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 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.
I look forward each day to being inspired, and to motivate others, to live optimistic, hopeful, and empowered lives.
To empower is to free from chains, to resource, and to look up at the possibilities.
Too many times I found my face in my hands, head down, feeling helpless and hopeless. I don’t like to recall those moments when nothing worked and I felt useless. Who hasn’t hit the out-of-options wall in life with an out of control situation?
As the saying goes, knowledge is power. Lots of information exists on the Internet on psoriasis. Much of it is foundational medical information on the condition. Learning about different types of psoriasis and treatments opens up a world of options. Patients engaging online provide another valuable resource pool of personal experience and stories living with psoriasis or other conditions.
My goal started humbly enough–to empower one person to take one proactive step in self psoriasis care, to feel they can make a positive change and difference through sharing my psoriasis journey. Along the way so many fellow patients empowered me to do the same.
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 thrive.
Inspire. Empower. Advocate. Three words that guide my daily efforts toward bringing wholeness and well-being to each person living with psoriatic conditions.