In this article they talk about how this person finally figured out what was wrong with her not from multiple doctors and tests eventually, but from a friend. The above is a video of a man who figured out what he had because he saw my friend's story on the news. Although in my case it didn't happen that way, I did have family and friends do lots of research for me over the years investigating and ears perking up if they overhead someone else with similar symptoms finally get an answer. Thankfully those people never suggested anxiety or that it was in my head or I would've probably wanted to punch them in the face (so know that is not what I'm recommending).
So today I really want to talk about the importance of sharing. My rare illnesses actually shouldn't be that rare, they just unfortunately go undiagnosed and when they finally do, like my story, it's years or decades before finally figuring out what is wrong and by that time so much has damage has been done.
What motivated me to write this is I was reading on one of my support group Facebook pages and saw that a women had 8, yes 8, CT's done with doctors telling her she did not have MALS when she actually did. I wanted to bring this subject up, but in actuality I have no words. Thankfully I only had 2, but when I describe these people with rare illnesses like EDS or MALS as warriors, I mean it. They have to fight for answers, for belief, for pain relief. Unfortunately some lose the fight and lose their lives.
It just makes me sad that because something might be considered "rare" even if all the symptoms add up and no other diagnoses fit, a doctor or nurse is too wary to say yes, you could be that rare percentage. My rheumatologist finally wasn't too wary to say yes and I will be grateful to her for the rest of my life. She really had no idea about EDS or come across a patient before with it, but she connected those dots and she did the Beighton Score Test and because she wasn't an expert, she wanted to make sure I got in an expert's hands before ruling out or confirming.
Something mentioned between us chronic illnessers is that say you are having symptoms and go in. A doctor will run tests, but they all come back negative. What is it they do? They say everything looks good and you must be healthy instead of ok, we need to start thinking out of the box and find out what could be causing these symptoms then. I just see story after story of ER situations especially where someone knows their body, heck their family knows something is wrong and they finally get up the nerve to go in, but they are made to start doubting because they didn't find anything immediately. It's difficult because I can of course see the other side that the ER is for emergencies and they have to be quick and don't have time to figure it out and just release you. But that person comes back later because they know something is not right and they continue doing worse. Eventually they either fight with the doctor and the doctor believes them and low and behold they had a blood clot or organ failure. Or unfortunately they just give up and go home and pass away.
Back to the whole point of this post. Awareness. Sharing. What if that ER nurse or ER doctor had a friend who had EDS and was vocal about symptoms and comorbities? What if they knew that they were more likely to have blood clot and organ failure so they didn't run the normal tests, but over and beyond?
Shortly after I got my EDS diagnosis, a friend who's a labor and delivery nurse told me that she actually had a patient come in with EDS. This patient was on very high doses of pain killers and her fellow nurse was making comments about how she must be faking and this was the problem with addiction. You know what? My friend understood this patient and had empathy because she knew my pain because I had shared with my church my struggles and what was going on. To know that a fellow EDSer was in the hospital I'm sure terrified and in pain, and she had a nurse who didn't question her pain, believed her, and wanted to help her makes me so beyond proud and worth putting myself out there on the internet and social media. If my friend is reading this, thank you.
I also wanted to add I just found out that there is a Continuing Nursing Education Program for Ehlers-Danlos and if you'd like more information it, click here. Also a course for physicians: https://ehlers-danlos-cme.org/course-overview/. I'll leave you with the phrase that I've learned that I hope will one day save someone's life:
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