Hi everyone! I know that its been a while since my last post but a not so little thing called COVID has been beating everyone down including me! So the plans that I had to get myself back to writing had to be put on hold once again. Like everyone else I’m tired of living within my four walls and can’t wait until all of this ends. For now though I stay positive and keep pushing forward trying to navigate all of this. I’m determined to not allow COVID to rob away a platform that’s become very important to me in the advocacy work that I do.

So that means digging deep and finding a way to get a post put together today. I wanted to take on a topic topic that often causes me to simmer inside. For some reason a person living with chronic pain is suppose to look a certain way. When I tell a person that I have a rare disease that causes constant chronic pain, you’d be amazed at how often that person judges me. Believe me it happens! For so many of us living with chronic pain from across different disease spaces this is quite often a stigma that we face. If we don’t look a certain way or show the physical signs then our pain isn’t validated. I can’t tell you how many times I’ve had to explain myself to others about the pain I live with.

What is a person who suffers from chronic pain suppose to look like? I ask myself this question over and over! There seems to be this preconceived notion that a person living with chronic pain has to look a certain way. Not to mention that if you don’t look that way, then quite often you end up arguing with people to get them to believe you! It gets tiring having to explain yourself over and over again, especially when your dealing with an invisible illness that you didn’t ask for in the first place. The most obvious example one can give is in visiting a doctors office when your in need of help for your pain. Unless the reasons are clear and obvious as to what is causing the pain, then more often then not it leads to that person being judged and dismissed.

If you only knew how often I’ve been told about friends, family, or health care professionals that “they don’t look sick” and that they’ve been left to navigate their chronic pain on their own. All because they don’t necessarily present physical symptoms. Again, just what is that look suppose to be? Last I checked there wasn’t one! This is a term I’m rather sick of hearing yet little will change until people are better educated. Although the doctors office might seem to be the most obvious place we think of this happening it isn’t the only place. In fact, we also see this happening in the workplace and within peoples personal relationships. This is why I say I can’t stand the term because it has a tendency to follow you everywhere you go.

Almost everything I’m dealing with when it comes to my CRPS doesn’t exist on the surface. A person can’t see my nerve pain or the mental anguish that it causes a person diagnosed with the disease. This is but one of the many different types of rare diseases or illnesses that people live with that have symptoms that aren’t necessarily visible to the naked eye. Even if you identify illnesses like mine as “invisible illnesses” which they are, the problem is that it still won’t stop people from making the judgements that they do. Unless we do more to help people learn more about this then this will continue long into the future.

As human beings we form our beliefs and opinions based on the repetition of certain stimuli. That being the case this means that there are a number of factors that influence how and why we judge a person by their appearance. One of the biggest contributors to this is the media! We are conditioned through constant media messages of all types, that people are suppose look a certain way. This leads to all the different stereotypes that we see in our society today. All I’m trying to get to is how we get to that stigma of how a person living with chronic pain or chronic illness is suppose to look. So instead of getting to know what’s going on within a person we make a judgement based on the things we see or hear. This is wrong! Every person deserves the same respect which means we should be taking the time to find out what their story is. The bigger problem is how do we fix all of this?

In my opinion I don’t think there’s just one solution because there are so many factors influencing this. The media being just one of those factors. Not for a minute do I doubt that we can’t make an impact and influence change. What this means however is that somehow we need to change the repetition of the stimuli that people are receiving. So what does this really mean? If we take the time to talk to a person and find out the things that are really going with them then our beliefs and opinion of them changes. If the reporting in the media comes across differently, then we should hopefully see a change in how some of those reports are shaping peoples opinions.

The same goes for those in the medical community. My hope is that the more we educate and raise awareness then the more we should start seeing a shift in these opinions towards those of us living with invisible illness. There are always going to be those who will form their opinions, and unfortunately there isn’t much to be done about it. That means having grace and patience every time a person judges me. Instead of getting upset or frustrated I need to look at it as an opportunity to educate and better inform a person about my disease. I might get tired of explaining myself but I need to be understanding of the fact, that not everyone knows the story of what’s going on with my health. In no way am I saying that its right that we have to deal with this stigma, all I am saying is that we need to try and understand the reasons behind it.

I know this isn’t easy because we often want to lash out in frustration and call people out on how we’re being treated. I’ll be the first to admit that I need to be more understanding at times like these. I get angry when people judge me in this way and forget that maybe there’s a reason behind it. It presents me with the opportunity to look at my own actions and ask myself how I might best respond. I say this because it can be so easy to act before we think. So I’d be lying if I said that I’ve never said something basing it on a judgment before! Shame on me because I shouldn’t be doing it. When I really think about when I’ve acted in this way, I can easily trace it back to some of those reasons that I was talking about before.

When you really think about the fix for this, in theory it seems like it really shouldn’t be all that difficult. It isn’t as simple as a snap of the fingers though! Changing stigma like these is a massive undertaking that doesn’t just happen overnight. Things don’t change unless we start having conversations about the different challenges we face. Meaning that sometimes we need to cast aside the frustration of being stereotyped, and focus on what we do have that can influence change. What is that you might ask? YOUR STORY! Each of us has a very unique and powerful story to tell. So don’t be afraid to share it!