the good, the bad and the really, really ugly

Let’s get real for a minute. This post is not going to be pretty and I’m going to show my ugly side for a moment. Because we all have one and I’ve made a promise to myself to be as genuine as I can be. So, here goes…
Celiac disease sucks!! I HATE IT! It is nasty and sneaky and ugly. It takes away your freedom. It takes away your spontaneity. It can scare away your friends. It can separate you from your family. It isolates you. It makes you crazy.  At least everyone will think you are.
I’m not here to tell you that dealing with Celiac disease will be a walk in the park. I’m here to be honest with you. And I hope that I will make you realize that you are in fact not alone. There is at least one other person in the world that feels what you feel. Someone else knows how hard it is. Another person is also struggling. Maybe I’m a little bit further along in my struggle and you can learn from my mistakes. That is my sincere hope.
There are days when I want to crawl up into the fetal position and cry myself to sleep. Before diagnosis, I was the ultimate food adventurer. In fact it’s one of the only areas in my life where I am adventurous. I am scared of heights, flying, going too fast, public speaking, escalators, spiders…you get the picture. But what I’m not afraid of is food. I love food. I love trying new flavors. I am not afraid to try something I might not like. I’m excited to say that I tried it.
Celiac has taken that amazing fearless part of me and made her afraid. Celiac has made me its bitch. It has made me want to cower in a corner. I can no longer dip my fork into the plate of my dining companion. I cannot take the bite that is offered to me. I cannot grab the bread bowl and share in the moment.
I hate this disease. I hate that people think this is some kind of “fad” diet. As if I would do this willingly! I hate that most of my family has no clue what I am going through. And they don’t want to take the time to find out. I hate that they keep offering me bread and cake and pie and saying that just one time won’t hurt me!! I hate when I go to a restaurant with a “gluten free” menu  the server has no idea what gluten free is!
I hate you Celiac!! I f&%#ing HATE you!!! I want to punch your face in the face! I hate that I can’t eat what I want when I want! I hate that I can’t have Pizza Hut pizza with my little boy when he has a sleepover. I hate that I have to wait hours to eat when I’m starving because I didn’t have time to pack a lunch and there are no safe options nearby. I hate that I can’t eat at every new cool foodie spot that opens because they don’t care about being gluten free. I hate that when I order grilled nuggets at Chic-Fil-A and I forget to check the bag until I get home they always give me the breaded nuggets. It makes me have a complete nervous breakdown. I hate that I can’t eat at arts festivals because funnel cakes and gyros don’t fly with my belly. I hate that I can’t eat my Granny’s dumplings, my PawPaw’s cornbread and my mom’s fried chicken. I HATE YOU CELIAC!! DO YOU HEAR ME?!! I HATE YOU!!
Whew… well that feels a little better.
Yes, it could be worse. I could have an immediately life threatening disease or disability. I am so blessed that I don’t. But Celiac can be life threatening if it’s untreated. Or often, once we are finally diagnosed most of us are suffering from several other autoimmune disorders. Even with that, I am still very blessed. And believe me, I do my best to thank God every day for everything that I do have. I have so much. But Celiac still sucks. I still have the right to take a moment and tell you how bad it sucks. To tell you how much I hate it. Because, if I didn’t I would be robbing myself of the opportunity to purge these feelings. Then they would fester. I would feel alone and I would never succeed. I’ve spent the last 3 years failing and it’s time to start over. It’s time to build a new life.
What’s the point of all of this rambling? To tell you that you are not alone. To tell you that it is ok to say bad things, to feel sorry for yourself, to take a moment and be depressed. Take the time you need. Curl up into a ball and sulk. Snap at everyone that tries to make you feel better. Stomp your feet and pitch a fit. You deserve it. You were given a crappy hand. Take the time, feel the pain, wallow in your own self pity. And then… open the windows and let the light in. Embrace how this can change you in an amazing way. Make new gluten free friends. Discover how true friends will stand beside you and support you in what might be your darkest hour. Find your voice. Look forward to a longer life with a healthier you.
As much as I hate Celiac I have to be thankful for what it has given me. I am finding my voice. A voice that was quiet and afraid to speak for most of my life. I truly believe I have this disease for a reason. My whole life I have wanted to make a difference somehow. And this is the one way I know that I can. I know what I’m talking about because I am living it each and every day. I always say that if I can reach one other person then I am doing what I’m meant to do.
I would love for you to leave comments and share your own feelings on the subject. What’s the worst part of diagnosis for you?

19 comments on “the good, the bad and the really, really ugly

  1. Crystal on said:

    Hugs to you Christy. I know how hard it is to bare your soul to the world. But it’s the first of many steps towards opening your heart, and healing. Thanks for sharing.

    • truly madly freely on said:

      Thank you for taking the time to read Crystal. It is very scary baring it all. But I know that’s it’s important to be real. I’m gonna do my best!

  2. Sheryl on said:

    Thank you for writing that. I can tell you my daughter feels that way even though she is 8. Sometimes she complains about it and some people don’t care and don’t understand. It makes me mad. I don’t have it and none of my family or my husbands family has it. It isn’t fair for her to be the only one. When she complains and sometimes cries about it I listen and I tell her it is fine to feel what she is feeling. I love her so much. Wish she never had it.

    • truly madly freely on said:

      Thank you Sheryl. I know that it is far worse when your child has it. They have a much harder time dealing with the social aspects of this disease that we as adults are better equipped for. We are taking my son 100% gluten free at the end of the school year to hopefully make it a smoother transition. And I am so sad about it. But I hope that it helps him feel better and get well. Have their been any drastic changes in your daughter since going gluten free?

      • Sheryl on said:

        Yes. One was before we knew she had it she was kinda of quiet and shy. Since gluten free now is happy, has energy , and is doing really well.

        • truly madly freely on said:

          My son is having some major self esteem and social issues that I feel are related to gluten. At least that’s what I hope because then I can fix it. It’s hard to watch him suffering and depressed especially at 8 years old. This should be the happiest and easiest time of his life. I pray that this will release him from his physical and emotional hurt.

  3. Michele on said:

    I too have an 8 year old daughter (almost 9) who has celiac and thyroid disorder (born without a thyroid). No one else in the family has celiac, but several of us believe that we’re possibly gluten we eat gluten free, but not exclusively and we don’t need to worry about contamination issues like my daughter. She has an amazingly positive outlook on life. 95% of the time she says she loves eating gluten free as she sees all the junk food her friends eat and she knows that she’s eating so much healthier than they are. She’s very active and has a 6 pack and muscles on top of muscles. She sees her friends who eat regular food are all heavy, starting pueberty early, pimples etc. So she has taken the positive out of it as it makes her a better/healthier person. The parts that bother her at b-day parties…always having to bring her own food & cupcake. She wishes she could partake with the rest of the kids. Even if they get gf ice cream, she’s so worried about contamination, she won’t eat it. And as you mentioned, being stuck out with no food and no place in sight to grab a quick snack. when all her friends stop by mcdonald’s before an evening meeting and she’s starving because I was too rushed to pack something. I try and do my best as her mom and advocate and stay positive. I’m hoping she keeps her positive outlook, but I definately can understand your frustration.

    • Sheryl on said:

      I understand about the birthday parties and last minute pick up meals. It gets my daughter too. I well let her know about your daughter. The more she knows about other people having it especially kids her age she doesn’t feel as bad. Thank you for your post.

    • truly madly freely on said:

      Thank you for posting Michele. The hardest thing is watching our kids struggle. I am positive on most days and am in a better place than I ever have been since diagnosis. But I did go through quite a rough patch a few weeks ago and wanted to be honest about the downside. It helps for people to know they are not alone. And she is so lucky to have a mommy that supports her and who can be by her side through her journey. I was very alone in my own journey until just recently and it makes it so hard. I hope that by each of us speaking out and educating those around us we can change things for the better so that our children will have an easier time.

  4. Britney on said:

    This made me tear up. I’ve been having such a hard time the last few weeks. I was actually heading over to my own blog to complain. This really made me feel a lot better.

    • truly madly freely on said:

      I am so glad that it touched you Britney. That’s what it’s all about. I am going to head over to your blog and check it out. Let me know if you need an ear. This is a tough road to be on for all of us.

  5. Wendy T on said:

    I too am a food adventurer. I love to explore new cultures through food. It’s really frustrating to have to worry about contamination.
    I don’t feel quite so much angst about it, however. I can still explore new foods… on my terms, in my kitchen. It’s how I cope. I take my successes and share them with those around me. It brings them closer to me rather than chasing them away.
    I was just explaining Celiac to someone at my phys therapist’s office today… she said “you can’t eat out anymore?” I explained the risks. It does suck. Other people say “that sucks”. One co-worker said my diet is a “pain in the ass”. Yep.
    We all have our crosses to bear. There are so many of us living with this. I hope nobody feels alone with it. Of all the disorders out there, the people who share Celiac tend to be exceptionally helpful.

    • truly madly freely on said:

      I totally agree about sharing your successes. I have many of those that I will be posting about in the future. I just felt it necessary to get the bad out first. I also love to cook and try out all kinds of new foods at home. I am one of the lucky ones that lives in a city with many great restaurants and gluten free offerings as well so I do get to have a little adventure every now and then. With all the bad there is just as much good if not more on some days. I think it’s also important for other people to understand the bad things about Celiac because I think there are so many misconceptions about it. Especially the part about it being a fad.

  6. Laura on said:

    You just took the words right out of my mouth, head, heart…etc!!! Thank you!

  7. The worst part of this disease is that it effects my family’s choices, which sucks because I’m the only one who has the limitations.

  8. Donna on said:

    I feel exactly the same way as you do. The hardest part for me is that my motherinlaw actually tells me that I can eat her baked chicken because she only put the flour on the outside. I can eat her ricotta cheese pie cuz the crust is only on the bottom. I have tried to tell her that it is like “RAT POISON” to me and she doesn’t get it. I also have Fibromyalgia. That was a joke as well until her best friend was diagnosed and she went on and on to me that her friend could barely get out of her chair today. WELL NO sh*^. WHAT THE HELL HAVE I BEEN TRYING TO TELL YOU? I could go on and on, but I think you all get the gist! Thanks for listening!!!!

    • truly madly freely on said:

      Yes, believe me I understand. I had dinner with my family from Alabama recently and they are the least understanding. And it’s mostly because they have no idea what I’m talking about. I ordered a salad without croutons and of course it came with croutons. I had to ask the waitress to take it back and please make me a brand new without the croutons. My stepmom said “Can’t you just take them off?!!” And you could tell she thought I was being over the top. The next day she was heating me up something GF and she pulled out her cast iron skillet. I asked if she could use another pan. And she said “I DO wash my pans!!!” She was so offended by what I was asking and I was just trying to keep myself safe. It made me want to cry and never visit again. It’s just too painful. In all of the physical and emotional ways. Family is the hardest!!

  9. Patty Ewings on said:

    Family doesn’t get it, it’s that simple…..they will never understand the struggle it is everyday. I am learning to call ahead to friends and family, to see what is being served, so I can bring my own food if necessary….I don’t expect anyone to cook me a special meal, but I don’t think they should be offended if I bring my own food, and ofcourse everyone thinks you can cheat just alittle….It’s very frustrating, but I’m just trying to not get into any power struggles with anyone. I also wish there were more GF restaurants and the prices of GF food would come down….thanks for letting me vent :)

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