Have You Ever Thought Of Telling Your Story?

Being a psoriasis advocate and raising awareness can seem daunting - and perhaps too much trouble. Why would I want to tell my painful story over and over when it's hard enough to live it daily? Would anyone even care? How much difference could it actually make?

If advocacy has crossed your mind, you may have faced these questions. My advice? Advocacy is what you make it - all at your own emotional comfort level. While I can't speak for physical comfort, you can approach advocacy the same way you would approach treatment - one step - and one breath - at a time.

Where do you even start?

I never thought about being an advocate. I didn't even know where to start or how to share my experience. I've now learned that it begins with the willingness to share. Every person is unique with a unique outlook and a unique experience - you are no different, and neither is your story.

The decision to share relinquishes the control the condition has over your mind, provides a new sense of freedom, and validates others who may be feeling lost. After all, no one can tell it better than you. I won't lie and say that it's not scary the first couple of times, but if I can do it, so can you.

Sharing your story helps others, and it helps you.

What can you even share?

Symptom and pain tracking is a part of managing life with psoriasis. Getting started in advocacy can be as simple as that. You're writing down your symptoms in a journal. You're sharing them with trusted people and your doctor. Why not put a narrative to that?

Share what you've learned. Share the challenges. Share the discrepancies, the pain, the inconveniences, and most importantly, share the wins. No one should have to navigate the woes of psoriasis alone - and one story can offer connection and the opportunity to feel less alone.

Putting your feelings and experience into awareness helps eliminate stigma and allows people to understand the reality of chronic psoriasis.

Finding the courage to begin

The decision to tell my story started when I felt the utmost disappointment and didn't know where else to turn. The emotional toll of this condition is not to be ignored, and I remember feeling so frustrated and lost.

My body was 80% covered in plaques, and I put my full-hearted hope in my first biologic. I was confident this would be my wonder drug. There was no telling me differently - I knew this would send me into remission, and my nightmare would be over. Fast forward 6 months, and it had barely touched my plaque-covered body.

Completely devastated, I decided to stop treatment. Feeling utterly lost, I told my husband of one year that I would let him out of our marriage without a fight.

When inspiration strikes...

You read that right. Many people are shocked and taken aback by my matter-of-fact statement. I didn't want to seem like a burden. This statement usually draws a reader or an individual in - usually hearing a collective "Wow!". It is enough to begin sharing and validating the frustrations of multiple treatments and insurance companies.

I also explain the importance of being hands-on with psoriasis treatment and having a solid relationship with your doctor.

Lucky for me, I married a great man. There was never a moment when he kept telling me that he married me, knowing I had psoriasis. After a month or so of him telling me that he wasn't going anywhere - a light bulb went off.

We're ready to hear your story

I decided if I had to live with this disease for the rest of my life, I might as well try to help others. I didn't know how but I was determined to do it. If you're looking for a sign, this is it. If you're looking for a place to start, look no further.

Consider sharing your story right here on PlaquePsoriasis.com by clicking the blue button below.

We all have a story. If you start telling others about your psoriasis journey, I can almost guarantee that you will start feeling like you are taking back control. I know I did.

I feel like psoriasis gave my life purpose by telling my story honestly. Sounds crazy, right? I encourage you - to step out of the shadow by telling your own experience and find out how empowering it truly is. You never know who you might inspire.