Understanding COPD cannot be done unless you live it. That is really true of any illness. True understanding comes from experiencing daily life with the symptoms, particularly the worst days. So many times I have seen the statement, “I wish my family and friends understood.” I have said it myself on many occasions. After having a particularly frustrating day with breathing, coughing, and feeling exhausted, I opened my journal and wrote. I wrote to no one in particular but wanted to scream the words hoping someone would hear.
Tired of it
Today is a bad day. I feel as if a three-hundred-pound weight is pressing against my chest, slowly suffocating me. My ribs are sore from coughing. My blood sugar is high from all the lozenges, trying to ease the coughing. I don’t want to complain, nor even want to talk about my illness anymore. I’m tired of it, so you must be tired of it too.
I have so much to do. I want to be the person I used to be, the wife, mother, friend, sister. We’ve been friends for years. You slowly left me when I needed a friend the most. I truly cannot do the activities we always enjoyed together. I don’t have enough breath in me. I’m sorry it hurts you to see me like this so you don’t want to visit. It hurts me too. I never thought loneliness would be part of my vocabulary, but it is now.
Every single moment
What is COPD like, you ask? Imagine waking up every single morning thinking about breathing, wondering if it will be hard or easy that day. Most people don’t think about it. I think about it every single moment of the day I am awake. Much of the time it is subconsciously, but it is always there just below the surface.
My lungs rule
I calculate how many steps I have to take to do anything. Is there a place to stop and rest? When I am out of breath, will it come back? When? Ten seconds of gasping for air can seem like ten hours. Do you know my breathing is dictated by the weather? It is raining, or cold, or humid. These won’t be good days. It is sunny, the dew point is fairly low, the air quality is good, it will be a pretty good day for my lungs. My lungs rule every single day of my life, every hour, every moment.
Wants and needs
Understanding and compassion
I want your understanding, I do not want your sympathy. I do want your compassion. I want your company once in a while. Reach out to me with an invitation to something I am able to do. A cup of tea and conversation at my kitchen table will bring me a lot of joy. A text saying how are you today would mean so much. I can still do many things, but it has to be at my pace. I have an illness that is stealing my breath, but I am still me. Please see that.
Which of these is most important to receive from loved ones?
In return, I promise to do everything I can to help myself. I take my medicines as directed. Exercise is part of every day as taught in pulmonary rehab. I do my best to take care of my home and myself. I have joined support groups to learn how to live with this disease. I will not give in to it and continue to fight for every breath.
Truly, I am grateful for every moment I have. I do not ask for help lightly, so when I do ask, I really do need it. What I need you to understand the most is I am not lazy, I am not faking, and I am trying my hardest to live.
Do your family and friends understand COPD? Are they helpful or tried to become knowledgeable about the disease? What do you want them to know? Click the button below to share!
Editor's Note: We are heartbroken to share that Carol passed away in February of 2022. Carol's storytelling and advocacy will be deeply missed, but her legacy lives on through her articles and in all the people she inspired.
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