The Things People Say
I’m sure most of us are familiar with the term "invisible illness". This is a term for medical conditions that are not physically obvious but are life-changing. They can range from mental disabilities to physical, from bipolar to fibromyalgia. COPD can also be considered an invisible illness. If you wear supplemental oxygen, it is obvious, but not everyone with COPD needs it or does not need it twenty-four hours per day.
Everyone with an invisible illness gets comments from well-meaning people that can be infuriating. Trying to educate them doesn’t work, so letting the comments slide seems easier, at least for me. Now, I just try to find the humor in them. Here are just a few common ones I have heard through the years before I was prescribed oxygen and some after.
You don’t look sick
Unless I am having a bad exacerbation, I don’t look sick. Dressed, hair is done, I am going through my day just like anyone else. I might be out in a store or out to lunch with my husband or a friend, just like any healthy person. Even as an oxygen user, I can take it off when resting. Many times in a restaurant, I will remove my cannula to conserve my travel tank of oxygen.
The comment proves how quickly we as a society judge one another simply on how a person looks. Few, including family, will take the time to learn about your disease. My own pulmonologist said to me one time, “You’re one of my healthiest patients. I’m not sure you need me.” Yet, he was the one that told me I would probably qualify for a lung transplant. I educate myself about COPD and do my best to manage it well, therefore, I don’t look as sick as some of his other patients. I have not been back to see him since!
Are you sure you are not just imagining it?
I actually heard this comment from a very close friend. I can no longer tolerate being near cigarette smoke odor. My airways close up and I cannot breathe. The last time I was at her home, I almost had to call an ambulance. I stopped going to her home, but I also found it difficult being in her car. Eventually, the friendship ended, which is still hurtful.
I wish others understood the effect fragrances, chemical odors, and many others can have on our ability to breathe. I can’t go into some of my relatives' homes because of their use of scented candles and air fresheners. I can no longer be at my brother’s campground when they start lighting the campfires because of the smoke. I miss wearing perfume. Even laundry detergents are too strong. I use a fragrance-free brand. It is not my imagination. I don’t want to give up friendships or not going to an event because of fragrances. However, I also do not want to go to the hospital because of it, and it has happened.
Has anyone ever said something insensitive to you about your COPD?
You can do it, just power through
No, I cannot. I try very hard to live the life I want to, but there are limitations. I am not faking it. I cannot power through going for a walk on the beach with you. I cannot breathe. I would love to. I miss walking on the beach. I cannot be up at the crack of dawn to go take a yoga class. It takes a few hours to get my lungs moving, take my medications, and allow them time to work.
I am on oxygen so therefore I should be able to do anything. Have you heard that statement? On more than one occasion I have. The oxygen helps me to breathe a little easier so I don’t further damage my body. It also helps provide a better quality of life, but there are still physical limitations.
These are just a few common statements that I hear. What other ones have been said to you and how do you answer them? Let’s talk about it in the comments or share a story about something you have been told by clicking the button below!
How has your experience been navigating the healthcare system as someone with COPD?