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Profoundly Upset

saintmaybe

By saintmaybe
in Coping with Celiac Disease

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saintmaybe Collaborator
saintmaybe
Posted

My mom is coming to visit tomorrow, and initially I was really excited because this is the first time post-diagnosis I've seen her.

I haven't been feeling *great,* but certainly a lot better, and I was looking forward to this as an opportunity to reconnect.

Lo and behold, she calls tonight, jazzed about a work reunion she went to. As she's talking, it became clear that she was embarassed talking to her friends about me. As some background, I dropped out of a Ph.D. program, because as I now know, I had unremitting anxiety, depression, and brain fog due to Celiac. I had really bad neurological and DH symptoms long before I had really bad gastric issues.

Anyway, she started talking to me about how I needed to go back to finish my Ph.D., which I've already told her is an off-limits topic for conversation.

Then she said all these random strangers had tons of tips on eating gluten free, which, I'm sorry, is just insulting. It gets to a point where I don't like STRANGERS WHO ARE NOT CELIAC thinking they know more about my disease than I do, even if they are well meaning.

It all devolved from there into how I was a bad daughter, and I never call, yadda yadda yadda. I KNOW that I'm falling behind my peer group. I KNOW I'm not living up to familial expectations.

But it's so heartbreaking to realize that nothing I've said at all has made any kind of impact on her. I've told her I'm focusing on getting well, and that I can barely walk a mile, let alone pursue a degree program. I sleep 11 hours a day!

My priorities have drastically changed anyway- this disease could go into remission, but it could also be progressive and debilitating. I could get RA, Hashi's, even cancer. I can't take ANY day for granted, and I can't say that I really give a flying you know what about my career when balanced against other considerations.

Anyway, it's deeply, profoundly sad to realize that EVEN though my life has changed for the better with a diagnosis, not everything has or will. Just had to vent. :(

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beebs Enthusiast
beebs
Posted

My mom is coming to visit tomorrow, and initially I was really excited because this is the first time post-diagnosis I've seen her.

I haven't been feeling *great,* but certainly a lot better, and I was looking forward to this as an opportunity to reconnect.

Lo and behold, she calls tonight, jazzed about a work reunion she went to. As she's talking, it became clear that she was embarassed talking to her friends about me. As some background, I dropped out of a Ph.D. program, because as I now know, I had unremitting anxiety, depression, and brain fog due to Celiac. I had really bad neurological and DH symptoms long before I had really bad gastric issues.

Anyway, she started talking to me about how I needed to go back to finish my Ph.D., which I've already told her is an off-limits topic for conversation.

Then she said all these random strangers had tons of tips on eating gluten free, which, I'm sorry, is just insulting. It gets to a point where I don't like STRANGERS WHO ARE NOT CELIAC thinking they know more about my disease than I do, even if they are well meaning.

It all devolved from there into how I was a bad daughter, and I never call, yadda yadda yadda. I KNOW that I'm falling behind my peer group. I KNOW I'm not living up to familial expectations.

But it's so heartbreaking to realize that nothing I've said at all has made any kind of impact on her. I've told her I'm focusing on getting well, and that I can barely walk a mile, let alone pursue a degree program. I sleep 11 hours a day!

My priorities have drastically changed anyway- this disease could go into remission, but it could also be progressive and debilitating. I could get RA, Hashi's, even cancer. I can't take ANY day for granted, and I can't say that I really give a flying you know what about my career when balanced against other considerations.

Anyway, it's deeply, profoundly sad to realize that EVEN though my life has changed for the better with a diagnosis, not everything has or will. Just had to vent. :(

Its very sad that your mother seems to see your worth in terms of a Ph.D.

You may go back - you may not, that is your choice - I fail to see what it has to do with her....I'm sorry that she makes you feel like that. My mother wants me to do all kinds of things too - but she doesn't push the issue if I tell her to stop!

ahseya Newbie
ahseya
Posted

i feel your pain, i have a similar relationship with my family but things have gotten better. continue to focus on you and your health and happiness, and hopefully when she sees you she will see the difference. she will see health and energy coming back to you, and maybe she will realize that you are doing whats best. at least it may be a good opportunity to communicate some of this with her?

good luck!!!!

Jenniferxgfx Contributor
Jenniferxgfx
Posted

I also had to leave a PhD program (twice), and given the economy, I think that'll work out in our favor. Heh. Sucks your mom isn't more supportive. :(

AVR1962 Collaborator
AVR1962
Posted

Goodness! I do feel your pain and ONLY those who go thru this REALLY understand, I have come to that conclusion. I think your mom is only trying to help but she doesn't walk in your shoes so she doesn't know how. My adults daughters actually started having trouble before I did and I could not understand. Now that I have been diagnosed, they still have no dx, I feel bad for what I could not provide them with which is support. I just did not understand.

You have to do what you know you are capable of and you have to do what is right for you, bottom line.

I hesitate anymore to share my experiences, people just don't care, don't think it applies to them , or simply cannot understand. My husband the other day told me that he just thinks my system is still messed up from the liver cleanse I did back in Nov. I was rather shocked to hear him say this. After all the tests and everything I have been thru, all the doc appts and me telling him how sick I was he disagrees that this is actually something that is permanent? Really? People do not get it!

ravenwoodglass Mentor
ravenwoodglass
Posted

I'm sorry that she is being so pushy with you about the PHD program. She should be proud of what you have accomplished, and likely is. Talking to others about the diet may have been her way of not only trying to help but perhaps even to understand a bit more about what you are going through. As more time goes by and you feel better then it will be your choice whether to return or to take your life in a different direction. You will always be her 'little one' even when you are 60 and Mom's do often try to help in any way they can. Don't always get it right though. Please do try to enjoy her visit as I am sure she loves you and we never know how long we will have our loved ones here with us.

Skylark Collaborator
Skylark
Posted

Ugh that sounds like me and my mom. In my case she has impossibly high expectations for everyone including herself. I can't possibly be the daughter she was looking for because that human being doesn't exist. Mom doesn't even live up to her own expectations, which is really sort of sad. She does love me though, and now that I understand what's going on in her mind it's much easier.

I did go back to graduate school a second time to get my Ph.D. after I went off gluten but it was MY unfinished business, not my Mom's. Don't ask me why I decided I had to get a Ph.D. but I was driven to finish that damn degree.

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

My mom is coming to visit tomorrow, and initially I was really excited because this is the first time post-diagnosis I've seen her.

I haven't been feeling *great,* but certainly a lot better, and I was looking forward to this as an opportunity to reconnect.

Lo and behold, she calls tonight, jazzed about a work reunion she went to. As she's talking, it became clear that she was embarassed talking to her friends about me. As some background, I dropped out of a Ph.D. program, because as I now know, I had unremitting anxiety, depression, and brain fog due to Celiac. I had really bad neurological and DH symptoms long before I had really bad gastric issues.

Anyway, she started talking to me about how I needed to go back to finish my Ph.D., which I've already told her is an off-limits topic for conversation.

Then she said all these random strangers had tons of tips on eating gluten free, which, I'm sorry, is just insulting. It gets to a point where I don't like STRANGERS WHO ARE NOT CELIAC thinking they know more about my disease than I do, even if they are well meaning.

It all devolved from there into how I was a bad daughter, and I never call, yadda yadda yadda. I KNOW that I'm falling behind my peer group. I KNOW I'm not living up to familial expectations.

But it's so heartbreaking to realize that nothing I've said at all has made any kind of impact on her. I've told her I'm focusing on getting well, and that I can barely walk a mile, let alone pursue a degree program. I sleep 11 hours a day!

My priorities have drastically changed anyway- this disease could go into remission, but it could also be progressive and debilitating. I could get RA, Hashi's, even cancer. I can't take ANY day for granted, and I can't say that I really give a flying you know what about my career when balanced against other considerations.

Anyway, it's deeply, profoundly sad to realize that EVEN though my life has changed for the better with a diagnosis, not everything has or will. Just had to vent. :(

I could have written this post word for word. My parents were really upset when I dropped out of grad school (I was going for a PhD as well) due to health problems. They were also really upset that I had stopped sending birthday cards and stopped calling them as much. I could barely remember what day it was let alone remmember the date. Usually when they called me I was sure they had called just a few days before, but they said it had been weeks. Every year they send out a Christmas letter to friends and family where they brag about all the good things everyone is doing (including kids and grand kids). Two years ago they left me out of the Christmas letter completely. I kind of was glad (since I'm an adult and don't want people I don't even know to know my life) but it also hurt, like they were saying they wish I were no longer their daughter. Last year I didn't even open the Christmas letter. I just filed it away in my card box.

Marie1976 Enthusiast
Marie1976
Posted

Then she said all these random strangers had tons of tips on eating gluten free, which, I'm sorry, is just insulting. It gets to a point where I don't like STRANGERS WHO ARE NOT CELIAC thinking they know more about my disease than I do, even if they are well meaning.

I hate that too. I actually had a woman tell me that I was very young to have celiac disease, because her friend who was recently diagnosed is much older than me. I told her it doesn't have anything to do with age, and she said oh yes, it's usually older people who have it. Whatever! (She was otherwise a very nice person.) I don't get why people think they have to give their opinions on subjects they know nothing about.

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