Four years ago I received an allergy diagnosis that was both amazing (It explains everything!) and devastating (I have to give up how much?!) My journey since then has been full of ups...and many, many downs. Honestly, I'm tired of the roller coaster. It's time to get off and get it together.
Because my success depends largely on the type of support I get from you, I decided to write up a little guide as to how best to help me. I'll state up front that this list is not intended to shame, accuse, upset or embarrass anyone for past issues and/or missteps. Rather, I am putting this out there so that we can all move forward together. Hopefully, this makes it a little bit easier for all of us. (This list is purely based upon my own experiences and preferences. Other friends you might have with similar issues may or may not feel the same way.)
1. Educate yourself. If you are someone who loves me, please take the time to learn. I'm happy to point you in the direction of some amazing information. It makes life a whole lot easier if I'm not constantly having to explain or justify the way I have to eat and live. Believe it or not, this is a topic I'm thoroughly tired of discussing. Plus, when you take the time to learn about my situation...to familiarize yourself with what I can and can't eat...you show me just how much you care.
2. Likewise, don't question my doctors. I have a fantastic team (allergist, OBGYN and Family Practitioner), and they all support each other. Telling me that you think they don't know what they are doing is hurtful and offensive. Rest assured, these doctors are all up on current medical research and know what they are doing. They are NOT quacks, nor are they stuck using 20-30 year old information which may or may not be accurate.
3. If I haven't told you everything, please don't take it personally. I really don't need the whole world to know every detail of every single allergy related illness I've had since I was 12.
4. Please don't try to one-up me in the illness or food-restriction department. This is not a competition. Saying things like "Well at least you can cheat once in a while" or "You think that's bad, you should know about my ...." really don't help
5. Along with that, recognize that I'm human. Those cheats you are referring to? Yes, they were my choices...and as much as I enjoyed that food I also chose to remain sick by eating it. I screw up, I make mistakes. I apologize for any confusion that I've created in the past.
6. I also ask that you pease stop tempting me with foods I can't eat. Yes, a little bit does hurt. Yes, there are consequences to every single food on the prohibition list. Because I'm a human, and because this is so difficult for me, I may not be able to resist if you ask me to cheat.
7. Playing food police is not helpful. I'm a big girl, I make the choices - good and bad. Leave it up to me.
8. A good rule to remember is that if it's around, I'll eat it. I can keep it out of my home...but I may need to remove myself from other settings in order to avoid the temptation.
9. If you will be my host, please ask me in advance what I can and cannot eat...and then help me plan accordingly. I do NOT expect you to cater to all of my needs, but it sure helps make things easier if I have a plan in place before I show up on your doorstep.
10. Along with that, don't be offended if I pack along my own food. This is not a reflection on your hospitality...it is me doing what I need to do to take care of myself.
11. Making comments about what is on my plate - be it about the actual foods or about the quantity - is deeply hurtful. I get it. The way I eat may be very different from your understanding of a healthy diet. That doesn't mean I'm wrong, nor should it be threatening to your way of doing things. So if you can't say something nice, keep it zipped.
12. Recognize that mainstream nutritional guidelines are not a one-size-fits-all set of rules. Along with that, please recognize that there's a LOT of misinformation out there, and that you may hear a lot of things that contrast with what I'm doing. It's ok to ask questions, it's not ok to use that information as a bludgeon to try to prove why I'm wrong.
13. If you are hosting a social event and I decide not to come, please understand it's not about you. I will, in fact, really miss my friends. It's just truly that difficult to be around people who are enjoying things that I can no longer enjoy. I hope it's not always like this. I hope someday I can come and enjoy my carrot sticks and water while you are eating cupcakes and drinking wine and just be happy to be with everyone. I'm not there yet. If I never get there, well then..I still love you.
14. As a side note to that last one...it is particularly difficult for me to go to parties where people are drinking. I was never much of a drinker to begin with, but I am an introvert who kind of needed that little bit of a social lubrication. Alcohol is a particular danger because of the yeast allergy. I just can't risk being around it.
15. If I do come to your social event, please don't bring up my allergies. I'd especially like you to not point it out to the entire group while we are eating. Believe it or not, I'm uncomfortable with that type of attention. It makes me feel like I've sprouted an extra few heads.
16. One final note on social events - it would be really, really fantastic if we could figure out together ways to celebrate that don't center around food. (birthdays, holidays, special events, etc.) I tend to fall on my face on those events because I still haven't figured out how to disassociate them with food. Yep, it's bucking a strong, strong cultural tradition. It needs to change, though, if I'm to be able to keep celebrating with you.
17. Saying things like "I would just die if I had to give up X" or "I don't know how you do it, I could never!" is not helpful. You know what, I am still grieving about having to give up X, Y and Z..and half the time I can't do it either. When you say things like that you really put weird expectations/moral judgements on me that are pretty darn uncomfortable.
18. Do not be helpful by trying to brainstorm alternative foods. Dude. There are none. This is a damn restrictive diet, and there are just some things I'll never be able to have again. I get that you are trying to be helpful, but this particular exercise has more to do with your own frustration on my behalf and disbelief than it does with reality.
19. Please recognize that I'm thoroughly sick of the entire thing too. I'd rather talk about sports than talk about me and my food allergies....and given how much I enjoy sports, that's saying something.
I'm more than my health status or my dietary restrictions. If you are tired of hearing about it, imagine how I feel.
20. Unless you have the exact same medical history, there is no way you can possibly understand. I appreciate compassion, I appreciate kindness, and I appreciate empathy. I don't appreciate empty attempts at commiserating. This is damn hard for me. A simple I'm sorry - with a shoulder to lean on - goes a really, really long way.
21. This last one is not so much to do with me as with my kids. Seriously. They both have food allergies/intolerances as well. They are also kids, and making the right choices is even more difficult for them than it is for me. If you set them up for failure by offering them stuff that makes them sick...you are also setting ME up for failure. Every time they go off course it is that much more difficult to get them back on track at home. Their rules are slightly different than mine are, and we do give them a bit more freedom. BUT, please don't push it.
I know that this list may come across as a bit harsh. I honestly don't mean it to be.
The truth is that in four years I've not ever managed to stay on a clean allergy diet for more than a few months at a time, and in the last year or so it's become so difficult that I've not usually managed more than a week or two. Most of the time, this is completely on my own shoulders. Some of the time, it's been due to circumstances beyond my control. Frequently, the situation has been made considerably more difficult by well-meaning friends and family because I've not stepped up to actively tell you all what I really need.
I'm tired. I'm really tired of being sick all of the time....and something needs to change.
To that end, I'm committing myself to following my allergy and auto-immune protocol to the letter for as long as it takes, knowing full well that I may never be able to relax the restrictions. It takes a long time to heal the damage done by a lifetime of chronic illness and allergens. This summer I'll be consulting with my doctors so that we can make sure there aren't any other contributing factors. I'm also working to add in exercise, proper rest and the spiritual practices that I need. I have hope that this summer I can finally, finally get it all pulled together.
Please be patient with me as I navigate this difficult path.