Do A Lot Of People Keep Their Copd A Secret? | MyCOPDTeam

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Do A Lot Of People Keep Their Copd A Secret?
A MyCOPDTeam Member asked a question 💭

I do and have not seen any one I know for 2/and 1/2 years

posted November 27, 2022
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A MyCOPDTeam Member

@A MyCOPDTeam Member, the issue about something for a cannula that doesn't hurt your nose would be a good question to ask in the Q & A section. (The tab is at the top of your page) I think that's where you get the best medical answers.

I think the only time I approached anyone in public was when a young woman was wearing the cannula in a super market. I had just been diagnosed, and was walking around in a state of panic, or I never would have approached her. She said a few words of encouragement to me. She seemed a little uneasy about it, but was nice. I was embarrassed about it later, but at the time, just frantic for something from someone.

I think your willingness to talk to a stranger about it is doing more good than you may ever know. You may really be calming some ragged nerves out there.

"Pack up your life". That's a powerful thing to say. Hugs

posted November 30, 2022
A MyCOPDTeam Member

Three years for me. My pulmonologist doesn't want me around people, so I stay very busy doing things I enjoy.

posted December 10, 2022
A MyCOPDTeam Member

I was embarrassed for some time before I went out with my oxygen--hence staying home.

I now use my portable oxygen machined while I'm out. I remember when my sons were babies and you needed to pack everything needed, hold that while carrying one child and make sure the other was hanging onto my belt loop.

That is the way I feel when I go out--pack your life up.

I am getting much better at the embarrasment wearing it outside my home.

I was at the grocery store and a guy behind the salad counter mentioned that I was too young to be wearing oxygen. This embarrassed me.

Many times (older usually) stop me and ask about the portable machine. I like talking about it to someone who has a question.

Still trying to find something for a cannula that doesn't hurt my nose.

posted November 30, 2022
A MyCOPDTeam Member

My doctors never used the term COPD until after I stopped smoking! No one talked about the changes that take place when Nicotine is removed from the body. More was hidden from Us than we are able to hide from ourselves.

When the many causes of Respiratory damage are all identified, the lines of COPD will be less blurry and a true definition will allow the real Work to begin on some curative treatments. My proof is in current acknowledgement that Environment, air quality, Pollution and even other diseases like Covid all have a role to play in Respiratory health.
I Look around. We're not in OZ anymore. Neither patients or healthcare "experts" should be able to hide behind the invisible curtain of this condition any longer.

posted November 29, 2022 (edited)
A MyCOPDTeam Member

I found a new occupation because of my COPD: COPD advocate. I do a lot of work with journalists, researchers, and foundations helping to spread the word about COPD. A lot more people know about COPD now than when I started in 2000.

posted November 27, 2022

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