Hi everyone!I know it been a while since my last post but I’ve needed a bit of a break. With family and multiple advocacy commitments it hasn’t left a lot of time for writing. Yet its such a vital piece in helping me to express myself with all that rare disease has thrown my way! Some days it just feels like such a never-ending battle and I’m not going to lie its hard. I wish I could explain what its like to wake up in the morning ready to take on a new day, yet feel as if you’ve had the “crap” kicked out of you already and it’s not even 9am!
CRPS is so much more than just chronic pain! Yet we focus on the pain because that is what we know and hear about most of the time when it comes to this disease. Pain, swelling, and a fire burning that I wouldn’t wish upon anybody are most definitely the primary symptoms affecting me. However there are numerous other symptoms that people affected by CRPS and other chronic illnesses suffer from, and we don’t hear or do enough about them. Things like stress, social withdrawal, irritability, loss of interest, poor concentration, easy tears, lack of energy, sadness, and depression just to name a few. So let’s just say that the pain side(or the ones we hear about most of the time) are “Part A” and the invisible ones(not heard about of enough) are the ones that make up “Part B”.
We talk about one side when really both sides come as a package deal. The articles that I read in relation to my own diagnosis CRPS, always seem to address issues surrounding the pain but don’t seem to go much further than that. I can’t help but think that if we spent more time on educating about both sides, that we would be so much more effective in how we treat these illnesses. The best example I can think of to back this statement up, is the high suicide rate that comes along with CRPS. What are we doing to address it? I get that patients are desperate and being pushed to their limits because I’m one of them! In order to effectively treat and manage however we need to bring both sides of the puzzle together. This is often where the problem lies.
There is no one reason for how or why things breakdown. We as the patient have a voice and need to do our part in speaking up! If we want things to change then it starts with us. That means talking to our physicians, members of government, and others who have an active role in our healthcare system. We can’t just remain silent and hope that everything magically changes itself. To create change then we have to take an active part in trying to make that change happen!
On the other side of things lets look at the healthcare professional or physician who has been highly trained to perform that roll to the best of his abilities. I decided to look up the definition of physician and this is what I found!
A physician, medical practitioner, medical doctor, or simple doctor is a professional who practices medicine, which is concerned with promoting, maintaining, or restoring health through the study, diagnosis, and treatment of disease, injury, and other physical and mental impairments.
The use of this definition isn’t to slight physicians in any way but rather to illustrate the point I’m trying to make. Most of what I have dubbed “Part B” is contained within the last two words “mental impairments” however it isn’t confined to just those two words. Just like with the patient there are opportunities within a physicians profession that could help in bringing together the necessary pieces.

 

Look! I could find all kinds of reasons for why these problems exist but that’s not the point of me writing this. There’s a problem and we need to start working towards fixing it. I’m not the expert when it comes to policy or the healthcare system but I am an expert in my own body and what I have had to deal with over twelve years since diagnosis. I can bring value to any conversation that happens, and can be effective in trying to bring about change!
If I do my part then I don’t think I’m asking for too much when I ask others to do theirs. I get that chronic pain, rare disease, chronic illness, or however you want to label it are tough to diagnose and treat. The fact remains that there needs to be a basic level of care and treatment that one has to receive! When you speak to others within different health communities they will tell you that those basic needs aren’t being met for whatever reason. That’s what needs to change.
So I’ll end with this! There are some of you out there who have crazy powerful stories that need to be heard. Those stories can be a huge part of how we can influence the change that needs to happen around us. Look at your personal journey as a way that you can inspire, motivate, and empower those around you. A simple story can be so powerful! Don’t be that mouse that hides in the corner but the lion that is loud and can be heard for miles around.