Battling urticaria on a daily basis is like going to war each day and not knowing when the enemy is going to strike. You might be mildly attacked multiple times, or you may be taken down completely; either way you wave your white flag, but there is no surrender. Urticaria just keeps coming back, no matter what you do.
Urticaria comes in many forms, and there is a fair bit of information out there so I won’t bore you with all the scientific details. If you’d like some information you can visit the NHS’s website for a very brief overview.
In medical terms Urticaria is histamine and other chemicals releasing under the skin’s surface, causing the tissues to swell; as a result you’ll see hives. When you put it like that, it’s all very matter of fact. Living with Urticaria is a little more complicated than that.
During a recent appointment, my Immunologist (the man who has been trying to tackle my Urticaria for the past few years,) presented me with some challenging questions. In order to answer them I had to pause and really take stock of how Urticaria effects me. I don’t normally dwell on these things, so when I was questioned, it really hit me hard. Urticaria sucks. Frankly, after that appointment I felt terribly distressed and it took me days to shake that off. So in response to that appointment I felt compelled to write a letter to my Immunologist, in order to ensure that I never have to go through that conversation again.
After a few days I realised I didn’t need to send this letter to him at all; he already knew what I was going through. This was a letter for me. I could share this with others; like family and friends, or even on here, so that if one day someone stumbled across this whilst searching for answers, then maybe they wouldn’t feel so alone.
Dear Dr H.
Further to my appointment with you, I feel the need to take the time to explain Urticaria and the effects it has on my life. We have spoken about this over the years, and mostly my answers remain the same. Urticaria is challenging. However I choose not to live life dwelling on the pain and suffering that this condition causes. Instead I choose to adapt to living with this condition. I find new ways of enjoying life, new hobbies, and with all this effort I’ve had such an amazing, rewarding and happy year. I’m truly proud of myself and how far I have come.
I choose not to dwell on the difficulties I face, in fear of becoming overwhelmed by sadness.
When I have appointments with you, you ask me questions which force me to confront the reality of life with Urticaria. When I talk about it, I begin to realise the true bleakness of my existence. Urticaria prevents me from carrying out the simplest of tasks. I am no longer carefree and able to do whatever I want. I am limited, trapped by this condition.
Condition; is it a condition, a symptom, a disease? I have no idea. I don’t understand it. All I know is that it has a disabling effect on me. Only when writing about it and talking about it, I realise just how bad it is. Discussing it, means acknowledging it, and acknowledging it means that I accept it.
I don’t want to think about Urticaria, I don’t want to reflect on how painful it is, but for the sake of understanding I’ll try to explain.
Imagine your skin is burning like fire. The pain and intensity is unbearable. It can be so bad that you are physically whimpering and visibly distressed – that’s not something I’d ever want to show to anybody (sometimes I don’t have a choice.) Imagine wanting to take a metal scraper and chisel off your skin. You’d do anything to stop it from hurting. Itching does nothing but offer momentary relief. Instead I clench my fists like vices and try to bare through it, just until it eases off a little. I’m left with the visible bumps over my body, and the occasional swollen face. Sometimes I wear my bumps for 30 minutes, sometimes several hours, rarely more than a day. The added bonus of swollen eyes is just something else to contend with.
If the physical experience isn’t bad enough, then perhaps its unexpected arrival is something to consider. Allow me to guide you through daily life.
Imagine getting out of a cool shower (you can’t have hot showers as you’ll definitely get hives.) Once you’re out of the shower you must get dressed quickly, otherwise your temperature will drop and you’ll get hives, but be careful because you can’t be too quick either.
Imagine being in your gym clothes by 6.30am, walking into the kitchen to grab your keys, and suddenly the coolness of the kitchen shocks your skin, and all you feel is your skin being stabbed by a thousand knives. Breathing becomes difficult and you’re overcome by the agony. You crawl up the stairs with whatever remaining energy you have and you wrap yourself up in bed. By this point you’ve got 3 extra layers of clothing on, and you’re still not feeling well. Although the itching has ceased, your body is still struggling. There’s no chance of going to the gym today. In a couple of hours, you must get up and get to work, and carry on with the day.
At work, there will be plenty of opportunities for a reaction to occur, but sometimes just walking into the building passed the mature trees is enough to set you off.
Try walking around a house taking photographs; an easy, mindless task is halted by a reaction. Just walking from room to room has set you off. How about standing outside in the cold waiting for people to turn up for a viewing? By the time they arrive your ears are burning, as well as your scalp and chin. When you don’t think it can get any worse, you walk into a warm house, and that sudden change in temperature results in complete agony as your skin burns like hell fire. You have to grin and bare it. You’re discretely touching your face, trying to feel how many wheals you have and imagine just how bad it looks, because you can’t whip out a mirror while you’re with potential clients. You wait until they’re gone and then you itch your skin like crazy, although it doesn’t really help. You get out your phone to take a photo, because you know the doctors will want to see that.
You have to take photos regularly, to prove to them that it’s real. It’s not invisible like chest pain or joint pain, it’s something visible so it’s most definitely real. Still, you have to prove it because no one really believes you, they don’t believe how bad it can be.
The day is not over so there’s plenty more opportunities for reactions to occur, like coming home and running around after your one year old niece. You run until you start to sting and then you have to press your skin against something cold. You can’t play to your hearts content, you can only play for a few minutes at most. You can’t even stand on the spot in the garden for five minutes to kick a ball, without your skin burning up. The thing with urticaria is although it can be unsightly, it’s actually the intensity of itchiness that makes it feel worse.
Daily life is a constant battle. It’s just depressing when it shows up at even the happiest of moments. Imagine you’re at your cousins wedding and you’re having the best time dancing with family. Your skin is feeling uncomfortable but you’re too happy so you keep going. Soon your eyes start to swell, and you bare with it because you want to enjoy this moment. Then they start to water and it looks like your crying, so then you have to sneak off. How do you tell a room full of people, “Oh it’s just urticaria…” when not everybody knows or even understands.
Talking of understanding, I recall those times in the early years when I would go out for a run. One time my Urticaria got so bad, I couldn’t breathe, I collapsed on a bench in the park and an ambulance was called. I explained I had Urticaria, and even the paramedics didn’t know what it was.
What is it like to live with Urticaria? It’s lonely, challenging, painful, disruptive, complicated… but I still have hope. I have to keep positive because otherwise all I’m left with is grief for my former self. I’ve lost the ability to do what I want, when I want, how I want. Instead I am limited by boundaries that even I struggle to judge. Nothing is clear-cut. I can’t tell how far I can push my body until it reacts. When I say pushing, I don’t mean pushing beyond my original limits, I mean the limits that have been placed on me now. It’s the difference from being limited by my own physical ability and fitness, to being limited by something that I can’t control or understand.
As I write this I am flooded by sadness, knowing that I’m not currently free. I am limited. I am trapped and it’s upsetting. Facing up to my new reality, is having to accept that I’m not what I was and I’m not how I want to be.
I want to live freely, free from Urticaria, because living with it is challenging. I have worked hard to learn to live alongside it, but the only way I do this is by believing that one day I’ll be cured of it.
My chance of a cure lies with you and your team. You have all worked so hard over the years. You’ve taken on this challenge and kept trying to find a solution. I can’t thank you all enough for how much you have done for me. Just knowing that you’re trying is enough to keep me going. I feel safe knowing that there are options, that I still have a chance of getting better. You and your team give me that hope.