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The Power of Talking to Loved Ones About Plaque Psoriasis

I don’t recall the first time.

That is, the first time I spoke about my moderate to severe plaque psoriasis to my then-boyfriend and now-husband, Mike. When we started dating, I was going through a period of time when my plaque psoriasis was well managed, so there was no appearance of plaque psoriasis on my body. But I did want him to know before I had more symptoms. I also wanted to avoid the stress of explaining the new red spots. The start of a new relationship can feel like rainbows and butterflies. Sharing that you have a chronic disease may feel like a dark rain cloud, but it was comforting to me when it was out in the open. 

There wasn’t just one conversation about it. The conversations were natural and just evolved over time. Since then, I’ve become more and more comfortable talking about plaque psoriasis and my personal experiences with it. It’s a part of who I am. Even though I didn’t have any symptoms at the time, plaque psoriasis was always on my mind and I wanted him to know what was going through my head. Will the next stressful deadline or project be the one to worsen my plaque psoriasis? If I eat more than one cupcake, will that do it? If I get the flu or a cold, will my spots get worse? The what-ifs and the panic are always in there swirling around.

Mike is naturally curious and over the years has asked great questions about what plaque psoriasis is, how it gets worse and how it makes me feel. 

The “what it is” and “how it gets worse” is easy to explain — I have plaque psoriasis. It’s an autoimmune disease resulting from an overactive immune system. I get itchy, red spots all over my body, which stress makes worse, and nobody knows what causes it.

Usually when explaining what plaque psoriasis feels like, I stick to the symptoms. I try to compare it to something that people understand. Pretty much everyone knows what very dry winter skin feels like and nearly everyone knows what a very bad sunburn feels like. It’s a combination of those x100 for me. There are days when my skin feels too small for my body, or like it was washed, then left out to dry and it shrunk (sorry for the serious horror movie vibes). It burns and itches simultaneously and wearing clothes can be incredibly painful and uncomfortable. 

In addition to the physical symptoms, there are mental and emotional challenges that are hard to explain. It was really important to try to put those feelings into words, so Mike understood what I was going through when my plaque psoriasis became more difficult to manage.

I go through cycles of emotions that can affect our family. With the appearance of the spots, I start to panic and feel helpless. I know what’s coming and what I will be feeling like. I start feeling sad and question what I did to cause this. As my plaque psoriasis worsens, I start feeling angry. If it’s summer, will I be confident enough to manage the stares at the beach or pool? Will my daughters be embarrassed by my skin? Realistically I know the answer, but I still wonder if Mike will think I’m cute and be attracted to me?

When it comes to my plaque psoriasis, I try to vocalize how I’m feeling right away to ensure my family knows why I’m feeling sad or angry. My cuteness fears are put to rest right away and I know our foundation is strong. Communication when you have a chronic disease may help avoid feelings of confusion and confrontations as it did for me.

The support I receive from my husband and daughters throughout my plaque psoriasis journey is more than I could have ever asked for. With his encouragement and graphic design talents, I started my blog and advocacy work. Having Mike to talk to about things made me realize that I may be able to help others looking for lifestyle information about living with plaque psoriasis. He’s come to awareness walks with me, been interviewed for articles, and given me the space, and time, to advocate for the plaque psoriasis community.

Those initial conversations about moderate to severe plaque psoriasis may be scary and intimidating, but sharing may help. The more I talk about my plaque psoriasis, the less power it has over me.