This month marks my Cleariversary (a complete year of being plaque free). Before I say anything else, I have to tell you that I never thought I would be here. I never thought I would be rid of the excruciating symptoms that ravaged my body for so long. So, if you are reading this today while suffering, please have hope. Don’t give up fighting. Having a very active disease for most of my life taught me a lot of valuable lessons. Surprisingly, I seemed to have learned just as much about my disease in the year of reprieve from symptoms.
Worth is more than skin deep
As I look back at the past year, I realize first and foremost that I have always tied my worth to the state my skin is in. The less my lesions were showing, the better I felt about myself. Most of us do this with anything we don’t like about our bodies (weight, hair, etc). Unfortunately, because of how unpredictable psoriasis is, this means that I have had periods of thinking I am super awesome and also periods of shutting everyone out because I was so unhappy with myself.
As you can imagine, experiencing a whole year of “normal” skin made me feel pretty good about myself. Having such a long stretch of feeling good cleared up my mind too. Around month six is when I realized that I staked being “OK” in how my skin looked. I knew that this was no way to live. I knew that there was a likely chance of my visible symptoms coming back, and I didn’t want to lose this feeling of liking myself. That is when I had to take a good hard look and make the choice to like myself for my nonphysical attributes. I’ll be straight with you—this is something I have to choose to do every single day. It wasn’t a one-time change of mind. Some days I am great at it, but there are still days I struggle to see myself as more than skin.
Change in impact
It’s funny—because I didn’t have any sense of self-worth before my skin started to clear, I didn’t start advocating for my disease until after my symptoms went away. This year I hit the ground hard raising awareness. I started my YouTube channel and social media page for Psoriatic Pstandup, I got involved with National Psoriasis Foundation as a local division volunteer, and I have had the opportunity on two occasions to share my story in hopes of making a difference on a legislative level. All of these things have been deeply satisfying and have connected me to a community of wonderful, inspiring people.
I have felt the impact all of these efforts have had, but there is always a little part of me that wonders how much more of an impact I would make if I was still covered from head to toe. I’ve gotten pretty good at describing what my skin was like before finding a treatment that worked, but it doesn’t have the same response from those who have no experience with the disease. Don’t get me wrong—I wouldn’t trade in the time I have had from itching, flaking, bleeding, etc, but I constantly try to find new ways now to help people understand the gravity of psoriasis without the ability to just lift up my sleeve and show them.
I always assumed that once I was clear, I wouldn’t have to think about my disease anymore. Boy was I wrong! I think about my psoriasis now more than ever. Part of it is because of the two reasons I listed above. Another reason that psoriasis is taking up my head space is that I am always wondering when/if my physical symptoms will reemerge. But mostly, my mind is filled with all the reasons I am thankful I took the plunge and sought out treatment. I am thankful that I can sleep without constantly being woken up by itchy, bleeding skin. I am thankful that I no longer feel the need to carry lint rollers and a portable vacuum with me everywhere I go. And, finally, I am thankful that I am able to take these lessons I have learned and share them with others.