KaliParticipantKali July 21, 2015 at 2:03 pm #12127
I think this is a good opportunity for us all to have a little story time.
At this stage in our lives we are all exploring who we are, adapting to the demands our health put onto us, and searching for someone to share our happiness with and soothe our burdens. But one of the biggest things I experienced in my long term relationship is how it affected and changed the both of us, and the surprising struggles we found.
Like how he likes to be spontaneous and exploratory, but my diet sometimes makes him feel stifled as we have to keep an amount of planning in our day. From not being able to just try a resteraunt on a whim, to having to plan out meals and routines for my diet and health as I get back on track.
By all means he is an amazing man, and I do not blame him for his struggles with adapting to my new lifestyle, I struggle sometimes as well in my own ways too. He has gone through over 5 years with me, and 3 of those I was either couch ridden, half-aware, or incredibly weak as I fought the damage already done before my diagnosis. It was a scary time for the both of us.
He does his best, but we are young adults and it has caused him doubts over the years over how well I will recover and how strong of an impact on his dreams of the future my diagnosis has. He is strong and fights his negativity, but sometimes it gets to him and he struggles with how something so seemingly small to others can cause such an impact on the way we live our lives.
He hates how I have to walk past my favorite candy shop from when I was a kid, or how I struggle with finding an appetite, or eating a full meal, or even worse for him, watching me deteriorate in front of him if I get glutened. I reassure him best I can, but alas I cannot change the permanent effects that come with Celiac, and how it adds routine and takes away a little spontaneity in life. I am confident he just needs time to feel more and get a chance see that the compromises we can reach are good too.
But these struggles our relationship went through, as we struggled for years to find out why I was slowly deteriorating, then the painfully and slowly recovering, and now learning a new lifestyle and new habits in a now seemingly extra scary world, and it makes me wonder what other people my age experience.
The stories of found and lost love, of strengthening and breaking relations, over something that impacts more than an average person would realize.
We talk a lot of how it affect us and our life and the opinion of those around us, but it also deeply affects the bonds of loved ones, who struggle with either not giving it enough care, or coming to worrying too much.
My diagnosis caused my partner to have to watch me fall apart and change in front of him, watched me struggle with my new challenges, and on things that I used to do without a care. He saw me struggle, and learned with me the changes to my life this would cause. I appreciate him to the ends of the earth for doing so. The time and commitment and effort that he as a partner took in order to commit to stay with me and my struggles, when I would never blame him if he chose to walk away. Because some people just can’t be happy in certain lifestyles. But we have worked hard over these years to adapt to each other and the changes and concerns Celiac brings into our life.
So I would like to take an opportunity to see how other partnerships adapted, how they struggled, and the wins and the losses that we come across in the stage of finding our team mate for life. For us to take some time to appreciate the people who our by our side day by day, living it with us in their own way.
linzfocoParticipantlinzfoco November 1, 2015 at 9:00 pm #13457
I have to first off say what a great guy you have! For him to stay with you through everything truly is a great thing.
Here is a bit of my story and I hope it helps.
My boyfriend never had to see me go through my diagnosis since that happened when I was eight. But he has seen me get glutened a few times and all it does is concern him and make him feel terrible. Like you I assure him that none of it is his fault and that I will be okay. What I have found that works for us is that he is willing to eat gluten free with me other than a few thing, I.e. his breakfast burritos. What also helps us with being spontaneous when we go out to eat it an app for your phone called “find me gluten free” that tells you of the restaurants that are fully gluten free or if they have gluten free menus.
I hope some of that helps and I wish you the best!
ewahbeParticipantewahbe May 21, 2016 at 7:48 pm #14693
Okay so I’d like to discuss friendships, romantic relationships, and even family.
So I’ve been suffering most of my life with chronic pain, chronic migraines and fatigue, skin rashes, digestive issues, joint pain, and more — due to frequent visits to the ER and urgent care facilities, I started Persuing medical help when I was 15. I am 27 now and finally 3 months ago figured out the mystery just from an elimination diet: this time it was gluten.
I’ve had friends come and go, and honestly most friends never stick around through the hard stuff. They wouldn’t drive me to the ER because they didn’t want to leave a party or football game and they sure as hell didn’t give me any support. Most of the time they’d say maybe it’s stress or maybe you should drink more water, or just plain old accuse me of faking for attention. Let’s just say right now I have no friends. Most of them gave up on inviting me anywhere , because I frequently said yes and then felt too sick or was in too much pain to go.
Family was very similar. Until recently (after figuring everything out), every ER or doctor visit was questioned and every headache was blamed on mental health like stress or depression or wanting attention. Only until I got out on my own and had to pay for all my medical bills did my parents realize that I may actually be going to these doctors and urgent care facilities out of necessity. Who would want to shovel out thousands of hard earned money to get out on prescriptions that give you horrible side effects???! Now after diagnosis, they have been super supportive and bring me fresh veggies, meat, and fruit- and even help make me freezer meals. I couldn’t do it without them at this point.
Now with boyfriends, I got a little of that but mostly they were extremely concerned with how sick I was and tried helping. Honestly I felt a ton of guilt when dating someone especially as I felt deeper feelings for them. I mostly barely wanted to go anywhere, felt sick most of the time, was pretty grumpy or out of it a lot, and had a come and go sex drive that sometimes made them feel less wanted . Not to mention the huge kicker, I found out I was infertile at the ripe age of 23. So I also knew I couldn’t offer them the chance to have kids later… So let’s just say I had a lot of boyfriends. I ended up breaking it off with quite a few because I felt like I was holding them back or couldn’t offer them what they deserved. I am in a relationship now and I still struggle with those feelings but I’m open with him about everything… He has helped me through a lot and has stood by me. He calls me his “white buffalo” which makes me feel super special. I have a lot to offer and am much more myself since going gluten free , but it has been a long winded struggle and I know it’s not over.
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