What Do You Have Again? (suh-rahy-uh-sis)
People over the years have given me a name for my disease before I really understood what it was. I was asked do you have skin cancer, is that eczema, rosacea, measles, chicken pox, etc.
I would tell people what I had and for some reason, they would form their own opinion. I even told a doctor once that I had psoriasis and he said no it wasn’t. If you can’t convince a doctor of your condition, how can you convince the rest of the world?
At one point I was affected by what names people called my disease. I was already tired of my skin flaking, cracking, and bleeding. I was tired of the stares. I was tired of the negative remarks. I was tired of being judged. I was tired of people running in fear of me. I was tired of being treated as if I was a freak. Now, I’m at my breaking point because you decide to give my disease a name. Someone said I had leprosy. Really!!!! I just looked at this person and said NO, I don’t have leprosy. Someone asked me if I had a bad case of the measles? It would be so hurtful, but I realize now it was simply because they didn’t know the name, even if I said psoriasis, they didn’t know what it was.
Naming the stigma
The stigma of not knowing what something is, makes a person just give it any name they want.
I have learned some valuable lessons from this. I see plenty of people in a day’s time. I have looked at other people with skin issues and have learned not to jump to conclusions and not to give something a name if I don’t know what it is. I am certainly not going to go up to a person and tell them what I think they might have.
I think for the sake of people's feelings we need to not assume we know their condition and what they have unless we know for sure. I know for me I don’t want someone to assume I have something I don’t. I remember when I was having a psoriatic arthritis flare that someone ask me if I had gout.
My disease does have a name. If you are that curious and need to know, just ask. I will tell you and educate you at the same time, don’t assume. I would respect you a lot more.
Whether I’m moving slow, can’t walk, having a flare or just having a bad psoriasis day. I want my disease to be called by its proper name. I know that in all my years of having this disease that it does have a name. But calling my disease what it’s not, makes a big difference to me. I have felt really bad and sick to my stomach when I was asked if I have cancer or do you have leprosy? It demeans you and makes you feel worse than you already do.
My message today would be if you don’t know what a person has, it would be better to ask politely and let them tell you. The person asking might be really concerned or know someone who has what you have, but just don’t know the name of the disease.
It really is all in the name.
How often do you experience brain fog?