What We Need to Hear and What You Can Do
"Oh, honey. I'm so sorry. I know you have COPD and you're just exhausted. So what can I do for you?..”
My friend rubbed my upper arms as if she were warming up someone who'd just come in from the bitter cold. Her touch was like a lifeline. It meant everything. It, along with her sympathetic smile, spoke volumes beyond what her words, her perfect blessed words, could say. Simply put, I felt like me again. There were so many times in the past my dear friend had hugged me, or touched my arms, or squeezed my hands, without any thought other than we were friends and friends reassure each other.
"They told me I had to park in the parking deck so I did and had to walk a block to get here. I just found out that there's handicapped parking in the back of this building I can use. Could you get my car and park it there for me? I just can't," I asked.
A block was far more than I should, with stage two COPD (at the time), walk but I had to; I was with my young son and if I collapsed it would terrify him. Now he knows how to help me. So I had plodded on, working harder and harder for breath, sucking in oxygen but it doing nothing, and trying to hide it from him. Once we reached the building we needed, he ran to play with friends and I slumped shakily on the front stairs, determinedly not passing out, until my inhaler worked its super powers and I could breathe again. It took some time, and I had just stood up when my friend found me.
With a cheerful, “You got it, babe,” she gladly took my car keys and started walking off. A few steps away she turned around, “Hey, we're going back to my place to order pizza and unwind after this shindig. We want you there too if you're up for it. Love ya.”
This event I attended was a life changer for me. After it was over and I staggered back to my car, I remember having such a hard time that, even though it was just behind the building a few yards away, I laid down in the parking lot, gasping for breath, unable to move, to get to my inhaler. My son had gone ahead and was already in the car playing with some toy. I finally got my inhaler and after a few more minutes I made it to the car okay. A different friend had not seen me collapse but showed up and offered to drive. I have good friends. Later, all that walking put me in an exacerbation and in bed for six weeks. If I'd had to walk back to the parking deck later that day I never would have made it. I can't imagine how sick I would've been afterward. I am forever grateful to my friend.
She said and did everything to show me she cared. She said and did everything right.
There are many insightful articles about what not to say to someone with a chronic illness. These are good guides to go by. There are also articles about what people with COPD would like you to understand. Now I'd like to talk about what you should say to us and what we need to hear and why. So to break it down, using my friend as a wonderful example, here we go.
"Oh, honey. I'm so sorry."
It was the right amount of sympathy without pity. A diagnosis of COPD is a big ol' scary thing and a terrible disease. We would all like a little sympathy; bad things should not happen to good people. Meaning us. Saying you're sorry that this has happened, without judgment, is music to our ears. You're sympathizing with our plight and letting us know you care.
"I know you have COPD and you're exhausted.”
It was much, much later, like years later, that I realized what this phrase meant. It meant: “I looked up COPD to understand what you’re going through. Now I know why you're so tired.” She validated how I actually felt, my utter exhaustion and breakdown just from walking a block.
When you have COPD your life changes. You realize there is a new way you must live, a new you you become, because of the disease. This is an illness that limits our breathing and that is everything. I had no idea that limited breathing affects other organs, like the diaphragm and the heart. It causes other diseases and problems such as osteoporosis, GERD, diabetes, glaucoma, sleep disorders like sleep apnea, anxiety, depression. I had no idea that limited breathing affects everything a person does, but it does. This wonderful study by Wissam Chatila, et al, for the National Institutes of Health explains it in more detail.
If you aren't familiar with the illness, you might think that it's all just about being short of breath sometimes. You may think that all it takes for us to feel better is an inhaler with those super powers. You might think if we physically push ourselves and don't sleep too much, we'll be all right. At least we'll get better.
If you think that way, I understand. And for some injuries and some illnesses - like the ones you can recover from - you're right. But for us with COPD, I must tell you - and I do so mindfully and with absolute certainty - there is no getting better and being all right again. We cannot be cured.
Now, we can, and do, live decades and decades with this illness, but we need to balance activity with rest. We simply can't physically push ourselves too hard.
Research the disease. Let us know you've done that. Validate us and what we're going through.
"So what can I do for you?" "You got it, babe."
"Can I help you by doing X?" might be a better way to phrase the question. I knew what I needed my friend to do in that instance, but most times it's not so specific. So offer to help clean our house, mow the lawn, make meals, drive us to doctor appointments, take us out for some fun like old times, play video or board games with us. There are so many things you can do that mean the world to us.
When you suggest something you are willing to do to help, offer it along with a specific time and date you can do it. Giving the thing you will do and the day and time you'll do it means it's more likely we'll agree and it's more likely to happen. Please offer this help in the meaning of friendship - the playful “you got it, babe,” that let me know she really didn't mind the walk. And if we say no, please don't feel rejected or like you did something wrong. Accepting help when we can't repay it is very, very difficult for most of us.
"Hey, we're going back to my place to order pizza and unwind after this shindig. We want you there too if you're up for it."
These two simple sentences let me know several things at once. The most important thing was that I was not only invited but wanted. Sometimes we feel so alone in our disease. Our friends are kind and don't want us to get sick because they wanted us to do something with them. So they don't ask. Our friends don't understand and get frustrated when we cancel plans because we don't feel good that day. So they simply stop inviting us. Our friends are scared of the disease too and don't know what to say or how to act around us so they just avoid us to spare the pain of it. We get it. It's understandable, natural. But it makes us lonely and alone. So keep inviting us. Please. Keep trying.
Going back to her place to order pizza and unwind was the perfect thing after a hectic day. I could rest on her couch, which I couldn't do at a restaurant. It was private, which helped me relax, which I can't do with the extra noise and bustle of being in a public place. It was pizza, which is delicious (sooooo delicious!) and cheap. Pizza is a comfort food; it makes you think of feelings of friendly gatherings and camaraderie, it was perfect. As to the low cost of it, I'm on disability income which pays me less than minimum wage so anything that's easy on my budget is good.
"If you're up for it" was the perfect way for her to complete the sentence. It let me know she was aware that the day may be too much for me and I may have to cancel at the last minute. She allowed me the comfort of knowing that canceling was okay.
This one kind of explains itself. We all want to know that despite our illness, despite the ways we've had to change, despite everything, you still love us. We need that warmth, that closeness. So say “I love you” to us. Say it a lot. Make the world better.
Do you have an exacerbation toolkit?