What I Wish My Friends and Family Knew About My AutoImmune Disease
Updated: Jan 26, 2020
AutoImmune Disease (AI) is so differently perceived from other illnesses because people don't hear about it often enough to relate it to someone dealing with it as we do with cancer, diabetes, and others. It's also misunderstood because, from the outside, most of us put on a smile, make jokes, and try to pretend things are better than they are so we don't 'look sick'.
Those of us living with AI can't just take a pill and go on with life as normal. Personally, I wouldn't want to be dependent on a foreign substance to get through each day... but I can't lie. There are many days I wish I just didn't have to deal with it, could go in for a shot and eat/breathe/touch things like a 'normal person'.
Since that isn't the case, and I'm definitely not a weak person, I deal with it and figure out
how to make it easier each day. Food and mental attitude are my 'medicine'... so, I pity those who don't know better and test my outward good nature. With AI, anger and stress are the biggest factors that contribute to a flare up and we are taught not to hold that stuff in. Sorry, not sorry.
I get messages daily from people newly diagnosed or trying to figure out thing on their own asking questions or seeking advice. I LOVE hearing from others living with AI, no matter what form (doesn't have to be 'just like me'). It is so uplifting to share a few stories, find that "ME TOO!!" experience, and feel like I am not
alone. No matter what type of AI someone is dealing with (lupus, celiac, fibro malaysia, etc), there is one topic we all have in common... "how do I get my friends and family to understand what I'm going through and how it affects every thing I do without sounding like a medical journal or like I'm asking for sympathy?
It's hard! The people that love us but don't live with us have questions but don't always know how to ask them.
The fact that many medical professionals are still trying to understand the complexity of the immune system and modern culture has turned being gluten free into a "diet by choice" makes the confusion even more difficult to assuage. My advice is always to be open and honest with how you are feeling each day without being "preachy". Wondering how you are feeling and coping only adds to the confusion for those who really care...
Like the joke that says, if you ask a woman how she's feeling, and she says 'fine', you should run for the hills because she's had 'fine' bottled up for too long and is ready to go ballistic. Don't bottle up. ;)
Many times, people will say things or give inappropriate advice because they don't know better. When someone tells you to "take zinc because it helped with my arthritis" or "avoid this in your diet because that's what helped me lose the weight", this is your opportunity to explain to them how AI really affects your body. If they care, they will listen.
My AI as an adult has affected every facet of my life. Thankfully, my husband was with me in my 20s when it was first partially diagnosed. So, having to change our lifestyle wasn't new to him. Our house is completely gluten and soy free even though he does not have to be... then again, I am a damn good cook so it's in his best interest. He also eats gluten/soy free whenever we go out together. If he wants a goodnight kiss, he damn well better not have breadcrumbs on his lips. ;)
My parents have also finally started to understand what I am living with ... though it's ironic that it took them so long since they were the first to know I had issues as an infant. With them, it was difficult to stress the severity... that I can't just have a "little taste" or that using the same cutting board to slice bread and the chop veggies is enough to make me sick for 10-14 days... again, that means losing 2 weeks of your life that you cannot get back.
With the positive, there are the negatives. Unknowing to me, my husband stopped accepting dinner invites and others stopped asking because they thought it was too difficult for me.
If I could go back to the early days, I’d be more open and let those close to me know what I was going through and how I was feeling. Hindsight is 20/20. I wish I could have made a "guidebook" to explain what I'm going through and how I feel. Instead, now, I have put together some thoughts I hope that my friends and family find helpful in understanding the daily physical and emotional struggle I deal with... or use them as a jumping off point to ask more questions.
Things I Wish My Family and Friends Knew About My AutoImmune Disease…
1. I want to be included (no matter what "Mr. No-Fun" says) even though I can’t order freely from the menu. The point is spending time with good friends. The food is secondary. Unless you insist on something like Italian or Chinese, I can find something on the menu... especially if they serve wine. I just want to be around my friends.
2. I’m not doing this as a fad-diet or to lose weight (obviously, if you've seen me). The gluten-free diets that people are on these days are not what a person with AID normally eats. Gluten-free crackers and baked goods?... fad. I only eat real, whole foods. While I appreciate the "gluten free trend" has made more options available in restaurants, they have also made the severity of the affliction seem trivial.
Being required gluten-free is a serious autoimmune disease and a LIFELONG totally-gluten free diet is currently the only treatment. This is lifelong. Your body does not 'forget' that it hated gluten... like a scorned woman, it always remembers. ;)
3. This is a lot harder than it may seem. There is NO cheating... and it's not just about avoiding gluten. Even my husband admits that he knows else no one who could stick to a regimen like this (I'm a tad Type-A). Gluten is not only in bread and pasta... it’s in EVERYTHING from cosmetics to medication.
Think about the lipgloss you put on your mouth, the coating on your vitamins, or your toothpaste. Any time something goes near my mouth I have to research EVERY INGREDIENT to see if it has gluten... or soy, or artificial preservatives, artificial sweeteners, etc. Everything from planning a dinner to traveling takes hours of extra planning. I do it because I have to but, sometimes, I don’t want to. It takes the spontaneity out of life and I really hate it.
4. No, I’m not going to take just one bite. I know you say it because you’re unaware of the severity, but yes one bite is a big deal and please don’t pressure me to eat something. I can not share your utensils or pick a bite of something off your cutting board if I have not seen every other item that has touched that surface.
5. Cross-contamination is real. I can get sick if you eat your doughnut over my counter and use my kitchen towel to wipe your doughnut fingers and then it touches my face or food. I cannot use your toaster that also toasts regular bread... even if only gluten-free bread is being toasted at the time, the crumbs from the other breads are still there. If you cut my food with a knife that has touched gluten or if I kiss my husband after he eats gluten or drinks beer, that is enough to make me basically lose 10 days to 2 weeks OF MY LIFE to being bedridden. Are you willing to give up 2 weeks OF YOUR LIFE for a bite of food??
6. Cross-contamination doesn’t only happen in kitchens or restaurants. Manufacturing plants are some of the biggest contributors to cross-contamination because they often cross-ultilize the same equipment for several products without thoroughly cleaning them between runs. Just because something appears to be gluten free, I have to make sure it wasn’t in a facility with gluten, soy, peanuts, etc. That is why I prefer to make everything from scratch instead of trusting pre-made gluten-free sauces and whatnot. Labels cannot always be trusted.
7. I’m not trying to be difficult, in fact I hate it. You know that I've always hated to ask for substitutions when ordering and this is no different. In fact, if you invite me to a restaurant, I immediately go online to look at their menu to see what I can order that will be the least hassle. But, unfortunately, when it comes to trips and whatnot, I have to put myself first... and I don't want to. I have to worry about myself and make sure I’m able to eat and not going to get sick. That’s why I ask questions, don’t just try a taste of what you ordered, and
sometimes I’ve had to cancel plans because I don’t feel well. Trust me, I'm not trying to hurt your feelings. I do want to be there but I just can't.
8. If you see me reading a label, I’m not counting calories or looking up the fat content. Honestly, I don't give a shit about any of that (does it look like I need to lose a pound?) I’m looking at every single ingredient to make sure each is safe for me. I’m not being rude, I’m Googling ingredients and nutrition info. Sometimes labels don’t use direct words like “wheat, rye, barley”. I've learned this the hard way. That’s why you’ll often see me on my phone before I eat something.
9. If I accidentally ingest gluten I don’t just get a little stomach ache!! Being gluten or soy intolerant isn't a situation where you can just take a Tums and get over it. In fact, for me, it has little to do with issues like that. In addition to every stomach issue you can imagine, my body bloats to where my fingers feel like sausages. All of my joints and muscles ache... not just under the skin, but to any touch on the surface... even clothing (I have to wrap myself in a fur blanket because my 'luxury comforter' hurts my skin).. I can’t think straight... I mean, even more than the usual walking into a room and forgetting what I was looking for. I get so incredibly tired that I can't keep my eyes open or listen to you, but can’t sleep. My hair falls out. My body breaks out into a rash. I have internal bleeding that has even risen to the surface of my skin to form 'blood freckles'. My nose bleeds. ... and it sends my emotions for a bit of aloop... You think?? These symptoms
build over 7-10 days before they beginning to subside.... just from ONE ACCIDENTAL BITE!! Imagine losing 2 weeks of your life to one bite and you will start to understand why I take this so seriously.
10. I know you feel bad for me for having to always pack my own food when we travel, but it’s become a part of my life and, really, I’m okay with it. It helps me enjoy our time together! :)
11. If you have a question, please ask!! I will not bore you with a long, drawn out health report. I will simply let you know how it is with me and appreciate that fact that you cared enough to ask rather than assume. :)
And, if you ask a questions and can't handle my direct and scientific responses, you don't really know me enough for me to worry about because my true friends know that's how I really speak. ;)
If you are currently struggling with an autoimmune disease and have people in your life that don’t seem to “get it”, you are not alone. Connect with me and my friends.
I also hope that this article sheds some light for those that don’t quite understand that autoimmune disease means your body dictates how you feel... not just what you put in your mouth.
If you can relate to this post, feel free to pass it along to your family and friends!