Mourning the Death of your Previous Life - Part 1
The reaction to being diagnosed with COPD is as varied as the people that get COPD. Being diagnosed with COPD may cause feelings of denial, fear, anger, blame, guilt, confusion, and depression before accepting the fact your life as you once knew it is gone forever.
Sorting through emotions
Most people with COPD don't understand why they feel these emotions. I belong to many groups and often read comments or questions from other members such as; "I can't get past my denial. How long will it take me to accept I have COPD?", "I never smoked yet I have COPD. I blame my parent's secondhand smoke for that, I'm so angry with my parents for giving me this horrible disease. What do I do?", "I feel so guilty about putting my family and myself through this horrible disease due to the fact I smoked." "Every time I find something new I can't do, I get so frustrated. I can't stop crying, help!" "I'm depressed all the time and can't seem to get over it", "I'm so angry at my doctor. He says I have COPD but I don't believe him", "I never smoked, I did everything right, yet I still have COPD, there is no God." I could go on and on but you get the idea.
All of the emotions you're feeling are a natural part of the grieving process one goes through when a loved one dies. In this case the life that's died is your own. When you have COPD, your old life dies and you'll never get it back so you have every right to grieve the loss. The way you handle it depends on your individual experience, how much COPD has affected your life and how much your life has changed. I often read a comment from a COPDer about them having feelings of grief, but it doesn't seem to open a discussion of any duration or give any helpful info about how to deal with those emotions. Becoming aware of and acknowledging the fact that you have the right to mourn the loss of your life, is a good first step in moving past your grief and getting on with your new COPD life.
Denial and disbelief
When first diagnosed with COPD, most people react with disbelief & denial. Some even pretend not to have been diagnosed with COPD, like smokers, sometimes they don't want to face feelings of self blame. By denying your diagnosis you're protecting yourself from being emotionally overwhelmed all at once. This denial can last weeks, month and sometimes even years. Some COPDers who continue to deny the diagnosis do so because to admit they have COPD fills them with guilt and self blame for having smoked. Others feel being sick is a sign of weakness, or that COPD is a death sentence and their fear of having it keeps them in denial.
There were several people in my family who have COPD. At this time there's one in particular who won't admit he has COPD. He's on an inhaler, (that he overuses like many COPDers in denial do), has been getting sick more frequently yet he still smokes and has no intention of stopping. He won't let his wife go to the doctor with him, he keeps saying nothing's wrong, but, if something is wrong and I die I guess it's just my time. And when I talk to him about being in denial, after we bantered for a while, he shrugged it off, and laughed. He is a person in classic smokers denial of having COPD. This denial will cause him and the family a lot of pain, as your denial may to your family.
Accepting your diagnosis is the best way to cope/deal with the changes in your life. With acceptance comes the possibility of changing your lifestyle and environment, slowing the progression of your COPD down to a snail's pace. All denial does is postpone the inevitable and when it comes to COPD, that postponement can mean the difference between having to use an inhaler when you get short of breath, to being on oxygen 24/7 and still being short of breath. If you have to, get a second or third opinion, but then get over the denial and get on with learning to live with COPD.
COPDers feels guilt for many reasons. The lack of ability to do the things they once did is a biggie. The fact they can no longer work to support their family, they can no longer maintain their house or body the way they once did, every time they must ask for help they feel guilty for imposing on others. The guilt felt at the thought of what we are putting our families through even though it's not our fault we got sick we still feel guilty. Most of the guilt is unwarranted but we feel it anyway. It's hard when you've worked all your life to support your family and suddenly you need your family to support you. Or the mother/father can no longer play with their children/grandchildren without gasping for breath. Making apologies because your house doesn't look the way you think it should, or you haven't the energy to do the washing or cooking that day. These are just a few of the things that cause guilt in those with COPD. People who don't have COPD or other chronic illness cannot understand the guilt and frustration we feel. Some even cause guilt by dismissing your struggles as trivial or nonexistent, all in your heads. Those are the type of people you need to get out of your life as fast as you can, no matter who they are. You'll be a lot healthier and happier for it. Most of the time the guilt only serves to make your COPD worse and is unjustified. Guilt is one of those emotions that is hard to get over. Perhaps if you understand the definition of guilt you might better be able to come to terms with yours.
Definition of guilt; "feeling remorse or negatively judging yourself for things you either did or did not do, which you believe had a negative effect on someone or something else."
If you're feeling guilty that means you're judging yourself negatively for something you have no control over. You didn't give yourself a chronic illness, it's not your fault you can't do what you used to be able to do and need to rely on others for help. Justified or not, all that really matters is your perception of why you feel guilty. In some cases feeling guilty is our way of punishing ourselves for getting sick and in our minds letting down our families. But you have to remember it's not your fault you can no longer work, you did nothing wrong. The same goes with cooking, cleaning, driving, requiring help or frequent hospitalizations. The only purpose served by this type of guilt is a destructive one. It makes one feel shame, worthless, and resentment towards others. You have to learn to forgive yourself for a perceived wrong you never did. Nobody's perfect, so you can't do the things you used to, if you just do what you can, the best you can, there's no reason to feel guilty.
You may have feelings of guilt/regret over smoking in the past or the fact you are still smoking. You can't change the past, but you can change the present and future. If you have stopped smoking, you have already changed and are on a good path to a better future. Try to get over the guilt of the past, you have given yourself a better future, and hopefully a long enough life to see a cure for COPD. Bravo to you all! If you're still smoking you might feel guilty because of how difficult it can be to quit. We all know it's not good to smoke with COPD, to continue to smoke when you have COPD could even be considered form of denial. To help you face the difficult task of quitting smoking, you could try joining a group or asking your doctor for help. But one thing you will definitely need if you're going to be a successful quitter, is self-control and a strong will. Any ex-smoker with COPD will tell you within a few months of quitting your breathing will improve tremendously. Good luck, I'll say a prayer you all become ex-smokers in the near future. Your life will be so much better.
Read Part 2 where I deal with anger, blame, depression & acceptance, breathe deep & easy.
Editor’s Note: We are extremely saddened to say that on March 2, 2018, Mary Ultes passed away. Mary was an engaged advocate for the COPD community who strived to help people live fulfilling lives. She is deeply missed.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to COPD?