Seven years ago this February I got sick.
Seven years of doctors visits.
Of being told:
‘It’s all in her head.’
‘She’s pulling the wool over your eyes, she just doesn’t want to go to school.’
‘Her tests are clear, how is her relationship with her father?’
‘She’s anorexic.’
‘There’s nothing. Go home.’
‘Go home.’
‘Can’t help.’
‘Nothing there.’
Seven years.
Seven years of nausea.
Of joint pain.
Of dislocations.
Of exhaustion and muscle fatigue.
Of trying to tell doctors that other family members of mine have the same symptoms.
Of being given a diagnosis of Chronic Fatigue Syndrome in order to call it something, just to make us go away.
Seven fucking years.
Lots of doctors. Lots of tests.
And nothing.
Today though, today I walked into a doctors office and walked out with a diagnosis.
I was told, ‘It’s a straight forward case. It’s a clear diagnosis. I am 100% certain that this is what you have.’
I was diagnosed with Ehlers Danlos Syndrome today.
And while it’s not a fantastic syndrome to have (dislocations, joint pain, no cure, etc etc), ANYTHING is better than being called a liar. Anything is better than being told you are faking it and to go away and come back when you are truly sick.
Anything.
I’m so glad you have some answers. It can be so frustrating to not understand why you feel bad and to not have anyone believe you.
Oh man…. that sucks about the crap you had to get from Drs in the past… but it’s good that you finally know what’s going on!! Did you just walk into this specific Drs and have him say “yes, I know what that is” on the spot kind of thing… or was it a few weeks in the diagnosing…?
I know, baby. SWMBO has Ehlers, as do a couple of her sisters. One has it worse than she does – the other is not quite so bad. And THAT is the reason I massage her back, and feet and hands, every night. It is all I can do. But it does help for a while – ease the pain. It is all I can do. I wish I could tell you that it goes away. I wish I could tell you it doesn’t get worse over time. I wish I could make it better.
I wish I could do more than just give you a *HUG*.
lceels last blog post..Wordless Wednesday – A Puzzlement
i am completely relieved on your behalf, girl, and so happy you have finally been vindicated. now if only we could make it go away…
cats last blog post..home
Well, Yay, sort of… I’m glad you’ve been vindicated – that’s got to be a relief. I’m sorry it can’t be fixed though. 🙁
I guess it is small comfort.Anything is better than being treated by eye rolling and Drs who don’t know it all.
Drs have a lot to answer for …
One is on your side now.
I hope you find a good pain/symptom management system.
Despite it all you seem to be on top of most things Veronica.
Ps Super Sarah’s bub is here.
Trishs last blog post..Wordless Wednesday
Thank goodness you’ve finally got a diagnosis. I’m sorry it’s a bit of a crap one though.
I don’t know much about it but I hope there are ways you can manage it so that it becomes a bit easier to deal with everything else you have to deal with to.
Barbaras last blog post..111/365 – The Cheek Of It
Wow, must feel great to put those symptoms with a name.
Sorry about your pain and nausea hun and about those idiot doctors who jerked you around for so long.
talinas last blog post..Preparing for my “homebirth” via my dreams.
I think it’s sad that we have to have an official diagnosis in order not to be called a liar.
I’ve been told “It’s all in my head” before. Whatever it is…it’s not IN my head because the symptoms are out and causing me discomfort. It might COME from my head, but who cares. I still feel like crap.
I’m glad the diagnosis has brought you some peace of mind!!
Dinas last blog post..Barry Humphries (Thanks, Fe)
Well… congratulations on finding out?
I’m sorry?
I don’t know what to say, except that I hope the knowing is helpful and that it raises awareness. I knew things were very bad toward the end of the pregnancy, but didn’t know if they were better or not.
Or if this comes and goes kind of thing. Hope you are ok and your doctor is able to give the best treatment… he sounds like a good ‘un finally. :]
Mrs. Cs last blog post..The Locked Closet.
I so relate to that. I’ve had heart spasms for at least 20 years. No one has ever been able to diagnose them do anything about them, or even act like they believe me. It’s like someone can’t possibly suffer something real if a doctor is unable to name it on the spot.
I’m glad that you’ve got some resolution.
CKs last blog post..sexy
congratulations on your diagnosis! you must feel so validated and relieved to know what it going on. do you have a treament plan in place yet?
Jennis last blog post..Hilarity
I’d still punch him.
Well done.
Xbox4NappyRashs last blog post..Ding ding
It took me from 4 to 16 to get the ed-3 diagnosis. Even when the doctor said there was no real treatment I have never been so happy to a name.
So glad you finally got answers. I’m just sorry it took so freakin long. 🙁
and that you have it to begin with ofc…
((hugs))
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Oh sweetheart.. I love you. I am pleased that you posted the diagnosis. You articulated very well the frustrations that we have all felt. 7 Fucking years. I was laying in bed last night composing “I told you so” letters in my head to all those asshat specialists that treated us so shabbily. I might actually print out a form letter and we can send them off. Is NerNer a medically approved term? (((hugs)))
frogpondsrocks last blog post..Torso for sale. $50. Enquire within.
I’m glad you finally got an answer. I’m glad you are FINALLY validated. I SO understand that. I’m so sorry that you have this crippling disease. That sucks and you don’t deserve that at all.
Lazy, on their high horses, can’t be bothered to listen properly.
Doctors.
tiffs last blog post..The circus.
big hugs..
glad you finally got ya answers..
(((hugs)))
About time.
Jaynes last blog post..Old King Cole was a trivial merry old soul and a history merry old soul was he, he called for his pipe, he called for his bowl and he called for April 23…
sometimes we just need a label for stuff to make things easier to explain to others without them thinking we are some kind of three headed martian.
Glad you have your name.
Mistress Bs last blog post..Bits and Bobs
Oh, how I know that feeling. It’s a kind of closure…even if it sucks.
😉
and
XXOO
Rees last blog post..And now, back to your regularly scheduled Hotfessional
I’m glad you have finally some answers. It’s important to stand up for yourself with doctors and if you need to seek out someone else who will help you, then so be it. Take care.
Joyce-Annes last blog post..Holding on to hope
Wow. SO glad you finally have a diagnosis. Doctors really suck.
Alis last blog post..Look, it’s pretty, no?
Yup…thats what I suggested to you before because my ex had it and your symptoms are the same. He was always accused of being lazy and it really upset him so much. On the upside it is a condition that you can manage with a bit of work. Still, I feel for you having it with 2 children…hang in there.
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Congratulations! Shall I make a special badge for you to wear on all future Dr visits? Seriously I’m so glad you finally have a diagnosis even though it isn’t going to make your health any better. Oh and yes, you should write enclosing a copy of the diagnosis to every one of those arseholes who fobbed you off. Not only for your own satisfaction but in the hopes that you might spare someone else the same treatment.
Big hugs,
Seven years. That’s about six years and eleven months too long, in my opinion. Trouble is, if you don’t fit any of the easily diagnosed patterns, doctors are unwilling to dig deeper into testing and research to find the answers. There are many reasons for this, one is time,(not enough doctors, too many patients), another is money. If your parents had been filthy rich and able to take you around to various specialists, a diagnosis would have been found much earlier. As it is, those of us who go through the clinics where at least a dozen people are queueing per doctor, well we suffer, mostly in silence. I’m glad that now you finally know, anyway. Even if there isn’t yet a cure.
That vindication is perhaps more important than anything. It won’t actually make anything better, but it will get you through the dark times. It’s impossible to win a war when you don’t know who your enemy is, now you know you can turn it from your enemy to your friend.
lots of love, BG x
I have a friend who has Ehlers, and knowing what she has gone through, I feel so bad for you that you suffered so long with no real explanation as to why. Knowledge is power, though, so you’re on your way to managing your condition and feeling better.
Andis last blog post..Puttin’ the Ass in Class
wow. it must be such a relief. i’m glad you finally found a dr that could diagnose it.
coffeejitters (Judy Haley)s last blog post..Dear Gem – Month 1
You know, this is the third time recently I’ve heard of a doctor telling someone that it’s all in their head or they’re making it up.
Fucking ridiculous.
I hope that having a diagnosis helps and that they are, in some way or another, able to help make sure the next seven years are a little better than these last ones were.
I know what you mean, and keep hanging in there.
Lizs last blog post..Photoessay of the 805 Veterans disabled parking problem
Yes. Feeling like screaming “I TOLD YOU SO!!!!” doesn’t make it better. But it’s validation.
Hyphen Mamas last blog post..Where does Sanity go when it’s been lost?
This sounds so bad but I AM SO HAPPY FOR YOU,, I know what it is like to hear those things,,,,, Hang in there and I hope they can now find something to help a bit.
Just a moms last blog post..SO FRIDAY,,,,,
Oh huge hugs to you
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I’m so glad for you that you don’t have to feel so frustrated and alone with your pain anymore…I know that feeling of no one listening to you, no one believing that you’re ill, and I think it’s so sad that doctors won’t pay attention to you, and BELIEVE you, just because they’re not smart enough to find a diagnosis for you. Hooray for finding a doctor who got you some REAL answers!
Hugs.
I understand. My daughter has gone through this too, before they diagnosed Fybromialgia. They kept saying it was nothing too. Now that she knows what it is, it makes her feel slightly better too.
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I’m sorry to hear about your diagnosis, while being glad for you that you HAVE a diagnosis. All the best with managing it from here.
Kathys last blog post..Achievement
I am pleased you finally have a diagnosis… I follow bendy girls blog and I also have ehlers danlos as does my daughter. Vindicated at last. I am not pleased that you have EDS just feel it may help you in interaction with the medical professionals. They will still need educating on the condition and there will be days when you feel like screaming at the lack of awareness of this debilitating illness. However, ulitmately us EDSER’s are strong in spirit and this keeps us going when the pain is relentless. With very best wishes from a virtual friend over the www who understands your journey more than you will ever know. Take care
Knowing is more than half the battle. I suffered for 7 years too with much of the same stuff, only it’s my heart that was all wonky, and I was told panic attacks, hypochondria, nothing wrong, maybe your hormones, you’re an enigma, all kinds of shit. It took a switch of insurance companies and I was finally able to get my cardiologist to plug me in to a 30 day monitor. We caught the damned arrhythmia on day 17. I called the monitor in (over the phone) and then the nurse called me back, and the first thing she said was “He said to be sure to tell you you’re not crazy. It’s something.” Fortunately a relatively benign something, though it’s bothering me a lot lately. I wish you the best with this challenge, and hope that you and your doctors can find a treatment protocol that gives you some relief.
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