It's a Shame - Part IV: Guilt and Judgment

“I felt ashamed."

"But of what? Psyche, they hadn't stripped you naked or anything?"

"No, no, Maia. Ashamed of looking like a mortal -- of being a mortal."

"But how could you help that?"

"Don't you think the things people are most ashamed of are things they can't help?” --C.S. Lewis

When you have a chronic illness you may be surprised at the amount of pure shame you feel about it. Shame for many things. It's time to talk about these, to tell our stories, to help people who are well understand what we go through.

This is the fourth part of a five-part series on how we, as COPD suffers, feel guilt and are made to feel guilty by others because we're sick. The other articles can be found here:

• Part 1
• Part 2
• Part 3

We want people to understand our weight being over or under ideal isn't our disability.

“I feel like my body betrayed me. I'm so thin and so weak.”--I

Many patients who suffer from COPD, usually emphysema, lose a lot of weight and muscle tone. When a close friend passed away from it she was very frail, just skin and bones. During the course of her illness, it was impossible for her to put on any weight. She had always been a strong, active, energetic woman and as her strength ebbed away, so did her vitality. It was hard for her. And it was hard for her friends and family, to watch. Some of us didn't know how to respond to it.

Sometimes I think it takes a lot of strength to love and help someone when they decline into weakness.

“I was active and fit when I was healthy, and then wrong meds and inability to move conspired to make me obese. Strangers shout at me that if I walked more, maybe I wouldn't be so fat. (I am frequently in a wheelchair.)”--B

Conversely, with COPD, usually with asthma and chronic bronchitis, we can gain weight. A lot of weight. Yikes, so much weight. It is really easy in the early stages to gain weight as a result of this disease. Smokers who quit often gain weight. Prednisone and other steroids are notorious culprits for packing on the pounds. Not being able to exercise much doesn't help.

“I get 'If you just lost the weight, you would be fine.' Nope. Sorry.”--A

We want people to know that we're overweight because we're sick, not sick because we're overweight. I was diagnosed four years ago and quickly gained over 50 pounds. I'm no longer pleasingly plump; I'm on the chart as morbidly obese. Now there's a nice term that makes me feel good. (No, it isn't and no, it doesn't.) I try to eat well. I try to lose the extra weight. Because the shame that comes with being overweight in our society is immense.

We hate using the scooters at places like Walmart.

“Try being a 5'10" and 225 lb guy and appear healthy. No chair or limp though I do use a cane. I get more than my share of "looks.””--M

The shame here is a big issue. It might surprise some of our healthy friends; it didn't surprise me. Almost every single person with a chronic illness that I talked to didn't want to use the scooters at stores like Walmart. The stereotype of “only fat, lazy people use those” is almost more than we can bear. We may be glad that we have a cane or portable oxygen as if to show, “See? I really am sick, not just lazy.”

I always take my cane if I have to use a scooter anywhere. Always. I need it to walk from the parking lot to the store, but I need it more to deflect judgment. Without a symbol of mobility challenges, I'm a prime target. I am of working age, overweight, and I look healthy. Until I collapse from shortness of breath, that is. I'm not willing to get to that point.

Just Google Walmart scooters and you'll get gems like “What if I told you being fat is not a handicap” or “This scooter is for the frail, not the whale” or “The amount of people riding scooters at Walmart is too damn high!” There are thousands of images out there. “Southpark” even made a skit mocking people who need scooters.

Making fun of people who need help to get around is apparently hilarious to a large part of our society.

“I'll use the scooter at the store and criticize myself for not being able to walk. I'll criticize myself for looking healthy and using the handicap parking space.”--C

The shame is so ingrained in us we've internalized it. The struggle between not getting sick and not getting criticized is real. And for some of us the 'not getting criticized' choice wins.

I would like to leave you with the wise words of B:

“For all of you: Your worth is not measured by how you look or how much you can do in a given day. You are valuable because you are thinking feeling people!”--B

B is right and it is my hope that you do value yourself, because you are worth it.

Please look for the final part of the series, Part V.