things people with invisible illnesses do not want to hear. I have heard these so many times myself regarding my illness, and let me tell you these remarks do not help in any way! I have POTS ( Postural Orthostatic Tachycardia Syndrome) and EDS (Ehlers Danlos Syndrome) Both are invisible to others but my daily struggles are very real. As are the struggles of other invisible illnesses. OK lets get down to business! Here they are in no particular order of importance.
IT COULD BE WORSE.......
I absolutely hate this one. Makes my blood boil. You are correct it could be worse, but that does not diminish what I am going through or make it less difficult to deal with. Just because other illnesses are worse, it does not all of a sudden make my illness better or easier to have. Down playing my illness because others have it worse is not helpful at all. Everyone faces battles differently.
YOU DON'T LOOK SICK....
Well gee thanks. I am glad that I don't look sick but, that does not change that I am in fact sick. Just because I don't look it doesn't mean its not there. And knowing I don't look sick doesn't make me feel any better in any way. You would not say to someone who lost a loved one "You do not look like someone who suffered a loss." So why say it to someone with an illness? It is not a compliment.
YOU ARE WAY TO YOUNG TO BE SICK......
Age is completely irrelevant to sickness. Anyone at any age can get sick. I get this one a lot, being 32. Honestly it makes me feel guilty and embarrassed that I am sick. Being young does not automatically mean being healthy.
I am going off topic for a second to share a story with you that happened to me at the fair. We went to our local fair and my daughter wanted to see the swimming pigs. It was very hot out. I had used all of my energy and power to go and not let her down. I found a bleacher seat and sat with my daughter 20 minutes before the show started. I wanted to ensure I would have a seat and not possibly faint and ruin my daughter's fair trip. I was already struggling in the heat. Hot temperatures cause my symptoms to be worse. So we sat and waited for the show to start. Little Miss Sass sat on my lap. As it got closer to the start time, people started to pile in. Our bleacher was full. A lady maybe 40 with a crutch and aircast on her foot came over to me and said "Would you move so I can sit? You are so young and healthy and don't need to sit." I told her I too needed to sit. She couldn't see my rapid heart, or that I felt as if I couldn't breath. She didn't see my fear of passing out and failing my daughter. She then said as she pushed into me and squeezed onto the bleacher where there was no room "I have a fractured foot and need to sit more than you do you can move." There was a nice elderly couple who squished over to make room for us. I replied that I too have a fractured foot but you cant see it because I don't have a huge air cast. I pulled off my shoe and showed her the insert that allows me to walk without a cast. Then I said I have a heart condition you cant see which requires me to sit to not pass out! She said something in return but I ignored her and enjoyed the show with my daughter, despite being stuck like a sardine next to this arrogant woman. Many assume being younger means healthier is my point to sharing this story with you. Moving on to my list.....
I WISH I COULD LAY AROUND ALL DAY....
What a slap in the face! Yes, because it is so nice to miss out on everything and have to lay around because of your illness. I really love that I have to stay in bed while my child plays outside with her father and I cant participate. I love not being able to do the simple things others take for granted. Such a blessing.
IT MUST BE NICE TO NOT HAVE TO WORK.....
People with chronic illnesses are not lazy and would love to be able to work. To have a sense of independence and generate an income. So no, having a illness that prevents you from working is not nice.
EXERCISE MORE AND PUSH THROUGH....
Exercise is very important to everyone and we should all be doing it. I agree with that. My heart rate hits 135 just from standing alone, So working out is not as easy as some may think. Many start with a rate of 75 I am starting double that. I exercise to the best I can but there is lots I can no longer do. It is not a matter of not wanting to, its a matter of not being able to. If I "push through" chances are I will faint! I will also feel worse the next day for pushing myself to do what my body is no longer capable of.
THINK POSITIVE......
I am a positive person and I try to see the bright side of things. I have tried to ignore my illness and pretend as if its not there. It is not a mind over matter thing. Telling someone their symptoms will go away if they think positive is not helpful. It can not be controlled by thinking positive. I am positive of that! lol
YOU SHOULD TRY......
Let me stop you there, don't you think they have tried it all? They don't want to be sick so have tried everything under the sun to get better. They have tried all that has been offered from their doctors and medical professionals, as well as things seen on support groups. Unless you have the illness or are a medical professional you should leave this one alone.
YOU NEED TO GET OUT MORE.....
This is basically a guilt trip. A person with a invisible illness knows this. You are just stating the obvious. The obvious they cant do! This makes them feel guilty because they cant get out more. If the could they would. They are doing the best they can and doing what their body allows. So pointing out things that they missed or saying they should make it a point to attend something is just hurtful and putting them in a tough spot.
So there ya have it! My top 9 things of what not to say! Til next time
xoxo
