The daily struggle with Hidradenitis Suppurativa (HS)
Since developing Hidradenitis Suppurativa (HS) over 20 years ago, my life has become a lot more complicated. From the moment I wake up, I have to manage my HS in order to get through the day.
I used to spend a lot of time on dressings and bandages to cover my HS so they would be comfortable, discreet and secure but this was always a struggle and delayed me in the mornings, and put me in the wrong frame of mind for the day. The next challenge was finding something to wear – I use to wear all black or very dark clothes, but in work I wore a white jacket and I constantly worried about leaks and stains.
Pain and discomfort was, and still is an issue for me. I try to manage it as best as I can, but every now and then, I have to give myself the time to rest and recover from the pain and utter exhaustion that comes with it.
Before I continue, let me remind you of what Hidradenitis Suppurativa(HS) is:
Hidradenitis Suppurativa (HS) is a chronic, inflammatory skin disease that causes recurrent and painful nodules, boils, abscesses and lesions of the skin. Read more about HS here. Don’t be fooled by the term “skin disease”
HS is so much more than that.
Hidradenitis Suppurativa (HS) is not only physically tasking, but it can take a huge toll on your mental health too. It can cause extreme fatigue, constant pain and serious self-confidence issues. The lesions can cause intense scarring which takes time to come to grips with, knowing that your body will never look the same again and this often brings emotions such as shame, anxiety, anger and sadness into play. With all of this going on it can be easy to feel sorry for yourself and let yourself get into a rut. But I try to not let this happen. Over the years, I have developed a few coping mechanisms that keep me on track and get me through the week, week after week.
So, if you are struggling with HS or have been newly diagnosed, here are the things that help me. I hope they will help you:
1. Give gentle exercise a go
Before developing HS, I was a very active person. Now, the sports that I once loved are no longer worth the pain I go through when I try to play them. So instead I have found a passion for yoga. It feels good to participate in a gentle yet effective form of exercise like yoga. Moving the body and just taking those few hours a week to do something productive for me and my health really helps me. You can find some yoga videos that have been tailored for people with HS here. There are lots of other options for people with HS, like walking or rambling, swimming, pilates and tai chi.
2. Build yourself a support system
Having a good support system is crucial to getting through anything. I am extremely fortunate to have a loving family. My mum, sister and brother are great at giving a hand when I need it. No matter the task. As are some of my close friends. Opening up about HS to them was a scary idea at first, because I had always downplayed it so much. But sharing my experience with friends has been a huge benefit. People ask me now “how is your HS?” – and it is so nice to be asked that and to be able to answer honestly.
What about HS support in work?
If you are working, it is important to have a good support system there too. My team are really understanding of the condition and it is never a problem if I have a slow start to the morning or must work from home for the day. Being able to adapt to the work environment is difficult if your close colleagues or boss doesn’t know why you need to in the first place.
Professional HS support
Your healthcare providers are another support system that you need to get right. When you need as much medical attention as I do, it is imperative that you find a doctor and/or healthcare team that understands the condition and understands you.
HS support for yourself
I have also learned that I need to support myself too. By which I mean, I had to learn to swallow my pride and ask for help and support when I needed it. I often felt like I didn’t want to ask in case I was being a burden, but I soon realised this wasn’t the case at all. Those that love you want to support you but may not know how to. All I had to do was find the courage to ask for what I needed or tell them what they could do to help, and it was never a problem. Knowing I have this support gives me great peace of mind.
3. Join a HS group
This ties in with your support network, but deserves it’s own mention. There is an amazing community of #HSWarriors online. I have found joining these groups and communities to be extremely helpful. It’s nice to know that you are not the only one experiencing what you are experiencing. It can also be a brilliant way of learning new treatments or coping mechanisms. Many of the groups can be found on Facebook and majority of them are closed to give the members privacy. If you would like to meet other people living with HS in a safe environment, why not join the HidraWear HS support group on Facebook.
I got sick of wasting so much of my life trying to place bandages that I knew were never going to stay in place. So, I created my own solution. I set up my own wound care company and developed a product called HidraWear.
HidraWear is adhesive free which makes it kind to your skin. It is discreet, secure and the dressings are highly absorbent. With HidraWear, you can apply and change a dressing in under 30 seconds. It is so easy to use and helps me to keep fresh throughout the day.
For more information about the design features of HidraWear, watch the video below:
5. Organise your wardrobe
Feeling comfortable and confident helps me get through the day a little easier. Getting dressed used to cause me stress so I decided to make it a lot easier. All my clothes are soft and comfy. I have a lot of leggings, loose tops, loose dresses and loads of comfy cardigans I can get wrapped up in.
Before I invented HidraWear, leakages from my hidradenitis suppurativa (HS) used to be a big problem, so I had gotten into the habit of wearing a lot of black as this disguised the leakages better. Although this is no longer a problem, I am still in the habit of wearing a lot of black. I am trying to break that habit in 2020
About the Author
Suzanne Moloney has had hidradenitis suppurativa (HS) since she was 13 years old, and so she has made it her life’s work to improve the lives of people with HS. Due to her own struggles with HS and wound care, she founded HidraMed Solutions in 2016.