Apr 30

Apr 30 Living with invisible conditions

“[it] is not a one-size-fits-all condition! It doesn’t have a look.”

Abbie and I have been talking on instagram for a few months now. I reached out to her when I saw how her pictures were getting more professional, and I wanted to know where she was learning food photography from (I wanted to level up as well). Since then we have both been supporting each other on our platforms. Before lockdown happened we planned to meet, get chipotle, Yorica, chat about life and all things allergy. Unfortunately, that didn’t happen. We finally had a video chat and hit it off. I really wanted to tell her story on the blog and give her a place to share what it is like living with, not one but two invisible conditions (we have that in common). Abbie’s story could help so many people understand what it is like, bringing awareness to these conditions. Abbie has allergies & is autistic.

In 2019, Abbie became a blogger. Her food is delicious and also looks beautiful (food photography is an amazing thing). I’ll let her tell you why she started the blog.

Autism awareness month is April , allergy week started on April 20th and Anaphylaxis week starts on May 4th. This is the perfect time for Abbie to share how she lives day to day with her invisible conditions, plus how she is handling it all through isolation. Bringing awareness is a brave thing and I am so glad she is sharing her story.

Abbie’s Story:

I wasn’t officially diagnosed with my nut allergy until I was 19, which is when I experienced my first anaphylactic reaction. I self-diagnosed much younger (around 6 or 7) because I always felt strange after eating something containing nuts - usually a nutty chocolate from a selection box. My mouth, throat and ears would feel tingly and itchy, then I’d normally throw up. That taught me pretty quickly to avoid nuts, although my parents just thought I didn’t like nuts.

Since I didn’t have an official diagnosis and nobody, including my family, really acknowledged my allergy, I didn’t experience any of the stigma around food allergies while I was growing up. Food allergies weren’t as common or well understood in the mid-90s as they are now. I don’t blame my parents for not getting me tested, I hadn’t experienced a life-threatening reaction, yet.

The biggest difficulty for me navigating my food allergies, while being autistic, is constantly having to self-advocate. I struggle with social interaction, especially with strangers, so eating out comes with the anxiety and sensory overload from the noise, bright lights, and the large number of people – as well as the fear of putting my trust in restaurants to not serve me something that could kill me.

Autism and food allergies are both invisible conditions, and each comes with their own set of difficulties. Autism is a lifelong neurological condition affecting how people perceive the world and interact with others. It is a spectrum condition, meaning that all autistic people share certain difficulties, but being autistic affects us in different ways (National Autistic Society).

I was diagnosed with autism spectrum disorder (ASD) in March 2017, at the age of 26, after a lifetime of feeling like I didn’t fit in anywhere. I always felt different to everyone around me, but I couldn’t explain why. I’ve been socially awkward for as long as I can remember, and people often assume I’m just shy – but the truth is I simply struggle with social communication and knowing how to respond in certain situations.

Autism is typically considered a male-dominated condition, so many females on the spectrum go through their lives undiagnosed or misdiagnosed with other mental health conditions - in my case, anxiety, depression, and even borderline personality disorder. This is because we tend to not fit the male autistic stereotype and are often better at camouflaging our traits –‘masking’ – which is why many autistic women are diagnosed much later in life. When I finally received my autism diagnosis, I was overwhelmingly relieved! It helped me understand myself in a way I hadn’t before.

The hardest part about being autistic is, nobody can see it– similar to food allergies – people can’t tell you have it just by looking at you. The majority of the time, I can pass as ‘neurotypical’. I can go about my day-to-day life without any of the stigma associated with the condition. However, because I am good at masking my autistic traits, when people do find out, they usually don’t believe me; they’ll say “but you don’t look autistic”. Autism is not a one-size-fits-all condition! It doesn’t have a look. There is a saying in the autistic community: ‘if you’ve met one person with autism, you’ve met one person with autism’. There is a huge lack of awareness and acceptance regarding autism, especially in women. Increasing awareness can mean that everyone (girls especially) can be diagnosed earlier and get the support they need.

The first couple of weeks in isolation were tough, to say the least, like I’m sure it has been for everybody. However, being autistic, I strongly rely on my daily routine to manage my anxiety, so when we went into lockdown, I really struggled adjusting to the change. I am now slowly starting to create some structure in my day, however, still trying to figure it all out.

When it comes to my allergies, being stuck at home is actually quite a relief because I’m in control of everything I eat. Having to cook every meal is a bit draining, so I cook things in batches to last me a few days.

I love not having to worry about cross-contamination, as well as not having to have the awkward conversations with servers about my allergy in restaurants etc. however, I do really miss going out for pizza! The only concern for me is running out of ‘safe’ food because people are STILL panic buying!

Pre-lockdown, I was working as a research assistant in a paediatric allergy lab in Central London – I’ve been working there since I graduated with my nutrition degree in 2018. My job mainly involves processing blood samples and preparing test kits for participants on several food allergy clinical trials. People in my office are aware of my allergies but I try not to make it an issue. Constantly having to advocate for yourself can be tiring for anybody, but for someone on the spectrum, it is especially exhausting. I find the easiest thing to do is avoid the break room and bring my lunch in a cool bag and keep it on my desk, so I know it’s completely safe. If I want a cup of tea, I make sure I bring my own cup from home and then take it home to wash it, that way I know only I’ve been in contact with it.

I live with my boyfriend, Josh, and he’s extremely understanding about my allergy. Luckily, he doesn’t particularly like nuts anyway, so we don’t keep any in the house and he tends to avoid eating nuts even when he’s not around me. When we go out to eat, he’s considerate that I only feel comfortable eating in a small number of restaurants – he doesn’t push me to try new places and he always speaks up for me when I’m feeling awkward.

Josh has temporarily moved out now due to the lockdown. He’s still going to work every day and since I have asthma, I’m at higher risk, so we decided this was the best thing to do for now – fingers crossed the government shuts down non-essential construction companies soon. I’m finding it hard to remember to eat dinner because I always used to base that around him coming home from work.

I started my blog, Sprinkled with Chocolate, in July 2019. I named it this because of my obsession with chocolate, and also because chocolate is one of THE most difficult safe products to find with a nut allergy. I wanted my blog to be a place to share recipes that are completely nut-free so that no substitutions are needed. A lot of my recipes are also egg-free and dairy-free.

My favourite thing to bake is banana bread! I absolutely despise bananas as a fruit on their own – the texture is just bleurgh, but when they’re mashed up in baked goods, something magical happens! If you take a look at my recipes, you’ll notice quite a few contain bananas – it’s a great way to add sweetness without adding too much sugar.

I’d love it if restaurants could make eating out a more comfortable experience, providing easier ways to access allergen information; not only for neurotypical (non-autistic) people with allergies, but for the neurodiverse, who may find it even more challenging to speak up.

Eating is normally a social event which puts extra pressure on an autistic person with a food allergy. My tip to somebody dealing with this, is to remember it’s not your fault and try not to blame yourself if you don’t feel like you can cope in a situation.