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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.

Other Articles in this Series:

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • nedra
    1 year ago

    I have come to grip with my limitations and just have to give it to them straight. I have had the same GP for 40 years and very fortunate to have him. Find one that understands.

  • Barbara Moore moderator
    8 months ago

    Hi Nedra, You are a lucky one to have a doctor for 40 years and one that you like and trust. Thank you for your advice. Barbara (Site Moderator)

  • Leon Lebowitz, BA, RRT moderator
    1 year ago

    Hi nedra and thanks for your post. You’re very lucky to have had the same physician for 40 years. This is especially true because you’re pleased with the care that has been provided to you throughout the years.
    We appreciate you sharing your experience with the community.
    All the best,
    Leon (site moderator)

  • Andrew347
    1 year ago

    I can relate to this 100%. My problem is not shortness of breath but air trapped in my lungs. I went to the emergency department at my local hospital and all I get is everything is OK, yet keep taking my meds. The specialists kept telling me my spirotromy exam was normal, and yet I gagged and chocked and wheezed like an old car engine upon exhaling. I was latter told by a spirotromy technician, “there was no way on earth your breathing is normal as your on the gold standard with a 76% lung volume capacity in exhaling.” My CT scan shows emphysemia, however, the doctors here are going by the x-rays and will not issue a medical note for limitations as to the type of work environments.

    My resperologist lungspecialist was going to cancel my CT exam as she kept double talking and said my breathing results are near normaI, then she said, “We can’t establish a base line for your breathing, we do not know where you start or stop. Everything is inconclusive, the xrays shows nothing wrong.” One doctor didn’t like my breathing after a brief bout with pneumonia over the Christmas holidays, she ordered a follow up chest x-ray and said it was normal. Yet at the same time they did not enter any unusuall breathing trouble on the followup xray to the pneumonia. They found the pneumonia gone, however my emphysema still lags on. Once you have one underlying lung condition your susceptible to others. I got a pneumonia shoot.

    I have a chronic cough that has lasted a year or so, acid reflux when drinking coffee or heavy stuff, I stopped rightaway in taking the heavy cafene stuff in drinking. I am on three puffers and coughing and gaging at times even in the doctors office, yet they still go by the xrays as the facilities here do not provide a CT scan I had to go 45 minutes away for that.

    I never smoked a day in my life, neither do I drink alcohol of any kind. If everything is OK why am I on meds with breathing problems?

  • Barbara Moore moderator
    8 months ago

    Hi Andrew347, I am sorry to read your story. Unfortunately, all too true. I am happy to hear that you are managing your own symptoms as your doctors scramble to figure it out. You are your best advocate. Barbara (site moderator)

  • michelle.vincent moderator author
    2 years ago

    Thank you so much, Janet. I’m so sorry you’ve felt that way but I’m glad my article let you know that you’re not alone.

  • Janet Plank moderator
    2 years ago

    Michelle, thank you for writing this. So often I have left the doctors office feeling empty, frustrated, and lost. You touched me with your understanding and empathy as you have mentioned. Thank you for this!
    Janet (site moderator)

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