I know I'm allowed to feel sad. I just don't want to feel sad with YOU.

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Kristina1

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Hi everyone. I was just diagnosed on Friday. I'm 31 years old, married with three young children. My husband and I had let our respective parents know that ALS was suspected, and when I received the diagnosis we gave them that update.

Over the weekend and through today I have been getting the calls from my immediate family. I have three brothers. I don't want to talk about my feelings with them or my parents. Their worry and fear and sadness is too much for me to handle. I am keeping my husband as my primary feelings confidante, and staying reserved with the rest of my family.

I keep hearing "You are allowed to be sad about this." I want to say: "Um, I know I'm allowed to be sad and I AM SAD. But I don't want to be sad with you!" Of course, I don't say that because I don't want to be a jerk.

I guess this is really just a vent. My husband asked me to let him take over communications with family and is encouraging me to hand my cell to him when I see it's them.
 

soonerwife

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I am so sorry to hear about your dx. You have the right to handle this nightmare however you see fit. Letting your husband tell them that you need time may take some of the pressure off you?! You have found a great place for support. Rant away! That's what we are here for.
 

Trixie80

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I went through the same feelings and situation with my family. I finally had to be honest with everyone about my not wanting to share my feeliings with them or i was gona end up not talking to them at all. I am mindful of my families feelings but my mental health comes first
Stress speeds up progression
 

KimT

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Kristina,
I can understand your position now but, at some point, these other people will be there for both you and your husband. Try not to isolate yourself. I had no choice. My only sibling is 80 and I have no children other family. Right now, letting your husband field calls works but one day it will not. Take your time. Come here.
 

scaredwifetx

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Kristina, you are allowed to feel this way. Its a shock and no one can truly understand how you are feeling. Not even yourself. You need time to be alone with your feelings. My husband and I could not share in the beginning with our family. We have slowly started sharing more. Most of the time, we don't want to talk about it at all.

You know your family loves you. Let your husband talk to them for now. They are also in shock and devastated. My thoughts are with you and your family as you begin this journey. I am so very sorry you had to come here in the first place. You will find this forum to be so very supportive and most of all understanding.
 

Kristina1

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Thank you all. I kind of wish we had not kept them in the loop the whole time. In the beginning when I first started seeing doctors I had no idea my issues were neurological let alone ALS, so I did not hesitate to update them about those doctor appointments and tests. By the time we realized it was looking like ALS they were very much in the loop and expecting updates. It would have been nice to have some space to process this on our own before dealing with the rest of the family.

Thank you all for listening.
 

Firefighter58

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Hello Kristina, I am so sorry to meet you here, but this is a exceptional place with a lot of amazing people. No one can tell you how to handle this terrible disease, but we have all been there in our own way, and we have all handled in our own way, just as you will. It seems like a impossible task right now but as time goes on you will learn to control it and live your life in a some what normal way. Every morning when you get up just say I feel good, this is going to be a good day, Do not let this disease control your life, take charge and control it yourself. Good luck and make everyday a good day.
Al
 

Lkaibel

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We all have our own reaction to this, either as PALS or CALS and I can only just imagine how hard this is for you. As the saying goes, "You do you" and don't worry now about what family or anyone else thinks.
 

DrFab

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Hi everyone. I was just diagnosed on Friday. I'm 31 years old, married with three young children. My husband and I had let our respective parents know that ALS was suspected, and when I received the diagnosis we gave them that update.

Over the weekend and through today I have been getting the calls from my immediate family. I have three brothers. I don't want to talk about my feelings with them or my parents. Their worry and fear and sadness is too much for me to handle. I am keeping my husband as my primary feelings confidante, and staying reserved with the rest of my family.

I keep hearing "You are allowed to be sad about this." I want to say: "Um, I know I'm allowed to be sad and I AM SAD. But I don't want to be sad with you!" Of course, I don't say that because I don't want to be a jerk.

I guess this is really just a vent. My husband asked me to let him take over communications with family and is encouraging me to hand my cell to him when I see it's them.


I am 35 years old but not the same onset. We can exchange by mail or PM if you want
 

Kristina1

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I am 35 years old but not the same onset. We can exchange by mail or PM if you want

Hi, I don't think I'm allowed to PM yet (until I have more posts). Sorry to hear about your diagnosis. How are things going for you? When was your diagnosis? I've been wondering if there are any correlations between younger onset and slower progression (hopeful thinking).
 

Lkaibel

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In theory, yes there is a correlation between younger onset and slower progression. Several studies have shown that there is a connection.
 

affected

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Lenore I'm interested in those studies, do you have links?
 

Lkaibel

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Lenore I'm interested in those studies, do you have links?

Our Doctor told me about them when I asked him if older age meant faster progression. He said no, you could be any age and have a slow progression, it was just that numerous studies had shown a link between being diagnosed under age 40 and a slower progression.

I should ask for details, it would be interesting.
 

Angiegal

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Hi Kristina..
Welcome... You do what you need to now...I'm sure, it will be FINE, however you choose to go forward...

Lenore, I would like a look at the studies too...Maybe someone else has seen the documentation?

Angie
 

lgelb

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Re the age thing, there's a lot of contradictory literature and tail-chasing (more definitive dx="faster" progression, duh!) but the things we are surest about at the moment are <40 at dx = generally better prognosis and >80 = generally worse.
 
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