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DDA: Debilitating Disease Awareness Guild!

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A guild to raise awareness about serious illnesses. 

Tags: debilitating, disease, awareness, support, illness 

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Brokebutt Mountain

PostPosted: Sun Aug 17, 2008 9:40 am


Hi. I just got invited to join this guild.
I recently overheard a disturbing conversation about my mom that she has Multiple Sclerosis. And more disturbing she hasn't told me because she thinks I'll try to kill myself ( I have had past problems with depression, and so has she) or not want to know her once I grow up to move out of the house.
I think because of this she's afraid of me becoming older and more independant.
I'm sure this guild will help me discuss it, since I have yet to tell her that I know.
PostPosted: Sun Aug 17, 2008 9:44 am


Hi BBM!

I saw your recent thread, that's what prompted me to invite you ^_^

I'm guessing the worst part right now is that A) you're not entirely sure what MS is, and B) you're not sure how to tell her you know?

Ignoring the fact that you found out by accident? How does knowing she has MS make you feel? Does it make you feel stress and upset, or worried but at least remaining calm? Does it make you want to kill yourself, like she thinks you might do, or are you more *thinks of a good word* positive than that?

AkibeJosephus
Captain


Brokebutt Mountain

PostPosted: Sun Aug 17, 2008 9:54 am


AkibeJosephus
Hi BBM!

I saw your recent thread, that's what prompted me to invite you ^_^

I'm guessing the worst part right now is that A) you're not entirely sure what MS is, and B) you're not sure how to tell her you know?

Ignoring the fact that you found out by accident? How does knowing she has MS make you feel? Does it make you feel stress and upset, or worried but at least remaining calm? Does it make you want to kill yourself, like she thinks you might do, or are you more *thinks of a good word* positive than that?

I never wanted to kill myself when I foudn out. I guess it was just a stupid phase as I was just becoming a teenager. It was over and done with, but I guess as my mom, she's still scared I get it from her.
It makes me feel kind of betrayed that my mom hasn't told me, but she's my mom and I'm worried for her. My friend's being great support. i haven't been feeling social and haven't left the house in over 5 days. So she's dragging me to a convention to try and make me feel better sweatdrop
PostPosted: Sun Aug 17, 2008 10:02 am


I think getting out the house is a good idea, if you spend too long cooped up then you're just going to have the same thoughts going round your head.

Are you better at verbalising your feelings, or writing them down? You might find it easier to write a letter to her, say that you know she has MS, and you know what it is and what it does, and while you're worried about her you will do everything you can to help her and support her.

There are a lot of charities and support groups out there where you can both speak to someone who can tell you what to expect in the future. For example after a while she will struggle with stairs so she'll probably have to move a bungalow or ground floor flat, or you might be able to get a grant to get a stairlift installed in her home. These people will also be able to give legal advice, if she's working and her workplace suddenly says "you have MS and aren't pulling your weight, we'll have to let you go" then these places can tell you what is and isn't legal.

If you research these kinds of things together, and talk about them together, then you'll know what her wishes are for the future and won't be shocked when she suddenly says "Oh by the way, I'm moving house".

But obviously the step before that is saying that you know.

AkibeJosephus
Captain


louM11
Vice Captain

Generous Giver

PostPosted: Sun Aug 17, 2008 11:36 am


User Image




Hey hun! Welcome to the guild, sorry to hear about your mum sad
PostPosted: Sun Aug 17, 2008 1:33 pm


The post you are trying to access is imaginary.

Hey BBM!~ Welcome to the guild!

I have many friends who suffer from MS. The degree of the disease varies significantly. Just a warning note - there is a possible genetic link. I think there are tests to see if one has MS....

Anyway, advice.

Okay, if you live in America, it is illegal to fire someone just because an employee has a disease. Case closed. Now, if the disease interferes with job performance, it gets a bit trickier. Any company with more than 25 employees must accommodate for diseases. I'm not a lawyer, though, and if it comes to that, it'll be best to talk to one.

I'd sue any company who messes with me, but that's just my litigation-obsessed nature. I'm considering law school, so in ten to fifteen years, you can talk to me. rofl

I understand why your mom did not tell you. For a moment, step into her shoes. Would her chance of giving you a normal childhood have been better with the threat of a disease looming over the horizon? I discovered my genetic anomaly when I was seven. Since then, I've lost the connection to relate to most people my age. I can barely see eye-to-eye with any of them.

Relax for a bit, and research more about the disease before telling your mom that you know about her condition. Depending on the progression of the disease, MS might sound scarier than it is.

I think it would be easier to talk to your mom when you tell her you know. Make sure to include a reassurement, a promise to be there if she needs support. Make a lighthearted joke - showing her that you don't think of her as any less can help tremendously. A face to face conversation can go a long way to help understanding.

Blindsided is a wonderful book by Richard Cohen. He suffers from MS, and the book he wrote chronicles the discovery of the disease, as well as the hope that leads him through life. I highly recommend it, as it's an amazing story.

Please rotate your computer 90 degrees and try again.

[mystical moon]
Crew


Brokebutt Mountain

PostPosted: Wed Aug 20, 2008 1:31 am


Hi again, sorry I'm having problems with my computer, so I won't be active much.
All good advice, but it's harder to follow. Every important conversation with my mom ends up in tears and one of us avoiding talking.
I've been a wreck all week, mainly because this added insult to injury. The same day I found out about it, my girlfriend cheated on me and then dumped me, my friend from since I was 5 stopped talking to me and my dog's become really ill.
PostPosted: Wed Aug 20, 2008 8:19 am


You sound like you need a hug.

*Huggles*

AkibeJosephus
Captain

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