Hello fellow spoonies! I would sugar coat this if there were something for me to sugar coat, but I feel like we might as well just jump right in:
Trying to figure out what’s wrong with you when a new medical problem shows up, sucks. There’s no other way to put it. That’s just a fact of what we get to go through. We go to doctor’s appointment after doctor’s appointment explaining our symptoms that seem to have shown up out of nowhere, and in exchange we get the same dreaded words, “Well I’m not really sure what’s wrong with you, but…”. Which is inevitably followed by a series of tests to prove or disprove why your body is doing whatever crazy thing it’s decided to do now.
However, now I do get to sugar coat it, because the next thing that happens (hopefully, but not always, but when it does it’s incredibly excellent) is diagnosis. YAY! My non-spoonie friends often seem incredibly confused when I excitedly tell them that we figured out the reason that my shoulder and knee just randomly decided that functioning was overrated is because I have rheumatoid arthritis. They don’t understand that while that diagnosis comes with a world of fear, it also comes with a world of hope.
The problem with having a condition that you can’t name to doctor’s is when you go in to their office and sit down on their table, you become a mystery to them, and a lot of the time they seem to not want to try to figure out what’s really behind your symptoms, and they just want to treat your symptoms. For months I was given pain and nausea medication to try and control my body, which helped, a bit, but didn’t solve the fact that my joints were randomly giving up entirely.
But now I can go into a rheumatologist and be a rheumatoid arthritis patient! They know how to treat me, and they’re specially trained in figuring out how to best treat my condition! It’s incredibly exciting! Still scary, but also exciting.
I’ve had chronic health problems since I was born, rheumatoid arthritis simply being my most recent diagnosis experience. But this isn’t the case for every spoonie. A lot of my spoonie friends are just now navigating their first diagnosis, and they often ask me how I handle my diagnoses. My number one response is to watch a video that Hank Green made on his personal channel back in 2012.
For those of you who don’t know Hank has Ulcerative Colitis and he often mentions the impact that it has on his life in the more popular Vlogbrothers videos. However, in this video Hank talks about what it’s like to have your life change so dramatically in such a short amount of time because of a chronic disease, and he talks about something he likes to call "Your New Normal".
The video is a bit long, but I highly recommend you watch it if you haven’t before.
Wishing you all extra spoons!
Mandi
Trying to figure out what’s wrong with you when a new medical problem shows up, sucks. There’s no other way to put it. That’s just a fact of what we get to go through. We go to doctor’s appointment after doctor’s appointment explaining our symptoms that seem to have shown up out of nowhere, and in exchange we get the same dreaded words, “Well I’m not really sure what’s wrong with you, but…”. Which is inevitably followed by a series of tests to prove or disprove why your body is doing whatever crazy thing it’s decided to do now.
However, now I do get to sugar coat it, because the next thing that happens (hopefully, but not always, but when it does it’s incredibly excellent) is diagnosis. YAY! My non-spoonie friends often seem incredibly confused when I excitedly tell them that we figured out the reason that my shoulder and knee just randomly decided that functioning was overrated is because I have rheumatoid arthritis. They don’t understand that while that diagnosis comes with a world of fear, it also comes with a world of hope.
The problem with having a condition that you can’t name to doctor’s is when you go in to their office and sit down on their table, you become a mystery to them, and a lot of the time they seem to not want to try to figure out what’s really behind your symptoms, and they just want to treat your symptoms. For months I was given pain and nausea medication to try and control my body, which helped, a bit, but didn’t solve the fact that my joints were randomly giving up entirely.
But now I can go into a rheumatologist and be a rheumatoid arthritis patient! They know how to treat me, and they’re specially trained in figuring out how to best treat my condition! It’s incredibly exciting! Still scary, but also exciting.
I’ve had chronic health problems since I was born, rheumatoid arthritis simply being my most recent diagnosis experience. But this isn’t the case for every spoonie. A lot of my spoonie friends are just now navigating their first diagnosis, and they often ask me how I handle my diagnoses. My number one response is to watch a video that Hank Green made on his personal channel back in 2012.
For those of you who don’t know Hank has Ulcerative Colitis and he often mentions the impact that it has on his life in the more popular Vlogbrothers videos. However, in this video Hank talks about what it’s like to have your life change so dramatically in such a short amount of time because of a chronic disease, and he talks about something he likes to call "Your New Normal".
The video is a bit long, but I highly recommend you watch it if you haven’t before.
Wishing you all extra spoons!
Mandi