I am 27 and have experienced the pain and disruption HS causes for over five years. I have been on too many antibiotics, had flaming hot lumps as big as baseballs on my neck and armpits, as well as smaller lumps around my groin. The antibiotics Ive been on came with severe side effects and have destroyed my immune system. The antibiotics have torn my gut and there have been times when Ive vomited and passed blood, not pleasant. It was only recently that Ive met doctors who are aware of how to treat HS.

One was able to drain a very large, painful and debilitating lump with needles. She tested what was collected and found that I was also suffering from an E.coli super infection and had been on the wrong sort of antibiotics! While the draining helped considerably, and being able to move without pain has meant I can also move on with my life, I was frustrated with western medicines approach and understanding of HS. Every GP was giving me referrals to surgeons, the cost and time involved with having surgery did not appeal to me. They also offered me pain killers which I refused to take, because I want to listen to my body, not mute it.

So I have taken time off work to recover and have used this time to research and learn what I can do to help myself and others. Another healer who Ive met, said the person with one illness, lives longer than someone who has none, this is because weve been given the chance to learn about our bodies/selves and how to give ourselves (and receive) what we need.

Ive also been fortunate to meet a great naturopath. She has given me remedies that have seen most of the symptoms and old wounds healing in a couple of weeks! The other GPs have been amazed and surgery doesnt need to happen, for now.

Shes also helping me with bringing my immune system back to life, starting with my damaged gut. Our bodies know how to heal themselves, but we need to give them the best chance and get out of our own way. This involves changing what you eat, being active, practising mindfulness and choosing to go beyond suffering or staying in survival mode, and actually getting healthy and feeling like youre thriving and living again.

It was only a month ago that I was experiencing the worst pain and feeling very down about things. Reading posts like these helped me not feel so alone, so many heartfelt thanks for sharing.

Heres a random list of what Ive found most helpful. I hope you or a loved one with HS gets the chance to try them out, if they havent already. Although we share the same diagnosis, were also all unique, so what works for some may not suit others, but the only way to find out is to give it a go.

The naturopath also recommended I read and follow -The Body Ecology Diet: Recovering your health and rebuilding your immunity, by Donna Gates with Linda Schatz. You dont necessarily have to buy their extra supplements/products, the nutritional concepts and diet changes are enough. While there was a bit of discomfort on the new diet at first, the rapid improvements and rise in energy levels help me stick with it. Living in Tasmania I have access to diverse, cheap, local and organic produce, clean water and the freshest air. I know it can be more difficult to eat well and wander in the wilderness depending on whats available and nearby, but even if its hard to find, its worth it.

Mindfulness and meditation can help deal with the constant pain.

Puzzles or games can also take your mind off the pain.

Phoning or catching up with close friends.

Gentle exercise and Qi Gong. Only do what you can depending on you range of mobility. Go to the point of discomfort and stop, dont push it, only do exercises that are comfortable and help you feel better. Over time your fitness, flexibility, agility, strength and weight will improve. Itll take as long as it takes, when it comes to training there are no shortcuts and regularity is key.

Watching my favourite films at night or using breathing relaxation techniques when the pain makes it hard to sleep.

Being creative because it can be cathartic and fun! Music, writing, making art.

Probiotics and high doses of daily Vitamin D.

Soak a clean small sponge in cold black tea, squeeze out the excess liquid and apply it to the affected area, it feels so good because the tannins help soothe inflammation.

Cry. HS is bloody painful, cry for as long as you need to. If other emotions surface with the pain, feel them, let it all out. If a loved one comforts you, they may cry too, because they can be as anxious and stressed about your HS as you, cry and youll both feel better afterwards.

Manuka honey.

Organic, biodynamic ginseng essence.

Turmeric.

Aloe Vera.

Tea tree oil, body washes and antiperspirant deodorants.

Swimming in the ocean. I experience the most relief floating in cool and salty water. Himalayan salt and clay baths also work, if unpolluted beaches arent close by.

Massages and acupressure.

Taking the time to rest and recover. Using this time to become aware of blockages/tension, to clear my thoughts, release pent up emotions and to reconnect spiritually to my values and beliefs. Health is holistic, if you focus too much on your physical body, you may miss what you need intellectually, emotionally and spiritually.

Developing self-control when it comes to food, alcohol/drugs and not overdoing it when it comes to work and exercise.

Learning how to let go of shame by being kind to myself. Smile at yourself when you see yourself in the mirror, laugh if you look a bit frightful. Love yourself, become your own best friend.

Not hiding what Ive been experiencing from my partner. Share what youre going through, dont be afraid of asking for what you need. Its much easier and enjoyable if you can agree to make necessary lifestyle changes together.

Remember theres always more options to choose from if you keep your mind open. Choose doing things about your HS, over just thinking and worrying about it. Youre body cannot heal when its stressed. Respect the light within, trust your intuition, both will show you the way. Thanks for reading this, hope it helps.