What's new
By:
Filters
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

How to get over oxygen shyness

D

duke1234

New member
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); font-size: x-small;">When I started using oxygen In November I was on 2.5 lpm and could go to church or out to eat with friends for an hour or two and leave my oxygen in my car, but now I'm on close to 4 lpm and I get extremely out of breath if I take off my oxygen to walk out to the fridge in my garage for a minute. The point is none of my friends have seen me on oxygen and I'm at the point where I can't hide it anymore. I haven't left my house in 3 weeks. I'm so self conscious about stranger seeing me and giving me looks and I'm even more self conscious about friends and people I know seeing me.  I want to enjoy my life as much as possible so how do I get over the fear.
 
D

duke1234

New member
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); font-size: x-small;">When I started using oxygen In November I was on 2.5 lpm and could go to church or out to eat with friends for an hour or two and leave my oxygen in my car, but now I'm on close to 4 lpm and I get extremely out of breath if I take off my oxygen to walk out to the fridge in my garage for a minute. The point is none of my friends have seen me on oxygen and I'm at the point where I can't hide it anymore. I haven't left my house in 3 weeks. I'm so self conscious about stranger seeing me and giving me looks and I'm even more self conscious about friends and people I know seeing me. I want to enjoy my life as much as possible so how do I get over the fear.
 
D

duke1234

New member
<p><span style="font-family: Arial, Helvetica, sans-serif;"><span style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); font-size: x-small;">When I started using oxygen In November I was on 2.5 lpm and could go to church or out to eat with friends for an hour or two and leave my oxygen in my car, but now I'm on close to 4 lpm and I get extremely out of breath if I take off my oxygen to walk out to the fridge in my garage for a minute. The point is none of my friends have seen me on oxygen and I'm at the point where I can't hide it anymore. I haven't left my house in 3 weeks. I'm so self conscious about stranger seeing me and giving me looks and I'm even more self conscious about friends and people I know seeing me. I want to enjoy my life as much as possible so how do I get over the fear.
 
C

cnsky54RRT

New member
Do your friends know about your CF, about the meds you take and the doctor visits? Have you ever explained what is involved with CF and the many things you do to optimize your health? Or are they completely in the dark that you have an illness at all? People on this forum will tell you over and over from experience that the friends who are true to you and really matter are not going to be turned away. It is harder for people with a chronic illness to avoid being part of a support community. It's no shame or weakness to let friends in on your real life. I think you will find a good group who will be there for you, and that's the best thing in the world to have on your side.
 
C

cnsky54RRT

New member
Do your friends know about your CF, about the meds you take and the doctor visits? Have you ever explained what is involved with CF and the many things you do to optimize your health? Or are they completely in the dark that you have an illness at all? People on this forum will tell you over and over from experience that the friends who are true to you and really matter are not going to be turned away. It is harder for people with a chronic illness to avoid being part of a support community. It's no shame or weakness to let friends in on your real life. I think you will find a good group who will be there for you, and that's the best thing in the world to have on your side.
 
C

cnsky54RRT

New member
Do your friends know about your CF, about the meds you take and the doctor visits? Have you ever explained what is involved with CF and the many things you do to optimize your health? Or are they completely in the dark that you have an illness at all? People on this forum will tell you over and over from experience that the friends who are true to you and really matter are not going to be turned away. It is harder for people with a chronic illness to avoid being part of a support community. It's no shame or weakness to let friends in on your real life. I think you will find a good group who will be there for you, and that's the best thing in the world to have on your side.
 
1

1BumLung

Guest
Interesting you would post this today. I haven't used O2 in public for a while until yesterday. Lead a pretty active, normal life, by most people's assessment. Sleep with it, and exercise with it, but like you, have left it behind for most "public" activities. Sure, I get some looks when I use it. (Helps answer that evil-eye people give when I use my truck's Handicap hangar in the parking lot without a wheel chair or cane, tho!) At church, friends will quickly know I've "gone downhill," and ask how I'm doing. The Barrista at Starbucks yesterday, with whom I've begun a friendship, was like, had never seen it before, probably never even heard me cough, and asked, "What's with this?" I just said, "Bad lung day," and went on with our conversation. Some people will accept that. Others want to know more. I just try to arm myself with a short clear answer, and make it clear I don't want it to be the focal point of our conversation. "I've got a genetic lung disease, about one lung left, but at least it doesn't hurt!"
 
1

1BumLung

Guest
Interesting you would post this today. I haven't used O2 in public for a while until yesterday. Lead a pretty active, normal life, by most people's assessment. Sleep with it, and exercise with it, but like you, have left it behind for most "public" activities. Sure, I get some looks when I use it. (Helps answer that evil-eye people give when I use my truck's Handicap hangar in the parking lot without a wheel chair or cane, tho!) At church, friends will quickly know I've "gone downhill," and ask how I'm doing. The Barrista at Starbucks yesterday, with whom I've begun a friendship, was like, had never seen it before, probably never even heard me cough, and asked, "What's with this?" I just said, "Bad lung day," and went on with our conversation. Some people will accept that. Others want to know more. I just try to arm myself with a short clear answer, and make it clear I don't want it to be the focal point of our conversation. "I've got a genetic lung disease, about one lung left, but at least it doesn't hurt!"
 
1

1BumLung

Guest
Interesting you would post this today. I haven't used O2 in public for a while until yesterday. Lead a pretty active, normal life, by most people's assessment. Sleep with it, and exercise with it, but like you, have left it behind for most "public" activities. Sure, I get some looks when I use it. (Helps answer that evil-eye people give when I use my truck's Handicap hangar in the parking lot without a wheel chair or cane, tho!) At church, friends will quickly know I've "gone downhill," and ask how I'm doing. The Barrista at Starbucks yesterday, with whom I've begun a friendship, was like, had never seen it before, probably never even heard me cough, and asked, "What's with this?" I just said, "Bad lung day," and went on with our conversation. Some people will accept that. Others want to know more. I just try to arm myself with a short clear answer, and make it clear I don't want it to be the focal point of our conversation. "I've got a genetic lung disease, about one lung left, but at least it doesn't hurt!"
 
T

Tammy15

New member
My daughter started out at 2 so she just went out and about with her small tanks her friends really did not think much about it, it was just a part of what she had to do now. As her O2 had to be higher and she had to use the bigger tanks that bothered her briefly. But we always focused on she could do whatever she really wanted and for her 3 yrr old son she had to be out and about. Her friends never really acted any differently the only difference was they would help load extra tanks in car when they wanted to go shopping or out to eat with her.  We only had two instances that perfect strangers said something, one an eldery lady on oxygen came up to her to let her know they made smaller tanks and name of the company she herself used.  We just thanked her.  The next person was in line at a store and her little daughter asked her mom what it was steph had. Instead of mother saying some people need oxygen she said very loudly thats what happens to people who smoke they ruin their lungs. So my daughter not missing a beat yells over to her sister "don't forget we have to stop at store on way home I need more cigs I already smoked all my 6 cartons today and need more" and she her sister and I kinda laughed. Dont sit home live your life your friends are your friends and I am sure they enjoy your company
 
T

Tammy15

New member
My daughter started out at 2 so she just went out and about with her small tanks her friends really did not think much about it, it was just a part of what she had to do now. As her O2 had to be higher and she had to use the bigger tanks that bothered her briefly. But we always focused on she could do whatever she really wanted and for her 3 yrr old son she had to be out and about. Her friends never really acted any differently the only difference was they would help load extra tanks in car when they wanted to go shopping or out to eat with her. We only had two instances that perfect strangers said something, one an eldery lady on oxygen came up to her to let her know they made smaller tanks and name of the company she herself used. We just thanked her. The next person was in line at a store and her little daughter asked her mom what it was steph had. Instead of mother saying some people need oxygen she said very loudly thats what happens to people who smoke they ruin their lungs. So my daughter not missing a beat yells over to her sister "don't forget we have to stop at store on way home I need more cigs I already smoked all my 6 cartons today and need more" and she her sister and I kinda laughed. Dont sit home live your life your friends are your friends and I am sure they enjoy your company
 
T

Tammy15

New member
<p>My daughter started out at 2 so she just went out and about with her small tanks her friends really did not think much about it, it was just a part of what she had to do now. As her O2 had to be higher and she had to use the bigger tanks that bothered her briefly. But we always focused on she could do whatever she really wanted and for her 3 yrr old son she had to be out and about. Her friends never really acted any differently the only difference was they would help load extra tanks in car when they wanted to go shopping or out to eat with her. We only had two instances that perfect strangers said something, one an eldery lady on oxygen came up to her to let her know they made smaller tanks and name of the company she herself used. We just thanked her. The next person was in line at a store and her little daughter asked her mom what it was steph had. Instead of mother saying some people need oxygen she said very loudly thats what happens to people who smoke they ruin their lungs. So my daughter not missing a beat yells over to her sister "don't forget we have to stop at store on way home I need more cigs I already smoked all my 6 cartons today and need more" and she her sister and I kinda laughed. Dont sit home live your life your friends are your friends and I am sure they enjoy your company
 
T

TleighsHusband

Guest
This was one of the hard ones for Tiffany as well not as much because of what people would say but because she couldn't hide anymore how she was really doing. For us, we were very open about Tiff's CF so most everyone we knew also knew she had CF. What we found was that it was actually a real challenge to people when they saw Tiffany continuing to live life like playing the piano at church with her oxygen (although she could hide it quite well from everyone but the choir!) or just the daily routine. It caused no problems with her friends although we probably did more explaining about how she was doing. She did get the occasional innocent remark from a child wondering what it was, but all in all the inner emotional side of it was the hardest part. CFers can hide so well how they are doing because you "look good" and then when you add the oxygen you don't "look good." It is worth it though as it puts less stress on your heart and lungs when you have the oxygen.
 
T

TleighsHusband

Guest
This was one of the hard ones for Tiffany as well not as much because of what people would say but because she couldn't hide anymore how she was really doing. For us, we were very open about Tiff's CF so most everyone we knew also knew she had CF. What we found was that it was actually a real challenge to people when they saw Tiffany continuing to live life like playing the piano at church with her oxygen (although she could hide it quite well from everyone but the choir!) or just the daily routine. It caused no problems with her friends although we probably did more explaining about how she was doing. She did get the occasional innocent remark from a child wondering what it was, but all in all the inner emotional side of it was the hardest part. CFers can hide so well how they are doing because you "look good" and then when you add the oxygen you don't "look good." It is worth it though as it puts less stress on your heart and lungs when you have the oxygen.
 
T

TleighsHusband

Guest
This was one of the hard ones for Tiffany as well not as much because of what people would say but because she couldn't hide anymore how she was really doing. For us, we were very open about Tiff's CF so most everyone we knew also knew she had CF. What we found was that it was actually a real challenge to people when they saw Tiffany continuing to live life like playing the piano at church with her oxygen (although she could hide it quite well from everyone but the choir!) or just the daily routine. It caused no problems with her friends although we probably did more explaining about how she was doing. She did get the occasional innocent remark from a child wondering what it was, but all in all the inner emotional side of it was the hardest part. CFers can hide so well how they are doing because you "look good" and then when you add the oxygen you don't "look good." It is worth it though as it puts less stress on your heart and lungs when you have the oxygen.
 
L

Ldude916

New member
Hi Duke,

You know what is funny....I sometimes forget I'm wearing it!!! I wonder why kids are looking at me and then I'm like, "oh ya, they probably are wondering about this tube!"

It takes time, but eventually you won't even know you have it on. I find one thing that is helpful is having a 'story' in your head about what you tell people (strangers) who look at you and ask "what's wrong with you, you're soooo young!" At first I was tongue-tied and embarrassed, but I was able to create a one liner to give people that made me feel comfortable with who I am and satisfied their need for information.

I think no matter how embarrassing it was at first I just made sure to hold my head up high and just owned it! Eventually I started to believe it! This is me and if it bothers somebody, I really cannot blame myself for that...it is only their own ignorance guiding them.

In order to introduce it to your friends, maybe invite them to your house and explain why you need to wear it, and that you will be wearing it in public (as not to show up all of a sudden in public with it on and confuse them). They will love you no matter what and totally have your back!

Just be proud of yourself, proud that you are still active even though it is hard/embarrassing. This is who you are and you're allowed to own it and show it off. As far as not 'looking good' - ya I had that fear too - but eventually when you look in the mirror, you won't even see the dumb tube in your nose. It's just another wonderful piece of who you are!!!
 
L

Ldude916

New member
Hi Duke,

You know what is funny....I sometimes forget I'm wearing it!!! I wonder why kids are looking at me and then I'm like, "oh ya, they probably are wondering about this tube!"

It takes time, but eventually you won't even know you have it on. I find one thing that is helpful is having a 'story' in your head about what you tell people (strangers) who look at you and ask "what's wrong with you, you're soooo young!" At first I was tongue-tied and embarrassed, but I was able to create a one liner to give people that made me feel comfortable with who I am and satisfied their need for information.

I think no matter how embarrassing it was at first I just made sure to hold my head up high and just owned it! Eventually I started to believe it! This is me and if it bothers somebody, I really cannot blame myself for that...it is only their own ignorance guiding them.

In order to introduce it to your friends, maybe invite them to your house and explain why you need to wear it, and that you will be wearing it in public (as not to show up all of a sudden in public with it on and confuse them). They will love you no matter what and totally have your back!

Just be proud of yourself, proud that you are still active even though it is hard/embarrassing. This is who you are and you're allowed to own it and show it off. As far as not 'looking good' - ya I had that fear too - but eventually when you look in the mirror, you won't even see the dumb tube in your nose. It's just another wonderful piece of who you are!!!
 
L

Ldude916

New member
Hi Duke,
<br />
<br />You know what is funny....I sometimes forget I'm wearing it!!! I wonder why kids are looking at me and then I'm like, "oh ya, they probably are wondering about this tube!"
<br />
<br />It takes time, but eventually you won't even know you have it on. I find one thing that is helpful is having a 'story' in your head about what you tell people (strangers) who look at you and ask "what's wrong with you, you're soooo young!" At first I was tongue-tied and embarrassed, but I was able to create a one liner to give people that made me feel comfortable with who I am and satisfied their need for information.
<br />
<br />I think no matter how embarrassing it was at first I just made sure to hold my head up high and just owned it! Eventually I started to believe it! This is me and if it bothers somebody, I really cannot blame myself for that...it is only their own ignorance guiding them.
<br />
<br />In order to introduce it to your friends, maybe invite them to your house and explain why you need to wear it, and that you will be wearing it in public (as not to show up all of a sudden in public with it on and confuse them). They will love you no matter what and totally have your back!
<br />
<br />Just be proud of yourself, proud that you are still active even though it is hard/embarrassing. This is who you are and you're allowed to own it and show it off. As far as not 'looking good' - ya I had that fear too - but eventually when you look in the mirror, you won't even see the dumb tube in your nose. It's just another wonderful piece of who you are!!!
 
D

duke1234

New member
Thanks for all the help everyone. I guess it's just a situation where I have to swallow my pride and just walk outside with my oxygen on and my head held high. Saying it is easier than doing it, But I'm going to try.
 
D

duke1234

New member
Thanks for all the help everyone. I guess it's just a situation where I have to swallow my pride and just walk outside with my oxygen on and my head held high. Saying it is easier than doing it, But I'm going to try.
 
You must log in or register to reply here.
Top