1199758 tn?1280749081

Dealing with family

Okay, so here's a question for any and all, lol.  How does one deal with family who live far away and JUST DON'T GET IT???  Both of my parents, who live in California (I'm in SE Texas), keep advising me to not take my diagnosis so seriously yet, as it came from a "hick e.r. doctor" (don't you love it?), and that I should wait until I can get to a neurologist/neurosurgeon for a 2nd opinion.  Mind you, after reading everything I can about Chiari Malformations, I'm quite comfortable with his initial diagnosis being correct.  Plus, I have the added "benefit" of being unable to get a neurologist or neurosurgeon to see me as of yet because of insurance issues.  My mother has become more amenable to the diagnosis, but she keeps referring to it as "a condition":  "You've only got a condition, right?", whereas my father keeps telling me I shouldn't be worrying folks on Facebook who are thousands of miles away and can do nothing with my status updates.  Besides, you shouldn't put personal stuff on the internet!  Oh, and I'm "embracing the symptoms... the pain is all being brought about by that."

I'm in constant pain, as I'm sure most of you have experienced/are experiencing.  Some days it's so bad, I can hardly get out of bed.  I'd really like to have my family behind me in this, but with them so far away, it's hard for them to understand the severity of it.  I can't cough without ending up on the ground from the pain in my head!  Honestly, it's so frustrating to have to be dealing with what's going on in my body as it is, let alone having to deal with them.  Has anyone else had to deal with people who SHOULD be supporting you ending up making it worse by not doing so?  If so, how'd you do it?  I don't want to cut my parents off, I really don't.  I just don't know how to deal with the 2nd guessing, and talks of how I'm malingering, instead of working and being normal the way I should be.  I need my support system in place right now... the depression I feel, all by itself, is staggering enough.  I feel like I've not only let myself down by having this, but that I've let everyone else down, as well.  I can't stand up straight, especially when I'm tired... I "curve" to the left.  I don't sleep more than 2 hrs at a stretch.  There are times I feel like I walk like Frankenstein or some other fictional monster with a halting gait.  Plus, I'll sometimes just go to the side when I'm walking forward for no other reason than my feet decided they'd rather visit there.  My vision just suddenly "tunnels", my head gets all funny feeling, my limbs go weak, and I end up on the ground.  Sometimes, my limbs just go weak.  There's no rhyme or reason to it.  And the pain... from my head, down my neck, into my shoulders and spine is excrutiating.  I love my family, I do... I'm just at a point where I don't like them a whole lot right now.  And, now that I sound like a whiny snot, I will apologize.  I'm trying to be positive, but today is not a very positive day.  
7 Responses
1179332 tn?1297478990
Ohhh I'm so sorry to hear that you are going through this....without the support from my family, I don't know where I would be.

I am wondering if they are going through some type of denial...so they just aren't accepting the facts? I have to say that it is a lot harder when they can't see what you are going through, my family watched me slowly go downhill so there was no question to them that something was wrong.

My mom followed my posts and FB and she said that really helped her understand how I felt but it doesn't look like there is an option here...

There are a few videos, one posted by a member here called "The Spoon Theory", I showed it to my family and I felt it was really effective (just google it).

Otherwise, you just need to stand strong and not doubt yourself...you have very severe symptoms and they need to realize that it is not going to go away and that you need to take action.

I hope that us on this forum can at least provide you with a little of that much need support!! Take care and please feel free to vent on us...that's what we're here for!

1088046 tn?1272285396
I'm with Carolyn on this one. I don't know how I would be as strong as I am right now without my family behind me... them and my MedHelp family.
And I love the spoon theory.

I don't know you, or them, or how your relationship is... but perhaps you need to lay down the law, tell them how their lack of support makes this all the harder for you, and how you really just need them to be there for you right now. How their lack of support is making it HARDER for you, and that's so unnecessarily. And perhaps also send them articles, news stories, websites, and blogs to help them understand what Chiarians go through.

Good Luck, and you have us, sweetie! I have found that there are times when the friend I've made on here are way more comforting then anyone else, because the people on here not only sympathize, but really and truly understand. We will be your support team :)

1199758 tn?1280749081
I wanted to say thanks for the responses.  I haven't seen anything on the Spoon Theory as of yet, but I'll definitely be looking for it!  I think you're right, Caroline, about the denial thing.  It's just that, right now, I need them to snap out of it!  And, Ambyr, I would love to have you as part of my support team.  In a heartbeat!  And I'll return the favor.  I really am a much more positive person than I've put out thus far, honestly.  I'd just been yelled at once too often.  :^X

Love and Muggles,
620923 tn?1452915648
Hi....I totally understand ur side and ur parents....listen if there r Drs...professional that will discount this condition we can not expect our family to understand it.....

SO, as Ambyr has mentioned MedHelp family...we r a family here and it is a place for info, but more importantly Support.

I hid my dx from my family for reasons Carolyn said...the added pressure of giving updates, or dealing with someone hovering I knew would be too much to deal with, so, I only told those I knew would understand and support regardless if they understood.

When those outside that small circle asked how I was I would reply...I am ok...hanging in...or not bad....

Vent here...let us be the support u need.

Chiari makes us compensate to do daily activities others never give a second thought to....but we adjust bcuz we have to in order to keep from feeling badly...so we can continue to function the next day......these other people the drs included do not.

So don't be hard on ur family or friends that don't understand.....just remember the dr that spent yrs in medical school to learn how to help those in their care and their choose to ignore or belittle it bcuz they do not feel chiari can cause issues.......

We r here and we understand : )

Avatar universal
My parents were awesome when I found out -- but they both had cervical spine surgeries and issues of their own, so they could relate to my symptoms and honestly PUSHED me to get checked. My INLAWS however, never backed me up and still think I did it all for attention. They didn't help me after surgery, and still don't even ask me how I am. That has been exremely difficult for me to come to terms with (not to mention that 2 of my bro in laws are doctors -- an internist and a SURGEON!) because I haven't ever done anything to make them feel like i was "faking" or anything. It is hurtful, but...what can you do?

My husband at first thought I was getting too "into it all" -- researching myself into a diagnosis and obsessing over it making my symptoms worse. It wasn't until he went with me to my NS appointment and heard what the NS had to say that he realized how much fo my symptoms were explained by this-- and also watching me spill a perfectly good cup of coffee on my pants because my hand lost feeling :)  Now after my decompression, everyone sees the difference in me, although certain people still won't admit it. All that matters is that you believe in yourself -- the rest will come with time. If they didn't live so far away, and could see for themselves, it would be different. Also, as a parent, I know I would have a hard time accepting this diagnosis for my child! It's a tough thing...give it time and try to be patient with them. They are your parents and they will come around when they have the opportunity to understand better.

We all have moments and periods of time when we don't like our family a whole lot -- but we know that it is just a period of time, a few moments, and then it will pass.  

Best of luck getting to see a NS...we all know what you are going through with symptoms, so get on here and be a whiney snot as often as you like :) We will read and comment and encourage!

1041839 tn?1278681846
Hi honey! I totally agree with what everybody else said and i personally understand! My parents have been supportive but not my husband! He just didnt understand and thought i was just depressed or it was all in my head! BUT after we talked to dr. Heffez explained everything yesterday, my husband gets it! He even apologized on the plane for doubting me! So i know things will be better now and there wont be so much tension in my house now ;) maybe if you gave your parents information on chiari or got them to read some of the posts here on medhelp they would have a better understanding. I'm sorry your having to deal with that on top of the chiari symptoms but just know we are all here to support you! (((HUGS))) Shannon
1088046 tn?1272285396
My and my Chiari's memory... lol.
You said you are in Texas. I was just telling my DH the other day how much I wish I were in TX because of the convention that is going on there soon! Maybe you'd be interested in it? Networking with others that have the same condition that you do (I call it a condition, too, sorry)... listening to doctors and experts... Man, I really wish I COULD go!
ASAP's Chiari and Syringomyelia Conference
July 21-25, 2010
Hyatt Regency
Austin, TX
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