Lily Boulle on Chronic Illness, Sleep & Entrepreneurship

This week’s interview with a chronically ill entrepreneur is with Lily Boulle, founder of Sleep Siren, a boutique that focusses on all things sleep.

We discuss what it’s like running a business with a long-term health condition (and all that entails), sleep hygiene when most of the advice doesn’t really feel appropriate, and how she’s adapting her business in this new normal.

Hi Lily! Can you tell me a little bit about you background and your business?

I half grew-up watching my mum run her own business as a graphic designer and marketer. When we were kids, she would share her projects and design briefs with us. My brother and I would submit our ideas or sketches and she would pay us for the ideas she really liked. We would help come up with business names and marketing strap lines. Most of them were pretty bad but some actually got submitted to her clients! She instilled in us that even as children we could have good and valid ideas. It also helped me fall in love with marketing and when I finished school, I decided to follow in her footsteps.

I opted to skip university and went straight into work as a sales & marketing junior. With a lot of dedication, and a good amount of pestering, I took on more responsibility and was able to work my way up pretty quickly. After a few years, I was recruited to London to work for as a marketing manager in the video games industry. I absolutely adored it and I still feel so fortunate to have worked on incredible games like Final Fantasy and Habbo Hotel.

Ultimately though my health decline became too much to manage alongside my career (and the company I was with at the time weren’t willing to support me), so I chose to put my health first and left in 2017.

Flash forward to January 2019 – I launched Sleep Siren, Europe’s first sleep and wellness boutique. We provide customers with everything they need to build a luxurious bedtime routine and support healthy sleep hygiene. From silk pyjamas to decadent pillow sprays, our carefully curated product range and expert articles includes the best in sleep and wellness from around the globe.

Can you tell me a little about your chronic illness and how it impacts how you work?

Like many of us, I have a bit of a laundry list. But the two main conditions that impact me day to day are Ehlers-Danlos Syndrome (Hypermobile) and Endometriosis.

EDS causes me extensive joint pain, subluxations and dislocations. My hips and knees are the worst – they dislocate when I walk so I use a walking stick or wheelchair to get around.

The endometriosis causes nausea, vomiting, digestive problems, and crippling pain which leaves me unable to move or walk. After three years of increasing issues, I finally had surgery in November 2019 and they found endometriosis tissue throughout my abdomen. The surgery helped a lot but it hasn’t cured me. I still lose about 10-15 days a month where I’m totally unable to function.

Due to all this, flexible home working is absolutely critical for me. I don’t know from one day to the next what my health will be doing. On the days I’m ‘well’ I do as much as I possibly can, without exhausting myself. And when I’m not well, I try to just accept it and rest.

Why did you decide to start Sleep Siren?

Between work, illness, and pain, I hadn’t enjoyed a good night’s sleep for almost eight years. I was averaging about four or five hours a night when I became really unwell. When I left my job, I had the chance to focus on my health full-time and I wanted to take it seriously, including my sleep. I began devouring books, articles, medical journals, scientific papers – anything I could get my hands on to learn more. Exercise and diet were mentioned frequently but sleep was just a small footnote, if mentioned at all.

I found that interesting and I started looking into it more. I was shocked to find that sleep is more important to our health than diet, exercise and genetics. Yet I had never once been asked by any of the many, many doctors I saw about my sleep. I was just told to exercise and change my diet – which, like for the millions of people in UK with long-term health conditions, was impossible with my health issues at the time.

Matthew Walker’s ‘Why We Sleep’ came out around this time and it spurred me on further. I went on a couple of sleep courses and I felt ready to make the lifestyle changes I needed.

But when I went looking for products to support these changes, or accessible information, surprisingly there wasn’t much. There were lots and fantastic businesses with great products but no one offering sleep support and explanation alongside the product offering. I couldn’t stop thinking about it and few nights later, the seed of Sleep Siren was born.

How do you go about deciding on your curations and what makes the site?

There is a rhyme or reason to all of our product on Sleep Siren. I curated the collections based on science and research.

For example, having a bath 90 minutes before bed can shorten the time it takes to fall asleep by more than 36%, and help you sleep more deeply which lead me to bubble baths, bath oils, and bath milks.

Pyjamas and socks made from fibres like cotton, silk, moisture-wicking bamboo, help us thermoregulate more efficiently, which in turn allows us to get more deep sleep (muscle repair, growth hormone production) and REM sleep (brain, memory consolidation) – both of which are critical sleep stages for day to day life.

Sleep masks have been shown to significantly improve sleep efficiency and reduction of sleep disturbances. Multiple studies have shown lavender to have a not insignificant improvement on anxiety and sleep, respectively.

I would never profess that silk pyjamas or bubble bath will cure insomnia, but the evidence shows lifestyle changes and better sleep hygiene, including introducing a bedtime routine that you look forward to, improve sleep and wellness.

Do you have anything specifically set up to help you balance your health with your work?

I genuinely love working so I don’t really have an ‘off switch’. Once I start work, I can very easily not come up for air for hours unless I’m forced to. Over time, the way I’ve learned to manage wellness and balancing health is by building in time for myself throughout the day.

I have slow mornings where I drink coffee, read and listen to the news. I do my stretches and strengthening exercises by mid-morning while listening to a podcast.

I make a point to unchain from my desk in between tasks and read my book for a few minutes here and there. I always clock off by 7:00pm, I close my laptop and try to stay offline. I have a relaxing few hours and then I go to bed by 10:00pm. It changes a bit but generally having this consistent schedule has helped me to find balance where I naturally wouldn’t.

How do you balance deadlines and expectations from your customers and the companies you work with when you’re not feeling too great?

I’ve found the best way to manage it is to be open and honest with all of our brands and partners about my health issues and the need for longer deadlines.

I am also open about dispatch timelines, returns processing and similar. I have factored in flexibility with these so that no one is ever (hopefully) disappointed. To date, I have received nothing but compassion and understanding from everyone for which I feel immensely grateful.

Do you have plans in place for unexpected flare ups? I know you had to take time off recently, how did you navigate that?

The business was launched when I was at my most unwell, which has actually been a bit of a blessing. The workload is manageable even when I’m really unwell. Things like email marketing, social media, website copywriting and similar can all be created and scheduled in advance which helps with my sporadic work schedule. We buy seasonally but most of our brands will send things digitally or post samples so I don’t have to travel if I’m unwell.

The only thing that can’t be done entirely at home is the shipping of parcels to our lovely customers. Fortunately, my partner or mum are here to help me with the posting when I’m not well enough. I feel so incredibly lucky to have the support of my mum and partner. I truly couldn’t do it without them.

It’s not always easy handing things off though. It’s my business and I feel a deep sense of responsibility for it all; it’s my baby really. I had endometriosis surgery at the end of November which coincided with one of our sleep masks being featured in the Guardian Christmas gift guide. That day we received dozens of orders. My amazing mum stepped up, wrapped all the orders and posted them off which was a huge weight off for me but I was also really sad and frustrated with my health that I wasn’t there to handle it all.

How are you navigating the current COVID-19 climate? 

Having chronic illness myself, I am extremely aware the heightened risk and I am taking every measure to protect customers and myself during this time.

In December I moved out to the Buckinghamshire countryside so that the office and stock could be in one location, to make things easier when/if I have a flare. This has meant that I have been able to keep accepting and dispatching orders safely without putting myself or customers health at risk.

All stock is kept in a locked room of its own, I wrap all orders with gloves on and surfaces are wiped down twice daily as a precaution. My local post office is in a corner shop, less than a mile in a sleepy village so we rarely see anyone else which is also fantastic. Shipping labels are printed and attached at home, so my lovely partner simply drops off the parcels and leaves. It’s been surprisingly easy to adjust, honestly.

RoyalMail is operating some minor delays so we have noticed some parcels arriving a few days later than they would typically, but otherwise it is business as usual!

Other than trips to the post office, my partner and I have not left the house at all for over four weeks. Although I’m not in the Governments very narrow ‘at risk’ group, I have a terrible immune system and will be doing everything in my power to avoid getting this!

What has been the biggest challenge of running a business whilst chronically ill?

I think the biggest challenge is staying on top of work. I lose so many days to illness or hospital appointments that I’m in a perpetual state of ‘catching up’. It means that I don’t really get many true days off because I simply can’t afford to fall more behind.

It is like trying to run through mud – if you slow down, you’ll sink, so you just have to keep going even when you’re tired. Some days that exhaustion can be overwhelming and all I feel ready to throw in the towel. But (as trite as it sounds) I have a day off and get a good night’s sleep, and the next day I feel ready to take things on again.

And on a more positive note! What’s the best thing?

Beyond helping people improve their health by improving their sleep, I think the best thing about it is the opportunity to show that people chronic illness and disability can be valuable and productive employees, if only given the right support and flexibility.

People with chronic illness shouldn’t have to create their own business to find a job that suits their needs. We need more employers to be open-minded, to see people with chronic illness as an asset, and offer ways of working that match their needs.

This presentee-ism that exists, particularly in the UK, is not only unnecessary given modern technology but it actively shuts out people with additional needs. Much like we need to rethink our entire approach to sleep, we also need to rewrite the rulebook for modern work to accommodate everyone. 

Do you feel you have received much support as an entrepreneur with chronic illness? If not, what would have been helpful for you?

I received funding through the UK Start Up program, which also gave me a mentor from the fashion industry. I was incredibly lucky that they were willing to facilitate my needs and we had most sessions over the phone. This was invaluable for me as I had absolutely no retail experience before launching Sleep Siren and I think the last year would have been a lot tougher without their support.

However, as a whole the support for disabled or chronically ill entrepreneurs is almost non-existent. There are hundreds of grants but only a handful for disabled entrepreneurs. There are dozens of incubator and accelerator programs, but none of them cater to, and few are willing to accommodate, people with disabilities. It’s just not good enough.

What advice would you give to someone with a chronic illness who is looking to start their own business?

Accept that the journey of business will look different for you. You might not follow a ‘traditional’ business timeline. It might take you double or triple the time. Ignore all the “hustle 24/7” rubbish and don’t to push yourself to conform to normal expectations or workloads. Accept that you might not be able to manage the stuff your competitors are doing. But with dedication, patience, and pacing, you will get to your goals.

Running a business with chronic illness is essentially like the hare and the tortoise. Even if it takes a little longer, you will both get to the end eventually – so just enjoy the ride in the meantime.

What are your top time management tips?

I always have a to do list! This really helps prevent me feeling overwhelmed because then I’ve got it documented and it’s not just swimming around my head. I use Trello so I can have access to my lists wherever I am. I break it down by what needs to be done today, this week, next week, etc.

This allows me to have a clear view of all tasks that I need to do for just that day and so on. I also have a separate list for bigger projects and ideas so I don’t forget any of them because brain fog is the devil. Then because I struggle to stay on task and focus sometimes, particularly when I’m in pain, I use the Pomodoro method. It helps break up the day and allows me to pace myself.

What can we expect to see from you in the future?

It’s already shaping up to be a very busy year! We are launching some incredible brands and products in the coming months, starting with a new candle company and some accessible pyjamas/undergarments that I’m really excited about.

We partnered with London’s first wellness hotel, Inhabit, in 2019 to produce some sleep kits and it looks like we have a few more similar partnerships this year which is such a dream. Plus we’re looking at some events where people can get hands on with our products and listen to me chatter. Make sure to follow us on Instagram or join our mailing list to stay in the loop!

I tend to find a lot of the advice offered about ‘good sleep hygiene’ really isn’t accessible – do you have any more realistic advice for people who can’t ‘follow the rules’ but still struggle with sleep

That was a big part of why I started Sleep Siren. I was frustrated by the lack of support for those with different needs.

The biggest challenge I had is that most of the advice says to get out of bed and get active. Which is great but not practical for many. We are producing a series of videos and articles designed for chronic illness and disability in mind that launches in March (world sleep week) but for now, my top three accessible sleep tips would be:

• If you aren’t able to get out of the house I’d highly recommend buying a SAD lamp (I use this one but there are so many) and use it within 30 minutes of waking, and for several hours through the day. Don’t use it after sunset. Having this artificial sunlight in the morning helps anchor your circadian rhythm, boosts serotonin (happy hormone) production and decreases melatonin (sleep hormone), which is critical for good sleep.
• Try not to stay in your pyjamas all day and consider introducing a bedtime wind-down routine 30 minutes before bed. This is important because when we aren’t able to move much our sleep hygiene, and therefore sleep-wake signals, can get a bit muddled. We need to reintroduce cues at specific times to tell our brains “its almost time for rest”. Changing into pyjamas and using products that are only brought out at bedtime can be helpful with this.
• One of the toughest but most important parts of improving sleep is strengthening the sleep-bed association. The typical advice is to only sleep in bed and never lay in it awake for more than 30 minutes. However, for a lot of people with chronic illness, pain keeps is in bed most or all of the time. If this is the case but you’re really struggling with your sleep, then there are some adjustments that can try. First would be to consider investing in a really comfortable chair or couch so you can get out of bed without making your pain worse. If that isn’t possible then simply try to minimise any really stimulating activities like TV, video-games, eating, working whilst you are in bed. These activities will send ‘wake up’ signals to your brain, which your brain will then associate with bed which is the opposite of what we want!

What role does lovely sleepwear play for you as someone with chronic illness?

When you are chronically ill, you get used to feeling rubbish most of the time. We are so conditioned to survive that we forget we also deserve to feel good! Most of us won’t have many occasions were we can get glammed up and truly feel amazing. By having a decadent bedtime routine and a luxurious sleepwear, we get to show our mind and bodies a little love, and feel as pampered as if we were going out for a night on the tiles. Plus it helps us get more sleep which is obviously incredibly important when you’re unwell.

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A huge thank you to Lily for taking the time to answer my questions! You can learn more about Sleep Siren on their website.

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