The moment you are diagnosed is unforgettable. Trying to understand what is happening with your body is both frightening and comforting at the same time. On the day I was diagnosed, I promised myself Hidradenitis Suppurativa would not stop me from doing anything in my life. I was 21 years old and had lived with it secretly for 4 years in Brazil.
I decided to leave my home country because a) it was my dream to go to Europe and b) the love of my life was living in Ireland. It was a long-distance relationship for almost a year, and I thought it was about time to cut the “long-distance” part off of it.
I chose to swap the sunny days in Brazil for the rainy days in Ireland but adapting to the different climate, food, language, and culture was not my greatest concern. My biggest worry was how to deal with HS in another country. I knew very little about the Irish health system. Did it accommodate foreigners and to what extent? How widespread was the awareness about HS among Irish healthcare professionals? Would I find myself having to inform them of my condition?
How to Travel Safely with Hidradenitis Suppurativa
The first step was to look for support from local people with the same condition as me. On Facebook, I found the group “Hidradenitis Suppurativa Ireland”. I met with one of their representatives who explained how I could access the health system and recommended some dermatologists that already knew about the condition.
I was now in a position to be able to contact over 500 other people living with HS in Ireland. I knew I would not be alone, and this was important to me because I find being able to share experiences of living with this condition comforting. Recent research shows that loneliness and social isolation (as well as depression, low self-esteem and anxiety) are common among HS patients.
Before leaving Brazil, I did everything I could to avoid stress or potential trouble as I find my HS is connected to my emotional state. I underwent any surgeries I needed, received a general health check-up and stocked up on my medicines. I wasn’t sure if Irish pharmacies would stock my medicines or dispense them without a prescription. Not only did I stock up on my medicines but I made sure I had creams and bandages to keep me going to a few weeks. I believe all HS patients need to take a supply of their creams and bandages with them if they intend to travel long term. I also had to give up the free treatment available in Brazil. This was hard but the doctors assured me I could call them in an emergency. As there is no cure for HS yet, I was determined not to let endless treatments hold me back forever. Giving up free treatment is the price I had to pay to live a new adventure and to be close to the one I love. It was 100% worth it.
The typical HS patient has to take care of themself with various drugs, treatments, medical appointments and so on. Furthermore, foods (like dairy, gluten and sugar) and mental triggers, like stress, are known to cause HS activity in the skin. To help me with my diet and to find out possible new links to HS, I joined “The HS Diet Connection”, also on Facebook. It is not a weight loss support group and does not focus only on food, but all kinds of triggers that sometimes are dismissed by doctors and HS lifehacks.
How to Overcome Hidradenitis Suppurativa
The truth is: you do not completely overcome HS. Unfortunately, It will not stop impacting your life overnight. Still, HS should not be described as part of who you are or in a labelling and limiting way.
Over time, day by day, I learned how to live with it. But I just live with it, it is not me. If I decided to stay in Brazil, I know I would be wondering what life in Ireland might be like and if I made the right decision.
During my first two months in Ireland, I had some troubles with my HS. It was a challenge for me to look for a job in another language and I felt too anxious about it. Then, at the same time, I had to deal with the fear of not finding a job, with the pain of HS and the realization that I was too far away from friends and family. But I managed to deal with everything. I got a good job and now that I am more familiar with Ireland and the healthcare system, I feel much more confident. I know I will continue to face HS and deal with it when it happens again. And again. And again.
Now I am with the one I love; my health is good and my HS is stable so far. I am meeting people from all over the world, learning about a completely different culture and visiting places I never knew they existed as Ireland is full of amazing landscapes and charming towns. I am living my best life. And so can you, despite your HS.