years. Today our grandson fell off our retaining wall and was screaming uncontrollably. I grabbed the first aid response kit and slung the oxygen backpack over my shoulder (I’m on 6 lpm continuously and keep tanks everywhere I can think of). I adjusted the oxygen flow to the highest level possible and off I went. I assessed his condition, no broken bones just a large scrape and contusions. Then the adrenaline stopped. The body said to me “Now you’re in for it”! Couldn’t carry him and we are now both now patients. Deep breaths and concentrated on remaining calm. I did carry him back to the house and we both recovered quickly. My training to quickly reaction to emergency situation almost got me in real trouble this time. Hard to change years of training.

    • Wow Russel…what a story! I’m impressed you could do this when you needed to. Even though you paid for it temporarily, I’m so glad you could help your grandson in a crisis. You’ve still got it Russel!!! So glad you both recovered quickly. Many Blessings…

  9. Anita says:

    Kim this is a wonderful article, as you can tell from the responses. Most of us seem to go through some version of what you experienced. My thanks to you and those who commented because there is so much commonality between us as we navigate the changes in ability, career and self image. Among many other changes. My gratitude.

    • Hi Anita…thank you so much for your very kind comment. When I agreed to write this column seven months ago my greatest desire was to provide a real perspective as a patient and help build a community where we could support one another. I’m so excited to know that this is happening! So glad you shared your wonderful perspective!

  10. MS says:

    Thank you Kim for your column and comments. the community of PF patients matters a lot- Unfortunately with doctors and nurses we are just a number and a payment- sharing our experiences and educating each other is the way to survive.

  11. Jim Hicks says:

    I fought the disease as long as possible. To deny and reject help was normal for me because I am the strong one. My family depends on me. Diagnosed 2013 with IPF, then my lung collapsed 3 times from the biopsy , no way to deny it now. I can remember complaining to my doctor about chest tubes. I was telling her how horrible it was that I was getting my 9th chest tube inserted. She replied that the day before she put two in a 12 year old boy, they were his 11th and 12th. This quickly put my thoughts in perspective and tears in my eyes. How blessed my life has been. No matter how bad life appears to be sometimes, it can always be worse. For me Disability was the hardest thing to accept. I was forced to stop working and had no choice, once again, there was no other option. There has been a steady decrease in breathing capacity and I have been placed on the Lung Transplant list, again there is no other option. In Life, some situations are out of our control. So fight to stay healthy! but realize also other want to help, let them show their love. Your article brought me relief knowing that others felt the same way. Thank you for sharing your feelings!

    • Hi Jim, thanks so much for sharing your story. Everything you shared makes so much sense. It’s normal to fight these realities, for as long as we can…and then adjust. I love your wonderful quote, “So fight to stay healthy! but realize also other want to help, let them show their love.” So much wisdom there, Jim…I know it took a lot of suffering to get there. It really helps me to hear everyone’s experiences too.

      • Carolyn Swanson LCSW says:

        Wow, I don’t usually take the time and read responses as I have today. I am a retired licensed clinical social worker and was fortunate that my diagnosis occurred afterwards. I think that I had it before I was hospitalized while on a parks and canyon trip in August 2015. I immediately starting using oxygen therapy and has been since. I flew back to Florida on oxygen and with a nurse. I am currently on the lung transplant program and hopefully this year will be the time for me to receive one. This whole IPF thing is a life changer. I think that I was in denial for a long time the seriousness of this illness. I just did make the cut off age wise for being accepted into the transplant program. Now that was hard to know that if you were over 68, you are not a candidate. Right now I struggle with the term being disabled even though shortness of breath has slowed me down considerably. Sometimes I think that I try and do too much attending meetings, trying to go to some events, attending church and serving on committees. I huff and puff and still push on. I think to sit down and do nothing would really be the end of me. What I hear from so many of you is the support that you receive from family and friends. Knowing that people care and are there for you is wonderful. It helps and it is greatly appreciated. I think that the more we lift each other up and send positive messages, the more it helps with this journey. That is what I call my life with IPF.

        • Hi Carolyn, Thanks so much for sharing. I had to retire after 30 years as a marriage and family therapist, so we worked in the same field. You are so right that this IPF is a life changer. So glad you are on the transplant list. It is quite a process to get used to being “disabled” and cutting back for the sake of staying as healthy for as long as possible. I am so enjoying being a part of this community as we support and encourage one another. Thanks so much for taking the time to share. I hope you will again 🙂

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