12 Things No One Told Me About Living With Urticarial Vasculitis

I’ve always had allergies. I’m allergic to latex, a popular antihistamine and a medication used for epilepsy. I’m also asthmatic and I have been since I was 11. (I’m 30 now.) However, up until 2013 I’d not really been bothered by them.

In April 2013, I had my first batch of serious asthma attacks and spent several months on high-dose steroids. I gained weight and I lost the definition in my face. I also lost the life that I once took for granted. I was in my second year at university and was totally absorbed in it. I loved that life! I had all the energy in the world and I had a metabolism that was enviable. Fast forward to today, and life couldn’t be anymore different.

Last Friday I was diagnosed with urticarial vasculitis, an autoimmune disorder of the immune system where it attacks itself. Daily, I struggle and at times, life isn’t worth living. Here, I will outline the 12 most interesting things that no one told me about a life with urticarial vasculitis.

1. The rash is a daily struggle.

Every single night, I go to sleep making bets with myself on how many of and how big the wheals will be. I also try and think of how much cream I will be putting on in the morning.

2. You will have to rethink your wardrobe.

This is an unexpected one and one that is probably the most expensive. Sexy bra and knickers? Tight T-Shirt? Ballet pumps? Forget them, throw them away and bring in the loose fitting cotton shirts, seamless socks and sports bras that are a size too big. This is because of delayed pressure urticaria. Any sort of pressure on the skin will produce red, raised and downright angry hives that will leave thou hurting all day and wanting to rip my skin off.

3. There is no cure.

And no one knows how long it lasts. Some are lucky and it burns itself out. Others, like myself, it only gets worse. There are ways to lessen the pain, but these are only temporary.

4. There is a real danger of anaphylactic reactions.

These are life-threatening allergic reactions that require emergency medical help. I carry six EpiPens at all times and I need to go to hospital via ambulance every time I use one.

5. You get used to a burning face.

My face burns – all the frigging time! It’s like looking into a fireplace when the fire is roaring and crackling. Nothing soothes it, but you do get used to it.

6. It can seriously be isolating.

The number of times I’ve been out in public with my rash on show and have people avoid me for fear of catching something is astounding. Unless you have this condition or know someone who has it, it’s terribly isolating and can lead you to feel lonely and depressed.

7. Itchy becomes your most used word.

I can honestly say that this word is in the center of the autocorrect word prediction on my iPhone! “I’m itchy” is my most used phrase!

8. It feels like the embodiment of hell.

I was once asked to describe how it feels to a doctor. My answer was, “I am running around in a patch of stinging nettles, which are supercharged, while being stung by a massive swarm of hornets – and this patch of stinging nettles is in a blazing building.” There is no escape, no ignoring it and you simply cannot think of anything else.

9. Kim Kardashian has nothing on these lips!

One of the features of this condition is angeodema, or, “swelling of the blood vessels.” This makes extremities like ears, toes, fingers and my lips swell up. One day a girl asked me if I’d had lip fillers!

10. You get to know your doctors well.

I’ve lost count of the number of hospital appointments I’ve had for this condition. My immunologist is possibly the sweetest man ever to grace medicine. He makes time for me and never makes me feel like I have to rush what I’m saying. His secretary is a gem too.

11. You learn that immunosuppressant drugs are not just for transplant patients.

On my journey so far I’ve had many trials of different medications. This is from standard over the counter antihistamines to today. I’m now taking super powerful immunosuppressant drugs that are usually reserved for people that have had organ transplants to stop them rejecting the organs they’ve received. These drugs destroy the immune system completely and catching infections is a serious deal. A simple common cold can turn to deadly and fatal pneumonia within a few hours and any fevers need to be seen to immediately.

12. You learn to appreciate hive free days!

Although this is a chronic and life changing disorder, I do get days where I wake up completely free from wheals, and these days I cherish! I wear my low cut tops, skirts and I make myself up! There are sunny days amongst the storms.

I hope I’ve summed up what it feels like to live with urticarial vasculitis and how it affects my life.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or reach the Crisis Text Line by texting “START” to 741-741.

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