It's a Shame - Part 2: Feeling Defeated
“The absence of self-love is shame. Guilt is feeling bad about one's actions, but shame is feeling bad about one's self – failure, embarrassment, weakness, overwhelming worthlessness, and feeling disgracefully 'less than' one should be.”--Jesuit priest Fr. Gregory Boyle
I need to talk about shame some more. As I mentioned in my previous article, when you have COPD, or any chronic illness, you suffer not only physical pain and limitations, but mental anguish such as depression, anxiety, and, not least of these, guilt and embarrassment.
No one should live without self-love.
More things we want our healthy friends, family, and doctors to know about the societal shame of having COPD.
We want our doctors and friends and family to believe us when we talk about how COPD makes us feel.
“You feel your voice is not heard, and when it is, it is judged, so more and more you just quit speaking.”--L
When I was first going through the process of being diagnosed with COPD I wound up at the ER a couple of times. I was so short of breath I was on the verge of passing out, barely able to talk. They administered a nebulizer treatment and gave me oxygen and I eventually got better. Every single time I told the ER I had COPD, no matter where the facility was, the doctor would tell me I didn't. Two of them actually told me, “But you don't look sick.” Of course not, once I could breathe again. What does sick look like, anyway? One of them told me my lung x-ray was clear; it just showed inflammation, so he didn't know why I was there.
Coming out of each ER I felt defeated. I started to wonder if I was imagining things. I started to wonder if I was crazy. I remember sobbing as my husband comforted me, saying, “It's not all in your head. It's not.” I refused to go to the hospital after that. Which wasn't smart. Luckily, I learned how to manage my shortness of breath with medications and breathing treatments at home.
I know I'm not alone in feeling that sometimes medical staff doesn't listen to us. Sometimes we also feel like our loved ones don't either.
“'I'll come over ever day and we can exercise together, we'll get you back in shape in no time' (a well meaning neighbor). They don't want to understand the condition, they just see that I'm overweight.”--D
We love our friends and family. We know you want to help us. We know most of you want to understand. The best way to do that is to listen to us, really listen to what we're actually saying. Sometimes there's just no “better way” to deal with our pain than what we're already doing. When we say we can't do any more, let us stop and rest without telling us to push ourselves.
Please believe that we're trying to do what's best.
A final note.
“Empathy’s the antidote to shame. The two most powerful words when we’re in struggle: me too.” —Brene Brown
Me too.
You are not alone.
I want to tell anyone with COPD, or other chronic illness, that you're not alone if you feel any of these struggles. And if you are feeling lonely or alone in your illness, find a support group like COPD.net online and as a Facebook group. Find a community where you can ask questions, read helpful articles, and just vent if you need to.
Empathy is a strong emotional peace keeper. Some of the general societal shaming we face is a result of ignorance. There's a lack of understanding how hurtful memes and careless comments affect us. There's a lack of understanding of how our sickness affects our body and our capabilities.
Let's help them.
Let's share our stories with the world.
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