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Nicole shares her HS story

Hidradenitis suppurativa is a chronic disease that can be a living nightmare for sufferers.  The British Skin Foundation has funded nearly £200,000 of research into the condition in recent times with one of the projects still ongoing. However, there’s still no permanent cure.

We’ve been chatting with Nicole Cruickshank, 23, from Somerset to get a patients eye view of this horrible condition.

 

Nicole

Nicole, you have suffered with hidradenitis suppurativa (HS) for a long time, what do you think is the hardest part of living with the condition?

The hardest part of living with HS is that it isn’t widely talked about; therefore most people don't understand how it affects sufferers like me.  The severe pain that comes with it and the debilitating factors (some days I can hardly walk) is all very misunderstood in the public eye. So trying to explain this complicated condition to people can be very frustrating. It’s not totally clear what causes HS and although it can be treated, it can’t be fully cured.

 

Nicole’s thigh – which can make walking around very difficult 

How important is it to have support from family and friends when living with a condition like HS?

It's very important, HS can make you feel the most vulnerable you have ever felt, it can make you feel so alone. Honestly, unless you have the condition it's very hard for people to understand the pain and the secret fights you’re having with your body every single day. But nothing means more than those you’re closest too really trying to understand, really listening and supporting you if you need it. That means EVERYTHING to me. I honestly don’t know what I’d do without that support.  

Do you find further support from other places, for example online forums and Facebook groups?

Yes - there are some amazing support groups online, particularly on Facebook. You learn so much about yourself and your condition through these support groups by talking to other patients. The people in the support groups can relate to what you’re saying on a huge scale, and they have the same side effects etc... For example, I have fatigue and can feel so tired at times. It’s like I've been hit by a train! The amount of other patients who have said the same is huge. Your body is constantly fighting itself, it's exhausting.

HS is a painful condition, how does it affect your everyday life?

It has affected my life massively, if I woke up and nothing hurt I would think I was dead! My work life, my social life, my body weight and health are all affected. I struggled with my job for years, eventually moving to part time hours because of the pain as my condition progressed. But even that became unbearable and I had to give it up completely. I then did a small amount of work from home to try and get around my condition, but financially that's not great.

My social life is affected as I have to cancel plans and feel guilty about it. I often miss things and slowly over the years I’ve completely lost my old friendship group.

I love to go away with my partner and dog in our little caravan for a change of scenery. It's something we can do where I can take it easy. 

I'm very overweight and with not being able to exercise or sweat, combined with feeling exhausted all the time, it can be very difficult. At the moment all I can do is eat the right things, but it seems impossible to lose the amount of weight I want to lose, which can be very depressing. This condition can make you feel so low. 

 

Nicole & Steve’s caravan in Brean

Apart from the pain caused by HS, how do you cope with the psychological side of the condition?

I'm not sure – I'm still learning to cope. Talking about it more and being open helps because you’re not trying to go through it all AND hide at the same time. But sometimes not talking about it every day helps too! Chatting about something else with my partner or family makes me feel a bit saner! So I just TRY to ignore it all when I'm with people and focus on the conversation. 

I love dogs. Having my dog Sassy by my side – plus sometimes looking after foster dogs in our home – is a great way to help me cope psychologically. But there are those days when you’re in bed all day, wishing you could go do something and then all you can really do is cry! 

My partner does so much more than expected of him, and I feel so guilty at times. For example, when he's been at work all day then has to come home and Hoover the bungalow because I couldn't quite manage. That kind of thing makes me feel terrible, he knows that I do housework when I can but on my bad days, it can fall to him and he doesn't get enough credit - he is amazing. I love him so much he's one in a million and I really do appreciate everything he does.

 

Steve and Nicole

You’re very keen on raising awareness about HS and you’ve bravely shared your story in the press. How important do you think speaking about the condition is? How does it help people like you?

It's so important! Sometimes people think HS is really rare (it isn’t) - simply because no one knows what it is. The condition is not well known so to put it out there and get people talking about it is very important to me. It can sometimes be misdiagnosed or overlooked at first. 

It's also great to get people who are diagnosed with HS talking openly about it and maybe feeling like they don't have to suffer in silence anymore because it's embarrassing or because they don't know what's going on with their body. Some people have even told me that they suspect they have the condition since reading my story in the press.

As there is no cure for this disease, the more awareness we can get out there means the more chance of research and maybe one day finding a cure! Or at least something that really helps. 

Finally, do you have any advice or tips for someone who has just discovered they have HS?

Find the support groups - they were the best thing to ever happen to me when I found them, you feel so alone for so long and then realise you aren’t the only one. 

You get some great advice and information on things to try to ease your symptoms. You can discuss different medications with fellow sufferers, or you can just have a moan and people with HS will understand you more than anyone else in the world. 

I'd also recommend finding a dermatologist or specialist to see instead of a GP, as they will know a little more about HS and help come up with a treatment plan. Unfortunately there is no cure but you may find something that helps relieve your symptoms.

 Steve, Sassy & Nicole joking around 

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