How have your family members adjusted to your diagnosis?
I was diagnosed with Stage 3 COPD last September. I had my family Dr. refer me to a pulmonologist so on the medical end I feel like I understand more what this disease has done to me. I did not realize I was sick prior to being diagnosed but now I understand that this had been coming on for several years. I just did not recognize the warning signs.
It has been adjustment for both me and my husband
He has been extremely supportive but is going through psychological changes himself. He feels it is a burden because I hear comments like ‘it’s all on me now’ and I feel guilty. Can anyone tell me how your family members have adjusted? I don’t feel like I can tell him when I am not feeling up to snuff or if something is difficult for me. Any suggestions on how I can keep from feeling guilty while having him educate himself more about the disease?
Thank you so much for sharing with us
. I hear your frustration- that you feel guilt, and consequently struggle to admit when you need help. The process after a diagnosis is a long road with many emotions- I am sure that some of our community members will share their thoughts soon, but I wanted to provide you with the first of a series of articles that I thought would be helpful: https://copd.net/living/previous-life-part-1/. Also, our contributor Kathy M. has a great series for caregivers: https://copd.net/caregiver/faqs-caregiving-part-1/. I hope these will be helpful. Please know you have our support. ~Melanie Merritt (COPD.net team member) Hi NJBrandt, and thanks for your post.
While you may hear back from others in the community, I thought you might want to start by sharing this article (about the basics of COPD), with your husband: https://copd.net/basics/. Perhaps reading this material will provide him with a better understanding of what this condition is all about and what you are going through.
When it comes to feeling guilty, you are not alone in that regard either, as others in the community have expressed similar sentiments with this very common emotion. You may find this article, on that very topic will provide you with a different approach towards managing this feeling: https://copd.net/living/let-go-guilt/. I do hope you find it to be helpful.
Please know that you are always welcome here in our online community.
Warm regards,
Leon (site moderator - COPD.net)Thank you Leon and Melanie for your responses. They were extremely helpful! I know I’m still adjusting. When I was diagnosed I felt like WHAM! This is your life now. No one had ever talked to me about C.O.P.D. I stopped smoking immediately but my husband still smokes (out of sight in our detached garage). And while I wish he would quit I can’t make that decision for him. Even though I am on oxygen 24/7 I am still able to take care of the inside of the house and go out with my friends for lunch, craft classes, etc. so it could be worse. I get fatigued but in retrospect I was getting fatigued before I was diagnosed. This sight is a great help in gaining an understanding and I welcome everyone’s input. Thank you!
Hi again NJBrandt, and thank you for your prompt reply and further explanation of how you feel and your circumstances.
It is WE who should be thanking YOU for being a member of the community and for sharing your current medical history and home circumstances. We appreciate your candor.
I want to wish you and healthy and peaceful New Year season. Please know you can access this community as often and for as long as you wish.
Warmly,
Leon (site moderator COPD.net)
I have no idea what "stage" my COPD is. I was never informed. I was diagnosed with "mild emphysema" about 9 years ago, after two close bouts of pneumonia. My husband died 10 years ago. I also have sleep apnea, insomnia, bum knees, and sarcoidosis. Sarcoidosis was finally diagnosed after they scared me for two months last summer with tests for lung cancer -- up to and including a lung biopsy. I have a very uncaring pneumonologist. He wouldn't telI me any test results until he had an opening for me to see him!!! think I have COPD fatigue PLUS sarcoidosis fatigue. My kids just think I'm lazy. I was unable to use a CPAP machine (gave me claustrophobia and a wet face) and inhalers don't seem to do a thing. I have no body to talk to about this and it's just getting worse. I get the impression that medical people think I deserve this... I was a heavy smoker for 30 years... but I haven't had a cigarette for over 20 years. I was fine when I stopped smoking... no cough, no shortness of breath... but it crept up on me in the last 10 years and I don't know what to do to cope. I still have no cough. Just shortness of breath and fatigue (I hit 74 on Xmas day). My kids tell me to get out and walk. I'd do that if I had the energy to get dressed and didn't have to stop every 20 feet to catch my breath. I pay people to "clean" my house and I go shopping when absolutely necessary. I've probably been on anti-depressants and anti-anxiety meds for at least 30 years. As my mother used to say "It's a great life if you don't weaken." I'm starting to ask for help when I need it....
