Why It’s So Important To Have an Allergy Support System and Understanding Family and Friends
Updated: Sep 24, 2020
There’s a reason why people say it takes a village to raise a child, it’s because it does! Having support from family and friends around you doesn’t make it all easy, but it at least makes it more manageable. Raising a child with food allergies, now that must take a city!
When you’re a new mum nothing can prepare you really for how all-consuming babies are, there is no time to recharge and be fresh for the next day, the days and nights merge into one long shift, with no day off. You are tired, haven’t slept properly in months, probably are not getting time to prepare nutritionally well-balanced meals, and instead are stocking up on caffeine and carbs. Not to mention your hormones are probably still all over the place, leaving your emotions seesawing up and down, and amplifying the lows to sometimes overwhelming levels.
It’s easy to feel judged when so many people openly give you their opinions on parenting. Breast is best or formula’s fine? Shall I feed in public? Is it OK to have a glass of wine? So many questions with no ‘right’ answer and you name it, people have an opinion. These can often differ from yours, and it’s a slippery slope to doubting your decisions and thinking that one of you must be wrong. Probably thinking that person is you.
Having a child that has food allergies is no different, people’s opinions can be judgemental and very forthcoming. They might say it’s because of something you did or didn’t do during pregnancy, because of how you fed your child, or even because you are too clean! The last thing a mum needs to hear is that somehow she caused this to happen to her baby.
Then there are the people who just don’t believe you. They think you are just being over-protective or over-sensitive because you are concerned for your child, or that you are being too strict with their food, making them a ‘picky eater’.
When you become a parent, you become part of a club that only others who have been there and have kids can understand. When you are an allergy parent, it’s the same thing, these are people who have been there, and really do understand all of the emotions. Whatever you might have going on in your life, it’s so important and therapeutic to have your feelings validated.
Allergy parents will understand that we are highly vigilant because we must be. When my daughter, Eva started to crawl, I wasn’t just worried that she’d stick her finger in an electrical socket or tumble down the stairs like any other mum, I had the added worry of “what if she eats a crumb off the floor and has a reaction?” When she started playing with other children, I wasn’t just pleased she was making friends, I just thought “what if they’ve eaten nuts? They could be in their pockets, on their hands, even in their breath…” It becomes easy to stay home, where it’s safe and you can’t be judged.
Every step forward seemed like a dangerous one, at playgroups while other mums could drink coffee and catch up, I would be following Eva around checking she’s not eating a biscuit from the floor or taken another child’s cheesy Wotsits. Sometimes she might come up in hives just because there are crumbs everywhere, and it would leave me feeling so upset that a simple playgroup was not a safe environment to be taking her too.
It’s a challenge I didn’t see coming, but I found a particularly difficult part of managing Eva’s food allergies was those around me not fully understanding. Not understanding that everything had to change and the life-changing severity of what was happening to us. It can be frustrating when those around you find it difficult to empathise, but for me, the risk of someone not understanding is life or death.
It’s a constant worry, and that worry needs the support from those around you. Of course, you probably already have a support system of partners, grandparents, old friends, and mums from your NCT class, but do they really understand the lifestyle changes you are making as a family and the practical things they need to do to keep your child safe? Do they understand your very unique situation appropriately enough to talk you round when you’re in a downward spiral of self-blame? Or help you build systems and practical advice that work for your child and family? Possibly not.
After Eva’s first anaphylactic reaction at 8 months old, we had to wait 4 long months for an allergy appointment with a specialist. I had no idea what I was meant to do, do I continue weaning? My G.P. said they had little experience in this area, and I had no idea where to turn… I just had to wait for our allergy appointment. What I desperately needed was support, instead I felt isolated and frustrated. I feel like people thought I was an over-protective and fussy mum.
After Eva had the allergy tests, they confirmed multiple severe allergies to several foods that I had witnessed her have allergic reactions to. As much as it was upsetting to hear the results, it was a relief to know it wasn’t in my head, and I wasn’t crazy.
With her allergies confirmed, I was given no guidance or advice on moving forward- other than strict avoidance of the foods she was allergic to. I wasn’t even shown how to use an EpiPen, let alone be told that I should always carry two!
Feeling lost, I followed allergy accounts on social media and joined Facebook support groups, thinking I could find support there. In reality, it just made me feel even more anxious. I would hear all types of stories of mistakes causing severe reactions causing me sleepless nights of worry. The more I read, the more I tensed up with fear, now knowing the details of the devastating domino effect that one tiny mistake could cause. I slept even less.
I did my best in raising awareness and trying to protect Eva, but after she suffered two anaphylactic shocks last year, I knew I had to turn to a bigger platform to get my message across and raise awareness. I decided to share my story.
And this is what happened- I finally had my feelings validated!
Knowing I wasn’t alone, talking to other parents who have been there, telling me it will be OK, was just so reassuring. Having people reach out who really understand what you are facing, and the emotions that go with it, is validating and empowering. Your feelings are normalised, allowing you to make confident decisions for your family and live life to the full.
Here are my 5 tips below of how you can grow and tailor your support network to your family’s exact needs.
1. Don’t be afraid to ask for help
This is hard, no one could or should do it alone. You are not super-mum (although you may try to be), we are human, and dealing with severe allergies is life-changing and challenging. The sooner you realise that other people have been there, they know the shortcuts, the best products, the little tips and tricks. They have had the slip-ups, the near misses and felt the paralysing fear of watching their child start a life-threatening reaction before their eyes. At the start, you may think you can do it alone, but realising that you NEED support is crucial.
2. Share the responsibility with your partner
Unfortunately, all too often, the burden of childcare falls to the mum, which even in normal circumstances is a lot to take on. With a severely allergic child in the equation, it can be just too much. It’s essential that both parents feel supported and included in their child’s journey and that the responsibility is shared between them as much as possible.
3. Join an online support group
As much as friends and family can try and empathise or lend an ear when you’re down, there’s really nothing like someone who’s been through similar problems, feelings, solutions and milestones. Having a like-minded community, only a click away can be an instant way to feel supported in those lonely moments of overwhelm. There are many different kinds of groups on Facebook, Instagram and Pinterest, but we’re quite partial to ours 😊 click here to join.
4. Join a local support group
Don’t enjoy hanging out online? Too many opinionated keyboard warriors getting to you? Sometimes nothing quite makes up for face-to-face, quality time spent with other parents in a similar position. There are plenty of allergy meet-ups happening in towns and cities all over the world, and you’ll be able to relax in a social setting where for once others are just as concerned about the cake ingredients as you!
5. Start a local support group
Can’t find an allergy meet-up near you? Why not start one! Ask in the large, active Facebook communities if anyone is from your local area and arrange to meet at a local allergy-friendly coffee shop. It’s a great way to meet people with an instant support system in each other for the ups, downs and in-betweens of navigating life with severe allergies.
How did you find the support system that you need? Did sharing your story with others help you along your allergy journey? Let me know in the comments!