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What About Me Syndrome?


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#1 Lovemyhusband

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Posted 02 September 2008 - 02:19 PM

OK this is more of a rant and rave session for me, so please be patient with me.

My Mother in law and Father in law are really big on discounting the dx of Narcolepsy. They want us (Andre and I) to make sure we know all about diabetes and Anklyosis spondalitis (sp?) so we know what to do if the need arises. Every time we sit down to a meal we have to hear about blood sugar levels and how painful it is to sit upright since they have so many medical problems. Normally I don't have a problem with learning about a new medical issue since I always like to be prepared. But they are fully aware that my mom has had diabetes for as long as I can remember. So nothing new to learn there. Anklyosis is something I had to research when my son was younger since he had so much trouble walking or even just sitting in one place without pain.

The moment Andre falls asleep when we are at their home they make comments on how he can never just come over and visit. They want to know why he can't just sit and have conversation or watch T.V. without dozing off. ARE YOU KIDDING ME. I have had a bunch of medical crap shoved down my throat just to keep the peace with them. The minute you try to explain that Andre is not Just tired they lose interest and either walk away or interrupt you with something they want to say. I have had it up to my ears.

Recently Andre's sister in law became very ill. Andre and I have not spoken with that part of the family for a few years now and have no intention of doing so in the near future. Now I have my MIL calling to give me updates on her condition. Now don't get me wrong I don't wish harm on anyone but I simply don't care. They have burned bridges that can never be rebuilt and as far as I am concerned it is their loss.

Why is it that I am supposed to care about everyone else when they don't even try to understand what is going on with Andre. I have now officially name his whole family the "what about me syndrome". I hope I never catch that one because there obviously is no cure.

Thanks for letting me vent. I feel better already.

#2 sleepylama

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Posted 02 September 2008 - 10:49 PM

I started chuckling reading your post. I have Narcolepsy, Ankylosing Spondylitis (AS for short), and Hypoglycemia (although not full diabetes thankfully for now!)...just to name a few things. No really, I do...they are what I consider the 'top 3' and are the ones on my medical ID bracelet...the rest I leave to my documentation.

I completely understand what you are saying about the 'what about me' syndrome. I am not one to discuss my issues much outside of my hubby and a few other folks, but even w/them, I don't discuss everything because frankly, I am just as tired of being sick and tired as anyone w/disabilities...as we all understand here. But if someone asks or makes inaccurate or hurtful statements, I will speak up to try to educate...particularly when my kids are around because one of them already has AS and I am trying to ensure he is emotionally strong and intelligent about his condition. Inevitably if I even begin to discuss something there is always 'poor such and such' who has xyz illness, etc. That is not to say I am not sympathetic and empathetic, I completely understand the feeling of being ill and being misunderstood, but people who give the 'poor me' speech all the time seem not to want to be understood but to be grasping for attention. Usually I am able to be patient and to understand as humans we all have varying degrees of emotional needs, etc, but the frustration gets the best of me more than I would like.

In those cases, it is nice to have this board and others like it...whether you are the PWN or the committed spouse (partner, etc), we are all in this together and we all have each other...those who do understand!

Hang in there Clara...you are an incredible spouse!

PS--I have had AS for far longer, at least diagnostically, than Narcolepsy. AS can be incredibly painful and is robbing me of mobility and a functional immune system, thus the health of many parts of my body, but Narcolepsy is 100 times worse to have. With AS, I can fight through the pain and have many physical coping options. With Narcolepsy, I am asleep, falling down w/cataplexy, having hallucinations, automatic behavior, etc...all out of my control...With AS at least I am still mentally in charge...Narcolepsy has been far worse for me. My AS is considered moderate to severe and I am only in my 30s. My Narcolepsy is also pretty severe and I have been on almost all of the meds out there w/out success or dreadful side effects. So, the next time it comes up w/your relatives, you can remember this post of someone with BOTH Narcolepsy and AS (and Hypoglycemia) and know the Narcolepsy is by far the worst with which to contend. ;-)



#3 Marcianna

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Posted 03 September 2008 - 11:51 AM

My ex inlaws were like that. I feel so bad for you.

Maybe if you could only convince him it was mind over matter and he could stay awake if he really wanted to..... um... right...... I'm sure thats gonna work.....

I will have to say that sometimes Narcolepsy is awfully convienent. Like for example when Thanks giving comes around and dinner is over, and you have to pick between doing dishes with the rest of the women like a good little domesticated girl, or going off to take a nap. LOL..... I have made many little old ladies mad by doing that.
They just dont get it.

#4 Lovemyhusband

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Posted 03 September 2008 - 06:17 PM

Thanks for understanding. It really sucks that the only people who truly understand are hundreds and sometimes thousands of miles away!



#5 Marcianna

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Posted 03 September 2008 - 06:42 PM

QUOTE (Lovemyhusband @ Sep 4 2008, 12:17 AM) <{POST_SNAPBACK}>
Thanks for understanding. It really sucks that the only people who truly understand are hundreds and sometimes thousands of miles away!


true... but....
In the grand scheme of the entire univesre.... that really isn't that far away at all.

#6 Lais02

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Posted 03 September 2008 - 11:07 PM

QUOTE (Lovemyhusband @ Sep 3 2008, 04:17 PM) <{POST_SNAPBACK}>
Thanks for understanding. It really sucks that the only people who truly understand are hundreds and sometimes thousands of miles away!


And... thank God we all have the internet, otherwise we'd be pretty alone in this!