Step Into My World – I Dare You

I have been trying to explain psoriatic arthritis to people for over 35 years and they still don’t get it. Our disease is an autoimmune disease that occurs when your immune system starts attacking healthy joints and skin. This than causes inflammation that causes us to have joint pain, stiffness, swelling, and flaking.

I started getting the symptoms about 35 years ago but didn’t get the proper diagnosis until years later. As I’ve got older, my whole body is always in pain. My last doctor's appointment my doctor thought I was losing functions of some of my joints. This was not good news for me. I had over 25 pain points in my body.

Not everyone will understands your pain

I have had to live with the fact that people have no clue about my condition. I think this is since the medical community is still learning about chronic pain and how to treat it. It’s very confusing to me; pain has been around forever, why doesn’t everyone just accept it?

I was talking to a family member in her 90’s about this subject. She laughed and said, at least someone is listening to you. She said back in her day when a woman had any type of illness or pain that it meant they were going through the "change of life."

It’s hard to explain to someone that your whole body is in pain. I told my doctor my whole body hurt, and he asked me to point to the exact spot. He didn’t get it at the time but understands now. I am presently on the best drugs on the market. This is good for me, but I must deal with remarks from people all the time about getting addicted. I told someone that one of my pills is 600 milligrams; they still don’t believe it.

Seeing a pain specialist

Because I’m on so much medication I am required to see a pain specialist. Even he doesn’t understand when the “good drugs” don’t work. Again, you must explain the amount of pain that you are in every day. He doesn’t understand what it is to cry yourself to sleep. I don’t think they want us to share our suffering with them. I have lived with pain my whole life because I have an illness that causes pain, but it’s hard to live with the fact that others have ousted my pain and think that the answer is to just ignore the problem.

I have been on biologics for 16 years. I don’t know what this drug and all these other medications are doing to me. It’s a scary thought. I just know that when I’m in pain I need them all. It’s hard for people to understand that you are in pain all night and must stay in bed all day. Nobody gets it. There have been days where I have doubted myself. Are you really in that much pain? Pain is always there, even when you don’t see it.

Fighting together

I’m sure I have these doubts because of what people say to me. You're still in bed? You don’t look sick. You begin to think well maybe I’m ok and I’m not in that much pain, but I know better. I know I’m sick. We already fight the insurance companies, now we have doubts of our own, plus your friends and family to deal with. What most people don’t get is yes, I can do it, but should I be doing it and you don’t understand that while I’m doing it, how much pain I am in.

I will say this again. Let’s fight our illness and diagnosis together. Let’s go to Capitol Hill to fight, lets fight our doctors and insurance companies if we have too. There is one thing I have been hearing for some many years now. We need to be heard.

Let’s fight to have our voices heard. What does the future hold for us? This just means we will continue to fight for the quality of life that we deserve. Pain is real, it’s not a symptom.