Following on from my last article, here a few more tips for managing HS on a daily basis. These little tips help me get through the day and keep on top of my HS.
1. Keep a Trigger diary
What makes managinng HS difficult is the fact it is different for everyone. What medication may work for one person may not work for another. Similarly, what causes a flareup for one person may not for another. I found it hugely helpful to keep a diary to try and pinpoint what was causing flare ups. I found that this could be certain foods or my diet and certain activities or periods where my life was stressful. Now I know to avoid dairy and to try and minimise the amount of stress in my life.
2. Find a method that will help relieve pain
When I am going through a bad flare up, I find a cold compress can really help relieve the discomfort and itch. When I have the time, a warm bath with either sea salt or Epsom salts can work wonders too. I take pain medication when required to get me through my day. Managing HS pain is tricky. It is always good to talk to your doctor about pain and help them understand your needs. Pain is so personal, so it is a good idea to keep a diary of all the times you have been in pain. Log the date and how long it was for, and rate it mild, moderate or severe. Once you have some information on how you experience pain, your doctor will be better able to help you.
3. Find something that brings you joy
You need to find something that bring you joy. Something you can do to keep you out of a funk and keep you on an optimistic track. It can be anything from reading a good book to a painting class to a simple Netflix evening. On my bad days I distract myself with my work (which I love) and going for walks along the Salthill prom.
4. Get comfortable with HS
I understand that some people find it hard to talk about the condition and managing hs. I certainly did at the start. But learning how to talk openly about HS is extremely freeing. You don’t need to share your life story but having the courage to say ‘hey, I have this thing called HS’ and having a short explainer of what HS is prepared can be really liberating. If the person that you are talking to wants to know more, they will ask, and you can choose if you want to explain more or just say ‘checkout this website. They explain it well. ‘
Sometimes, being able to talk about it becomes necessary.
For example, I find it hard to sit in the one position for too long. At work I might sit with my legs up which, to people who don’t know me may look unprofessional and laid back but I explained to my team that sometimes this is the only way for me to sit comfortably at a desk and now they take no notice. I also have a donut pillow in my office for when sitting becomes painful. It helps!
5. Don’t let it define you
Don’t let having HS become what you are about. Remember, HS is not your fault and it is not what you are. It’s just a shi**y little thing that you must live with and that is all the credit it deserves. Managing HS is achievable. The bottom line is, you are more than your skin condition.
Hidradenitis Suppurativa isn’t curable but it is manageable. The management techniques differ for everyone but hopefully reading some of mine will help you figure out yours. Living with HS can feel lonely at times but please know that you are not alone. There are a lot of #HSwarriors dealing with similar issues and who are there to support you if needed.
About the Author
Suzanne Moloney has had 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.