Everyone Has a Story to Tell

When you have a chronic illness like psoriatic arthritis (PsA), it’s common to see patients start to compare themselves to others. Who has it worse? Who is the most inspiring? Who is the bravest?

I’ve come to realize that all of us have a story to tell. We’re all brave, and we’re all inspiring.

What is your story?

Maybe it was the time you stood up for yourself when getting stares for parking in the handicap spot, or maybe it was the time you ended up in the hospital for an allergic reaction to medication, or maybe – just maybe – it was the time you felt brave enough to simply face the pain and get out of bed.

No one is a better you than you. No one can share your story better than you. And no one can put the emotion into your story better than you.

Share your story

Living with PsA is not easy. Whether your symptoms are mild or even in remission, or whether your disease is severe and debilitating, PsA undoubtedly impacts your life in some fashion.

If you want to make a difference, you need to use your voice. While some find it easy to speak in front of a crowd or advocate on Capitol Hill, others find quiet ways to share their story. It takes just as much bravery to share your story with 50 people as it does with one member of your family. Do not underestimate the power of one person hearing how PsA impacts your life.

And using your voice doesn’t necessarily mean opening your mouth. You can share your voice in photos, music and other forms of art. Tell your story however you feel comfortable.

Why tell it?

• It empowers you. When you share your story, you empower yourself to rise above the disease. You begin to face PsA head-on, and you may become more active in your own healthcare decisions.
• It inspires others. For those who are newly diagnosed or switching treatments, you can provide comfort and inspiration to patients who feel alone or scared.
• It educates the community. How many times has someone told you that your PsA is just like rheumatoid arthritis? How many times have you heard someone tell you they also have arthritis – in their shoulder from playing too much tennis? According to the Arthritis Foundation, there are more than 100 forms of arthritis, but still many think they are all the same. Tell your story and spread awareness that PsA is a unique disease that affects patients differently.
• It’s cathartic. Ever have something weigh on you, but once you get it off your chest, you feel so much better emotionally? It’s the same with telling your PsA story. By telling your story, you are no longer hiding and you start to make sense of how this disease is impacting your life on so many different levels.

What not to do

• Don’t try to one-up another patient. Telling your story isn’t a “misery loves company” thing. It is a compassion breeds more compassion. And, really, can’t we all use a little more of that in our lives? Each patient is different. Each of us has our own unique stories worth telling, but not at the expense of putting another down or lessening what another experiences.
• Focus on only the horrible. Sure, PsA stinks like rotten garbage, but if you focus only on the negative, it’s easy to spiral downward. When you tell your story, but sure to mention the good things. Maybe it was the compassionate nurse in the doctor’s office who calmed your fears of biologics. Maybe it was the fact that insurance finally approved your prior authorization. Maybe it was the time you finally conquered that flight of stairs. None of this easy, but stories are better when there is light and hope to shine on the darkness.
• Diminish your triumphs. PsA brings out many challenges – big and small. Celebrate the victories! When others see how proud you are of your accomplishments – even the little ones – it puts the disease into perspective and shows that you will not give up.