How to Help Friends and Family Understand COPD

How to Help Friends and Family Understand COPD

We all have our individual lives. In this country and this society, they are usually very busy and oftentimes hectic.

Which is not to say that they’re not fun because they can be for the most part.

Sure – there’s disappointments, and heartaches, but there’s also joy and pleasant surprises.

We anticipate what might be coming down the road in terms of our families, our relationships and our careers.

Sometimes, it all lives up to what we expected and sometimes it catches up with us.

Do friends and family understand?

With COPD, I’m not sure my family and/or my friends know that a lot of all that gets re-arranged or rather, that those of us with COPD find it necessary to re-arrange much of our lives.

I was diagnosed in 2011 on the day of our middle son’s high school graduation. It was June and I’d had a terrible cough for a number of days. NyQuil, DayQuil – nothing was taking care of it. And I could hear all that congestion rattling around my chest.

I called my doctor (I only had 1 then – lol) and she couldn’t see me. My wife took me to the ER and the intern there listened to my chest, sent me for an x-ray, sat down next to the hospital bed and asked me how long did I have COPD?

Everything had changed

For the next few weeks, I’m sure it seemed to my wife, children and to my friends that I was getting “back to normal.” It seemed that way to me as well. And the household returned to its routines.

But what none of us realized was that everything had changed forever.

I made a big mistake.

I was so busy trying to be normal that I didn’t take advantage of the fact that I had the attention of my wife, my daughter, my two sons, and the dozens of families that are part of my family’s life.

I don’t mean to sound dramatic but, with my diagnosis, my life had changed forever and I hadn’t really communicated that to them. And with that, they all returned to their lives (as they should have).

I had become aware that things would be different but, I had not effectively made anyone else aware.

Trying to educate others

That’s changed since 2011.

I’ve taken advantage of articles, blogs, videos and pamphlets to try and educate. It’s been very effective in some situations and not-so-much in others.

“You don’t look like that guy, Dad,” one of the boys will tell me after seeing an older COPD patient at a more precarious stage than mine.

“You’re going to outlive me,” my younger wife by seven years will say when I try to explain something about helping me with a task of some kind that I feel intimidates me or is beyond my capabilities at this point. “Don’t get lazy!” she usually adds.

“We’re going to The Inn at 8,” my buddy would call and say (The Inn being the local watering hole). “No wives!” he would add for emphasis and machismo I guess!

But the last thing I wanted to do after a long, oxygen-draining day was stand at a crowded bar and imbibe.

He gets it now and, to be honest, once in a while I’ll take him up on his offer.

I’m going to schedule a Family COPD Education Night soon – just to get everyone caught up on where my body and spirit is at.

And maybe then after that, we’ll all go down to The Inn – including the wives!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (8)
  • madank
    3 months ago

    LOVE your attitude Kevin!

  • KevinDavitt author
    3 months ago

    Thank you. Hope you’re doing as well as can be expected!

  • Baron
    3 months ago

    Hi Kevin, thanks for your answer. I am loathe to be specific on this forum as I think it would ultimately be counter productive to all those who have recently been diagnosed and are at the beginning of their (hopefully) long journey. Suffice to say that I have been on this journey for over 10 years, most of that on oxygen 24/7 which is a long time. I am at the tail end of whatever COPD condition standard you subscribe to GOLD, Level 4, Endstage etc. I am still living at home independently & alone without help because by the standards of our local Authority, I don’t qualify even though I can no longer walk. I do not have the funds to pay for my own personal care. Cancer patients have a very well established help mechanism, a friend of mine was recently given a free apartment to reside in while he received treatment at the local hospital. By comparison, there is zero help for COPD patients, just the usual helplines etc. That is here in the UK and I’m pretty sure it’s not like that in the US, but by comparision, yes, I would rather be a cancer patient instead of feeling unwanted and a burden on our health care service. COPD is an awful debilitating disease. There is no sugar you can coat the pill with. Because I am a reltively fit person in all other respects, this torture may go on for some time yet although I feel that my lungs are generally failing now. Sorry to be blunt but this is my reality. It may be in years to come that someone will throw some money at the COPD community but that prospect looks way off at this time. In the meantime we are seemingly on our own.

  • Barbara Moore moderator
    3 months ago

    Hi Baron, This is the sad reality in almost all parts of the world. We need to have our voices heard because it is impossible for others to understand. If we continue to sit in our homes without being heard it is easy for everyone to ignore us. Barbara (Site Moderator)

  • KevinDavitt author
    3 months ago

    Baron – there is a Facebook page entitled
    “We Strive To Breathe Easier,” whose administrator is an occasional contributor to COPD.net and who is COPD-knowledgeable.

    His name is Derek Cummings.
    Derek is from London but currently resides in Wales.
    He may have benefit information you may not be aware of. I suggest you message him.

  • Barbara Moore moderator
    3 months ago

    Hi Baron, I can vouch for Kevin on this issue. Derek was one of the first social media contacts I had and have followed him ever since. He is a wealth of knowledge. Barbara (Site Moderator)

  • Baron
    3 months ago

    An interesting and thought provoking post Kevin, That must have been a jolt regarding your snap diagnosis. Mine was somewhat similar. Following a series of x-rays & CT scans, my consultant doctor sat me down and said “I have good news & not so good news”. I went for the good news which turned out to be that I hadn’t got cancer, which was in some ways a bit of a shock because I wasn’t even aware I was at risk from it. Ok, for the not-so-good news now. He said it exactly like this: “You have Emphysema use these 2 inhalers as prescribed. Good morning.” And that was it. I had no clue what Emphysema even was or what it all meant. If I could wind the clock back, I would honestly rather he said “You have cancer” because at least it can be treated and it can be cured and if the worst happens, you’re not going to be scrabbling around in the dark gasping for breath and looking for an oxygen cylinder for the next 10 years, or maybe you are. In any event, I don’t believe anyone that hasn’t suffered it, could possibly understand how cruel this disease (COPD) can be..When I go into hospital for intravenous antibiotic treatment, even the trained nurses have lttle understanding of what breathlessness is really like. The more education there is out there for us, our friends & families, the better.

  • KevinDavitt author
    3 months ago

    Baron – “I went for the good news which turned out to be that I hadn’t got cancer…”
    – I know exactly what you mean.

    “I would honestly rather he said “You have cancer.”
    I hope that’s not so. Granted, it’s a difficult life with COPD and it can be cruel but I don’t think it’s impossible. I hope you feel differently as time goes on. – Kevin

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