Psoriasis can be a very lonely disease. The unpredictability of the flares, the misconceptions around the disease and its impact on your mental health make it seem as though no one understands what you are going through, leaving you to feel as though you are unable to talk to those closest to you about it.
While you might not feel like talking, it can be helpful. Finding the words or ways to explain it to your parents, friends and children can be difficult, especially when you also must tackle tough questions from those who you love the most. It is important to remember that they cannot read your mind, and although it’s sometimes the only thing you can think about, it isn’t always obvious to others how psoriasis affects you.
Here are how the situations went for me:
Teaching the teachers – my parents
Growing up, my parents were my main source of information for my psoriasis and, because this was before internet searches, they had a limited understanding of the condition and its symptoms. They hadn’t been told about symptoms like fatigue, and how that might make some days harder. Sitting them down all those years later to explain what I had come to understand about psoriasis and how it impacted me beyond the flares was a challenge, but it allowed me to give them a much deeper understanding of the condition and opened a wider conversation around how they could support me and help me to educate others on the condition, too.
Recruiting cheerleaders – my friends
I have always been open and honest with my friends about psoriasis, often explaining it before they had a chance to ask. I talk to them regularly about the challenges I face with psoriasis, the situations and the words that can leave me feeling upset. They appreciate this, as they had not considered that something as simple as hanging out at the beach or wearing a shorter skirt in the summer could leave me feeling vulnerable and scared. Because of these conversations, they have all been great cheerleaders for me and my mission to raise awareness of psoriasis.
Shaping young hearts and minds – my child
I am a firm believer that to effect change we have to shape the hearts and minds of our younger generation. If I want my child to accept and embrace psoriasis, I must show him how to do that.
This is not always easy. My little boy loves swimming, and the pool is the one area where I feel most vulnerable. It involves me stripping down to a costume where my psoriasis feels on display. It is a place of bad memories where a lifeguard once removed me from the pool to ask if I was contagious.
However, if I am to show my boy how to accept that people are different, I must lead by example. So, we get in the pool, I smile at the stares. I explain that I am not contagious, and we continue to educate people together, so he can learn from me how to handle situations like that in the future.
How to start a conversation
Conversations about your psoriasis may not come up naturally, so it’s up to you to decide when you want to talk to your loved ones about it. Starting these conversations can feel intimidating for a number of reasons—but there is a whole community of people who have similar experiences with their own psoriasis. I’ve found the psoriasis community to be extremely welcoming and empowering.
Before having a conversation with your family and friends, you could start by sharing your story here on Let Me Be Clear along with other real stories from people living with psoriasis, or through an online support group to help you feel more comfortable talking about your psoriasis.
Maybe you find the idea of face-to-face conversations too difficult. If this is the case, try writing it down or sending it in a text or e-mail. Telling your loved ones how you feel can be the best way to help you manage your condition.
Talking to my loved ones about how psoriasis impacts my life can be difficult at times, but with every conversation I have it gets easier, and trust me having their support is worth it in the end.
You deserve to feel confident in your skin, but how do you have a clear conversation about your psoriasis goals with your doctor? Sometimes speaking up can be the hardest part.
Be clear about your goals. The power to speak up, feel confident and demand the best care is within you. Sharing your story could be your next step to feeling free from psoriasis—and possibly inspire others to do the same.