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meadow

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Reply with quote  #1 
Hi everyone

I haven't posted for a while, been finding it hard to think about ED.  

I was wondering whether anyone else felt massively isolated by anorexia?  Our daughter (8) was diagnosed with AN at Christmas time and is now thankfully weight restored and has little by little been getting closer to full recovery.  However,  we feel very much on our own, and it's a lonely place to be.  To give a bit of background, shortly before D got ill we did a big, stressful move to a new city, where we didn't know anyone.  We had nobody to ask for help - family did a bit, but they're not really local.  We also have a younger daughter (5), who has been amazing but had to witness a lot of the horrors. 

We've gradually got to know some people, but nobody in our circle understands anorexia (or possibly even believes that D has had it).  We feel like we've been through this massive, life-shattering illness - which has taken its toll on every aspect of life - and nobody at all gets it (apart from our CAMHS team, which I have to say has been fab on the whole).  We feel ever so isolated.   

Can anyone else relate to this?  I've always been so grateful for this forum, but day-to-day in real life things are hard sometimes.  

Meadow x
rose08

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Reply with quote  #2 
Dear Meadow
Im really new to this, my daughter was only diagnosed with anorexia a few months ago, and am so grateful to have found this forum. 

I have found this illness to be incredibly isolating.  The few people we have disclosed to have been really supportive and kind, but in terms of real understanding, and actual "on the ground help" there is very little assistance.  I realize that there are very few people that can really grasp what a day, a week, month looks like in the life of family experiencing the effects of anorexia. I try my best to be patient, especially with older family members, who say things like "you really cannot allow her to stay in this state", or try to bribe her to eat with gummi-bears "See, you can eat these, they have zero fat in them!".  Sometimes patience wins, other times, not!  But mostly, I withdraw.  I hope my daughter and our family can emerge intact from this and find our place, and our voice, within our extended family and with friends but I think we are still so raw from the beginning of this experience that for now we have closed ranks....

It is really tough, and very lonely, and I just wanted you to know that I hear you and I do understand...
Hang in there, I always say to my children re their friendships, you will find your tribe and when you do you will know them, and they will understand you. I think this forum is a great tribe xx



camusicmom

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Reply with quote  #3 
Hi,

Your post resonated with me.  It's only been 5 weeks since my d was diagnosed but it definitely feels lonely.  We've lived in our community for years - I think it is the nature and stigma of the disease makes it issolating.  We've only told a few people about hospitalization and diagnosis and even some of those people have reacted with - "No, not (daughter's name).  There must be a mistake.  She's so smart and responsible." or "Well - I thought you were going to say cancer so I'm relieved it's not that bad."  I can't blame anyone - I had a lot of incorrect beliefs and assumptions and had to see with my own eyes and read a lot to understand the true scope of this disease.

I've also noticed that when someone's child breaks a bone or has a longer term illness or someone's spouse has a heart condition and is in the hospital - it's all over Facebook with lots of sympathy, offers to help and cheers when positive updates.  With this and the stigma associated with it plus the fact that it is my daughter's information to share - I felt like I couldn't post anything or tell hardly anyone.  And so it feels like we are all kind of silently suffering.  In addition - you look at her and you would never know anything is remiss.  There are no casts, no outward signs that someone who knows her casually would see.

I think this is part of what makes this so difficult.  But you are not alone - this forum shows that there are a lot of us going through various stages, various degrees of severity and that there is support.

Hang in there and we will do the same.
meadow

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Reply with quote  #4 
Hi, thank you for the replies. I'm really sad to hear your stories, but also it's comforting to know it's not just us.

Our daughter also looked fine despite being desperately ill (only one person ever commented that she looked thin). And she carried on doing well at school, despite the fact that she has zero recollection of things she did, watched obsessively on TV etc. during that period.

This week we had her first dental apt since anorexia ... she ate virtually nothing but chocolate for months (she didn't and still doesn't know about calories really - thank God). I explained everything to the dentist and got a grilling about 'why did she only have sweet foods?' - I felt like I was being cross-examined.

Rose, I'm so sad to hear about the negative comments and I am totally with you, you can't explain what a day with AN is like. I find myself starting to tell people about the physical aggression from D and the self harm and depression and the conviction that she was fat, and can hear myself sounding completely improbable. People just think anorexia is about being thin and needing to eat more, they don't know about the hours and hours at mealtimes and the panic about food and the fears that your beautiful child is going to starve to death.

Camusicmom, so saddened to hear of your experiences too and really wishing you well at the start of your journey. You're right that broken bones etc seem to be much easier for people to deal with xx
Foodsupport_AUS

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Reply with quote  #5 
It is definitely an isolating illness, both for the child and for the parents. Caring for a child with an ED is time consuming, and that alone takes you out of circulation. The added difficulty of no one else really understanding the illness, the length of time it takes, the toll on everyone's emotions it is a recipe for isolation. 
Even though we are seven years in to this, there are still social effects here. With a D who is not fully recovered the uncertainty about what will be happening in days, weeks or months ahead makes it much more difficult to plan things. Although she can feed herself she still struggles so being absent for too many meals is a significant issue. 

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Sotired

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Reply with quote  #6 
It has been isolating for us too meadow,so don't worry,you are not alone in that.i kept most of my friends,but only by talking about the hospitalisation,rather than my ds anorexia.then when it went from that to gastroparesis it was even harder.i find now that I keep everything a little closer to myself unless I come here,but even here I can find myself trying to make others feel better about our situation,rather than just owning that it sucks,it's hard,it's ongoing and it's relentless.
The after effects of what we go through is often downplayed.one of the things I found hard was when well meaning things were said-if it's this hard for you,imagine how hard it is for her-which just made my anger and resentment worse.the truth is my d doesn't remember how bad it was-but I do.i have flashbacks and ongoing memories.i have for the most part got past that,but those thoughts in themselves isolated me,because we aren't meant to be selfish like that...but I am.
I found the best thing was meeting up with a couple of mums from here and being able to talk and have coffee with them in my real life.they weren't going to judge me-they had seen me in the hospital with my d,they saw what I lived.i saw what they lived.
Is that possible for you?are there people on here,or that you met through treatment that you can say"hey,you wanna do coffee and a moan" to?
I found it a good thing to kept up with my own physical exercise too.it was nice to get away from the world of eating disorders and work on feeling physically strong.when I feel physically strong,it helps with my mental wellness.
All of that aside,I just want you to know that I hear you.i acknowledge your feelings and boy,do I empathise with them.
A hug your way hon,

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Sotired42
Mamaroo

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Reply with quote  #7 
Hi Meadow, if it weren't for this forum I would be very lonely indeed. We lost a lot of friends, they're still there in the background, calling every couple of months or so, but no real invitations to visit (although we have invited them). They probably think it's contagious. I know it sucks 😣. But we're always here on the forum, you're never alone.

Sending lots of hugs 🤗🤗🤗🤗

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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11 in March 2017. Challenging fear foods and behaviours now.
sk8r31

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Reply with quote  #8 
This illness is definitely isolating, & socially it can be very difficult to interact with family & friends, especially when in refeeding mode.

I'm not sure where you are located, but there are on-the-ground groups of parents who meet up, and perhaps there is one in your vicinity. Here is a list of support groups by country, some of which offer support meetings.

For myself, meeting up with parents for coffee or lunch on a monthly basis was a huge support, in addition to the online forum.

There are FEAST parents willing to speak on the phone as well, and you should be able to be connected to a willing parent volunteer by calling these numbers if you are in the U.S., Canada, the U.K. or Australia:
 US +1 855-50-FEAST | Canada +1 647-247-1339 | Australia +61 731886675 | UK +44 3308280031



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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
tina72

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Reply with quote  #9 
Hi meadow,
I feel with you and its so hard to have to stand this damn illness on your own. We didn´t have much social contacts before and it dropped to ONE friend who was still calling us regularly and keep visiting. In 6 months we had about 5 phonecalls. I was so lonely and sad before I found this forum and all the wonderful people here. Nobody but us understands what it means to have ED in the house. It is so difficult to understand for "normal" people. I try not to blame them but as camusicmom said, if it would be a broken leg or even cancer somebody would have contacted us. Society still blames the parents when children get ED.
Speaking to other parents helps a lot. Maybe your CAMHS can give you some adresses?
To stand this lonelyness and sadness is hard. My d is doing good now at the moment but I have still some days when I could cry the whole day without no reason. Try to do something nice for yourself and for your husband. Try to have some nice time for you two alone if possible.
It will get better and you will get to now other people. The ones who didn´t help you just forget them or give them a second chance. Some may have found it difficult to help and some may have been anxious. I have not been in that situation before but I don´t know how I would have react. The picture of ED in society is very wrong and bad.
Tina72
BattyMatty_UK

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Reply with quote  #10 
Hi Meadow, It resonates with me, too. Especially during the early months before I found this wonderful forum. The best thing for me (apart from finding this forum!) was to link up with other parents here in the UK, most of whom were or are members of this forum. There was a UK mum on this forum called Charlotte who many will remember put mums in touch with each other if they were local to one another or were going through similar experiences. Thanks to Charlotte, and also thanks to various UK ED conferences for parents, I got to know a really great community of UK mums, some of whom I have met in person and some who have become close friends who I meet up with regularly.

Sadly Charlotte passed away a couple of years ago (cancer) but I know that some of us here are keen to reignite the UK FEAST community. Just being amongst people who 'get it' can be so comforting and making new friends with parents who've 'been there, got through it' is amazing.

I was also fortunate to have a wonderful friend who supported me through the worst (until she, too, sadly passed away from cancer). My son's school nurse was also awesome.

Where are you based?

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Bev Mattocks, mother of 23-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
Kali

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Reply with quote  #11 
Hi Meadow,

I can very much relate. Even though we had not moved, for a very long time my life was all about trying to juggle working and helping my daughter and there just wasn't time for anything else. When you need to be home for as many meals as possible, and your child will not eat at social gatherings, or your child is in the hospital and you are feeling as though a truck just ran you over, it is easy to become isolated. And no one really understands what you are going through unless they have also gone through it. And I needed to spend a certain amount of time at work with colleagues or with family who didn't know what was going on while "faking normal" as I call it, which was also exhausting. But know that when the worst is over, you will be able to regain your social life again and meet new friends and spend time with people who will be meaningful in your life. 

I did try to go to a local support group once but it left me feeling more distressed and depressed than supported and I never went back. The way it was run was that it was for both families and sufferers and I'll be honest, I get very distressed and sad when I see the physical effects of anorexia. But I did find that when I reached out to a couple of moms from ATDT who I could tell lived nearby from what they had written, and met them one on one for a dinner or for some tea, that I felt that I was able to connect with them and found it really helpful and I really liked them and talking with them felt safe and non judgemental because after all, we had similar experiences to share.

If you can find something that makes you feel good, and take the time for yourself to do it, maybe an activity that involves other people, that is a start. 

warmly,

Kali



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kazi67

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Reply with quote  #12 
Hey Meadow
I'm only new here and so glad I found this site
I felt very lonely scared worried isolated and exhausted
Thank goodness for all the brave mummas who post on this site and help everyone to feel less of the above
How can anyone understand who hasn't been through this? I know I didn't
Reading everyone else's posts has really helped me and my daughter
We met with the "specialists" for assesment today and they said we have done an "incredible" job [smile]
So I thank everyone so much for answering my posts you are all AMAZING!!!
as I had no idea what to do, followed my gut and advise from you all
xxxx
EC_Mom

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Reply with quote  #13 
Definitely isolating and lonely. I'd love a parent-survivor network to meet up with locally--of people who have done it like most of us do here, not analyzing "deep causes" and "needing control" but just the hard work of refeeding.
BattyMatty_UK

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Reply with quote  #14 
EC-Mom, that sounds a really good idea. Swapping experiences about what worked for us re. refeeding. I guess we all have different tales to tell and what worked for one person may not work for another and all of that. Plus support i.e. just being with someone else who 'gets' what it's like to have been a parent going through this hell. And also what it's like to be a parent who's come through it successfully.
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Bev Mattocks, mother of 23-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
mjkz

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Reply with quote  #15 
Incredibly.  The worst part is that all the understanding (if you did get it in the beginning) disappears once your loved one looks normal again.  Few realize that getting them weight restored is on the first leg of this battle.  You still have years of dysfunction to deal with and everyone thinks everything is back to normal.
meadow

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Reply with quote  #16 

Hi lovely people. Thanks so much for the replies - I said it above, but it really is reassuring (whilst depressing) to realise that so many other people have experienced exactly the same.  

The timing of D's illness was just so awful with being brand new in a big city (maybe it was related to the move), but I remind myself that it's still early days and that anorexia just makes you put life on hold.

BattyMatty, I'm reluctant to post where I live on here because I work for the same CAMHS service that we're receiving treatment from and it feels a good idea to remain fairly anonymous. I'm much more relaxed on the Facebook groups as they're closed.  However, I don't mind saying it's a city in the South West of England[smile]

For similar reasons I've avoided looking into local support groups, because the families could be getting treatment from someone I sit next to at work!   However, the comments on this thread have really spurred me on to  find ways to link up with some others who really get what eating disorders are about.  I've met one wonderful lady from this forum. 

Great idea EC-Mom. 

Kazi, so pleased you're making such good progress.  Our CAMHS team have been lovely and very supportive and given us their best, but if it wasn't for this forum we wouldn't have known HOW to actually get our daughter to eat. 
 
Kali, a lot of what you said is so familiar. We had to cancel lots of play dates in the early stages, and we couldn't socialise as adults at all. My younger daughter's behaviour got really challenging too, so get-togethers were stressful and probably avoided on both sides because they were hard work.   You've also reminded me that I loved being at work in the early days because it was a breather (and that's despite being a highly-pressurised CAMHS team). Of course once I gave up work I didn't have that distraction. 

Sk8tr, thank you very much indeed for those ideas. 

Tina - yes! I've sometimes assumed people think it's our fault and we're bad parents. 

Mamaroo, thank you and hugs back.  I've sometimes wondered whether people avoided us in case their child got anorexia (more likely they weren't avoiding us at all.... or they were anxious about saying the wrong thing).

Sotired, a big hug for you as well. I've just read your other recent post and you're so articulate about how things are for you. My heart breaks at your story.  I'm glad you've met some people who you can be yourself around and moan to if you need to.  You're such a support on here. 

Mjkz - absolutely! So many people say to me, "She looks fine" (or the best one..."She's filled out"). 

This discussion has genuinely helped me.  It's made me realise I can't expect or hope my friends and acquaintances to understand at all where I'm coming from, but that that's ok, and I can search out some other parents who understand the trauma.  

xxx


momupnorth

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Reply with quote  #17 
I agree, this whole experience has been very isolating.  even well meaning friends don't always truly understand the situation.  For us it has been going on long enough and is wrapped up in other psychological issues and I find many people just expect my d to be better by now.
a support group for face to face meets would be great but they can be very hard to find.
Anyone local to/close to Barrie, Ontario, Canada...I would love to try to set up face to face meets....pm me if interested.
mom up north

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Mom Up North
Moving_forward

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Reply with quote  #18 
Hi Meadow,
I really feel for you and know just how isolating this awful illness can be for everyone involved.   My youngest of four was diagnosed a couple of years ago and about a year prior to being diagnosed, we had left a large city where we had an established group of friends to a small country town where we knew no-one. 
What I found especially difficult was that being in a new town for a year, I hadnt really established any close friends and my old friends were now too far away to catch up face to face had moved on with their lives -  I felt that I didnt belong in either [frown]
This forum was where I turned to, not that I commented much but I certainly visited daily and just reading others experience, advice helped me get through my darkest days.  Hang in there, everyone here really gets it and can be the friends you need til things get better and life swings around again.
Take care x

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toothfairy

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Reply with quote  #19 
Hi Meadow,

I was very upfront from the start of my sons illness, and while that definitely stood to us, as people watched out for him , I feel we still really suffered from the stigma, not only of anorexia, but a boy with anorexia.

My best friend said to me when I told her " but I thought you were good parents", so because of that, I have seen her twice in the last 2 years, as I can get past that. My SIL told other family members that we need to take a long hard look at ourselves, to see what we did to cause my son this illness.

For the first year I  cried rivers, I was absolutely terrified of this vile illness, I was in an awful way trying to keep my head above water with this horror and also protect his identical twin from this. As he purged, along with the re-feeding. the job at hand was close to 24/7 for a long time for me to help him into recovery.

I was in such a state emotionally that I could not even enter the door of a shop in my town, in case I met anybody I knew. and they asked me about him ( he was missing from school, and most people knew he was very ill)..for fear of me just breaking down, which had previously happened in my local supermarket, after another mother asked after him... So I would shop half an hour away.

Like Kali, I went to a support group which was run by the main ED charity here. It was absolutely horrendous, I came out much worse than I went in, parents moms and dads roaring crying explaining how their lives were destroyed, and there was no hope, this was facilitated, it was really horrific...I felt much worse and hopeless after it.

I am trying to move on now as time passes, but I will never, ever get over this. I will always sleep with one eye open! I am definitely deeply traumatised. I know I have PTSD and I constantly  catastrophize .
 I know I have changed, I dont suffer fools gladly, and find going out with people right now can be very shallow.  People in my circle just seem to cruise from holiday, to events, to great times ,and talk is mainly about diet and exercise, clothes, and body and fat shaming.

I know its time for me to dust myself off and get my act together and get back in the mix..... starting this week!

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
meadow

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Reply with quote  #20 
Hi, Momupnorth I hope you find some people local to you as well xx

MovingForward, that is EXACTLY our situation!  We had great friends where we used to live, but we didn't see them when D was very ill, and you can't convey anything really through phonecalls and messages.  Then a year on their lives have moved on and we feel as though we've only just landed here in our new city.  I completely feel as though we don't belong in either place.  However, it can only get better (I hope), and I do remember how long it takes to make close friends... and that's without having a life-threatening illness thrown in the mix. This thread has really helped me to accept that other people just aren't going to get it, however well-meaning they are, and not to expect anything from them.  And I'm trying to make some links with other people locally through the Facebook group (Momupnorth are you in the ATDT FB group or the EDPS one?).

TF, I can relate to so much of that. I remember offloading to a poor cashier in ASDA - I'm sure she thought I was totally mad.  You've done such an incredible job.  I'm getting back in the mix this week too!!  

I've been quite upfront about D's AN as well.  I get where Camusicmom is coming from that it's her daughter's story to share though.  With D, I just knew I couldn't get through it without talking a bit to others, so I've tried to protect her privacy where I can, but most/all of our immediate circle know.  It also saved awkward conversations about why we've got so much high-cal food in the house, why she missed PE all year, has lots of apts etc. And... I really want people to know that young kids can get anorexia!  I'm a CAMHS psychologist myself and still wouldn't really have believed a 7 year-old could develop AN until it happened to us. 
martican

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Reply with quote  #21 
Hi Meadow. I have a great family, we are close but I live overseas and that was probably the most isolating thing in terms that not even they understood the illness and whatever they said made my day worse. It feels like everyone is talking in a different language, even my close people. I try to think this way - if I haven't crossed path with AN, I would have probably known more than they do. My MIL tried to bribe my D with $50 to eat, many times - she just wasn't getting it. My H still doesn't fully get AN and he lives with it in the same house.  Like mjkz says, even when wr, there is still a long journey ahead but nobody understands. We haven't had friends over for 2 years, and we declined the invitations. I was thinking to start a support group for parents in my city but I see how hard It is to get out of the house esp. in early refeeding days. Therefore I just do my thing what I learn from this forum, and truly I don't care anymore what everyone thinks of us. I found things to do at home that I never had time to, and coming back to this forum every day is my lifesaver. One thing I kept is my public speaking club (Toastmasters) once we got through the worst, once a week. Nice people, open minded,  I did couple of speeches on anorexia (with my D's permission) and the feedback was amazing. 
martican

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Reply with quote  #22 
*I wouldn't have known* - meant to say
meadow

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Reply with quote  #23 
Martican, oh I hope you start to feel less isolated too. Lol, public speaking is literally the last thing I would want to do for fun! I have huge admiration for you!

You know this thread has turned out to be such a help for me. It's really got me to realise it's not personal that people haven't been as available/supportive/helpful as I would've liked, and even more grateful for this site. This has been a week of closure for me in other ways too, and I'm feeling a whole lot more positive🙂. Thank you!
martican

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Reply with quote  #24 
Meadow - it was either that or a bungee jump. I chose public speech [wink] 
I am so glad you are feeling better!!! So comforting to know where to go for some uplift. 
EDAction

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Reply with quote  #25 
Dear Meadow,

Our D is doing well now.  And I am so thankful.  But it has changed my friendships.  I've shared our experience with some of my friends.  No one understands fully.  And it's made me realize that I don't fully understand some of the struggles they have shared with me.  So on one hand the whole experience has made me more compassionate.  I try to understand my friend's struggles more fully by listening more.   

And some friends I see too infrequently to be able to share that much.  So they really don't understand.  I wonder if I should have even told them.  One dear friend disappointed me when I got emotional while I was trying to fill her in.  She suggested that maybe I wasn't ready to talk about it yet and changed the subject.  Part of me knows that she was doing her best and didn't know what to do but another part of me can't seem to forgive her.  

For a while I didn't want to be around people much as I couldn't stand being around people who didn't understand.  And when you're in the thick of it you really don't have much time anyway.  As time has passed, and D's health improved, this feeling has dissipated.  I'm stronger now.


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