A feature story by CEO and Founder of Suzanne Moloney on her trip of a lifetime and how to manage Hidradenitis Suppurativa.
I first noticed my HS when I was 12 years old and lived with it secretly until I was 17. At this point, it had gotten too bad to keep it a secret anymore. I needed to go to the doctor. From there, I went through years of uncertainty and trying different treatments to quell my symptoms. I was put on antibiotic after antibiotic and passed from doctor to doctor, with a few emergency surgeries in-between.
Eventually, 10 years later when I was 22 years old, after lots of tests, scans and scopes, I got the official diagnosis that I had Hidradenitis Suppurativa.
When you’ve gone through 10 years of suffering and not fully understanding why you hope that when you do finally get the right diagnosis that this will make all the difference. If they know exactly what I have and there is a name for it then surely there is a cure or treatment that will make it better, right?
Unfortunately, things didn’t get better right away. Once I was diagnosed, I underwent a radical surgery that left me bedbound with large open wounds for 8 weeks.
Eight weeks of doing nothing would drive anyone crazy. I’ve always been a very motivated person with lots of energy so not being able to go out or look after myself properly or work was horrible for me.
By the end of the 8 weeks, I had enough of being a bird in a cage, I needed a change – HS or no HS, it was not going to hold me back.
My sister and I set off to travel to Australia and New Zealand for 2 months. Now that I knew what HS was, I thought I knew how to keep it under control, and I had my surgery so I thought things would be somewhat smooth sailing. I say somewhat because you never know with HS when you are going to have a flare-up or how bad it is going to be.
We set off anyway filled with hopes and dreams and we really did have a trip of a lifetime. Australia and New Zealand are such beautiful places.
We travelled from Darwin in the Northern Territory, through the Red Centre where we visited The Olgas, Kings Canyon and Uluru. From there we headed to the gold coast, taking in Cape Tribulation and Frazer Island along the way. We flew to New Zealand where we travelled both the North and South Island, taking in all the gorgeous scenery and trying our hand at some adventure sports before setting off to Sydney for the final leg of our journey.
How to manage Hidradenitis Suppurativa when Travelling
Although I only remember my trip with fond memories it wasn’t without its challenges. After a few weeks, the flare-ups started and didn’t stop. I knew travelling to a new country, climate and being very active would trigger a flare-up so I was prepared with my bandages and antibiotics but unfortunately, they didn’t last long. I quickly ran through my antibiotics and even my emergency stash. So, I sought treatment.
Once again, I found myself explaining to doctors what my condition was and once again I was treated with the very painful steroid injections. Each new city we visited I found myself seeking a doctor and educating them on HS.
A lot of times this caused us to be delayed. Finding doctors was hard and getting a decent treatment was harder. Our travel schedule was completely thrown out the window. Luckily for me, my sister was very understanding. Yeah, it sucked but both of us got on with it and had a great time. We were both determined that this awful condition wasn’t going to ruin our trip of a lifetime. We spent as much of our time backpacking and in hostels as we were on a tight budget, but occasionally, when I was really unwell, we would stay in a hotel, so I could use the bathtub and get a good night’s sleep.
After the two months were up, we returned home. Having had the best trip ever it was bittersweet. I didn’t want to leave but I needed too. My HS was at an all-time high and as soon as I got home, I went straight to my doctor. After a few weeks at home, I returned to Australia to live and work. I found a good doctor in Melbourne, who helped me manage my HS and keep symptoms down as much as possible, but nothing really worked long-term. Eventually, I returned to Ireland and was sent straight in for more surgery.
My advice if you want to go travelling…
- If you can go, then GO. DO NOT let your skin condition hold you back. Make sure your doctor knows of your plans and deems you fit to travel.
- Be prepared – Bring everything that you need with you and make sure to stock up again whenever you can.
- Be fluid – My flare-ups and doctors’ appointments caused so many delays I can’t even begin to tell you. You and your travel partner must be able to accept this and just work with what you have.
- Don’t let it get you down –Don’t let flare-ups, leaks, doctors and treatments get you down. I know it’s easier said than done and some days you will have to rest up and go easy on yourself, no matter how much you want to get up and go. Take the time to care for yourself and rest as required.
- Pick your travel buddy wisely – HS is a very physically and mentally draining condition and there most likely will be flare-ups and hold-ups along the way. Choose a travel buddy that will be understanding of this. Better yet, choose a buddy that can cheer you up and motivate you to get going again too. And obviously, choose someone that you will have the best time with.
- Spend some time figuring out how to manage Hidradenitis Suppurativa to suit you and your trip.
So, there you have it. How I travelled with HS and my thoughts on how to manage Hidradenitis Suppurativa.
I hope you found this blog helpful. If you did, I would love to hear from you. Or if you’ve been travelling, I’d love to hear how your experience went. Follow me on social media, my handle for Twitter and Instagram is @hs_suzanne.
Also, if you want to know more about my journey with Hidradenitis Suppurativa you can read it here.
Until next time