Food, Fellowship, and the Isolation of Chronic Illness

My relationship with food is tenuous at best. To me, food is more of a stress and hassle than it is an enjoyment. I have never liked to cook. In fact, I pretty much hate it with a passion, second only to grocery shopping which, unfortunately, is required for cooking. A form of torture for me is navigating the grocery store aisles under the dizzying fluorescent lights through the faces of people I should probably recognize but can’t put my finger on, and THEN lugging 20 bags of groceries up the stairs at home (all in one trip, ideally!), putting them away and then having to decide what to cook for dinner and actually cook it. I’m exhausted just thinking about it!

Oh, the irony of my life. Chronic illness and food sensitivities require a lot more time in grocery stores and the kitchen. I know that I am severely wheat intolerant so I have been gluten-free for about a year and a half. Thankfully, the universe is becoming more respectful to those of us with this particular sensitivity and many food labels say ‘gluten-free’. Such a blessing. However, I am also currently dairy-free while I try to get my stomach lining to heal. At one time I also had egg and corn sensitivities so I try to stay away from those as much as possible. Much to my dismay, I believe I have discovered that chocolate makes me itch. So subtracting all of these things from my diet doesn’t leave me with the means to throw together easy meals. I’m so inflamed that at any point I could react to any food, no matter how healthy, even just eating a vegetable. Putting anything in my mouth at any moment is a complete gamble. Hence, my growing fear and hatred of food. It’s not a very healthy attitude, but really, what can be expected?

Even more irony in the lives of those with chronic illnesses is that we are often too tired to cook but healthy cooking requires so much more thought, planning, and effort. I’m so thankful we have very tall kitchen chairs because when it gets really exhausting I can sit in front of the stove. We also cook almost every meal as opposed to being able to go out. Going out means risking not being able to find anything free of our particular problem foods on the menu, or cross-contamination with those foods. Going to someone’s house for dinner means risking our host not understanding that she/he cannot put our food on the same surface as bread, or not knowing that things like soy sauce and tomato soup actually have wheat in them. It’s so much easier just to stay home.

Hence the isolation. Food is often associated with fellowship. I dare you to find a gathering of people without some sort of food involved. If we get together with friends, it’s likely over a meal. I don’t often go out to dinner with people because it’s expensive to eat just a bowl of lettuce and I’m usually too sick to go anyway. I do not go to anyone’s house because I don’t trust that they know enough about hidden wheat (and why should they, really?). I don’t have people over because cooking is so difficult for me and entertaining is so exhausting. I’ve declined enough invitations that the few people who ever asked have stopped. I truly cannot remember the last time I just hung out with someone other than my husband. I pushed people away. Some pushed back (for which I am eternally grateful), but most didn’t. Sometimes I feel like people are just waiting until I get better without realizing how much time has passed and that I may never get better.

Food is almost as much about relationships as sustenance. Even Communion is a different experience for me. I confuse the server every Sunday at church when I only take the juice and not the bread (I either take the gluten-free stuff provided, bring my own, or only take the juice). And while the style of going forward to dip the bread in the juice is a beautiful practice, I cannot participate. I’m truly not complaining. I like to watch and I would never want to take away from anyone else’s worship experience. It simply is what it is.

My illness has strained some of my closest relationships and I fully admit that some of this is my own doing. While I am slowly learning to be more vulnerable, there was a time that I hated it with every fiber of my being. I also dare you to find anyone ‘prior illness’ who ever saw me cry. When my illness started to affect my everyday life, I didn’t want to admit that I needed my friends. I didn’t want to bring them down with my woes, and I was also having a big-ole pity party. Now, I’ve decided to take the risk of saying all of these things ‘out loud’ so that perhaps others who feel the same way will not have to take the same risk. If I’m painfully honest, with the exception of a very few all-weather friends, I feel mostly forgotten.

On the other hand… oh, the beauty of the other hand! The treasured relationships I have found through my illness have been life-giving to my soul. A new friend of mine calls these gifts “friends in sorrows”. I LOVE that sentiment. There is something about a shared difficulty that forms a much deeper bond.  Because of my own struggles, my heart feels so much more attached to those who have their own struggles. I promise I would take every ounce of pain from them if I could, because I know. I understand. And my heart hurts so deeply for them. If I could go back to a time before my illness began, but have to give back these ‘friends in sorrows’, I would not do it. They are much too precious to me.

So what is the point of my long food lament? I guess I just want to give voice to the world of food allergies and chronic illness and the isolation that often accompanies them. My message on behalf of those of us who suffer from illness is this.

– We’re still here. God hasn’t called us home yet so please don’t forget us. We understand that ‘regular’ life goes on, but we already miss out on so much. Don’t make us miss you too.
– Although the thought is sometimes unbearable, we may never get better. So please stop waiting for that day to be a part of our lives. We need you NOW.
– We may not be able to eat with you. But that’s not the only form of fellowship available. A text/message in the middle of the day letting us know we’re in your thoughts and prayers means infinitely more to us than an elaborate meal.
– We may try to push you away because we’re afraid you will break our hearts by running away. And yes, we realize the irony of this but that doesn’t make it any less true. We also may be afraid to be vulnerable or look weak so it’s easier to hide.
– Our illness has likely made us fragile in many ways. Please try to understand when we are moody. It is very likely just re-directed pain. We don’t mean it and quite often beat ourselves up later for being such storm clouds.
– You don’t have to be afraid to talk to us about your struggles just because you perceive ours as greater. It’s not a contest and your pain is just as important.
– At the same time, we are exhausted from fighting our own battles so we need you to offer us the same courtesy of lifting our burdens. We are not strong enough to carry both yours and ours unless you help.
– Nothing means more to us than hearing that you love us, you are thinking of us, and you have taken our struggles to the Lord. Nothing. Hearing someone pray for us is more life-giving than we can put into words.
– Please be our friend in sorrows. For that is when the deepest bonds can form.

1 John 1:7 says, “But if we walk in the light, as he is in the light, we have fellowship with one another, and the blood of Jesus his Son, purifies us from all sin” (NIV). Notice it doesn’t say anything about food being a requirement for fellowship. God may change the way we fellowship, and that’s OK. I’m not so much a fan of food anymore. It’s not important to me. My true, life-giving soul-sustenance is the fellowship of those who walk alongside me in the light. Love and blessings to all of you.

“A friend loves at all times” – Proverbs 17:17a (NIV).
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Author: Karina Baker

Hello, my dear friends! Glad to see you here. Thank you for reading about my beautiful rubble - my struggles with life, faith, and autoimmunity. Feel free to share your stories in the comments. My love and prayers to all of you!

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