Some years ago, my nephew got diagnosed with leukemia at a very young age. He was quite sick and it was naturally devastating to the family (he’s fine and thriving now). But I’ll always remember something my brother (his dad) told me at that time. He said “when something like this happens, you sure find out who your true friends are”.
For some reason, that always stuck with me.
Which leads us to today’s guest post. It’s from Wendy who runs a wonderful blog called Palm Trees & Gluten Free. The blog is a place for her to share her feelings, food ideas around Florida that she experiences, an occasional recipe and other information relating to her gluten free journey.
Wendy’s tale brings me back to what my brother said.
Here’s her story.
———————————————————————–
Our girls had been good friends for the past several years. They participated in team sports together and we car pooled together. We shared many holiday dinners over the years and our husbands were friends too.
She had been one of my go-to friends when I needed to talk about how sick I was last year and how frustrated I was when I didn’t know and then when I did find out I was gluten-intolerant. She also shared the positives: The joy and excitement of discovering what was wrong with me, trying new gluten free foods, laughing at some of it and talking about healthy eating as a whole.
During this time we shared many other events in our lives besides ones relating to gluten: our kids, school, our husbands, our jobs, life etc.
This past spring I started feeling the distance between she and I. There was also a rift occurring between our kids…namely negative words and actions from my daughter’s friend. After a few attempts by me to straighten things out/figure out what was going on, I was finally told via email that she could no longer be the friend that I needed.
She had hoped that my need to talk about gluten free would end, but it never did. She felt like she had been a great friend before this time, but just could not do it anymore. She even mentioned “I have been listening for years”. While it felt like a life time for me, in reality it had only been a year and a few months since I had figured it out (several months of hell before that time).
I was shocked, saddened and angered.
In the past we had spoken at times about how this to me this was like a death. I needed to grieve and one way was through talking about it. There is not a local support group in my area and so I turned to my close friends (she was not the only one). I have felt my needs diminishing over the past few months and I had transferred a great deal of my need to converse about it with just my husband, because I knew it was time to get over it and stop talking about it even though it is here with me 24/7.
I hate it just as much as this “old friend” of mine now hates it. Hate that it has taken over my life, but I also have to embrace it because it has given me back my life. Ironic, huh?
In times of strife we turn to our friends to lend an ear, offer advice and lift us up. I am not the one in the past who needed an ear, advice or to be lifted up often. Occasionally, but I am for the most part a positive already uplifting person….who could pick themselves up pretty easily on their own.
I did turn to another friend who has been sticking by me through all of this…one that I would like to say won’t ever leave my side (we have been friends since grade school). Ironic though, isn’t it a bit? Turning to another to vent again?
But here is what she said: Friendships are not always fun, happy or exciting. Sometimes they do get boring or depressing, but someone who has become a true friend is there by your side through it all, the good and the bad. A true friend stands by you just to listen, even when it is over and over again until it is off your chest.
She also understands that the “gluten-free” is never going away…it has become a part of me. It is a large part of who I am now. I am no longer talking about it all the time, but it does come up when choosing a restaurant and when cooking…and yes, surprisingly I do eat every day so IT just IS there all the time.
I wish it were not, but this IS my life now. I don’t always feel peachy-keen anymore…like before all of this kicked in and that sucks, but I do feel a whole lot better and I suppose it is time for me to pick myself up and find most of my old self again. I guess I can be thankful for that part of the “Kick in the pants”.
Life is a journey…this year having been a rather long one…for myself and my family. Life goes on. We learn and grown stronger because of situations like this. In hindsight, I feel like I could have controlled some of the above a bit more, but I also realize that I don’t want someone in my life who could not handle who I have become.
I am Gluten Free.
I am also still a little bitter, angry and have lost some trust in the world for the moment. I don’t like the way it was handled and that this has affected my daughter and her relationship with her friend. I have apologized to her and we have talked a lot about friendship. I wish I could shelter my kids from pain and myself, but I know these situations are life lessons and life changers for the positive, and thus “Gluten Free” has become a New Significant Life Educator for my family.
A part of me wants to thank that “No Longer My Friend Person”, but I won’t give her anymore of my “real time”.
Gluten Free Living – Life Lessons:
- Find a support group to help you get through it. If there is not one around, there are so many outlets on the Internet. I have met some wonderful people via the internet who are in my same boat (message boards, facebook and twitter).
- Definitely have a go-to person that you know will always have your back. Thankfully I do have others.
- Realize that people don’t want to hear you talk about your pains all the time. Give them breaks and just zip your lip on occasion.
- Remember your old self and get back to having your normal conversations with your friends and families it will help you move on. I waited a bit too long for this, but I have learned.
- Having a chronic illness will teach you a great deal about friends and family – even things you did not want to know.
- Keep your discussions with your acquaintances and your co-workers to a minimum when discussing your food issues. Most don’t want to hear much about it and they don’t think it is the cure all…even if you do think or know that it just might be.
- And in the end if a friend can’t be there for you, then maybe they never really were your friend.
A good friend seeks to talk with you about your problems.
A true friend seeks to help you with your problems.
A good friend expects you to always be there for them.
A true friend expects to always be there for you.
*hugs Wendy* thank you for this great post! I’m glad you have others to turn to especially all of us. I tend not to discuss my gluten free life with others unless they ask. Mostly because I dont want to deal. My cousin’s husband always says that had gluten! To everything I put in my mouth just to joke around but it’s not right especially since I do not give him a hard time about his sensitivity to sour cream and mayonnaise. Anyway, thank you for your gluten free lessons! Very helpful.
“Adversity reveals true character.”…. yours and theirs.
You have risen above the hardship and illness and done all you could to get well…..and made peace with it. Kuddos to you!
So sorry your friend was only there for “the good parts”.
I had the exact same thing happen to me. I had several people desert us when I became seriously ill (from long unDxed Celiac) My downhill slide for 3 years was devastating, and I was dying for sure, but it was not as painful as having those close to me turn their backs when I needed them most. I could have used some loving support. None came.
Fortunately, I have some very loyal friends, too!–and NEW ones now– as the celiac community embraces their own without judgement. As my every-supportive and wise hubs has pointed out, perhaps I am better off without them —as they were often heavily reliant on ME for moral support and “good times” and the relationship was not very balanced at all.
It is sad, but it IS a life lesson –and now we know.
Someone I know calls celiac a “jerkometer”. 🙂 It weeds the pack, so to speak, of those in your life who are not made of “the right stuff”.
True friends hold us up when we need it. They do not kick us when we are down.
Best wishes to you!
IrishHeart ~ so agree on all.
I am very grateful for all my friends who stayed beside me during my time of not knowing and now knowing. It did not go unnoticed.
Donna ~ thank you.
Wendy, I am so sorry you had to go through this and that both you and your daughter had to lose a friend. I think the hardest lesson we have all learned at one time or another is that when a friend walks out of your life – maybe they weren’t that great of a friend after all.
And Irish… I LOVED this, “Someone I know calls celiac a “jerkometer”. It weeds the pack, so to speak, of those in your life who are not made of “the right stuff”.” Awesome!! And so true… my ex-husband set off the “jerkometer” big time after I was diagnosed. Found out he wasn’t made of “the right stuff”. 😉
That’s the best thing about finding this Celiac community online. It’s a great place to vent our frustrations to those who truly understand and want to lend a listening…and helping….ear!
Holy sh*t…I love the Jerkometer reference. That is awesome.
LOL…yeah, I loved JERKOMETER when I first heard it, too. A fellow celiac coined that one.
Just freakin’ perfect!!! 🙂
Thanks J! Very glad to have our online community. I wrote
this hoping to help others – it’s my third thing not to talk about … it’s like politics and religion. Who knew?
Bravo. Well said and great points.
I had a similar experience but I was the one who ended the friendship with a very old friend who suffered with many health problems that were mixed in with mental illness. It’s been years and it still hurts me that I did that. I couldn’t cope with her neediness because I had my own issues to deal with and felt ignored. My issues were quite important to me but I couldn’t get a work in edgewise. I felt she was not the same person I once knew and loved. I still don’t want to be her friend but I wish I had let it die a natural death which I believe would have happened. She would have found someone else.
Ironically, another friend did to me what I had done to my ex-friend. I had confided in her about what I had done and then she did it to me. I still don’t know why she felt that way since she didn’t want to discuss it but I feel she had coping issues like I did at the time I hurt my ex-friend. I let it go and don’t feel too hurt – a friendship is not a marriage. I hope my ex-friend coped the same way and is now happy.
Dude, I know you think us women are wacko, as my husband states sometimes, but that’s the way girls are. Women like to talk in confidence to friends and be accepted and part of a group.
After all this I now have health issues with celiac disease which I keep to myself as much as possible with my friends. I make light of it so I will be included in social situations and hide out at home when necessary. From the above I have learned that friends are people too and have their own issues and don’t want to always hear about mine. I feel strong enough to take care of my own needs.
Donna T – thank you for sharing your story.
We all have things to learn from ourselves and from others. It is how we become stronger people hopefully….whether you contribute to a situation or had it happen to you.
Gluten kicked me down several notches in other places than just my stomach … I am otherwise a pretty strong person. Thankfully I am back up to where I was prior to the kicking, so this just set me back a few days or so. It hurt, but I have definitely moved on for the better.
As for Gluten Free … It is something that all of us will have for life and we certainly should never be ashamed of how we now live, but I’ve learned to keep more quiet about it….even with those closest to me.
Sweetie, I have to say this. Hope you do not mind.
If you are not ashamed, then why do you feel the need to “keep quiet” especially around those closest to you?
Don’t!
Here is my thinking. I say: “I’m a celiac and I am gluten Free and PROUD. :)”
It’s not like we are “preaching a weird cult” or anything….
It’s who we are. 🙂
Yes, you are right I did come across that way. I’ll clarify. I’m definitely not ashamed and will always let others know when it comes to me being safe, just will keep my conversations shorter due to what I experienced for the moment.
And definitely love the “Jerkometer” comment. So very true.
Wendy,
I think it is wise for us to never apologize to anyone for being who we are and how we live–and I do not “regulate” what I talk about—not to anyone, honey. Politics, religion, celiac, whatever. Take it or leave it.
No one has ever been offended and we love each other no matter the differences in our perceptions.
Good, spirited discussions are life-affirming. I have friends/family who are democrats/repubs, gun-toting Mormons (yes!) and atheists. Vegans, gays, and other assorted wonderful peeps— who “live what they believe”…why should we be any different?
WE EAT TO SURVIVE. This is not elective.
I am like Popeye–“I yam whats I am” LOL
This is our life —and it is just as important (or more so) as discussing the freakin’ weather or the news..
I think you are fantastic, girl! 🙂
Hey, feel free to call on me anytime.
Cheers!.
IH
Irish Heart
I love how you think. Thank you for your wisdom!
I second that!
Not sure if it’s wisdom, being middle aged (i.e. having “mileage” LOL) or just having the crap kicked out of me and nearly dying from celiac that has given me this “attitude” 🙂
but whatever it is, I like the NEW me that emerged.The old me was maybe “too nice” and I tried to please everyone else and take care of them and I did not always take care of myself.
In doing so, I ignored the many symptoms developing that led to a horrible downfall in my own health and I had to become an unrelenting advocate for myself and fight long and hard for an answer.
That all came at a great cost, however ( as many of you already know from my story G Dude has posted.)
So, I learned a LOT about human nature and a LOT about what I was made of, too. I always thought I was strong, but I had no idea how much fight I had inside me. Apparently, I am a freakin warrior. 🙂
Keep your sense of humor, share your gluten- free goodness with others and stick with the people who love you unconditionally. As you love THEM.
Life is too short to worry about all the inconsiderate asshats
in the world. 🙂
Amen.
And on one last note … I was given a “where do we go from here” option at the end of my email from “said old friend”.
I took the “IrishHeart Road” and responded with “No where”.
I didn’t get lost taking it, but found myself even more than I thought I had at my age.
Like you, the very thing that tried to kill me: this “celiac” thing –was also the most welcome word I had ever heard, because it was an explanation for what had gone so wrong.
Celiac didn’t “cause” the break down in my relationships. The people involved did that. So be it.
I am one of the few people who can honestly say my DX was life-saving and brought enormous relief for us. It was a treatment that would make me well!!! We embraced it happily. (Would I prefer not to have it? oh, you betcha! It is inconvenient at times)
But it IS what it is. Things could be worse. I could be dead and never have known why.
I call my diagnosis oxymoronic serendipity.
🙂
You sound like a delightful person, honey!
I think you will have no trouble acquiring new friendships.
I wish you all good things!
Cheers, IH
IrishHeart – I appreciate all your kind words.
Hopefully this blog post and everyone’s input will help others.
I am in a good place and 100% thankful for my gluten free life. It is a part of us and finding people that understand that is important. I am grateful that I have so many others in my life that are. This was a small blip on the radar in the grand scheme of things. And I hope that anyone else experiencing it can see it as the same. 🙂
Now Gluten Dude …. I think I’m done adding for the week!! 🙂
Wendy, what a wonderful post. This hit very close to home as I am going through the exact same thing. I was there for her when her daughter died, her son went to rehab, and all other of lives problems. I knew things were changing when she started commenting how all she wanted was Wonder bread then she brought a pasta salad that served at least 12 for a dinner at my house because she wanted gluten. BTW her husband is gluten sensitive and the only people that could eat gluten were my husband (another friend brought potato salad which trumps pasta salad for my husband!). I also knew when she flat out refused to even look at my blog, she said she didn’t follow food blogs (I follow one because she recommended it!). I t does hurt when a friend falls away but sometimes we have to stand up for ourselves and protect our world. I know some people do not take gluten free seriously but when you are celiac it is very serious. It is exactly who we are!
I like Kristin’s husband’s comment about the “Jerkometer” So true!!
Sandra ~ So sorry. Thank you for sharing too. Hugs to you!
It is amazing that some of the people we care about the most can turn so negative and mean. We definitely have to stand up for ourselves and protect our world. Those people in the end are just not worth our time.
I was telling my husband, truly, I have not experienced something like this since grade school. It made it much easier for me to handle when I thought of it that way.
Nope, it’s my friend’s expression. but glad you liked it! 🙂
Wow! What a powerful blogpost! Know all of us who survive celiac have felt this rejection or flippant attitudes on many social levels. I’m so very proud that Wendy has brought this topic up in regard to surviving celiac disease to the front burner for discussion and debate at her own personal sacrifice – her privacy. I hope this is not lost on *anyone* who has read this blogpost, because if we are all honest with ourselves – this has happened to “all of us” with celiac. Wendy has provided us with a chance to commiserate, find resources, and become stronger individuals as a result of her experience, and our own.
I thank you, Wendy, for your courage, strength, and caliber as a human being for posting this blog. I hope your words will cause many to think about what they say and do *before they do it.*
With much regard,
Dougie
Thank you Dougie. I really appreciate it. I felt it very important to put myself out there a bit… Hoping it would be helpful for others.
We do need to hold our heads up high, stay strong and be proud of ourselves for managing celiac disease and gluten intolerance…. We all know it is not easy … But our health depends on it.
And we should not feel bad about taking about it …. It really is our life now.
There are so many people who are kind and genuine in this world and they are the ones worthy of our time.
Thank you Gluten Dude for having me as your Blog Guest!
My blog is your blog. I appreciate you and everybody in this community.
“If someone can’t accept you at your worst, they don’t deserve you at your best”
Luckily, ten years of progressively worsening symptoms while working with corporate (read: modern) medicine for an accurate diagnosis & treatment had already helped to assert this mindset into my life prior to my self-diagnosis of CD/(extreme)gluten intolerance. In comparison to fighting constant exposure symptoms with an unknown cause, I am happy to have found the (only) solution. My quality of life has unquestionably improved since going gluten free, not to mention I don’t pee blue anymore (sorry fellow Colts fans). Anyone that can’t deal with my limitations can suckit, kindly put 😉
Matthew – I think that path gets many of us there. Too many doctors having no clue and feeling like we are falling apart, then to find out it is just Food. It is quite the eye opener!
Glad you figured it out too. It is very worthy of standing up for.
What a fantastic post. “surprisingly I do eat every day” may be why I worry about over-sharing with my friends. I try to consciously think about whether *I* am being a good friend to them; I think it makes it a little easier to be a good friend to me then. I’m lucky to have some friends (but not family!) I count as my advocates (as defined in Allergic Girl). But my jerkometer has been thoroughly tested over the years from a near-death car accident (and relearning to walk), MS symptoms and diagnosis, thyroid diseases, and now multiple food allergies. The ones that are left have invested too much in me now to let me go! 🙂
I like that they have invested too much time in you to let you go! That is a Real Friend! ; )
Only gluten free read this blog and we are already compassionate to each other. Just think how you would feel if you had the most embarrassing, sickly experience the night before and had to listen to your (best?) friend go on and on about something that seemed mundane compared to yours but important to her. What if this happened constantly – she always had to have the floor. Friendship is a two-way conversation. That’s all I’m sayin’……
That’s right, it is a two way street. That’s our whole point!
We are discussing those in our lives who do not view it that way.
I’m sorry, but I do not see where any of us are saying it should be “all about US”.
We are saying we would like our friends to be there for us when we really need them. Not just when times are “great”.
When ANY ONE of my friends or family members has been ill, injured or diagnosed with an AI disease, I took the time to learn about it and to be helpful in any way I could. Make meals, clean their houses, drive them to doctor appointments, put cold compresses on their heads when they have migraines, hold their hands and let them cry, get them placement in a facility if necessary…..
That’s what friends do.
Celiac disease is not rocket science. It would take a day to educate yourself on it. So why can’t these people do it?
No clue.
We are saying, that in times of CRISIS and need, we hope we can rely on our friends to be there for us, too.
Many of us had people desert us because our being ill was an “inconvenience” to them. That’s not true friendship.
It was not because I was “talking about it all the time”.
I was dying. I wasn’t talking about much of anything.
Donna – I see your point, but like IrishHeart says – my friendship was not all about me. At times yes, but not always.
A friendship is a give and take, fun and sometimes not so fun … any good relationship is.
You’e so right about finding a support group to talk about these issues. Pregnant people need to talk to other pregnant people. Athletes need to talk to other athletes. UNIX people need to talk to other UNIX people (okay, that one was aimed at my husband.) People with a chronic illnesses need to talk to other people that have chronic illnesses.
Everyone has had things in their lives that are very important to them, but aren’t so important to those they talk to most often. I know my friends get very tired of hearing me talk about my dietary restictions, the latest symptoms of gluten intolerance/sensitivity, and my neverending quest for bread that doesn’t taste like sawdust. Even so, they never make me feel like these are unimportant concerns and always gave a sympathetic ear.
I’m also a very good friend in return. I’ve listened to their daily pregnancy updates and have pretended to be excited over at least 1000 fetus sonogram photos that I actually find quite creepy. I have listened to them lecture me on the importance of being “green” to the point of hiding my styrofoam cup Chick-Fil-A cup. Lord knows I’ve listened to every detail of their workout for whatever it is they are training for. In return they can listen to me talk about how I spent two days in the bathroom after being “glutened” by my grandchild’s Cheeto fingers. That’s what friends do.
I’m very thankful to have found this blog where we can vent, discuss, and share our experiences. I’ll bet we would all be BFF’s if we met in person.:)
No doubt Miss Dee.
🙂 Just thinking the same thing, Dee, Dude….
I have met some amazing people in my GF travels !
Just wanted say your awesome. I’m a celiac newbie and your one of my forum role models. Your strength and confidence shine through in all your posts and gives me a target to shoot for. I’m still healing and adjusting (3 months after dx) and will have to re-build probably 90% of my social connections. I take responsibility for that in not being more discerning in my choices for friends. I’m an introvert to start with, so “shallow” relationships were enough for me….when I was healthy! My older sister has been the one exception, having my back since day one of this. I’m starting to evolve from hopeless into curious to see what exactly will come from the ashes. Your story gives me added motivation to keep plugging and see If I can turn this into something positive.
Thanks Matt. Hang tough…it gets easier.
I am positive we would be as well.
Thanks GD for a wonderful blog.