I am not my disease

I am not my disease

 

I am a stubborn girl. I talk too much (and too fast). I am a health-research geek and an online shopping addict. I am a daughter, a sister, a wife and a new mother. I love to dress up and take pictures and learn new languages. I have a gypsy spirit and prefer to change countries every couple years just to keep things interesting. I am passionate about spending time outdoors hiking, playing, running and absorbing nature. I love working out and lifting weights.

I am not Crohn’s disease.

When I first got sick I felt like all of the things that were “me” were erased and instead of a patchwork quilt of interests and passions I was just SICK.

My doctor took notes at all of my appointments. I would read as he wrote (upside-down and backwards)…. patient seems to be discouraged. He reminded me of his goal, to find the right medications so that I could live a normal life. He even told me that depression was common in people with chronic illness and that if I was feeling depressed we could find a medication for that too. What he didn’t realize is that I wasn’t depressed at all…. I was lost, afraid and mostly just plain ANGRY. Why did I have to get sick? What did I do to deserve this? I felt stuck. I couldn’t travel, because I needed to be monitored by my doctors. I couldn’t focus or think quickly as I was used to and often forgot things (both that had happened in the past as well as things in my daily life). I went from being extremely social, to practically a recluse because my illness made outings any more than a few seconds from a bathroom terrifying. I didn’t know what to do.

I read online about diets that could help my condition but stubbornly insisted that my doctor must be right… medication, not lifestyle changes would bring around the improvement that I so desperately desired. Giving up my favorite foods seemed like yet another thing I would have to give up in my life.

After about a year of hospitalizations and numerous medications I realized that waiting for the drugs to work wasn’t working. I had to find my own way to health and reclaim my identity. I threw myself into my new diet and read everything I could find about autoimmune disease, diet, and nutrition. I met people online who struggled with autoimmune disease and were finding their own paths to health through diet and lifestyle changes and started this blog about my own bumpy journey. I finally started to feel better.

Now I was no longer controlled by my illness but instead consumed by healing myself. I spent most of my waking hours thinking about foods that I could make and reading about nutritional healing as well as blogging and posting pictures of almost every meal on social media. My days were filled with health and nutrition podcasts and cooking. I made fabulous dishes and avoided most social outings not because I was too sick but because I was afraid to eat anything that hadn’t been carefully prepared in my home kitchen. I also was afraid that if I went out I wouldn’t get the carefully measured hours of rest I needed every night.  I felt like I only could identify with others who, like me, spent most of their time and energy restoring their health. I made friends online for the first time in my life and felt supported by them at a time where the changes I was making seemed incompatible with the community I lived in and the world I saw every day off of the screen of my computer or mobile device. I talked to these new friends to avoid boring my other friends with constant talk about illness, diet and new AIP recipes. As a result I drifted away from many people who were my friends “in real life.” I wasn’t sick anymore, I was an autoimmune disease conquering machine. I ate things that I had previously considered inedible because nutrient density was my goal (yes pig trotters and bone-in sardines I am looking at you). I ditched running and heavy lifting for careful walks. And finally, I was healthy enough that I forgot to be afraid when I was too far from a bathroom.

With my newfound health came other changes, I became a mother and my husband and I decided to start a new life in the USA. I also realized that just as much as I am not my disease I am also not the kind of person who spends all day in the kitchen for fun. Don’t get me wrong, I love eating, but recipe development and beautiful meals are not who I am. I started to realize that just because my new diet (along with many other changes in my lifestyle) had given me back my health and allowed me to have a new identity beyond being SICK that didn’t mean that my new identity needed to be entirely focused on healing.

During the  past year (that I have basically abandoned this blog) I have been enjoying motherhood and rediscovering who I am. I realized that some of the things that I thought I was are no longer important to me. I also gained new skills and confidence and a passion for health through my healing journey. I still have Crohn’s disease. I still need to follow an almost elimination phase AIP diet or I risk falling into a flare. I have to sleep more than I used to or my energy plummets and my health deteriorates. But I am no longer SICK girl or AIP poster girl. My meals, while healthy and nutrient dense are frequently quick, ugly and repetitive. Most of my cookbooks are abandoned on the shelf and only consulted for special occasions. My social media has more pictures of trees and babies and beaches and less pictures of what I had for dinner. I have also spent this time trying to figure out what I really want to do as a career.

One of my favorite places
One of my favorite places

I am now back in school doing prerequisites so that I can begin studies in the health sciences. My experiences have showed me that I have a passion for health that goes beyond recovering from my own illness. I hope that in the future I will be able to give support to others in understanding their options and taking control of their own health in both traditional and nontraditional ways.

In a way my identity crisis pushed me away from the online community that gave me so much power and support. If I wasn’t consumed by healing I no longer knew how to interact. Much like a teenager trying to establish independence I felt like I wanted to push away everything that reminded me of my illness, including the intense path that I have followed to recovery. I thought about taking down my blog and quitting social media entirely, but the knowledge that my journey might help someone else made me push away that impulse.

 

I feel like I am finally in a place where I can find a balance. I have IBD, yet that doesn’t mean that is all I am. I follow a special diet and carefully monitor my stress and sleep, but that doesn’t mean that is all I am. I am finally learning to fit my disease and recovery into the patchwork quilt of passions and interests that is ME!
This post is hopefully the first of many as I start sharing a little more about myself. Expect some recipes (yes I still cook), some opinionated pieces on nutrition and health as my studies take me deeper into the functions of our bodies and immune systems, and quite likely some glimpses into my life as a mother of a trilingual baby in an intercultural family (if that term doesn’t exist, it should). Looking forward to interacting with you all again!

 

In our happy place!
In our happy place!

6 Responses

  1. What a lovely and honest post, Mikaela. So glad to see you back and hope to learn more about you too. You’re right, we are not only defined by our AI diseases or meal photos on social media! Thanks for sharing :).

  2. Your post really moved me. I’m newly diagnosed and just starting in AIP. I’m grateful for your blog and look forward to sharing this journey with you. Thank you 😘

  3. What an inspiration you are! I hope you continue to triumph over Crohn’s and that one day all the misery and pain will be a distant memory. But please never forget the people you helped along the way! As an example, I want you to know that your AIP Aioli May is beyond wonderful. I have a jar in my fridge at all times and can’t imagine a day without it. I put it on almost everything! 🙂

  4. Way to go Mikaela! I think this is a very natural process for most of us. First we discover a new life after illness, focused on healing, then we rediscover our “old life” with an added new dimension. Wishing you a lot of succes with your studies. xxx

  5. Thank you so much for this honest post! You spoke right from my soul. That’s exactly how i felt during the last year. When I realized that I was literally caught in a world of just thinking what to cook next, doing researches in social media for days to optimize my diet and always worrying of not getting enough sleep, not being strict enough, not eating enough micronutrients etc… it became clear to me that I had to STOP! I was absolutely obsessive. I have severe Crohn’s in the small intestine, already had several surgeries and discovering Paleo/AIP really changed my world. I felt so much better, I couldn’t believe that I had to wait 20 years to learn that a simple change in lifestyle and diet can change everything. But I became an addict. For real. And after two years of locking me in the kitchen and breaking up contact with nearly everybody I got into a deep depression. As a result I decided to skip everything and go back to “normal”, which included also a “normal” diet. After a month of eating grains again, I got a flare up. I was so desperate. So I realized that having this great tool to be able to control my disease is a real gift. Something like a superpower like superheros have it. You have to learn how to use it in a way that it doesn’t destroy your personality and your life. If you learn how to handle it, it’ll make you strong and healthy. Stronger than you ever where. I learnt it the hard way. I’ve just started the Whole30 again. I’m optimistic that I will find the right balance this time. Between being on a healing diet and having a life. And please excuse my bumpy English – I’m German. 😉

  6. Hi. I randomly found your blog while trying to look for Mayo recepies. I am not wanting this new AIP lifestyle to take over my life, mind, goals. Just like you as a new mother my focus is on being healthy and not just about what I eat. Good luck on the pre-reqs.

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