a woman surrounded by her support system of friends, family, and her nurse

Why?

“He isn’t here for me.” “He doesn’t help me.” “When I need help, she changes the subject to herself.” Do these sound familiar? You aren’t alone, others have felt that way before too.

Let's talk about this

Through the years, I have had my own experiences and have talked to many others who have had their own. Many struggle with a spouse, family member, or another person who just doesn’t get it, who doesn’t seem to be there for their loved one who has COPD.

It's a family affair

COPD is a family affair or as often heard, a family disease. That’s because it affects each person individually, including those who live with COPD and those who care for them. I’m not saying that the family or others really know what it’s like going through COPD physically or even emotionally. Each goes through their own physical and/or emotional health issues, as they too deal with our (yours and my) COPD.

COPD affects us all differently

Whether your support person is your spouse, a family member, or a paid nurse, aide, or housekeeper, they may react to your COPD differently. Your spouse and family might take things more personally whereas your paid helpers will likely stick to their tasks and not take upsets and your personal feelings to heart. I know that the worse I feel, sad to say, the needier I may get. I wonder if I’m the only one who gets that way.

Needing people or quiet space

I have asked my husband what he feels like when I get like that. My neediness sometimes makes me feel alone, possibly ignored. One day we talked about this. He doesn’t always know what to say when I’m sick or struggling. I tell him “I’m not upset, sometimes I just feel lost because I don’t know how or why I’m supposed to feel.” That’s definitely a poor me day. It does happen though, and I know it.

Hugs help

I tell my husband to just give me a hug. Sometimes I just want to breathe, to feel like my body is being renewed by the fresh air. To have the pain escape my body. I just want to be alive to clean and cook a meal. My mind says that I should be able to do this. My mind says I’m no different now than I was ten or even fifteen years ago. This body doesn’t agree, nor cooperate. I can go so long and then I’m done. Taking a break almost makes it harder to get going again, as opposed to continuing on.

Other things that help

  • Using my pro air inhaler before beginning my tasks or exercises does help and makes a difference. Besides COPD, I also have exercise-induced asthma.
  • When I stop or take a break, I need to find a place that’s cool where I can sit or lay. That makes it easier to breathe and to catch air.
  • Drinking water.
  • Stretching my back as needed and as often as I need, to relieve any back spasms from fibromyalgia or osteoarthritis pain.
  • Breathing.
  • Know that I am not alone. My husband is with me. Family and friends are with me too, even if not in person. I have a wonderful support group with my COPD friends. Also, others that understand and care.

Support system

I hope that you have a support system. I hope too that you know we are here for you in friendship and support. Sometime back my mom and I were having a discussion. I told her “mom, you need to get a hold of the adoption agency. Tell them you want your money back, you got a defective model.” Back in my infancy, it cost $100.00 for adoption. She said she will happily keep this model.

"Happiness is not the absence of problems, it's the ability to deal with them." by Steve Maraboli

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