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You Really Didn’t Know?

I was 25 years old when I first started experiencing the symptoms of psoriatic arthritis and it took another 25 years before I was diagnosed properly.

As I have began to tell my story about this disease to others, the more I realize how little my family and friends know about me. They don’t have a clue what I have been through or what I go through on a daily basis. I thought they all knew my story and my struggles all these years, but apparently not.

I was talking to a friend of twenty years and telling her how I felt about the biologic coming out and how much they have change my life in the last 10 years and that I really needed a shot today because the pain was so bad. She looked at me very confused and I realize at that moment she didn’t know what I was talking about.

What it really means to have psoriatic arthritis

I begin to tell her that I have to see a dermatologist and a rheumatologist monthly to get treated for my psoriasis and psoriatic arthritis. I had to explain to her that without the proper medication I would be in pain and totally covered in scales and flare up from this disease. That the itch would be unbearable and drive me up a wall. I wouldn’t be able to walk very fast without the proper medication.

I told her that the pain I have is so bad that I actually cry in my sleep when I can sleep and the struggles I have to go through each and every day. This disease can cripple you and have you in bed for days.

I was in total shock as to how much she didn’t know about me. She had no idea what it really meant to have psoriasis and psoriatic arthritis. The difficulty I’ve had to endure to find the right combination of medicines that worked for me. After finding a treatment that works, how I had to fight with the insurance company to get an approval. It has been a struggle and how much it takes out of you.

I have to take extra care of myself so I can be a productive citizen in this world and keep a job. I have an autoimmune disease that can damage my organs and joints. My mind has to be strong and I always need to stay focus. I can’t forget to take a shot.

She said you have really hid yourself very well for years. It took hours of telling her my story for her to really get it. It took me even longer to grasp that I had hidden myself from the world.

Share your story

You have to tell your story. How is anyone going to know what is going on with you? Your family and friends know you, but they don’t really know you. I thought I had scream and yell about my disease all these years, but apparently, I wasn’t screaming loud enough.

You need to share your story so that family and friends can be there for you. I share my story to inspire, not for pity. I have learned to share my story to whoever will listen. I can’t assume that everyone knows how I feel or what I am going through with psoriasis and psoriatic arthritis.

If a friend of twenty years doesn’t know what I’m going through, how can I expect the outside world to know?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Diane T author
    2 years ago

    Hello Mormor,

    I just wanted to check in and see how you are doing. I know this is a rough journey, but you can do it. Your right, people don’t have a clue what we deal with on a daily basic. It is our job to educate them. Never give up the fight. If someone loves you, they will feel your pain, let them. You never want to travel alone. We are here if you need us.

    Diane Talbert

  • Mormor
    2 years ago

    Most of my people say they know how much I hurt, they “can see it!” I know they don’t know the half of it, but they are too compassionate to hear more about my struggle. That may even be part of why my boyfriend of almost 3 years left me, I could see how much he wanted to help me and how much it hurt him to see my pain. and not be able too make it go away. But he would rarely let me help him when his pain was the same, if not worse, than mine.

  • VickiN moderator
    2 years ago

    Mormor, did your former boyfriend also suffer from chronic pain? I’m very sorry that the relationship didn’t work out. PsA is very difficult for us, and it’s difficult for the people that we love to watch us be in pain. How are you doing now?
    -Victoria, Community Moderator

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