When I was losing my home after my cancer diagnosis because I couldn’t pay my bills, I was too ashamed to ask for help. When we were losing my father to bladder cancer after his treatment stopped working, I didn’t know there were other treatment options or how to find them. I thought, because I was a patient insight researcher, that I was well equipped to navigate cancer, but I discovered that I didn’t know how to use my voice. It has taken me years of healing to be the advocate I am today. While everyone experiences cancer in a different way, having resources available to you for support, education – and eventually, empowerment – are so important. Sometimes we get so caught up in getting through cancer that we forget about living.
You don’t know what you don’t know
You can’t expect to be an expert in something you’ve never experienced. It takes work to even identify what you need. My advice? Ask questions. Talk to those who have gone through it. Embrace vulnerability. Look for a level of support you feel comfortable with, whether one-on-one, in groups, in person or online, and seek out a community right for you. Rely on your support system and engage them in your care. Don’t go it alone.
To identify what you may need, pay attention to how you are feeling to start. Are you tired? You may need someone to do housework so you can rest. Are you scared? You may want to talk to a friend. Are you angry? You may need to harness that energy to advocate on behalf of patients like you. Zeroing in on what you need is the first step in finding your voice. Then, you must verbalize those needs to start to use it.
Seeking out specialized information is also paramount. Look to your clinical care team for facts about your cancer and fill in the gaps with other educational resources like virtual cancer events, patient advocacy organizations, articles and bloggers you trust.
Your experience matters
While doctors may know about your cancer, you are the expert of your own experience. By sharing your story, you are providing a valuable resource to others in a similar situation. Your experience during and after treatment is also extremely valuable in the formation of new treatments. Consider lending your voice to patient experience research. Not only will you have the opportunity to be heard, but you will be helping to improve quality of life and health outcomes for others.