“You didn’t have enough psoriasis,” proclaimed one of my fellow advocates as an explanation for why I wasn’t picked for a “Love Your Skin” commercial campaign, which was going to feature people living with various skin conditions.
Honestly, not being picked stung a little. It made me wonder if, after two years of experiencing almost psoriasis-free skin due to an effective treatment, I still had a voice in this community. Did I still have a right to speak out about this condition or should I now take a seat on the sidelines since I wasn’t presently having a bad flare?
Could I still relate to those who hadn’t found an effective treatment and were still being plagued by this disease? Could those covered with psoriasis still relate to me? As crazy as it may seem, at that moment I felt bad for having clear skin. “If I’d had more psoriasis they would have picked me,” I thought to myself. “Maybe my story would have been better received and understood.” For a second, I had mixed feelings about not being plagued by psoriasis. But then I remembered what life was like with the disease and those thoughts quickly evaporated.
I later shared these sentiments through a Twitter chat, where a young lady referred to these feelings as “remission guilt.” A light bulb went off in my mind as I realized that, yes, that’s exactly what I was dealing with. It was also good to know I wasn’t the only one experiencing these feelings.
What is remission guilt?
Remission guilt sometimes occurs when an advocate or person living with a chronic condition finds relief from symptoms, without or without treatment.
During remission, you might:
- Question the validity of your story in your specific disease community
- Feel guilt for being clear while others in the community are still suffering and unable to find relief
- Contemplate discontinuing engagement within your community
- Wonder if others who are still suffering will still want to hear from you
What I’ve learned from being in remission
Going from 90 percent covered to virtually clear has taught me a great deal about what it means to advocate for this disease. It’s made me take a step back and become more sensitive and aware of what others are going through.
The truth is, even in remission, those of us in our respective disease communities still have a story to tell. Being in remission does not mean being cured, it signifies relief — for now. Chronic illnesses are unpredictable and your status could change at any given moment.
I often worry about my disease returning, which I talk about in another blog entitled “Clear Skin Brings New Fears.” This phase of remission has taught me another valuable lesson, which is not to gloat or celebrate my life with clear skin. I feel as though celebrating further stigmatizes and promotes shame about the disease. Clear skin can help improve your quality of life, but that doesn’t mean those currently experiencing a flare should refuse to truly live, nor should they wait to find an effective treatment before fully enjoying life.
Now I promote loving yourself no matter what phase you’re in. If you’re flared from head to toe, you need to find the ability to love yourself regardless. The key to loving yourself unconditionally is not based upon being your best or unflawed self, it’s about learning to love who you are under all circumstances, no matter what they may be.