Why does it matter?

There are a lot of different voices in the disability and chronic illness online community, and you're probably thinking, why does it matter? Why is everyone going on about their lives?

I think it's one of those things you would not understand, until you do. Going through the healthcare system and being unwell is so difficult, especially because of how common it is for patients to be gaslighted and dismissed. You wake up one day and something is wrong, you go to the doctor and ask for help, they look at you and tell you it's nothing or it's just in your head and you go about your life. You feel sad because you know it's not in your head but the doctor wasn't listening. You seek more opinions and are told the same thing and sometimes fobbed off with random medication. It becomes a cycle until someone does listen, does tests, supports you, trials medicines and treatment options and doesn't just hand it to you to fend for yourself.

Sometimes it takes years on end until someone listens and that's the reality for most of us, regardless of the condition/symptoms we have. This is especially worse for women and people of colour because we are often looked down on and told we're anxious or sad and we need to suck it up. It is even worse when healthcare professionals don't know about the conditions we have and either tell us it's not real or give us incorrect information, which doesn't help. One example is when it comes to Endometriosis and a scary amount of doctors say it's the endometrium, it's just a period, get a hysterectomy or get pregnant, when in fact non of these things are true or would help us!

This is where the voices come in and why they are SO important. I first started an Instagram page to document my journey after being newly diagnosed with some things and still seeking answers for others. It was eye opening to see so many people talking about their health journeys and experiences and it felt comforting to know I wasn't alone. This then turned into me starting this blog, not long after. Over the years, a lot more people have joined and openly talk about their health, which is amazing. Charities have formed, advocates have been doing incredible work, people helping each other and some finding answers because of the stories they see etc.

I have learned more about my conditions through social media than medical professionals, and that says a lot because I know I'm not the only one who feels the same way. Lived experiences are necessary for the advancement of medicine and drugs and to break the taboo and stigma in minority communities such as South Asian communities. By using our voices and sharing our stories, we can help healthcare professionals truly see the condition, beyond a text book, and how it impacts different people in different ways. This then helps pharma companies develop, or improve, drugs to better target conditions and not only use generic examples.

There is more to medicine than what medical school text books show and what you are taught during labs and residency. It is impossible for every healthcare professional to know about every single thing and how every condition impacts every type of person. Some text books are quite outdated and the information is based on the average person many years ago, usually a white male, and these do not account for females, other genders, people of colour and more. Patient stories can help medical professionals expand their knowledge and skills overtime, as medicine is ever changing and it is becoming more important to involve patients in their care and in research.