It's a Shame - Part 3: What It Means to Be Strong

“Empathy’s the antidote to shame. The two most powerful words when we’re in struggle: me too.” —Brene Brown

Before writing this article, I spoke with many people who have chronic illnesses to gather their thoughts on shame. I wanted to see if their experience was similar to mine. All across the board, it was. This spoke volumes to me.

It means that there are stereotypes of sick people out there. And they are not positive ones.

Healthy people may not have any idea that there's a lot of stigma connected to being permanently ill. They may not see it if they don't experience it. They may need us to help them understand.

So let's help.

Here are more things we want our healthy friends, family, and doctors to know about the shame that comes with COPD.

We want everyone to know we do try our hardest.

“I still feel guilty when I have to say, "I'm all done. I cannot do more without paying for it for the next two days."--C

Sometimes sickness and limitation are seen as weaknesses, and society does not like weakness. Unless that weak person overcomes their limitations (see any Hollywood movie for reference). We live in a world of slogans like “No pain, no gain” “Pain is weakness leaving your body,” “Only actions give life strength,” and “Courage is not having the strength to go on, it's going on when you don't have the strength.”

They're only partially true when we talk about people with an illness like ours. And they're a harmful mindset to us.

“I wonder how many times we have pushed ourselves way past our limits so we could prove we can do it? Then have to recover twice as long?”--K

Those “motivational” beliefs about what pain and strength are tell us to keep pushing beyond the pain. You just shouldn't do that with COPD. Pushing yourself too hard will only end up making you sick or putting you in an exacerbation.

“I think another thing to address is shaming of ourselves .... I look in the mirror and am often harder on myself than any other person can be...Often the pressure I put on myself makes me want to crumble, but others depend on me.”--S

Well meaning people give us advice to “just exercise more,” “you should try harder” and “push yourself.” We feel this. We do it. We go further than we should to make ourselves feel and look stronger, less “different.” We want to defy our limitations. We want to defy our illnesses.

We want to deny our illness. But we can't.

To us being strong must mean learning to be gentle with ourselves. Being strong means letting ourselves rest when we need to, without guilt. Being strong means doing what we can - and then stopping. Being strong means having the fortitude to look our illnesses in the face, and then embracing it as our reality. Only then can we understand how to take care of ourselves so we may survive longer.

I think my friend M said it best:

“There is this "bootstrapping" myth that if someone just tries hard enough, they can overcome anything. It's a hard lesson when you find out that isn't true, that some things can't be overcome, they can only be worked around. Admitting that you have limitations and trying to observe and deal with those is not quitting or being weak, it is being smart and surviving.”--M

After three articles (see part I and part II, there is still more we need to discuss. Please look for articles Part IV and Part V in this series.