Living with a chronic illness is not an easy task. There are obstacles that have to be faced daily. My oldest daughter has a severe peanut/tree-nut allergy that we discovered when she was seven months old. She is now five, so we have walked in these shoes for a while. We always have to be on our game and know what our child is eating, and what is in it. I have to read labels every time we buy something. This is now our “normal” but there are several things that we do not want a person to say to us, who has no idea what it is like.People who live with diseases such as cystic fibrosis, they do not want to hear certain things either:
- “You don’t look sick.” My response to that is, “Ummm thanks? I guess.” So, the question is, what are you suppose to look like? I know that some illnesses are very difficult to live with, and they do show signs on the outside. Most chronic illness do not have a particular look, though.
- One of my all time favorites that we get to hear about my daughter’s allergy,”Oh it must be so hard being allergic to peanuts. I’m sorry, poor girl.” Nothing gets under my skin more. Yes, having food allergies isn’t “easy” per say, but it is manageable. We just can’t have an off day, and decide not to read the ingredients of something. Us doing that puts our daughter in great danger. Yes, we do have to ask to speak to a manager at every restaurant, and we rarely get to enjoy dessert, but we are fine.
Living with Cystic Fibrosis you can’t have a “lazy day” either. You have to do your treatments whether you are sick or not. You have to take all of your medication and plan your day around your treatments. It’s not easy. You have to be strong and dedicated so that you can stay healthy. I promise no one wants to hear that you are sorry. Even though you are trying to be kind, it does not make having the illness any better.
Living with my daughter and having to “be on my game” at all times, has made me respect people and their health issues a lot more. People living with chronic illness just want to be treated like everyone else. They don’t want to have special treatment, get picked because you “feel sorry” for them. They just want to blend in with everyone else. So please just keep this in mind when speaking with someone that has a health issue. They aren’t looking for special treatment, they just want to be one of the guys.