Things I Want My Family and Friends to Know About My COPD
1. It’s okay to hate this disease and be angry at it. I do and am.
I can’t be Den Leader for my son’s Scouts group anymore. I can’t play Calvin Ball (see the comic strip "Calvin and Hobbes" for the rules) with him anymore. He misses that kind of activity with me. We have talked about this a lot and I have let him know that it’s okay to be mad at COPD--not at me, but at the illness, which is a very important distinction--and that I am angry at it too. It’s a low down, dirty, awful, terrible, no-good disease. So get mad at COPD for all the things it took from you. You have a right to.
2. You can ask me questions about what I’m going through.
I really don't mind talking about being sick. Silence can be misconstrued as “everything is all right.” Well, I’m not all right but I am very willing to educate you about how I feel and what’s happening to my lungs and what my prognosis is, as difficult a conversation as that might be. And it’s important for you to know. So ask me.
3. I need help.
A wise woman I know once said that the bravest thing someone can do is ask for help. And it is because I have to admit I’m not invincible and I can’t handle everything and I don’t want to be judged harshly for it.
So this is me being brave. This is me, asking you.
4. I am always tired. Always.
Walk slower when we’re together. Let me sit when I need to. Some days I just need to sleep all day. And that’s all right. Let me.
5. I am lonely and would love company, but can’t cook, clean, and host for you.
I miss you, friends and family. I would love to see you. It gets kind of lonely when you’re housebound like I am. But when you visit, please understand that the house may be a bit messy and I may not be able to cook fabulous dinners like I used to (see number 3 above). I’m really not up to playing hostess and keeping a good conversation going all the time. Tell me that it’s okay. Tell me that it doesn’t matter. And just be with me for a little while.
6. I’m scared.
According to the World Health Organization, COPD is third leading cause of death in the world. My prognosis isn’t good and the progression of the disease scares me silly. It’s okay if it scares you too. I don’t want to think about it, and there are chances I could live a long, long time yet, but the reality stares me in the face every now and then. I have to prepare. Let’s have these conversations in an honest way and get things settled now. Let’s tell each other how much we mean to each other now.
7. I’m in mourning for my old self.
I am not the person I used to be just a few years ago. I can’t sing, dance, garden, travel, shoot archery or throw axes anymore. I miss that old me. Sometimes I forget how limited I am and then the breathlessness comes back with each step as a bitter reminder. It’s going to take some time for me to accept and grow to love myself as this new person. If you want, we can grieve together.
8. But I’m still me.
The goofy, weird, passionate and funny person you love is still here. I can still beat you mercilessly at Scrabble. You and I still share all the same wonderful memories we made together. More importantly, we can still make new ones.
So let’s go.
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