Psoriasis Awareness: Ask the Advocates
When it comes to your health, you can be one of your best advocates. But when you’re in pain and coping with the emotional toll of psoriasis, it isn’t always easy to advocate for your own needs. We asked our advocates for their perspectives and for some words of wisdom when it comes to living with psoriasis.
Be aware of your attitude and thoughts
If you have psoriasis, then staying positive will become your greatest ally. Negative thoughts and a negative attitude will not help you or your psoriasis. Reading positive books, saying affirmations and practicing kindness are also other good ways to add positivity to your daily life. Make one person smile. Don’t get sucked into other people’s battles, either…staying positive is one of the best things you can do for your psoriasis and yourself.
My top tip for dealing with a flare is to rest, take it easy, and give the TLC that your skin requires. Do what you need to do to feel better and everything else will fall into place. Connect with people, resources, and communities. It will help in times when you feel really alone. Reach out to the people who are around you. Do not be afraid to need help, speak to your doctor. Tell loved ones what you need – they can’t guess how to help. But they can listen to your concerns and help you navigate these hard times. Ask for help with doing things around the house during a flare. Having loved ones be more understanding of your needs to rest and get space can go very far.
Having psoriasis is hard and humbling. However, it doesn’t determine who you are. Learning to love and accept myself with psoriasis (everything that comes with it) is one of the best things that I could have done for myself.
Let go of the shame
For me, advocacy means freedom. Sharing my story has allowed me to erase the black veil of embarrassment due to psoriasis. I’m no longer plagued by the shame of this disease. Once I started to share my story it made me realize there were a lot more people who would continue to love and accept me than those who would not.
Listen to your body
I have learned from this experience that it is important to be my own advocate. I had a disappointing experience when I first saw a rheumatologist to see if I was developing psoriatic arthritis. Later I had the opportunity to meet a great rheumatologist that chaired the cycle event for National Psoriasis Foundation in my hometown. I plan to reach out to him. It’s so much better to go for a second (or third, or fourth) opinion than risk letting a misdiagnosis keep me in pain. As much as I don’t like going to the doctor, I don’t like being in pain even more. I want to be able to run and play with my kids….So, keep seeking out help until you find the answer. Maybe it isn’t PsA, but having pain of any sort is your body telling you something is wrong.
Find an online community
Living with psoriasis is tough but it’s easier when you don’t have to go through it alone. You may not have friends or family who can relate, but joining an online community connects you with tens of thousands of people who can! It was through these online psoriasis communities that I first learned about phototherapy, what the best OTC shampoos were, how to recognize early signs of psoriatic arthritis, and how I could use meditation and mindfulness to manage flares. It was also through these communities that I learned the importance of being an advocate. Whenever you have the opportunity, be a voice for others who share in your struggles. Participate in the creation of a welcoming and encouraging space for your fellow flakers. Be a good steward in your psoriasis community and you’ll help to pave the way for everyone coming after you.
Tell us: What are your best tips for being your own advocate and coping with psoriasis?