One night while out for a run I thought about the last ten years of living with psoriasis. I’d since then become involved in many activities related to psoriasis blogging and advocacy, including starting The Itch to Beat Psoriasis. But I needed a way to remind myself the focus and purpose of all the activity.
These three words bubbled up and have become how I think about living with psoriasis and patient advocacy.
To educate is to inform, provide with information.
For many years I didn’t have easy access to information about psoriasis. I had psoriasis back in the dark days before the Internet. My dermatologist and a few pamphlets at the doctor’s office served as the primary sources of knowledge. If knowledge is indeed power, I did not possess enough to understand my condition or input on how to best manage it.
I welcome the troves of psoriasis information available online. But it’s hard to know which voices and sites to trust. Through years of learning about psoriasis and searching online for information I have a sense of what is valuable to pass on to others. I also am open to admit what I don’t know (I’m not a healthcare professional) and what I need to research.
To advocate is to speak up, to champion, and stand in the gap for self and others.
I’ve felt disappointed in just about everyone and everything related to my psoriasis care–doctors, nurses, insurance companies, pharmacies, medications, diets, treatments, and those I expected to help me. Through the mistakes, misdiagnoses, and mistrust I slowly learned to speak up for myself.
My hope is that each patient learns to advocate for him or herself. But my dream is that each person then turns around and find another person to advocate for. It might take the form of volunteering time and talent, raising vital funds for research, speaking to a local representative, joining a psoriasis community online, or participating in a local psoriasis related event.
My life is now about advocating for more support, access to care, research, understanding, awareness–whatever will allow the person living with psoriatic conditions to thrive.
To inspire is to breathe life into, to reinvigorate.
Living with a chronic illness like psoriasis for most of my life feels like a long endurance race. Over the journey at times my feet felt light, and the going smoother. But most of the time it’s drudgery–doctor visits, messy and failed treatments, battles with insurance, social stigma, and emotional battles with depression and anxiety.
Inspiration comes from a caring gesture, connecting with a person who faces similar challenges, a hopeful new treatment, or being able to help someone else along their journey. A kind, encouraging word or a listening ear goes a long way to bring that spring back in the step.
Educate. Advocate. Inspire. Three words that guide my daily efforts toward bringing wholeness and well-being to each person living with chronic and psoriatic conditions.