Not Just My Disease

Last updated: July 2018

I have learned so much over the past 50 years about having psoriasis and psoriatic arthritis. For those who do not have a chronic illness, I want to share some things with you. For years I just wanted people to know how I was feeling. I wanted others to know what I was going though. I wanted you to feel my pain and my struggles. We just want to be loved like everyone else.

Don’t tell me you know how I feel. I don’t know how I feel. There are some days I feel I have no worth because I was just in bed all day. I have learned to love myself. Try to reach out to your loved ones and tell them how valuable they are. They would really appreciate it.

Living with chronic pain

We live with pain every day. I never give up and neither should you. I will push forward every single day until the end and I still push some more. Tell someone today how strong they are. I know that when I am hurting; I feel when someone else is hurting also. I know what it’s like to have support and so I give support back. I have a very unique perspective on life. I often have to find my limitations and don’t take anything for granted.

There are so many times that I have had to cancel appointments. I don’t know from day to day how I am going to feel the next day. If I don’t show up for your event, believe me, I feel just as bad as you do. Please let me know that you understand. I used to have a few bad days a year now that has turned into a few bad days a week.

I have lived with this pain for years. Most of the time I just don’t mention it. I don’t want to be a burden to anyone, so I don’t tell anyone when I am struggling. I was part of the Health Union conference recently. It was so inspired and uplifting. I just loved the event and had a wonderful time there. I remember someone telling me that I don’t look sick. I just said thank you. I have heard this before. I was wondering to myself if they realize under my appearance I am fighting to be well? Do they realize that the minute I hit my room I am going to fall apart and start popping pills? Do they realize that I had to take my medication at a certain time to get me through the day to attend the event? I have learned to mask my pain with smiles so others won’t notice.

Don't judge yourself

I have a good support system of family and friends. I don’t feel too bad when I have to whine to them. I know they will take the time to listen. When I was younger I used to think that people would get tired of me talking about my psoriasis.

It’s so easy to judge yourself. But then I looked back at all the great experiences I have had and all the people I have helped. I know that I am not weak and that I am willing to show my strength every day.

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