Ankylosing Spondylitis Education
I bet you know, a fair amount about AS don’t you? You should, if you follow my blogs. You possibly don’t, because it’s not important to you. You don’t know someone who has it, or what it even is. That’s understandable, why would you take them time to learn about something that has no direct impact or connection to your life. Many people are like that, it’s okay...we understand if you are one of them. Please, try not to be though. Are you aware that not all Doctors even know what AS is, or understand what it does and how it affects us? You should, if you read my blogs. Do you know that not every person diagnosed with AS really understands what it is exactly, or what it does to them? Is that one a bit of a surprise? You would think if you get diagnosed with something nobody has heard of, you would want to educate yourself. That’s how I am learning so much. It’s kind of my job to though. Not only do I need accurate information to advocate for myself, but I lead a Support Group, so I must be well informed, and have a vast understanding in order to properly help others.
We all know how Facebook can be, everyone has an opinion, and everyone has the answer to everything. We all also probably see a fair amount of those post from people asking for medical advice. Post a picture, “Does my arm look broke?” Well heck, how are we supposed to know that from a picture? “Can anyone tell me what this rash is?” Let’s get real people, we are not Doctors and should not be handing out medical advise, opinions or diagnosis on Facebook! We all know how people are, can be! I’m not saying that’s you, but I’m saying we have all probably seen it a time or too. I am a member of multiple AS groups, and I see multiple, hundreds of post with people offering their input on someone’s photo. Many times giving very inaccurate opinions. Of course any number of them could be correct, but people please, don’t post a picture of your skin wound and ask for advice. You are going to hear everything response from a boil, to cancer if you do! Sure, someone else probably has had the same issue you are having, but that does not mean that’s what it is.
Let’s keep in mind that pictures are deceiving, the last thing we should be doing is telling anyone what they have is xyz. They are already stressed out, they are already dealing with enough unexplained medical issues. They don’t need anyone stressing them out more. Every rash isn’t Lupus, or Cancer. Every response is only going to cause more confusion and possibly stress. Let’s work on changing the way we respond. Instead, say I have had that before, maybe you should get it checked out just Incase it’s the same thing. Or try saying, I’d see the Doctor just to be safe. Maybe even say I think it looks like xyz.. but, get it looked at to find out for sure. Let’s stop saying, Yes....it is blah blah blah and my Doctor had to do blah blah blah and it still won’t go await...good luck. No, I have had the same thing and my Doctor said it is xyz and it’s a sign of cancer, so it’s pretty serious. Get it looked at ASAP. These are not thing things someone needs to hear from our non medical trained brains. I have many, many years of medical experience.
I was an EMT, I have worked with all kinds of people outside of that work, doing personal care assistance. Ranging from slight mental illness, major mental illness. Paraplegic, Diabetic, Autism, Alzheimer’s, Multiple Cancers, simple common cold- severe infection of MRSA. I havee seen hundreds or trauma injuries, and medical conditions. I worked with the sick and elderly, the mentally ill, and now I work in a hospital. I still proceeded very cautiously on how I respond to those questions. I will say it could be something and this is the connection it has to AS, but I also always, always suggest they go see the Doctor, and many times comment about everyone offering multiple diagnosis to the individual. I make sure I never allow my wording to indicate that I am saying it is definitely this specific thing. Everyone else should do the same. Please, be involved in helping them find comfort and relief by just saying what you say a little differently. We are not Doctors after all, and in most cases, no Doctor would make a diagnosis off a picture.
Knowledge Is Power
I think it goes without saying, but I will say it anyway. Knowledge is power, but only if the knowledge comes from the right places. Please, don’t trust WebMD, Wikipedia, or anything similar. These are not positive or accurate sources to gather information from. It may sound stupid, but you would be surprised how many people think it was on Wikipedia so it’s solid information. I do not for any reason use sources that are not highly acclaimed reputable scourges any time I provide any information. I love following the same scourges that the Spondylitis Association of America Follows. They are the leading organization in American raising awareness and Education about Spondyloarthritis diseases. I have had many a person debate medical journal statistics with me, with Wikipedia based information. That concerns me because it’s just pushing inaccurate information to a person dealing with a very complicated and confusing misunderstood disease to begin with.
I once posted a picture not asking for advise, even stated what my Doctor said it was. Livedo Reticularis. I had over 40 people comment to tell me it wasn’t that, it was a burn from prolonged use of a heating pad. No matter how many times I responded back with, I DON’T USE A HEATING PAD. They just kept telling me that’s what was wrong with me. Of course that has nothing to do with Wikipedia, it’s just simply an example of how we need to know and understand what medical knowledge we have, and if it’s accurate information. Not 2 weeks later, someone else posted a very similar picture. Everyone on her comments posted it’s Livedo Riticularis. Now, is that because of my previous post, and know they knew the word, so they were going to use it? If you compared the two photos side by side, you would think they were the exact same issue, simple one looked different than the other because I was in a hospital gown and you could see that in the photo, and they just had there shirt lifted to expose their back. She asked if anyone knew what it was.
I have Know way of knowing what reason she was getting the response she was, verse why I got the one I did. However, let’s just say it’s because they saw my post and just thought it was the same thing. I did state my Doctor said mine was Livedo Reticularis, but does that mean hers was? Does it mean hers couldn’t have possibly even from a heating pad? Does it mean that I was a reliable scourge if the information was only coming from the fact they had read my post previously? No, that’s the simple answer. I can google right now and pull up 10 different things with 10 different names that look nearly identical or exactly identical. So the simple fact is this...We need to know where the scourge of knowledge is coming from. Did you just see it on another post, did you do a google image search, is it because you think it’s the same thing you have, or are you actually medically trained, or use good reputable medical sources for your information? These things matter, and still yet be cautious how you word thing when responding to post of this nature.
Be A Welcoming Participant
I personally am never looking for medical advice or opinions when I make post, let’s keep in mind others may not either. I post to vent with others who might get how I feel. I post, to help raise awareness and give Education to those who don’t know much. I can’t even count how many time I wrote a blog, and someone said....” I didn’t know that” or “ I had heard something different, I’m glad you shared this”. That’s the thing, once it was believed to be a predominately male disease. Now, they know that’s not true. Some Doctors still believ Women can’t get this disease though, and tell their patients that. “ You can’t have AS, it’s a man’s disease!” That is the farthest from the truth. Many argue what classification it should fall under. Auto immune, or not? The answer is, they just don’t know enough yet. In ways it is different from an auto immune disease, in ways it is similar, so it more accurately described as an auto immune mimicking disease. It acts like one, but doesn’t fit the full classification. This is information that I get through research, and very reputable sources. I also make sure I am clear on my opinions verses my knowledge from research.
When you see those posts in the future, regardless of where they are from, let’s all be that welcoming participant in their life. Let’s be clear we have an opinion, but not an actual answer. Let’s not provide such opinions unless they are directly asked for. If not, let’s just show our support by saying, hope you get answers soon, Hope you feel better, please see the Doctor and keep us updated. These are ways you can show you are supportive to their current concern. You offered them an outlet to vent, without stressing them out because you and 50 other people tell the, they have 50 different issues. It’s a scary world, living with something so few understand. We have many symptoms nobody has an answer for, and many people to battle daily that don’t believe us. So just be the welcoming participant. Don’t be the one causing more stress.
I don’t like it when it happens to me, and I can bet I’m not alone in that. It’s just crazy at times living in this world of technology, but let’s all try to make it a little better by being more aware of what we do and say. It takes time to truly research enough to have a small understanding. I spend time every day doing research. There is still so much I don’t know. Heck, nobody has any real understanding of what happens that causes such a connection to the Heart and Lungs, but they know it can cause multiple different Heart and Lung issues. There is not really any information on how it could progress in individuals that go 20 years with no treatment, do they have a greater risk of more progression as they continue to age? How exactly is the HLA- B27 connected, and why do some have it, but others don’t? Why do some with HLA-B27 get AS and some don’t? Is there another connection that could led us to understand that? For example, another gene that overrides HLA-B27 in some preventing the disease, or another gene connected to AS that causes those without HLA-B27 to get AS? We still have a lot to learn. So let’s just be more aware.
Stay strong warrior friends and....don’t forget to click on my Ko-Fi link on the blog page to help raise awareness and support to be a part of.....
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