- Cold Urticaria
- Interviews
Rachel's interview
How did all start?
I started notcing that my ears were burning in when I was in a cold wind and that the bottom of my feet itched when walking on tiles and my hands were swelling up when they were exposed to cold environments like the fridge or freezer. I have been unable to identify a trigger or anything that started things off.
Do you already have a diagnosis? How long did it take you to get it?
Yes. It took me nearly a year of requests to see an allergist, my GP found it unlikely that I had cold urticaria because it was rare, despite my own research which i was fairly confident this was the problem, however by chance I got caught in the rain on my way in to see her on one occasion about another matter and walked into the appointment having a reaction over my arms. She then referred me immediately to an allergist.
What has been the most useful thing for you so far?
Antihistamine loading before I know I'm going into a situation where it is likely that I will react.
What have been your biggest difficulties?
Just day to day life. It can be debilitating and miserable when your skin is reacting simply to whatever is going on in the atmosphere. And big reactions can leave me feeling weak and exhausted for many hours afterward.
How has your social and family environment reacted? Have your social or family relationships changed?
My family believes me and supports me and managing the condition. I find that others are disbelieving until they see it for themselves. Even though many won't directly say they don't believe me, there is a general vibe of "so that's your excuse.. ok then".
What things have you stopped doing?
Exercising in the cold or even in the heat as the sweat cooling from my skin triggers a reaction. Participating in lots of activities where I might get wet. Swimming I really think twice about, or going to the beach.
What do you think about the future?
I'm not sure. I'd like to see more research done that provides some answers.
So far, which years have been the best years in your life? What have you done during them?
I'm thinking my mid 20's were the best. I met my husband, i had a wonderful group of friends, I was happy and in stable employment and I was finally comfortable with myself.
What would you like to do if you didn’t have your condition?
Go swimming without a care. Enjoy the water with my children and go to the snow without being worried that I'm going to have a big reaction that nobody around me understands or necessarily believes.
If you had to describe your life in a sentence, what would it be?
Family oriented and busy with life work and contributing to our community.
Finally, what advice would you give to a person in a similar situation?
Work out what you need to do to manage the symptoms in a way that means you can still enjoy your life, don't back down on your boundaries when people are disbelieving of you, seek other opinions and advocate for yourself, this is your life, don't let others dictate what you can and can't do with it.
