Anaphylaxis

Taking a photo of my fluoro yellow pouch full of emergency supplies especially the Epipens that keep me safe has been a realisation for me. I rely so much on this little container to give me hope and faith!

The most obvious topic for me to discuss right now is Anaphylaxis - defined as a potentially life threatening, severe, allergic reaction that should always be treated as a medical emergency. It's a phenomenon that I know all too well and so do so many children and adults all over the world. I'm not here to give facts and figures or be an "expert”, thankfully we have plenty of clever Immunologists and Allergists in our world. There are so many theories around breastfeeding, avoidance, early exposures to allergens, the “clean” theories it’s so overwhelming to get my head around it all.

Allergies, like Aged Care aren't sexy, aren't "cool" and certainly aren't well understood by society at large. Many people like myself who have so many allergies go about their lives with Epipens on stand-by, calculating the factors to minimise risks and hoping they stay safe; often relying on others to assist in this exhausting, unrelenting process. I was recently on world wide news for my anaphylaxis to balloons and the comments of social media highlighted so many people are so ill-informed, insensitive and uneducated about allergies. Thankfully there are those of us who get it, and the messages of support and care and gratefulness for me have outweighed the hurtful feedback.

I am anaphylactic to peanuts, all tree nuts, latex including latex associated fruits such as banana, kiwi fruit, rockmelon and honey dew, mushrooms, penicillin, a contrast agent used for MRI imaging and I avoid anti inflammatories because they give me terrible asthma. Duck down in bedding has set me off, and I carry a list of these on my phone because even I can't remember them all!

Yet I'm not a "weirdo" or a “freak”, I don't want sympathy and I live a fairly "normal" life and I'm not a cliched "girl in the bubble". I will never be the person that people think I should be, I made that decision many years ago.

I want my children to know their Mum could still travel, eat out, take them on outings and be safe because she was careful and vigilant and sensible. I don't expect others to remove my allergens, I work around them. I hope for safety and understanding and appreciation of allergies but most of all I wish for sensitivity. I don't expect people to understand what I do or how I live because why would they...? All I ask for is respect and understanding and know that I am resilient because that is my life. So many people live with much more terrifying and crippling disabilities, allergies are not visible and this is why it’s so much harder to have a voice.

Will Smith famously made allergies funny in the 2005 Romantic Comedy "Hitch" but they honestly are no laughing matter and the feeling of “impending doom”, that things are about to go horribly bad and that you simply cannot get air to breathe is a serious and painful reality that is often avoidable and unnecessary. For me the distress, worry and upset that an allergic reaction causes my friends, family and especially my young children is what hurts the most. I am very sorry to put the people I love the most through my struggles including the acute emergency situations which are always unplanned. I feel glad sometimes my Mum isn’t here to see the horrifying impact of anaphylaxis but I also miss her comforting words and her belief in me.

I certainly don't feel the countless needles that I require, the uncomfortable hospital beds or the palpitations and mind splitting headaches from the adrenaline to get me over the anaphylaxis. It's a frightening, isolating and difficult process to beat anaphylaxis but the life saving measure of Epipens gives sufferers hope, independence and above all safety. We should have more Epipens available in this world for emergency moments that just happen sometimes and so much more could be and should be done to make our world safer for allergy sufferers. Allergy is an invisible obstacle that needs a cooperative effort to hurtle over and sometimes the stigma and negativity faced by allergic individuals is too cruel. Very few allergic individuals have blame as a motive for speaking up and raising awareness, I certainly don't need apologies when things go wrong, but I also don't apologise for having this disability. I don't mind being excluded if it saves my life and I don't want people to feel that they are restricted because of me. Warnings need to be practical and no one wants legal disclaimers.

My allergy isn't anyone's problem but my own, and I do own my existence but I do that with strength, passion and sense. I am practical, I am calm, I am capable and I am proud to have survived almost 30 anaphylactic episodes - all a terrible mistake - often not my error but an unusual set of events that played out completely unintentionally. Each time I learn a little more about my spirit and the essence of my resilience.

I have nothing but praise for the paramedics, emergency staff and intensive care teams that have cared for me for many years. It is noticeable that the training and knowledge of emergency personnel has improved so much over the years as we live in a society where allergies are prevalent and serious. Being medically trained, I know that treating ‘your own’ is not easy, and I expect that the intravenous drips won’t go in easily as I have veins that are scarred from the multiple shots of adrenaline.

Unfortunately some don't get the opportunity to debrief and I dedicate my ability to raise awareness to those that have had their unfortunate, heart breaking stories played out in Coroner's courts all over the world. I honestly feel for their loved ones left behind and I hope we can work to minimise deaths from allergic disease.

Once I rang a podiatrist telling the young male secretary I had a life threatening allergy to latex and enquiring which type of gloves they used in the clinic to which he responded with.. "is this a prank from a radio station?" In many Asian restaurants I was all too often completely misunderstood. When I stated my nut allergy a waitress once suggested I try the cashew nut curry after which I left and went home to Vegemite on toast. I don't eat Asian food unless I have cooked it from scratch and I only travel to first world countries where there is good medical care. Twice I have had top restaurants cancel within hours of my booking because they couldn't assure my safety. I don't travel anywhere remote and I have a good relationship with my local hospital. Worst of all I cannot vote safely in my home town as all polling booths are covered in balloons.

Many of our friends choose not to have latex balloons or use foil ones so I can attend. A small minority of people exclude me because balloons are important for their celebration and foil ones are expensive which I understand and am not offended. Where practical I check before every event I attend about the presence of balloons, and it's important to note I can cope with a few in a large air space, the issue is I don't know the threshold so if I know that the balloons are present I will avoid! So far most shops have been fine for me as long as the balloons aren't excessive. I do mostly shop online though and I love my home and also like to cook so life is limited but not crippling in anyway at all. I have been known to go to new restaurants in a group and decide to "pretend to eat", moving food on my plate and just having a water from a fresh bottle (no glass please). Unfortunately our society likes to socialise over a meal, that's tricky for me! I used to be safe meeting friends for "a coffee" but nut milks have even made this treacherous. I never eat anything I don't feel comfortable about and I insist on eating from all the packages that say "traces of nuts" because I used to eat them safely before they had that disclaimer. I avoid any packets that say "traces of peanut". There are so many people worse off than my allergic self and to those I take my hat off every day. I say no to desserts and I avoid most chocolate, the alternative dessert fruits can also be dangerous and often I have an emergency stash of something to eat in my hand bag in case I just get stuck somewhere and I'm hungry!

It's ludicrous of me to say that my allergies are a gift but honestly I cannot get through the dark days without remembering how lucky I am to have a team of loving family and friends around me. Most of all though, I think the best opportunity from suffering with allergies is that I am truly grateful for all the tiny details of my life - family, blue sky, a good meal, a laugh. My allergies make me realise the beauty and generosity of human spirit. I feel lucky to be alive so many times over and so thankful to have the simple things to cherish in life. I never ever need to be reminded about how grateful I am and for this I feel truly blessed.

Dr Pooja Newman, MBBS