Not too long ago CreakyJoints asked me to share my story. I am ever so thankful to them for giving me the platform that they do in order to try and raise awareness through my advocacy efforts. Through this community and others I have come to get to know so many amazing advocates. It’s so important to have that patient based community around you for not only support but the knowledge that they bring when you need it! I’ll never forget when I was first diagnosed just how alone and lost I felt.
Now it’s important to realize what I mean when I say this. My wife and family are some of the biggest supporters that I have. However at the start of all of this they couldn’t identify with what I was going through. So when it came to understanding what I was feeling or living with when it came to an autoimmune disease, I didn’t really have anyone to talk to in regards to the questions. So it was as if I was standing on this tiny island all alone on my journey.
I knew that I couldn’t let things stay the way they were. So gradually through writing my blog and other forms of social media I started connecting with a few patients in the rare disease community and other communities such as CreakyJoints.
Coming together with other patients who knew and understood what I was going through brought a real sense of understanding and support that’s hard to explain.
The support that people extend to me comes without all the judgement, and there is always someone there when you need it the most.
When it comes to people living with chronic illness I don’t have to explain myself all the time. For the most part I don’t even have to finish a sentence before the other person is saying “I understand because that happens to me” and goes on to explain what they do in trying to deal with a particular symptom or issue. It’s comforting to know that there are others right there along side you to help you in your journey. Patient advocates have helped me in so many different ways, from things like self care to informing me about research that’s being or has been done.
Through communities such as CreakyJoints and others I started finding physicians, researchers, and members of government who are tied to these patient based communities doing all they can for us. They may not know everything about a specific condition or disease but I have found more often than not, that the willingness to help or refer me to others who can is always there. I ask you this! Why do you think that physicians, researchers, and government officials are tied into patient based communities? So many of them care and understand our situations and want to help us and we really need to acknowledge that.
When you get involved in various communities you start to understand that you aren’t alone in your fight, and that there are people there going through the same things as you. However you need to engage and be willing to put yourself out there and be a little vulnerable. I can honestly say that I’ve made some lifelong friends who share stories similar yet different to mine. They have first hand knowledge of the challenges each of us face every day, and they motivate and inspire me to keep going. I guess the bottom line is that we help each other manage and get through some of the hardest things we’ve ever had to walk through in life.
On those dark days when you just feel like giving up there is always someone who sends me an email, text, or other message to encourage me to keep fighting.
It’s these types of things that mean the world to me because there’s a level of understanding that just goes above and beyond anything you can ever understand!
For me to really explain the true value that community brings would be impossible. There is something so very powerful that happens when a body of people who are battling chronic illness come together in support of one another. We have power and a voice that gets heard! Coming together in community is so important and we all have different reasons for getting involved. What I can say is that it’s made living through this journey so much easier!
