Ask the Advocates: Withdrawing
We asked our COPD advocates to share about the topic of withdrawing. Here is what they each had to say.
Withdrawing with COPD
When I learned that I had COPD, I went through a wide range of emotions. I would share my diagnosis of COPD with family and friends and they seemed interested for about 5 minutes. I felt like I was being shut down. My mom changed the subject, so that was that. Some of the kids waited until we were alone to discuss things. We all decided it was too much for my mom to take. A few of my kids took an interest and they worry about me. My husband does as well. He sees me daily too.
Over time, I have found myself alone more and more in this physical world. I haven’t been able to go to the parties, to church, or even the barbecues. My family is worried when I’m around. Uncomfortable might be a better word. I find that I am withdrawing myself more and more. Staying home brings comfort too - I have less chance of having something trigger an exacerbation or an allergic reaction. By avoiding these things, I am withdrawing myself. When people do invite it makes me so happy and when they share photos, that’s the very best.
In past days, I was always the first out the door to join in something fun. As my COPD symptoms progressed, I began declining invitations. Some of my favorite activities included festivals, nature trails, and walking beaches, or shopping in the coastal villages throughout New England. Walking was getting more difficult. I stopped going to many of these places unless I knew there was a place to sit and rest.
Now I am on oxygen. I have a fear of going out alone. I am working on that but it is a slow process. If something goes wrong, I don’t want to be dependent on a stranger for help. When I get invitations from friends, I think long and hard before accepting. I go through a dozen scenarios in my head of what can go wrong. If I have to go somewhere new, anxiety takes over. How far is it to the door or the bathroom? What if I get short of breath? The head conversations are full of self-sabotage. I have created a bubble of safety within my home. With everything COPD has thrown at me, leaving this bubble is the most difficult to get beyond.
The word withdrawing is such a powerful word. I have definitely withdrawn from my old life. My circle of friends is no longer there, though I have made a few special friends in the pulmonary rehab program. I've withdrawn from socializing like I used to. Withdrawn from meeting people outside. I feel like I'm holding people up as I can't reach the speed of my friends.
It's so easy to stay at home and withdraw from socializing. Instead of going out and about I stay home withdrawn. It is so easy to stay in and not make plans. It feels safer to stay away from everything and just stay indoors.
Withdrawing creeps up on you without you realizing it and then it's a battle to get out of it. How can we get out of feeling withdrawn - a battle that once made me feel safer but is now making me feel irritated and impatient?
From the moment of my diagnosis, I began to withdraw from people and places. It became more and more important as my COPD progressed that I avoid people with viruses or colds and flu. As the years are moving on I am seeing fewer and fewer people in person. Now, with this pandemic, I am sad and lonely and pray that it ends soon so that we can come together again in a whole new way.
For now, it seems necessary to withdraw from society and into myself. It is so much easier to just be part of my home, my sanctuary where the days are predictable. I have a renewed interest in reading different genres, listening to music, and learning something new for free. Working with my hands, coloring adult coloring books with my new box of pencils, and watching funny YouTube videos leaves me laughing and grateful at the end of the day.
I can remember physically engaging in this kind of behavior when I was a very young (4,5,6) kid. If I felt uncomfortable in a situation (for 100 different reasons) I would quietly go hide somewhere until I felt strong enough emotionally to work up the nerve to go back.
One day, a neighborhood friend saw me sneak into a woodshed. He abruptly pulled open the door and scared the living hell out of me.
“What are you doing?” Freddy asked.
“Hiding,” I said.
“Why?” he asked. “What are you hiding from?”
“I’m scared,” I told him.
“Scared of what?” he asked.
“I’m not sure,” I replied.
“Well...that’s pretty dumb,” Freddy added.
And I realized he was right.
From then on, I did not hide – physically or emotionally – for any reason.
It would be emotionally soothing (I think) to withdraw to deal with all the nonsense and, sometimes for some, real pain COPD can bring you.
But I also realized that there was more constructive empathy coming from friends, family, and professional colleagues at the times I needed them compared to the useless self-compassion of withdrawing from them all.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to COPD?