The Invisible Disability

[Thomas3.20.2010]

Do you struggle with Folks understanding your disease and the restrictions it puts on you?

I battle with Family, Work, even as a Customer. One reason I research so much is to find simple ways to say, "I may look fine but I'm not! I need you to accommodate my limitations in the following ways..."

COPD awareness even among Doctors is so minimal! It's no wonder that the guy on the street can't understand! In some ways it's even harder until you do have oxygen therapy in that they can see that! 

Some days I just want to say, Hey, live 24 hours in my body and then see what you can do! My pulmonologist said that if a person with no COPD had my lung capacity one day they would be in the hospital!

That's a good one! Try it every day!

[elvan]

I feel that way a lot but my back is so painful that most people seem to realize that I am dealing with SOMETHING.  When people can't see things, they assume nothing is there.  It's tough to try to look healthy and then be expected to BE HEALTHY.  I would LOVE to be able to go for long walks, I would love to be able to bend over and not feel like I cannot breathe.  One step at a time, I am still breathing.

[TerrieQuit]

Amen! Thomas, Amen! I get it all the time! "You don't look sick"  ~Terrie~

[constanceclum]

I get it too Thomas. There's a part of me that doesn't want people to know how bad my lungs are, I certainly don't want or expect pity, but the other part of me gets irritated, especially in stores when no one is available to help. Whenever I've had to park across a parking lot and the weather is bad, I tell myself I'm gonna ask the Dr. for a handicap thing for my mirror but I never do. Maybe it's a little denial on my part.

Connie

[Mandolinrain]

I totally relate. I also have MS ....talk about a disability that people look at you and say, you look fine. ....yes I can relate

[elvan]

Grrrrr, we try so hard not to look pathetic but when we are having particularly challenging days and someone says, "You LOOK so healthy."  I know it's a compliment but not everything shows.  I was approached by an elderly "gentleman" one day in the parking lot at Walmart.  He came up to my window and knocked on it and asked me, "Does that disabled placard belong to you or did you borrow it from someone?"  I was so offended that I could hardly speak but I asked him if he needed to see copies of my medical records.  He backed off and was very apologetic but I was probably angry for a lot longer than I should have been...which was really not at all.  He was clearly trying to make sure that people were not using the handicapped spots when they didn't NEED them.  I don't use the spots unless it's a rough day and I think that is part of the reason I was offended.  

[Mandolinrain]

Yes I know, its upsetting. I have family members that don't understand my MS. Fatigue and heat are VERY hard on me and I tend to have a very weak immune system therefore I have to be more carful being exposed to people who are sick. It takes me longer to recover. I am fortunate to not be dependent on a wheelchair as many MS patients are, but on my worst days I have used a cane. People who know how active I am react surprised...I was a riding instructor and a runner, which I still do when I feel good. So they hardly believe it when I pull the ole cane out. It a deceptive disease I have no control over, but I manage fine and would manage even better without others rude comments. So yes....Grrrrrrrrrrrr...Im with ya.

[freeneasy]

@ Thomas and everyone else who commented here, you folks really get me thinking.   No one really knows what anyone else is dealing with. We all just do what needs to be done daily. I'm always grateful for this site and how it helped me to get smoke free and stay that way.

[elvan]

Me too, this site and the people here pulled me through the darkest time in my life, so far.  

[Chuck-2-20-2011]

 I've always considered myself lucky, as I work for myself and my partners are a close family. Actually, really close. I work with my brother and others, but the thing is that there's enough concern over my COPD that we've all learned together. As such, there are times when they'll actually tell me to check my blood oxygen levels and to rest when I need to.

So far, the only time I seem to have problems is during a cold. I seem to get infections easier, and though I'm not contagious during those times, I really don't enjoy going out in public with that cough that sounds like I could infect the entire community! But we all learn to cope and try to explain to those who matter to us what is happening to us, and sometimes they get it.

Chuck