Getting Involved: Starting My Advocacy Journey
Last updated: October 2023
I have always been a person who loves to help others. It is part of my identity, and my heart is truly happy when I am able to be there for others. Even in my choice of career, working in Social Services, and my organizational affiliations, I am tied to service. So, for me, becoming involved in psoriatic disease advocacy was something that I knew I wanted to do. I found that specifically for people of color, there was a lack of information as well as supports within the psoriatic disease community. I knew that I wanted to become involved and allow for our voices to be heard. Even if it started with just my single voice.
After receiving support through the National Psoriasis Foundation, I felt compelled to give back. I became an Advocate and Mentor within the organization. It was easy for me to decide to become involved with them because I was so impressed by all who helped me from the foundation. I truly received so much support and felt a genuine feeling that everyone who I connected with truly cared. I obtained all of the information on how to get involved and began my journey of advocacy.
Expanding my goals
When I first dived into advocacy, I thought that I was going to focus primarily on advocating for people of color. I even began my own support group to address our needs. This will always be my first priority in the work I do. However, as I began to learn more about the challenges as a whole those of us in the psoriatic disease community face, I knew that I wanted to expand upon my advocacy. I learned about issues with insurance companies, step therapy, access to care and so much more. I first participated in a virtual Capitol Hill Day meeting with Senate and House leaders in Washington with fellow advocates to do our part to create change for our community. Since then, I have attended Capitol Hill Day in person which was incredible.
Advocacy has opened up many opportunities to share with other organizations. I have recently become involved with the Autoimmune Association and have been a voice to share my story. With them, I advocate for women managing psoriatic disease. I have even been asked to do speaking engagements and participate in fundraising events. I never knew that my wanting to do what has been innate, helping just one person struggling just like me has moved me into helping the masses.
How you can get involved
If advocacy is something that you are interested in, I say go for it. There are never too many voices out there to push for the things we need to help manage our condition. We all deserve the best quality and access to care. First, educate yourself. Find out ways you can get involved, and also be realistic about your time commitment. In addition to your time commitment, make sure you are taking care of your own health; you can't pour from an empty cup. Get connected with groups and organizations that will give you the tools and support you need.
Advocacy looks different for everyone and your journey may not be frontline at all. Sometimes advocacy is writing a letter or email to lawmakers, it could be making phone calls, or even just asking for others to support your mission. It's all up to you. The best part is that all the efforts you put forth into it actually comes back to benefit you as you are making strides to help improve the needs of the community that you are a part of. It really makes a difference especially when you can take your lived experience of pain to give back and discover your purpose.
Have you considered advocacy? What are some ways you could become involved that work for you?
Does your psoriasis management change with the seasons?