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Welcome to the sixth installment of our “Spotlighted Blogger” series. So far, we’ve interviewed patient bloggers living with gastroparesis, type I diabetes, bipolar I disorder, Parkinson’s disease and ALS, and today we introduce Lissa, a PatientsLikeMe member who has lived with psoriasis for over a decade. An early participant in our psoriasis forum room, Lissa appreciates the support of family and friends but has discovered an element of kinship through meeting other psoriasis patients.
Entitled Psoriasis Girl's Point of View, Lissa’s new blog chronicles the ups and downs of recurring psoriasis outbreaks (which cover most of her body with itchy red plaques), working with a dermatologist and experimenting with different treatments and skin care regimens. Most recently, she explored UVB photo therapy and candidly showed the before and after photos of the initial results. If you’re wondering how she finds perspective amidst these lifelong challenges, read on for inspiration.
1. I see you first experienced psoriasis as a teenager. How have things changed since you were first diagnosed?
You know how teens can be! It was tough handling the criticism young people subject themselves and each other to.
My psoriasis became more of a permanent fixture on my body in my early-to-mid twenties, instead of coming and going as it usually did in my teens. I suppose as the stress of being ‘part of the real world’ increased, so did my psoriasis outbreaks: working full-time in retail management and balancing going to school part-time, martial arts classes, and a relationship. I eventually resigned from work in late 2010 to go back to college full-time and be a homemaker, with stress being an influential factor. My stress level is fairly low these days, however the psoriasis remains uncontrollable.
My thinking about psoriasis has certainly changed. When I was a teen, I didn’t really put any thought into the fact that this is something I will deal with my entire life. I guess I just assumed it would be minor and come and go, not knowing that I would one day be 85% covered, with it affecting so many aspects of my life, including trying to treat psoriasis while trying to conceive! It’s a struggle but I know I need to stay positive.
2. Your blog conveys a great attitude. What is the most stressful aspect of having psoriasis, and what helps you to cope?
In my blog, I’m just being real, just being myself: someone who is learning to be positive. I truly believe the mind is powerful, and while I wish I could just think my psoriasis away, I know that staying positive helps.
There are many frustrations to having psoriasis, and I’m sure they vary from person to person. I get stressed about money and affording prescriptions and treatments, stressed about public interaction when it’s hard to hide my plaques. But one thing that really gets me feeling like I’m spinning down a dark hole is when a medication or treatment seems to be working and it looks like I will finally get all the psoriasis to go away and then new plaques begin to crop up and quickly spread like wildfire.
I cope by talking to my husband and getting back rubs, trying to stay positive and keeping my mind focused on something else, like reading or cooking. I also think it’s important to exercise to fight stress. As far as providing comfort to psoriasis, a good lotion that’s geared towards itch-relief, is fragrance-free, and thick and creamy is the weapon of choice to slather on deliberately as often as necessary between topical Rx applications. Other than that, gotta let “the attitude determine the altitude.”
3. Great to see you updating your profile often. Which profile tools do you find most helpful, and why?
I like the charts. I like having the ability to track my symptoms, my mood, my quality of life, and so forth to look for patterns and connections. I find them all to be in-depth, and they ask good questions. I tried keeping a journal in the past to track my psoriasis, but this is better because it’s easier to read, all on one page, color-coded, and more detailed. I also like the InstantMe tool. It’s like a status update.
The community aspect is great. Between the forums, personal messages, following people, commenting on other patients’ InstantMe [answers], and updating your own info, there’s a lot to do on the site. When I first signed up, I wasn’t expecting all the useful tools – I just thought it was a community.
4. What have you learned from fellow PatientsLikeMe members? Anything that has surprised or inspired you?
I’ve learned that there are other people that have their good days and bad days, just like I do. They worry about similar things that I do, so we can bounce things off one another, seek advice and solace in one another. We’ve talked about treatments and medicines, lotions, make-up, and fashion, and how we relate these things to dealing with psoriasis. I’ve been inspired by other patients to try to feel better, and to try to make others feel better too, help them stay positive.
It’s nice to know there’s a community of real people who truly understand how I feel. My husband and friends and family are empathetic and there for me, but the other patients are people who really know what it’s like to feel the way I’ve felt. I really feel like I can talk about anything to some of the friends I’ve made through PatientsLikeMe.
Want to connect with and learn from psoriasis patients like you?
Join PatientsLikeMe Now! (It’s free)
