I’d Rather Have No Disease Than Special Accommodations

I’d Rather Have No Disease Than Special Accommodations

younger than 30

I have been lucky that many of my friends, colleagues, and family members have quickly adapted to my new normal since my idiopathic pulmonary fibrosis (IPF) diagnosis just over two years ago. They are also aware of the need to be sensitive to my diagnosis and declining health, as those things still stir emotions. However, this doesn’t mean that they don’t occasionally slip and say something that seems insensitive. Regardless of the intention, sometimes the comments shared by those I am closest to can hurt me.

I experienced this recently when I overheard a comment about how “lucky” I was to be prioritized for a medical test. In some ways, I suppose the individual was right: I was able to get a diagnostic image done quickly that would give me answers to some concerning symptoms. But as an IPF patient, I wouldn’t necessarily consider myself lucky to get this test faster than other patients. Unfortunately, the reason my scan was prioritized is that I have a life-threatening illness. I certainly would trade my disease for a longer wait.

Thankfully, I know the intention behind these comments is not to be negative or even hurtful; it is simply a matter of people unaware of how the comments can make a patient feel. Since I know this, I often take those comments as an opportunity to educate others. I try to explain the symptoms associated with my disease, and the difficulties that come with living with a life-threatening disease, especially one that makes it nearly impossible to breathe. Most people I share this with are very sympathetic and apologize, realizing that I am indeed unlucky.

Priority boarding at the airport is another example of disease-related special permissions. IPF patients are not looking to “butt in line” ahead of everyone else who have been waiting their turn. Unfortunately, the reason we have priority boarding can be because we must set up supplemental oxygen on the plane. It also might mean that due to our disease, we are significantly weaker than those who are healthy and cannot carry our bags or even walk onto the plane without help. As an IPF patient, I can confirm that losing these abilities is not worth boarding an airplane before others.

Not long ago, I spent time in the United States with friends to celebrate my 30th birthday. Visiting a very monumental city, we spent a lot of time going in and out of tourist destinations where the lines were long. I was lugging around my oxygen concentrator, so it was not uncommon for my two friends and me to be invited to a priority line. My friends thought this was great, as it meant we got into venues faster and could scope out a place for me to sit down if needed, or seek out a wheelchair so I could safely get through the entire place we were visiting. While this was greatly appreciated, as it ensured I could balance out my physical energy with sightseeing and resting, I would trade my disease for the long wait in line.

My friends often joke about bringing my disability pass when we go somewhere with limited amounts of parking spaces, so that we can find a good spot. I suppose the bottom line of this joke is that I do need to bring my disability parking pass with me to avoid walking long distances from the first available parking spot to the door of our destination. Still, if given a chance, I would give up this special parking pass if it meant that I could walk long distances without oxygen or shortness of breath.

Sometimes what others see as perks of having a chronic illness comes from the misunderstanding of what it is like to live with a life-threatening illness. I find it helpful to educate others on why I get these special permissions, and that I don’t appreciate having them, but instead need them to get through my day.

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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.

9 comments

  1. Mrs. M C says:

    I agree with you regarding trading the illness! It is also interesting that when people see you using a wheelchair or a scooter to get around( I am not on oxygen yet), and well dressed with make up on, people give you funny looks as if you are abusing a privilege! I would most defined trade that ‘convenience ‘ off for the ability’s to walk unaided and without breathlessness and physical exhaustion!

    • Charlene Marshall says:

      Hi There,

      Thank you so much for reading my columns and contributing your comments – I always love hearing from readers! Wouldn’t it be nice if we could just swap out our illness in exchange for the “special accommodations” we receive as patients? I certainly would give up living with IPF to just go about normal every day tasks, like everyone else, if it simply meant I could breathe well. The exhaustion is also so hard to deal with, as it is not something others can see. Thank you for understanding my point of view for this column, it is always so nice to hear from others who “get it”. Take care and best wishes to you!

      Warm regards,
      Charlene.

    • Hi Mrs MC, I so agree. I too love taking care of myself. I usually put on extra make up and dress extra nice when I’m feeling awful. My motto is just because I feel sick I don’t have to look it. I also get these funny looks from people. They even get whiplash starring at me lol!!!. In the beginning I use to get irritated but now I’ve grown a thicker skin and just ignore them.

  2. Hi Everyone one of the things this disease does IPF is slowly isolating you from others. Im in my fourth year with this disease. I use to love going to the mall and visiting with family. Now just travelling to the venue leaves me fatigue and breathless. On Tuesday I had a case of cabin fever and accompanied my husband to the mall. Big mistake the traveling to the mall made me sick and I experienced chest pains and coughing. I also struggled to breathe. The ques were long as it was month end. A gentleman noticed my plight and told my husband to find a supervisor to help and have my groceries rung up so I could leave sooner. I was so embarrassed and my outing was ruined. I so agree it might look like privileges to jump ques and get special parking. I would give it all up in a heart beat to enjoy good health and day without pain. I did not sign up for this disease. Never even smoked a day in my life. Where is the fairness in all this. My lung functions shows decline with every visit but drs say I’m stable. When I end up in emergency they flip a coin which disease is he culprit as I have lupes and IPF. Or I have the clueless look of medical students with no clue of this disease and that drives me nuts when struggling to breathe and they want me to give my medical history!

    • Charlene Marshall says:

      Hi Dulecia,

      Thanks so much for reading my columns and contributing your comments. I am so sorry to hear of your struggles with this disease, it sure seems cruel, doesn’t it? Not being able to do the things I once loved, which were also social in nature for me, has been one of the hardest things to adapt to while living with IPF. It really seems so unfair, and people may see our special accommodations as “perks” but I always reiterate to them: there is nothing good about living with this disease. I would trade all the special accommodations to be able to breathe and enjoy good health, as you indicate above. I’ve never smoked either, and sadly it doesn’t appear that IPF discriminates between who is attacks. It is so frustrating! Hang in there, and please feel free to connect anytime. I know you’re in our forums community too, so we’re all here.
      Warm regards,
      Charlene.

        • Charlene Marshall says:

          I am so glad you’ve come across it as well Dulecia, and that you’re finding it helpful and informative. You are always welcome to vent and share… it really makes a difference when you know others who truly understand. That is us. Take care, and connect any time!

          Warm regards,
          Charlene.

  3. John Baron says:

    Interestingly, use of the term “Lucky” has also caused a bit of strife in my life as well. I was diagnosed with IPF almost two years ago, and have been on the UNOS lung transplant list since Feb 14 of this year (Happy Valentine’s Day!). Someone in one of my support groups objected to the term “lucky” when I used it to describe how I felt in regards to being able to even qualify for transplant. But I truly am LUCKY. Lucky to have a wonderful support system, a loving girlfriend, wonderful family and friends. Lucky to have a chance to get new lungs, lucky that I have great health insurance…the list goes on. I’m going to continue to use this word regardless of how it is perceived by others. I have really enjoyed your column since I found it last year. Keep up the amazing work, and THANKS! -John

    • Charlene Marshall says:

      Hi John,

      Thank you so much for reading my columns and contributing your comments – it is always great to hear from readers!

      It is interesting how everyone responds to the term “lucky” when it is used in association with IPF, isn’t it? When another one of my columns was published about why I still feel lucky despite my illness, there were several people on Facebook who responded with angry comments about the fact that I used this word. Each of us are certainly entitled to our own feelings, and I can appreciate how they feel, but I still use the term “lucky”. I feel as though I am as well – two years post diagnosis and still doing relatively well, all things considered. I’m so glad to hear you feel as though you’re lucky as well, and it sounds like you have a wonderful support system around you, for which I am grateful and happy to hear this from you. I continue to use the term lucky as well, especially in relation to others’ IPF stories, I do feel lucky and when I am in this mindset, overall I cope better with my disease. Glad you’re going to continue using it as well, and best wishes for a successful transplant. I’ll be praying for you!

      Thank you for your kind words as well, I really appreciate them 🙂

      Warm regards,
      Charlene.

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