Controversy of the Cup!

This picture has been doing the rounds on Facebook today, and in my support networks and many people on fb who have shared it, there are lots of people who are very frustrated and angry with it on all kinds of levels… (tho some are sharing it because they like it, and I get that too, …) so I thought that I would explain the controversy for those who don’t understand it …. so here is my attempt at explaining:

Screen Shot 2015-12-01 at 7.35.50 PM

I hear what the person who made it is trying to say, and it must be frustrating to be a doctor and and have patients coming in having diagnosed themselves with all manner of ailments that they don’t have. But the reality is that those people were like that before Google was even invented, and if Google was removed from the world right now they will continue to be like that. You know, the: “My friend’s aunt’s cousin’s child has …. *insert strange disease of your choice here* … and I think I have the same thing!”… yup those people … always been around!

The reality is that the internet is full of rubbish, but it is also full of a ton of very helpful information too! I have been suffering tremendously and have literally, actually, come waaaaay too close to losing my life on a number of occasions, …. and I am only alive today because of the research that I have done all by myself, and gone to enormous lengths to prove, and be heard, and make happen. It helps that I have a Psychology/Biochemistry degree and a personality that is somewhat brave (sometimes) AND that I speak English well and have had doctors who speak it well too!! (In some of my battles I have often wondered if I would not have won had I been a struggling refugee with little to no English, how then would I have survived!!???) …. but that by no means, leads me to believe that I know everything about Biochemistry! I am passionate about Biochemistry (the chemistry of life) and Psychology, and I have used both fields to make a difference in my own and other people’s lives.

But had I had a correct diagnosis years ago, my life today would be completely different (and better!!)! Most of the damage done to my body has been because my diagnosis was not made and I was treated wrongly. And it isn’t as though the symptoms only started recently either, this has been a decades long battle. But three months or so ago I was so fed up I google stuff myself and worked out exactly what I have! And  just yesterday I won after 18 months of fighting to get someone to listen to me, and because I have an AMAZING GP I was able to get the correct testing (standing up not lying down) and the correct diagnosis … which by the way, I did not find on Google, however, the PRINCIPLE behind this mug is that there are people who diagnose themselves incorrectly and do themselves all kinds of damage (which is true!)… however, the PRINCIPLE behind it also very strongly says that only those with degrees have the ONLY medical answers.

I can’t let you see the forums that I belong to because they are private and not mine to share, but those of you from there who will read this can attest to the fact that EVERY SINGLE day someone with a rare disease complains on the support networks, that they have just been told by a Medical Doctor, that they don’t know what they are talking about and should just shut up and listen because ONLY the doctor can be right and not us. I have personally been told this on untold occasions and it is not just about pain which is so hard to measure, it more often than not is about major issues that require completely different treatment … quantifiable, measurable stuff! Things that can be tested on genetic tests, things that can be seen on MRIs and CT scans … and in fact more and more I am hearing stories where people get the correct diagnosis that they need and at long last (sometimes after decades like myself) get the care that they need (with a medic alert bracelet that says that they have a connective tissue disorder), only to land up in ER one day , and to be told by the ER doctor on duty that the diagnosis is rubbish, and they over ride it… often causing harm never mind not fixing the problem!

Doctors PLEEEEEEASE don’t confuse your Medical degree with a belief that you are the only one correct!!!

And for the record, I know what I have for one reason and one reason only: I GOOGLED it! … then had to go about proving it, which took all of 5 minutes with the correct specialist! (who I did not tell I had googled EDS, I just made the appointment, turned up and she took one look at me never mind my file and diagnosed me) …. AND on top of that she told me that nothing can be done and sent me home! No support network, no experimenting, no nothing!… so even she doesn’t know everything because I went home and googled EDS more intensely and found incredible support networks and web sites devoted to helping people just like me!!!

So this mug quite frankly is an insult to people like me ….

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3 thoughts on “Controversy of the Cup!

  1. I feel the same way and have had some of the same issues with doctors. There are good ones out there who help – but there are some who go to the easiest diagnosis (i.e. some sort of unknown virus, depression, anxiety, etc.) and you have to fight for yourself to get the treatment you need. And honestly even after my correct diagnosis, I still turn to the internet to find more out about my condition than the doctor can tell me in the allotted 10 minute time frame. Thanks for sharing your story!

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    1. Thanks Ashley, and you hit the nail on the head! The good ones are those who LISTEN but then work with that … they are not trained to know everything, they are trained to find answers and should know where to look! I have had a string of brilliant GPs in my time who have taken incredible care of me. None of them came up with the diagnosis, but there have been a number of occasions where they have sent me for this or that test because they trust me that I know my body and follow their gut and support me. Without that I wouldn’t be alive right now, …. I feel sad that no one worked out what is now so obvious but I don’t blame them … we have moved so much with my husband’s work that no one has taken care of me for long enough to see a realistic history … and no one is perfect, but now I’m trying to create awareness out there of not just EDS but also all rare and/or chronic illness 🙂

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