Why my diagnosis led me to own my own business and why self-employment works so well for me
Growing up, there was only one career I wanted, and that was to join the police. My degree was broad to allow me to go down that path, then my Masters was more specialised (Forensic Speech Science) in order to give myself a better chance of getting in. After finishing my studies, I had planned a trip around the world with my best friend to blow off steam for a year before embarking on my career; my destiny.
The early signs of illness
All my life I’d suffered with joint pain in my knees and hips, being told by different doctors that it was different things: growing pains, my legs growing too quickly, my bones growing twisted, my muscles not growing enough or stretching enough. Countless physiotherapy, hydrotherapy and appointments left me tired of it all, but not feeling much better. My hips clicked, I couldn’t kneel down without pain, I couldn’t cross my legs on the floor like the other kids, but I just accepted this as life and stopped complaining to doctors about it. After all, the last doctor I complained to about it said that the only cure was multiple operations, leaving me in plaster from waist to toe for months at a time. No thank you!
When my back hurt so much as a waitress at sixteen that I had to give it up, I just accepted it and moved on. Everyone gets a sore back, and I was just unfit, right? And when my back hurt so much if I did too many shifts in a row as a barmaid that I’d have to crouch down with my back against the fridges to cool it down, that was just me overdoing it, right? And when my fourth finger started swelling up during the period of time that I was writing my Masters dissertation, I just put it down to repetitive strain injury from typing and moved on. I didn’t go to the GP if I could help it, I’d lost my faith.
In between leaving university and leaving for travels, I worked an admin role for a company in the city centre. It was only a few months, but I seemed to be in the wars while working there. I broke the fourth toe on my left foot getting ready for an anniversary dinner with my now husband. I contracted glandular fever and had to have quite a lot of time off sick. And I fell down the office stairs and sprained my ankle! The significance of these things will become clear.
So, we set off for our travels, bright-eyed and bushy-tailed; me, my best friend, my now-husband and his best friend. South-East Asia was amazing. We started in Hong Kong, then went to Singapore, Malaysia and Thailand. In Hong Kong we did a lot of walking and I noticed that the toe I broke several months before was still swollen and would hurt a lot if I did too much, particularly walking up and down hills. I was also struggling to get my backpack on my back, and my shoulder and back joints would really hurt if I had to carry it too far. My best friend is a lot smaller than me and she was fine, so why was I struggling so much? I came to the conclusion that I must be weak and unfit. We went scuba diving in Thailand and my best friend and I did our PADI open water diving course. I was starting to really struggle with the wetsuit because my swollen finger was getting worse and worse, and the thumb on the same hand was now swelling too. I had to have help to get into it, and help to get out of the water and back onto the boat. Why was I so weak?
The swollen fingers got so big and painful that I was worried I had some kind of infection in them, so resolved to go to the doctor as soon as we landed in Australia. I did, he took one look at me, and said, “I know what it is and you’re not going to like it.” He asked me how long we planned to stay in Perth and when I said it was only two weeks, he told me we had to change our plans, as it would take much longer to fix the issues. He referred me to a rheumatologist and just five days later I was sitting in a rheumatologist’s office feeling utterly bewildered. In my admin job I worked with someone with rheumatoid arthritis, but she was much older and was seriously disabled. I can’t have the same thing!
The life-changing diagnosis
The rheumatologist checked out my finger joints, and my swollen toe, and pointed out that I had slight ridges on my toenails, which I had just put down to damage from wearing high heels too often. He asked about my psoriasis, which I have on my scalp, and also checked out all my other joints, focusing a lot of attention on my back. He asked how I feel in the mornings versus how I feel during the day and in the evening. I agreed that it took me a while to get going in the morning because I’m stiff and tired, but that’s normal for someone who is definitely not a morning person, right? He also told me that it’s not normal to have back pain, particularly to the extent I did. It was a sign something was wrong.
I was absolutely astonished when he said that I had two forms of arthritis, which were autoimmune diseases closely linked to rheumatoid arthritis. I have ankylosing spondylitis in my spine, hips and pelvis, and psoriatic arthritis in my peripheral joints, such as fingers and toes, with the added bonus of my skin condition, psoriasis. I’d had psoriasis since the age of eleven and had no idea that it was actually an autoimmune disease too. In simple terms, my immune system tells my brain that there’s something wrong with my joints (or my skin in the case of the psoriasis), so my brain sends more white blood cells to fight something that’s not there. Instead, the white blood cells attack the linings of the joints and the skin. The joints get swollen, inflamed and very painful, and the skin grows extra layers, which flake, crack and bleed. So that explains the pain that I was in. I didn’t realise how abnormal it was until it was pointed out to me because I’d given up complaining about it!
All sorts of questions filled my mind. Was it curable, would I be able to continue travelling, would I be able to live a normal life, having kids and enjoying myself? Would I end up like the lady I worked with, who struggled a lot, tried not to moan, but couldn’t help it, not able to do normal things? I was scared, I was lonely, the other side of the world from home and all I wanted was my mum! I remember walking to the nearest park, sitting on a bench and phoning my mum, putting on a front and saying everything would be okay, when I felt the opposite!
I spent the next eight months in Perth, working several different jobs, trying to enjoy my time there, and going to seemingly endless GP appointments, expensive rheumatology appointments and trialling lots of different medication because I didn’t respond too well to a lot of them. I ended up on a very expensive drug that I had to keep in the fridge and inject weekly. I was set up with enough medication to get me through my travels along the south coast of Australia in our campervan, Sunny, until I got to the appointment that he set up for me in Sydney. It was a crazy journey to get to that appointment but that’s for another time.
At the Sydney rheumatology appointment, I was told that because I wasn’t Australian, they could only fund enough medication to get me home. That meant I had to get a GP appointment as soon as I was home to get referred to a rheumatologist and get back on the right treatment. Well, it took five months for the rheumatology appointment to come through, and another month to get the paperwork for the medication sorted, so the miracle treatment that had me hopping around the rest of our travels and off all the other drugs had well and truly worn off, and when I went back on it, it was no longer effective, which is pretty common with this medication. I was in a bit of a state!
What was worse was when I came to apply to join the police on the recruitment drive they were handily conducting on my return to the UK, I couldn’t even get past the first screen of the application process. The first question was: do you have any of these conditions, and they listed rheumatological conditions as one. I had to click yes, and the next screen told me that my application couldn’t proceed. My dream career came crashing down around me, and I felt utterly lost with no direction.
I spent the next month trawling through online job sites, and my mum was circling all of the jobs in the papers that she thought I might like. All of my experience was in admin and customer service, so a lot of my applications were within that industry, but nothing really sparked my interest and made me feel all warm and fuzzy inside. That was until my mum pointed out a tiny ad in the paper for a book publishing company. It was for an admin assistant, and at the interview they said that it was a job role designed to dip into each department to allow the successful candidate to find their passion and work their way up through that part of the company. I was offered the job and was absolutely ecstatic! I loved books, but had never considered that they could be a part of my career.
I started at the bottom, quite literally! The office had the whole ground floor as a warehouse, with the first floor housing the open-plan office. I was to live in the warehouse most of my time, picking and packing books for orders coming in from distributors, bookshops and individuals, doing the administration for the company, including invoicing, then doing tasks for each department, such as stuffing mail shots for the marketing department and making proof corrections for the production department. It was with the production department that I really found my passion. Taking an author’s manuscript and turning it into something beautiful really appealed.
I spent six years at that publishing house, working my way up from the bottom to becoming the Group Production Manager, heading up the design teams across all of the imprints in the publishing house, including the self-publishing imprint. I loved designing book covers, interiors, the most challenging but rewarding being the picture-heavy coffee table books. I did talks about publishing at events and loved it, even meeting some lovely celebrity authors like Michael Palin! I also worked on a freelance basis editing books for them in my spare time.
Working there was not without its problems, though. An open-plan office with air conditioning in the summer and central heating in the winter meant that bugs were passed round extremely quickly. The way my medication works is to suppress my immune system, so there are less white blood cells to attack my body. This also means, however, that it is harder to fight off infections. I catch everything and then find it harder than others to fight it off. So, I was off sick more often and for longer than other staff members. I also struggled with the sedentary lifestyle of office life. Once I’d moved out of the warehouse, I was a lot less active, sitting at my desk in a chair for the majority of the time. This meant I got very stiff and my joints got more painful, as it is much better for my condition to be as active as possible. I was constantly worried about catching up, about how my absences were affecting my colleagues and the guilt was unreal. This, in turn, elevated my stress levels, which made me more prone to illness, so it was a vicious circle.
On the right track
The answer came when I became pregnant with my first daughter. I’d been told by rheumatology that it was much better for someone with my conditions to have babies earlier, preferably under thirty, but I wanted to be married and have a house first, so I was twenty-nine by the time I got pregnant, and thirty when I gave birth. I had to have a c-section because of how my arthritis has affected me, which ended up as an emergency because the cheeky monkey decided to come early! But it was the happiest time of my life. Having a newborn was hard, but I felt far less stressed than I did at work because it was just me and her against the world, and I was treasuring my time with her. I started to worry about going back to work, which was when my husband suggested I look at working freelance. We’d looked at the finances, and if she went into full-time childcare we’d come out with very little if I went back to work anyway, so what did we have to lose?
After a discussion with the directors of the company, who were very supportive and gave me my first freelance gigs, I started Fuzzy Flamingo and launched my career as a businesswoman. I started networking and building my brand and found that, although I had been initially terrified, I absolutely loved it! Two years down the line and I’m now an award-winning businesswoman, I have two daughters, and I’m now earning as much as I was at my old job but on a part-time basis, on my own terms. I choose my own hours, I have my desk set up to suit my needs (stand up-sit down desk, footrest, etc.) and I can schedule in a nap if I’m flaring badly. I no longer feel guilty about falling ill because my clients are scheduled in a way that there’s a contingency if I can’t work quickly, and I have found my true calling in life.
You may have your life and career all mapped out, but if a spanner is thrown in the works and things don’t pan out as you’d expected, don’t worry. Everything happens for a reason and if one door closes then turn around, there may be several more waiting to be opened behind you!