It's a Shame - Part V: Ideals and Stereotypes

“If we can share our story with someone who responds with empathy and understanding, shame can't survive.” --Brene Brown

So I am sharing our stories.

Talking about shame and illness is important. Healthy people may not understand what we go through since they do not face living the rest of their lives in sickness. So let's help them.

This article is the final part of a five-part series on COPD/chronic illness and societal shame. The other articles can be found here:

• Part 1
• Part 2
• Part 3
• Part 4

We've covered a lot of ground: Sometimes we blame ourselves for being sick. Sometimes society blames us for being sick. We may try our hardest but still feel ashamed of not being able to do more. We may try our hardest but society still tells us we're lazy. Sometimes we're ashamed of being over or under weight because society is very harsh on people who are not within the normal range of fitness. Sometimes medical staff and/or friends and family don't hear what we tell them when we describe what we're going through. And finally:

Sometimes we don't live up to society's expectations of its members and that makes us feel guilty.

“Canceling plans makes me feel like I have failed.”--B

“And if you do it too often, people just stop inviting you.”--A

Sometimes we have to cancel plans with our friends because we get caught in a flareup. And we have to cancel again. And then again. We want to join in the fun, though.

“When I stand up to put away my chair I get a variety of looks from shock, "I have seen a miracle" to disgust/distrust "She can walk! It has to be a scam!"--B

Maybe our actual limitations don't match the usual preconceived notion of what it looks like to be sick. Sometimes we can use our legs for short distances and can stand for short periods—but we need a wheelchair or a scooter to carry us further for varying reasons.

“I used to be so put together and stylish. Now I wear lounge pants and t-shirts at home. I don't want my friends to see me like this.”--V

Maybe we don't shower every single day because bathing costs a lot of energy, sometimes putting us into a flareup.

Maybe we don't get our hair cut or colored or get our nails done at a salon every month. They're very tiring and we can't afford those luxuries on disability income, anyway.

Maybe we don't dress up. For comfort. Or because dressing causes us to be short of breath and the easier it is to get dressed, the better. Or because comfy clothes can be cheaper and cheap is good on our limited disability income.

“My biggest shame comes from not being society's ideal mother. I know no one can live up to that but somehow that's not comforting.”--M

Maybe we can't be the parent we want to be. For me, this is a huge issue. I can't do crafts and decorating to make all the holidays pretty. I can't go ride bikes with my son anymore, or go skating with him. It takes too much energy to make cute little lunches with veggies cut into adorable shapes and cupcakes that look like cartoon characters (not that I ever did that when I was healthy). Sometimes I'm too tired to be present for him. That's the worst of it all.

Maybe our house is a mess. We can't spend the energy to clean house. Or maybe we have no help and no way to hire help. We do clean what we can.

We want help to stop the stereotypes.

"At the end of the day, just don't make assumptions. You really do need to walk a mile in someone's shoes to understand their trial and tribulations."--K

So, friends and family, caretakers and medical professionals, help us spread the word about what we're going through and how damaging the negative stereotypes are. Talk to people, share articles like this one, call someone out who puts down a disabled person. Call out your politicians. Be mindful of what you say to others, especially those people whom you do not know. If nothing positive can come of your words, don't say them. It's as simple as that.

“I know many of you are very active, spirited people who have been slowed down by your illnesses. Just in case you need to hear it right now, continue to fight the good fight. You are worth it.”--K