Guest Voice: Tapping into the power of advocacy and community support

Advocacy has become a passion of mine since I was diagnosed with primary biliary cholangitis (PBC) more than six years ago. It is something I can control when there is so much I cannot.

After my diagnosis, I vowed to help others who are trying to help me. These are the people dedicating their careers and lives to help me live a longer, healthier life than those before me. They’ve helped me find purpose when I so often ask myself, “Why?”

It started with signing consent papers to enter into a research study the day I was diagnosed. Now, once a year, I fill out questionnaires and donate my blood to the research lab. These studies have helped doctors better understand what patients go through every day: dreaded fatigue, constant itching, and many other symptoms. If the opportunity presents itself, I encourage others to volunteer. There are many opportunities out there.

Without the ones before us participating in research studies and clinical trials, the progress with PBC would not be where it is today. Thank you to all who have done so, and to all who will in the future. Our voices matter.

I’ve learned so much from participating in online support groups. This community has shaped my experiences with this disease. It has given me the confidence to ask questions and avoid doubting what I am feeling or going through because others are feeling and experiencing the same things. Community has given me a sense of connection and understanding that I would’ve never received otherwise while living with such a rare disease. It has made me feel seen and heard when so much of what I go through is invisible. And because this community is online, it’s more accessible than trying to find people in my area.

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In the beginning, I mostly asked questions. I looked for guidance and learned as much information as I could. Six years later, I now see myself responding, educating, and advocating for those who have newly joined. These members are asking the same questions and sharing the same concerns and fears that I once had.

Understanding my diagnosis has helped me better advocate for myself. Knowing that I have choices and options when it comes to managing my disease helps me feel more in control of it. Writing down any questions I have before my appointments has helped me stay organized. Not being afraid to reach out to my care team when something comes up has been crucial in easing my worries or fears.

The only unwise question is the one that goes unasked. We patients need to feel like we play an important role in the decisions that are being made as respected and valued members of the team. We don’t need to wait for that next appointment. We can reach out. If you’re a patient, don’t delay your care. Get second opinions. Be your own care coordinator.

Speaking up about my disease has given me the most power in a powerless situation. Sharing with the ones I love has helped them understand what I am going through. Allowing the disease to be a part of me, but not define me, has been liberating. It’s all part of learning to live with the disease.

I am grateful for the opportunities to share my story, knowledge, and experience with people in similar situations. I will continue to do so in any way I can, honoring my grandmother, who also had PBC but didn’t have the same opportunities 20 years ago. Thank you to Liver Disease News and Bionews, the publisher of this website, for providing these opportunities and more for patients. Together we are all stronger.

To submit your own Guest Voice for publication on Liver Disease News, please email your idea to our community editorial manager at [email protected]m with the following included in the subject line: “Guest Voice: Liver Disease News.”

Note: Liver Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.