A Life-Changing Diagnosis

When I think of telling my ‘allergy story’ my mind goes back to sitting in the dermatologist’s office, getting the results of patch testing. I’d been tested for the 20 ‘most common’ substances previously and all had come back fine. This was a further list of 85 recognised potential allergens. The week had been one of the hardest of my life – 85 patches on my back with tiny amounts of the allergens in them which meant sleepless nights, rubbing my back up and down the wall, hitting myself trying to stop the itch and climbing the walls with frustration. I’d been there a couple of days before when they took them off and there were a number of red marks on my back. I was here for my final diagnosis.

The consultant came in with a number of sheets of paper. “Right, well this will take a while”, she said.

Over the next 50 minutes she proceeded to tell me I was allergic to fragrance, cobalt, nickel, quaternium 15, caine mix, PPD (paraphenylenediamine) and formaldehyde.

They were just names but as she started to explain what each one was and where it could be found I began to realise I was receiving a life-changing diagnosis. “PPD is found in black – including black clothing so you might find that affects your skin”. I looked down. I was wearing a new black coat, black trousers - my workwear in other words. “Nickel can be on things like buckles on your handbag” she said, pointing to my new bag. “Fragrance can affect you airborne as well”. Caine mix is found in medicines, and formaldehyde is a preservative found in loads of household and toiletry products.

She gave me a sheet of paper on each allergen outlining what it could be found in (answer: pretty much everything) and concluded by saying “you might develop other allergies in the future”. That was it and “good luck”.

I came out of the hospital feeling numb. On one hand, I had some answers as to what had caused me such severe problems recently but on the other, it was a shock. I went back to work and tried to joke with colleagues that I was ‘allergic to everything’ but inside I felt deep despair.

I was already allergic to peanuts, dogs, had hayfever and had a background of eczema.

In the run up to that most recent testing I had been having bad facial swelling problems.

In my late 20s, I had started getting facial eczema. It would be like a big red mask, flaming hot, and covering my face, neck and also my hands. I never found a direct link but noticed over time through keeping food and symptom diaries that there was some link between milk and this happening (it wasn’t always immediate). I started avoiding dairy and there was an 80% improvement in my condition (eczema also has other triggers like stress, being too hot or too cold, when your immune system’s down etc), so it’s an ongoing management condition and there was never going to be one answer.

When I was 30, I got my eyelashes dyed the day before my 30th birthday. Ironically, I had thought this would save me needing to use mascara! It felt a little bit strange at the time and the next day I woke up with my eyes and face completely swollen. I looked like an alien. That night, I had a 30th party with 20 people coming. I managed to do my best with make-up to cover it and put a brave face on but it was one of the hardest things I have had to do.

Over the following year or two, I had another 3-4 episodes of eye/face swelling. I’d have to take a week off work each time as I just couldn’t see properly/felt awful. It is always about 6-8 hours after contact that it appears. I’ll start to feel hot and ‘tight’ around my eyes and then the swelling in the deep layers of the skin starts. Each episode takes a full week to die down. The swelling is bad, worsens over days 2-3, then it starts to move down my face, so I’ll have really fat cheeks with fluid and then eventually the heat will die away but it will leave my skin really dry and flaky.

It was a relief to have some answers from the testing but what came after that was an even bigger challenge. Creating a life without these things.

I pretty much had to go through my entire life and check it - every product I used on myself or in the home, everything I did, read every single label and throw out things that had these things in them. Reduce my black clothing and embrace more colour. Things like make-up have been so hard to find (I’ve finally found a brand, Jane Iredale, that I can use!).

I ‘de-nickeled’ my home, painting door handles with clear varnish, jewellery, buttons, etc. I bought a nickel testing kit and tested everything I use. I did the same at my parents’ house. I got a bandana to use to open doors in public or at work (an Allergista tip!). I created a little pocket book with everything I can’t use written in it alphabetically (these allergens also have a multitude of different names). It means if I’m reading a label in a shop I can quickly flick through and cross-check (although I’m getting to learn some of them now). It’s a struggle but once you find products you can use you just use them and don’t need to think about it anymore so there’s less label-reading involved.

My challenge is that there are so many things I’m allergic to, it’s virtually impossible to avoid everything all of the time, so in some ways it is inevitable I will get a reaction from time to time, especially on my hands. Even things like touching the door handles in the office (nickel), printer ink, and not to mention the atmosphere in the office and the hot/cold. I get very bad reactions in a friend’s house to scented candles. My employers have been very supportive and I’m able to work from home sometimes ( if my hands are really bad) so that I can sit with my cotton gloves on and protect them till they recover. Also if I’m struggling to sleep for the pain it means I can get a little bit of extra rest.

It’s worth mentioning here the anxiety that comes with an allergy. Worrying that everything you do could lead to a reaction, worrying what that reaction could be, worrying what that reaction could stop you doing, worrying that you can’t plan anything in case you react. It’s hard to stay positive and not let your mood or your life be determined by whether you’re having a ‘good’ or ‘bad’ allergy day. However, it’s really true that knowledge is power and with the knowledge of what causes it, you can put plans in place as best you can to minimise the risk and cope with it if it does happen.

Allergies grow and change and evolve. They are different. Just now, it’s my hands and wrists. They glow bright and red and seemingly without cause then start to blister and itch. I’ve also had some pretty severe reactions to tablet antihistamines over the last year – most worryingly affecting my heart. This is causing me real concern as I can now only use one - liquid chlorphenamine maleate - which actually knocks me out when I take it. No more tablets for me. Nasal sprays (Prevalin allergy is excellent) and other softer measures until I get my next round of drug testing which I’m waiting to be called for. The ‘allergic march’ is on its way for me.

I’m trying my best to see the good side of having allergies and eczema. I like to think it’s the ‘chink in my armour’ and when it flares, it’s my warning sign that I’m becoming too stressed and to slow down and retain perspective. My condition has made me much more compassionate. I see people in the street with eczema and understand their pain. I have been judged, laughed at, viewed with disgust – I know how that feels and I’m a kinder human as a result of it. I’m also highly conscious of what I eat, put in my body, put on my skin and that can’t be a bad thing.

I’ve read studies that suggest people with allergies are actually super-healthy – our immune systems are so strong they fight off seemingly small things. I like that interpretation. It has taken me a very long time but I feel strong, underneath my sometimes-weak skin.

I have been scared to share my story for a long time, ashamed of it, I suppose, on some level feeling that it must have been something I did to end up with these allergies. But I want other people to know that there is hope. You can learn to live around things, you can get a new perspective on life. Something like this shows you who cares about you, makes you realise what’s important and gives you a deep compassion for fellow humans.

And let’s not forget the (black – haha) humour in all this. I told a colleague in work about my black allergy and now whenever he sees me wearing a pair of black trousers he jokes “I know you’re living on the edge today” – he thinks I’m ‘hardcore’ and brave. It’s a nice feeling.

I used to think I was weak but now I feel strong. If I can do this, I can do anything. And so can you. Let’s help, and hope with, one another.
— Anonymous

Your story just warmed my heart! I applaud your positivity. It can be a pretty difficult thing to keep up when we deal with obstacle after obstacle and are in pain throughout it. I love finding other allergy/eczema sisters out there because it can feel pretty lonely out there in the "real world". I nodded my head through your entire story because identified with it over and over! You are SO right about the anxiety... I've dealt with a lot of that because of my health issues. Some days, it feels a lot easier to just stay at home.

I'm glad you found out about the bandanna trick. It's a game changer :-) The little tips and tricks we share with each other are invaluable, aren't they?! I thank my lucky stars for the internet.

Keep on keepin' your head up :-) You've got this! You seem like a very strong person and I think that's a huge benefit health-wise. Cheers to taking it one day at a time!