Hand holding another hand that is only outlines of someone who was once there.

Losing a Vital Part of My Support System

Last updated: March 2022

Throughout my advocacy, I have believed in the benefit of a reliable support system. It is my thought that having people around you providing emotional support can make managing life with psoriasis a little bit easier.

I didn't have a support system when I was first diagnosed. I had no one I could talk to. Even my mom, who was a nurse, could not understand it. I cannot even express how alone I felt.

Connection in community

The year was 2003, and no one knew anything about psoriasis. It felt like a taboo word no one would say, let alone talk about. All I could do at the time was put my trust in the doctors that were treating me.

I found the National Psoriasis Foundation (NPF) about six years later. Their resources were validating and helpful. They provided a safe space to begin volunteering and advocating. I soon found myself prepared to attend their annual volunteer conference. I vividly remember that day and the people I met who shared similar psoriasis journeys.

There seems to be such power in this connection. Everyone was talking, sharing, and swapping stories. I was blown away. The feeling you get when you meet people who understand it felt pretty powerful.

It was the first time I felt like I belonged. Many of those people I met at that conference are still my friends to this very day.

Turning to my biggest supporter

After that conference, I returned home with excitement. I needed to share this with someone, whether they would completely understand or not. That person was my person, my mom. To my surprise, she was so interested and wanted to learn more.

We had many talks about the advocacy work I was doing with the NPF. The more I learned, the more she learned. She even started going to events with me. If there was any way she could help in what I was doing, then she was right there without hesitation.

She became my biggest supporter. Isn't that what mothers are supposed to do?

The impact of loss

I recently lost my mother, one of my biggest supporters. It has left a void in so many ways. Maybe it is a part of the grieving process I am going through.

I know that an essential part of my support system is no more. The part that does bring me comfort is the psoriasis family that I now have.

In particular, one person that has been my best friend since that conference has indeed been such a blessing right now.

Support can turn everything around

I will continue to tell anyone who will listen: find that support system. Psoriasis is a lifelong journey filled with ups and downs. If you do not have a support system, please research support groups.

If you do and are lucky enough to have that support system, lean on them during those lows. I cannot stress that enough. I never knew how essential that support system was until now while I was going through one of the most challenging times in my life.

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