3 Major Things I Wish I Knew About Psoriasis Before My First Flare
For me, psoriasis was an uninvited guest that stayed with me way longer than expected. When psoriasis first came knocking at my door, in my mind I’m thinking, ok this is here for a weekend and will be gone in a few days. Well I was wrong, psoriasis made its debut in my life and refused to leave. My psoriasis was one of the most stubborn cases a lot of my doctors had seen. Since it came into my life while I was only a child, there weren’t many options to make it go away, and the choices I had were slim. Psoriasis moved into my life and brought along all of its baggage which included emotional, mental, and quality of life distress. I was diagnosed with psoriasis almost 20 years ago during a time when you said the term, “psoriasis,” people tilted their head and squinted their eyes followed by a request to repeat the word you just said. Back then people who knew of the disease were far and few between, and if they did know they usually were a medical professional or in some way affected by it personally. I’ve lived with psoriasis for a long time and I still struggle with its presence, at this point in my life, I’ve just learned how to deal with it the best I can. In hindsight, there are definitely things I wish I would have known. I hope my realizations can help newly diagnosed patients have a better grasp on what to do so one can thrive and not suffer from this disease.
I wish I knew: There were others like me
For almost 2 decades I lived with psoriasis and no one else knew. I kept the door shut to that part of my life by walking around with long sleeves and long pants through the 100-degree weather. I refused to let anyone in that part of my “house” because I didn’t want them to know what I was dealing with; the part that in my mind was dirty and shameful. I was embarrassed and hid psoriasis at all costs and I lied about its presence in my life. Every once in a while it would show off in front of peers by appearing on my face or neck, and I would do my best to divert attention somewhere else. Little did I know there were several people I crossed paths with who were living with this uninvited guest. It wasn’t until I revealed my burden that I learned there were others living with psoriasis just as I was. Had I known this sooner my self-esteem and advocacy would have started a long time ago.
I wish I knew: There was support
The National Psoriasis Foundation has been helping people live with psoriasis since 1967, so for at least 20 years prior to my arrival on earth. The online web became accessible early in my life but it wasn’t as advanced as it is today. Websites were available but this new wave of connecting online was underdeveloped. I remember doing an online search for psoriasis while in high school. I think the National Psoriasis Foundation site popped up. I recall glancing at it for a short period then being distracted by something else in which I didn’t. I didn’t search for the NPF again until 10 years later. As a child growing up I wish I knew the NPF and all its resources existed. They are the top organization for those living with psoriasis and their resources continue to grow. Recently they created the Patient Navigation Center, the first of its kind. This online platform allows people living with psoriasis to find doctors, explore access to treatment options, and much more!
I wish I knew: My triggers
As mentioned before my journey started with psoriasis due to chicken pox. At the time when I caught the virus, it was very common among children my age to catch it and there was no vaccine for it at the time. A lot of people in the psoriasis community discuss what triggers their disease. It has been proven through research that many people suffer from one or more triggers which include stress, environmental, allergic reactions, infection, injuries to the skin, and medications. For some their psoriasis comes and goes and can be pinpointed to a particular trigger. For myself, it’s not that simple. Once psoriasis moved into my life it stayed. It didn’t come and go depending on the stresses I had in my life and it wasn’t due to a medication I took. There are things that exacerbate the symptoms such as alcohol or hot showers, but without treatment, my psoriasis is always present. I wish I knew: advocacy would save my life If I would have known how much of a different advocacy for psoriasis would make in my life I would have started much sooner. I think about all the miss opportunities I had growing up, which I missed due to shame and fear of living with the disease. Advocacy changed my life; it gave me purpose, hope, and a voice. Through advocacy I was finally able to recognize that there were others living in fear just as I once had, it inspired me to be the voice of others afraid to speak out.
How often do you experience brain fog?