Topic of the discussion
Posted on 7/5/21 12:00 AM
How are you today?
Are there any things, misconceptions or false beliefs that you hear regularly about your condition? If so, how do you react to them?
Feel free to share and exchange in the comments below!
Beginning of the discussion - 7/6/21What are some of the common misconceptions you hear about your condition? https://www.carenity.us/forum/other-discussions/good-to-know/what-are-some-of-the-common-misconceptions-you-hear-about-your-condition-3525
Posted on 7/6/21 9:52 PM
@Courtney_J As someone with COPD I've heard that it's our own fault we have COPD and that we've brought it on ourselves. But what a lot of people don't realize is that you can get COPD without having been a smoker. I know a more than a few people who have it from years working in dust and fumes and not necessarily because they were lifelong smokers. I try not to react because most often it's what the person wants or is looking for. I know I don't deserve this. No one deserves to be sick or brings it on themselves.
Posted on 7/10/21 5:24 PM
That this is a manageable disease and that you can live a relatively normal life. When in fact, it is a hard life and there is no normalcy with this disease. You are pretty much just waiting to die and have no quality of life.
Posted on 7/13/21 7:32 PM
People say I deserve my pain because I don't settle down I'm always doing something..all I know is when I'm not doing something my other pain sets in(depression, PTSD,) I rather have deal with different pains then others
Posted on 7/14/21 1:08 AM
I've had people say they were shocked I wasn't in a wheelchair when they met me for the first time, because apparently everyone with MS is in a wheelchair 🙄
Posted on 8/14/21 4:31 PM
When my emphysema is acting up more than usual my partner tells me to just go sit outside on the patio for fifteen minutes and breathe fresh air. He just plain doesn't understand that outside where we live is worse than inside. One of the main streets in the condo complex is right in front of the patio, there is a lot of traffic which, of course, includes auto exhaust fumes, plus the parking spaces for our building are right there too. So when I refuse he gets angry and says "Fine, do what you please but stop complaining that you can't breathe. I don't want to hear it."
Posted on 8/14/21 4:49 PM
@Courtney_J. Thx for reaching out. I have asperger's. And, am female. It more often affects males. Not so many misconceptions, yet ppl think autistics don't understand non verbals &/or have poor communication skills. I'm in my mid 50's & have always had A+ vocab. Some non verbals are more confusing esp. w/ masks on, but I've worked in retail & am pretty good judge of ppl. Often I've been able to finish sentences for them. I know enuff about ppl that I can hold my own frequently. Trying is best I can do. As it is for all of us.
Posted on 2/24/22 8:05 PM
Dearest Mr.1964, I know and understand because I have not voiced that exact saying(we are waiting to die) but,
I do agree with that statement because the Doctors can no longer do much other than the 3 items--Anti-inflammatory, steroids, or chemo!! Most people will not admit to the Immuran as a chemo drug--but it is!! The effects of the disease vs the medicines--both are very bad. Recently I have had broken bones and teeth. I can not place calcium fast enough in my body. I have been on all of the above-mentioned medicines. I only wish, someone would have educated me on the side effects of these drugs. (No one educated me)The doctors' attitude is I am saving you from pain and I am saving your LIFE!! I am in hope that someone will help me to finish my book and then I will run everywhere with it. If possible TV, RADIO, etc. I already had one connection with channel 2 and they did a 5-second commercial with Minnie Pearl--"Do you know someone with Lupus?"
Since I was diagnosed with SLE, lupus I have done as much as possible to make the public aware. The doctors' conventions, newspapers for Lupus Awareness etc. We need more awareness or we will never have a cure for Lupus and that is a FACT!!
Posted on 3/7/22 9:57 PM
I am amazed at people who I have not seen in a while will say, “You look good, I guess you are feeling good also “. Or, XYZ , that has MS doesn’t have all of the problems that you have.
I just agree with everyone and continue my business.
Posted on 3/8/22 10:20 PM
I think, I found the title of my book "YOU LOOK SO GOOD, HOW CAN YOU BE SO SICK"? That says it all so, I think it is self explained in that statement. We are a walking time bomb, and some of us have not been given a diagnosis as of yet!! We need to believe in education to the masses because no one can figure out what the problem is until they someone with Lupus! We need to hold each other up and hang in until more research hits. Wishing all of you many blessings.