I am very open about my disease and the painful journey I have had to go through to get my health back. It is because of what I went through that I am now so passionate about educating anyone who will listen, and it is because of my journey that I am so passionate about social media.
However I also find it so frustrating working in an industry that does not listen to it’s core customers – indeed often does not consider patients as a customer. I work in an industry that emblazons its websites with words around patient centricity but in reality does very little for its patients. I work in an industry that has huge teams dedicated to marketing and communicating to doctors but only has small teams (sometimes a single person) dedicated to patient interactions and communications. How can we as an industry talk about caring for patients when we do not even resource our patient advocacy teams appropriately or hire patients to be part of those teams? I have already written about the fact that to work in patient advocacy for a pharma company you need to have experience in working with governmental agencies but not in social media and not as a patient. Surely patient advocacy teams should include actual patients?!
Whenever I have the opportunity to share my story with pharma teams they are often blown away by my passion and by what I say but sadly I feel like nothing changes. I feel as an autoimmune patient our voices are just not being heard by the very industry that often saves our lives. I am frustrated as an autoimmune patient that our voices are not being heard because many of us do not have a terminal disease like cancer or a visible disability. We are not dying but we are suffering.
Many of us are surviving but not “living” – we battle on in silence, we suffer in silence, and we often carry on being stigamtised because what we have is not understood or visibly obvious. Just because you can’t see our pain does not mean it is not there. Just because we do not have big patient associations behind us does not mean we do not exist. Just because we have a chronic disease that will not kill us does not mean we are okay. We battle on but we want to be heard and there are more and more of us out there.
I am passionate about raising awareness for autoimmune diseases because I am an autoimmune patient. I am passionate because time and time again I meet another patient, or friends and family of an autoimmune patient, and I am struck by the same stories we share and by the fact that often we seem to be ignored. Just because we are not dying (or at least not quickly) or because physically we look healthy does not mean we are not suffering. Just because our conditions are not always fatal does not mean we should not be heard. It is time for our voice to be heard.
It is time for us to stand up and tell the world that it is not okay – we are suffering and we need support. We need support to fund research to find answers. We need support to help make people understand that not all disabilities are visible. We need support because frankly when we have a bad day it is the equivalent of your worst nightmare but we persevere – and often in silence. We are so much stronger than you could imagine but we are also in desperate need of your support.
All we ask is that you hear our voice and support us in our daily struggle – because together we can fight these diseases and together we are strong.