We all know at least one family dealing with some sort of illness. It could be a simple case of the flu, a difficult birth, a chronic condition, or even cancer. Believe it or not, there’s some does and don’t that could make interacting with them a whole lot easier and it doesn’t cost a penny.
Medical Families are usually those dealing with major illnesses or long lasting chronic conditions. Sometimes these things are blaringly obvious, other times you can’t tell by just looking. Those are known as invisible illnesses. They do exist and they are devastating. They’re ear marked by multiple specialists, hospitalizations and numerous appointments.
Some families decide to keep things quiet, others are more open. I chose to take my son’s illnesses public, he would prefer the quiet style. Neither of us particularly care for the attention, but I found that keeping things quiet led to people not only not understanding his conditions, but also disbelief.
If you run into us at Walmart or walking through town and want to talk, here’s a few pointers:
- Be sincere. I can tell if you are just making casual conversation or if you really do care. I’m becoming a pro at spotting BS.
- Please don’t make suggestions based on what so n so’s great aunt from another marriage went through. My son personally has 10-12 specialists at any given time.
- Please don’t mention medical marijuana. My son will eventually need a transplant. If he takes anything without his doctor prescribing it, it could mean his life. UNOS, the people who say who can have an organ and who can’t, has strict mandates. I have come to terms that medical marijuana can help a lot of people. But it could be a death sentence for a transplant patient.
- Listen to hear, not to respond.
- If you have a question, ask.
- I will remember who avoided me. A friendly wave and a hello do wonders.
- If it sounds too bad to be true, listen, do a bit of research, but never outright call me a liar. And don’t tell others I am lying until you have done your research. I am aware that people try scamming others. It is despicable. I have medical records to back me up and I’m not afraid to show them. And fakes don’t get 10-12 specialists. (and yes this has happened. Yes it has hurt my son’s efforts. And yes it is extremely hurtful.)
- Don’t tell me how young he is. Don’t tell me that he is too young for this all to be happening. Don’t tell me how good he looks. Or that you would never be able to tell he’s so sick. I’m very well aware of all of that. You don’t see him when he can’t walk. You don’t see him when he’s crying in pain. You see him when he is having a super good day.
Yes. some of these things sound bitter. But, I am bitter about some things. It’s part of life. I am not alone.
Is there something that I’ve missed? What drives you completely bonkers when you’re asked?