It was a vegetarian dumping that landed me in the emergency department one Saturday night. On our way home from a show, we grabbed some food to go. I always knew that prawns had made my throat feel ‘itchy’ and uncomfortable but never really thought anything of it. I remember telling my Mum when I was younger that I didn’t want to eat the prawns in the Chinese fried rice because they made me feel funny and she dismissed it with the Aussie, she’ll be right, just toughen up wave of the hand. Such was life then. It was the early 1990s and food allergies were not a talked about thing. I don’t blame her at all. Parents did not know to be wary of rashes and itchy throats. The thought of not sending your kid to school with a peanut butter sanga because it could send another student into anaphylactic shock was unheard of. Laughable even! I guess that is why I never really considered the fact that I had a food allergy. I just avoided prawns as much as possible so I didn’t feel that uncomfortable feeling in my throat.
What I did not know then, that I wish I did, was that exposure to your allergen can make the allergy worse. That is most likely what landed me in the emergency department. During my Uni years I lived off Thai stirfrys and tom yum soup. I had just returned from a backpacking trip through South, Central and North America, Canada, parts and Europe and Thailand where I had eaten a range of oddities and delicacies. I also took glucosamine tablets for bad joints which are laced with all kinds crustacean goodies. All this exposure made my allergy so bad that when I ate a vegetarian dumpling that must have been cooked in prawn water had some shrimp paste in it, I reacted badly. Very badly.
After a LONG wait in the hospital (it was Saturday night, which means kids taking pills laced with all kinds of crap, plus the F1 Grand Prix was on in Melbourne that weekend so every wannabe was writing themselves off trying to be the next Michael Schumacher on Melbourne’s crowded streets) where I popped more antihistamines than a person should really ever take, I was seen by a doc who booked me in for an allergy test in a few weeks. He told me to stay away from all allergens until then. What stellar advice that was! I was freaking OUT! Everything I ate gave me anxiety, I started having panic attacks which presented with restrictions of my throat, the same feeling as anaphylaxis. It was not a happy time for me, or for Anai who was amazingly supportive of my craziness.
The day came for my allergy test and a skin prick test showed that as well as being allergic to dust and some pollens (which my 20 years of hayfever already indicated towards) I was also anaphylactically allergic to shellfish and crustacea. I was shown how to use an epi pen, told to avoid all seafood as exposure to the allergen will make it worse, and was sent on my way with a script for two epi pens to carry with me at all times.
I was in and out of the allergy specialist in about 7 minutes. The doctor could not give a shit that I was scared. He didn’t take the time to explain anything to me. When I asked why I was allergic he just grunted ‘this just happens to some people’ (this is true, researchers do not know why some people develop food allergies). The doctor did even tell me what signs to look for in a reaction or what would happen to me if I ate shellfish.
My anxiety increased.
I was managing a cafe at the time and everytime I served a meal with tuna in it I had a panic attack. Actually, even meals without any seafood at all could send me into a spin. I ate a ham and cheese sandwhich one day and ended up hyperventilating in my office for over an hour. I was having a panic attack but was convinced it was a allergic reaction. I took myself to the nearby doctor clinic who took one look at me and prescribed me Xanax. Over the coming few weeks I would see a great many number of doctors, all of whom would prescribe me Xanax after talking to me for less than 3 minutes. This, apparently, is the way the modern doctor thinks. I guess they are getting all sorts of kickbacks from the pharmaceutical companies and somehow their annual all-expenses-paid vacation to Hawaii thanks to Pfizer was more important than them taking the time to see that I was a young woman, who was scared – too scared to eat – whose world was falling apart. I was coming to them for help. I was a mess. They let me down. I never filled any of those Xanax prescriptions because even in my anxiety-ridden state I knew that they were a bad route to take. I did not need a drug-dependency issue on top of everything else.
The next few months saw me quit my job, start skipping classes at Uni, test the limits of my relationship with Anai (sorry babe) and stop eating outside of the house entirely. This last one is not to be underplayed. I was a social person. I loved meals out with friends, I had been working in the hospitality industry for over 6 years and planed to open my own eatery on day. I was dating a chef (and a foodie) who loved trying new places. A huge part of my life was killed off. It was one of the most difficult things to deal with. I was also immensely sad because I knew that I would never be able to travel as freely as I had in the past. My travel life had changed. Would I even be able to travel anymore? I wanted to explore more of Asia and Central America, both of which have a large emphasis on seafood. Ultimately, at that stage, I had two things I wanted to do with my life; travel and open a cafe. It felt like they were both taken away from me by something I had no control over. Nobody could tell me why this was happening. Or more precisely, why it was happening to ME.
I want to take a minute to say that I’m not being melodramatic. This is exactly how I felt. My world was crumbling around me. I knew I was not the only one this was happening to but the fact that not one of the half a dozen doctors I had presented myself to for help, nor the allergy specialist who diagnosed the allergy, had given me any indication of where I could find more information about the allergy, any assistance, a website to connect with others or even given me a fucking pamphlet about what was happening to me, had left me feeling like I was all alone. I did not know that every 3 minutes, a food allergy reaction sends someone to the emergency department, or that more than 6.5 million adults are allergic to finned fish and shellfish (see Food Allergy Research & Education for more info). I was certainly not alone – but it would be a long time before I discovered that.
At some point, just before I became manic and irreversibly depressed, Anai somewhat forcibly suggested that I see a therapist. It was the best thing that I did for through this whole experience myself. My therapist suggested that educate myself about my allergy, that I install coping mechanisms in my daily life. He also agreed that much of my anxiety was formed because of the way I had been treated by the medical ‘professionals’ I had seen. Their lack of care, empathy and general helpfulness left me in a downward spiral that could have been nipped in the but months ago had one of them actually cared about me as a person. It was comforting to hear that from someone who I also considered to medical professional. The problem wasn’t that I was crazy. The problem was that the doctors had allowed me to feel crazy and even aided in that feeling by (continually) prescribing me Xanax! The therapist acknowledged my feelings that this whole situation just wasn’t fair. It wasn’t fair that I had to change my plans and my life to suit some stupid allergy that I didn’t do anything to deserve. He also helped me to see that, while it maybe a LONG LONG time in the future, I could one day travel with a food allergy.
I don’t tell my story to come across as brave or to brag about my fucking wonderful lifestyle (although it is fairly fabulous!). I tell it to hopefully reach out to anyone who is going through what I went through. I want to tell you that yes, it is shit. It WILL take a long time to adjust. Your plans WILL change and your day to day life WILL have to change too. It blows. It’s a horrible thing to have to think twice, three of four times before putting anything in your mouth. Eating is a necessary task. We need to do it to live. It’s not like driving or shaving, where you can just opt out and still enjoy a full and happy life.
From the time I was first diagnosed to the time I started eating in (a selected couple of cafes) again was approx 3 years. It is currently 7 years about my diagnosis and I am still very fussy about where I eat. I will not eat anywhere that has any kind of fish or looks like it COULD have EVER had any kind of fish in the menu.
For the first 4 years after my diagnosis, I steralised my hands compulsively. I carried a bottle of hand sanitiser with me everywhere. I used it after being on public transport, before I ate anything regardless of whether I was actually touching the food with my hands or not and after meetings if I had had to shake other people’s hands. I have backed off that a lot now and have not carried the sanitiser with me since we were in Chile last year. I do however wash my hands before I touch any kind of food – always.
I did not travel overseas for 6 years after my diagnosis and when I did, it was to visit family in Chile. It was a relatively safe trip because I knew that I would have access to the same kitchen nearly everyday. I could get in and bleach all the utensils (something that my parents-in-law were very kind to do for me) and know that while I was there the family would not eat any seafood in the house. I was safe. My inlaws were also great about hosting extended-family Sunday lunches (image below) in their house so that I could join in – thanks guys! (see here for more info about travelling Chile with a food allergy)
Anai and I have just spent 12 months travelling around Australia. We primarily cook our own meals as even 7 years after diagnosis I do not like to eat out often. The anxiety makes for an unpleasant experience for all involved. I am very fortunate to be dating, well engaged to (yay!) a chef who makes us great meals both at home and when we’re travelling (easy travel meals can be found here). The fact that we both enjoy cooking has also made life a lot easier for us both. When we do eat in cafes and restaurants, I have found the vegetarian and vegan places are great, as well as street food joints who only do one type of food, e.g. kebabs, burgers. The more diverse the menu is, the more risk there is of cross-contamination.
I still carry an epi pen everytime I go to the beach. The beaches here are crawling with crabs and it’s taken me time, but I can see them without freaking out, so long as I know that I have my epi pen with me. I will not touch Chinese take out menus. This one is a little crazy but I just can’t physically touch them. I hold my breath when I walk past the seafood section of the deli. These are all still true 7 years after diagnosis.
Soon I will make my first backpacking trip overseas post-food allergy diagnosis. That is nearly 8 years after I was diagnosed that I will again travel with a food allergy. My planning and pacing has changed a LOT due to the diagnosis. Fellow food allergy sufferers, I plan on writing a full article on that after my return – so that I can let you know what I should have taken with me, as well as things I took that I did not use.
I’ve come a long way but still have a big job ahead of me. I wanted to let you know this so that others going through the same don’t rush themselves and don’t punish themselves for taking a while to deal with their allergy diagnosis. You’ve got all the time in the world to hit your milestones in your own time. I also want to thank all my friends who were incredibly supportive of me when I was down. Thank you for accompanying me to doctor’s appointments, thank you for not hassling me or rushing my process. Thank you for cooking meals that I could eat once I was ready to eat out of the house. Thank you for understanding that I was in a horrible place. Thank you for still inviting me to dinners (and letting me sit and just drink my wine) when you knew that I couldn’t join in on the food. Thank you.
There is no cure for this. It will never stop being a hindrance in my daily life. Like I said, this is not meant to be an inspirational story, just a real one. I wish someone had taken the time to be real with me when I was diagnosed. If they had, maybe I would be able to make it through the whole supermarket without holding my breath.
Also: I would love to hear from other allergy-inflicted travellers, foodies and friend with tips for International travel. I will take all the advice you have!
Did you know that hospital admissions for anaphylaxis have doubled over the last decade in Australia, USA and UK. Crazy shit, right!?