How Do You Navigate Rare Disease?

Today’s been one of those days that finds me moving just a little bit slower, and feeling just a bit more pain than normal. Par for the course in a life that I’ve come to know and accept. Every day is a new adventure and like I tell so many of you, never expect your day to turn out the way you had planned it. I’m not trying to be negative in what I’m saying but I’m just being realistic as a person who’s living with CRPS! Today’s adventure is to sit down and try and maintain focus on putting together this post. With any luck I get this done!

When I sat down to write this post I had a completely different post in mind. At the same time I was thinking about another message that’s been nibbling at the back of my brain. It has to do with the whole area of how we handle having a rare disease. Yes it frustrates me to death that so many of us get lost in the shuffle and are often left to navigate our own way through it. This is something I find comes up over and over again with patients fighting rare disease, and won’t change unless we are helping in trying to facilitate change. Not only within my own disease but within other rare diseases as well. Desperation is pushing people to their extreme limits and it just comes out naturally in aggression and frustration. So often though that anger and frustration has a negative affect on how we handle living with our illness.

Although I completely understand why those feelings are coming out and have had to deal with them myself, we need to find ways to focus that anger in a positive constructive way. At the beginning of my diagnosis I was angry and wanted answers. So I expected that “all” physicians should be know what CRPS was, and that they should have been able to give me the answers I needed. They are doctors after all! At the time I had no compassion for physicians and that they don’t always have the answers. Clearly as times gone by I’ve discovered that there’s a need to educate and raise awareness! I discovered within myself that the anger that I held inside myself wasn’t going to get me anywhere, and that I needed to take a good hard look at how I was seeing and dealing with all of this. Instead of putting this giant blanket over “all physicians” and their understanding of my rare disease I needed to see it in a completely different way.

There was so much frustration and anger at the beginning that I couldn’t see what was right in front of me. The need to educate and work “with” the medical community and different government levels. It was very clear when I looked outside myself that I needed to change how I was approaching all of this. Why not put the time and energy into working with the physicians, members of government, and the research groups! There are great physicians and members of parliament or government who are willing to work with us and do know about the things we face. It’s a matter of finding those people and then teaming up with them to educate and create awareness. Am I saying not to get frustrated with that physician or member of government who doesn’t give you the time of day? Absolutely not! We are going to experience those emotions time and time again. The question is what are you doing to harness those emotions and then turn them into something positive?

So how do we flip all that anger and frustration around and create something good from it? Maybe it’s as simple as sharing your story. Our stories are a powerful tool for teaching and educating those around us what is going on with us both physically and emotionally not to mention creating awareness. In the last few years I’ve started sharing my story with medical students, nurses, and members of government. From that other members of the medical community and government have reached out to ask me to share my story. I’m saying all of this in order to get you to see that by simply sharing my story in various ways to different groups I’m making some kind of a difference. It’s a very simple yet powerful way to have a positive affect on bringing about change.

Another way would be to take part in things such as clinical trials and different research studies that will help those studying rare disease to find answers that might eventually lead to cures. There are all kinds of organizations and people that can aid us with research studies. At the same time there are certain rare diseases where there are opportunities for research because not enough is being done. Maybe there’s an opportunity for you to play a part in raising awareness for research. Whether it be getting involved somehow with the research itself, or maybe you get involved in a fundraising campaign of some type. There are so many ways that we can channel all of those frustrations that we face in living with rare disease. However it is a choice that each of us has to make! The question is what are you choosing to do?

For myself the choice is easy because I’m looking at the bigger picture of all this. This isn’t just about myself! I’m choosing to get involved in all the ways that I do because “all” of us need answers. I care about each and every one of you who are sick and only want to see you get better. The way we do that is by coming together as a patient body fighting together!