Venting - family needs to communicate!
I attended a wedding recently where the service was streamed on face book. I clime up a long stairway to the doors of the church. I stop to chat with a few people, and all of a sudden there are two men there identifying me as the one requiring the wheel chair. They grab my arm and try to steer me in a direction where a wheel chair must be waiting for me. I was startled. I don't, and never have required a wheel chair. I'm on oxygen for sleep, that's all! There are friends, and family members who must chat about my lung condition. I was at a restaurant a couple years ago, and got a lecture from a distant friend (on oxygen) that it was dangerous I wasn't using it full-time. Explaining to her that I regularly see an excellent pulmonary specialist, who runs PFT tests, and 6-minute walks on a regular basis didn't seem to stop her lecture.
In all the 10 years I've been dealing with COPD nobody has actually asked me how I'm doing. I'm out, and about without needing daytime oxygen at this point. Do they think I'm stupid enough to disregard an order if my doctor did say I needed it. I told the wheelchair crew I didn't need the chair they presumed I needed. They backed off, but looked concerned. There were guests using walkers for various orthopedic problems. Getting old. What would you do? I want to ask the bride why she didn't message me, or call me to ask if I needed assistance. Maybe she was too embarrassed to ask me. Maybe I need to send the family a newsletter with updates about my health. Anyone else that that was "rude"? There are plenty of people who are aided by using wheel chairs these days.
Hi
, that must have really caught you off guard. I can understand why you would have been startled. I wish you didn't have to go through that. It is so hard when others don't understand or think that they are being helpful, when in fact, it is just making it worse. In my personal opinion, I think you have every right to ask the bride why she didn't ask you first if you needed assistance. It doesn't need to be a confrontation, just a question. I am glad you are a part of our community. This is a safe space when you can vent when ever you need. We are here for you. Jill, COPD.net, team member ,
I understand how you feel. I had been diagnosed with COPD last year, after a bad bout of pneumonia and family and friends act as if I am on my death bed. I can't go anywhere or do anything without the "do you need to go home?" question popping up. I have to always answer, "if I need to go, I will let you know". I often use the pursed lip breathing exercise and everyone thinks it is a cry for help. I can't count the number of times the "do you need to go to the hospital" question has popped up. I have learned to pretty much ignore it and write it off to genuine concern about my health. Very occasionally I will get the "how are you doing " question. But that is far and few between. I have not gotten any lectures from anyone though, so I guess I am doing good on that account. Hang in there Atrooper and try not to let it bother you too much. Take Care.Yes I didn't tell anyone but they knew I was on oxygen but my legs are bad also they did ask me if I prefered a wheel chair which I said yes they my husband's family seemed Ok. I was surprised they asked .thank you Joe& Becky Moore ,
On the bright side, they were concerned about your well-being, even if their methods were clumsy! I have the exact opposite problem with people and my COPD. My extended family thinks I’m “faking it” because I’m still so active. I guess I don’t fit the mental image they have of someone with COPD. I’m at Stage 2.
Most of my friends say “you’re fine now, right.” No, not at all.
Ironically, I had recently decided to not say another word about my COPD to anyone that doesn’t have COPD! I’m tired of explaining my situation over and over. That’s why I began a search for COPD forums where I could communicate with people that GET IT!
Thanks for your post!
