This New Thing Called "Remission Guilt"
I'm about to give you a glimpse inside my mind as a patient advocate. Today during a twitter chat a question was asked, "What are your biggest challenges as a patient advocate?" My response, one of many, included "Remaining connected to the community during remission." (I will address other challenges in an upcoming post)
Psoriasis has been apart of my life since I was 7, and boy has it been a stubborn but worthwhile journey. I've tried almost every psoriasis drug imaginable. I've done creams, pills, light therapy, occlusion, biologics; you name it, I've tried it. To my disbelief, my relief with this disease wouldn't come until 18 years after my initial diagnoses. My doctor finally found effective treatments which work for me (at least for a long period of time before my body becomes used to them). Before finding a treatment that worked, my body was around 90% covered with psoriasis. Now, my skin is 100% clear from the disease. If you didn't know me prior to my remission and you looked at my skin today versus 3 years ago, you wouldn't believe that this chocolate cocoa brown skin belongs to the same woman.
My path into advocacy
Prior to treatment, I was held captive to the shame of psoriasis for around 15 years before I decided to share my story. Becoming involved with the psoriasis community wasn't intentional, it wasn't on my to-do list. 7 years ago I had my "coming out" moment on a psoriasis online support group. I basically wrote a suicide letter to my fears due to life with the condition which went viral in the psoriasis community so-to-speak. In that letter, I killed those fears so that I could truly live. Unbeknownst to me, that moment was the start to my advocacy. From there I went on to start a blog and share all my embarrassing and most intimate secrets about living with this disease. I let go of the shame by speaking and being honest about my truth in hopes it would give others a better understanding of this disease and to also help others realize they aren't alone.
When I was 90% covered it was so much easier to draw passion from how I was feeling. I was constantly plagued with those overwhelming feelings of being out in public, dating, and just all together paranoia. But now, I'm clear. Although clear skin does bring its own set of challenges, I don't have the same fears I once had when I was covered with this disease from head to toe, I feel freer. This may seem strange, but at times I feel bad that my counterparts can't experience clear skin. I ask myself, do I still have a voice in this community or do I no longer have a place to speak?
Another advocate referred to my above feelings as "remission guilt," which means you feel bad that those currently dealing with the disease haven't achieved remission although you have. I keep myself immersed in the community so I can continue to learn what the community needs from those advocating for patients living with psoriasis.
Advocacy is important, even when in remission
At the beginning of the year, I had a huge opportunity presented to me relating to psoriasis, skin, and loving yourself in-spite of your imperfections. To see if I would be cast I had to do an interview and they also requested current pictures of my skin to see it's present-day state. Two months past and I received an email stating I did not make the campaign. Rumors circulated in the psoriasis community that a few of us weren't picked because we didn't have enough visible psoriasis which didn't make us a good fit for the project.
This "guilt" has made me empathize with those in my old shoes even more. When in group settings among others dealing with the disease, I've learned to avoid saying or sharing that life is much better without psoriasis. I think about those people who can't achieve psoriasis free skin who may never find an effective treatment. Does that mean they should stop living or pursuing things they desire the most until they can find relief? Does that mean life can't be great until you rid of this disease? The answer to both of those questions are, NO. I don't want to present remission as something that sets one free, I want to encourage people to free themselves under all circumstances regardless if the psoriasis is present or not.
What I instead try to teach is learning to love yourself regardless of your health's current circumstances. True love in any sense is not when you can love something at it's best, it's when you love something at it's worst when there is nothing it can offer you.
How often do you experience brain fog?