The story of Imogen
Back in 2019, I remember a friendly, caring nurse squeezing my hand and lovingly calling me ‘Million Dollar Baby’ as I was being taken down to theatre for the second of the three operations I’d have that year. This was not due to the film but on account of all the hospital visits, stays and procedures I’d had so far in my then 26 years. I assured her that I was Catwoman as I had now used up three of my nine lives.
My mum would be the first to tell you that I was a happy, healthy baby and, from a medical viewpoint, a robust child. This was to the point where I didn’t miss a day of school for the four years I was in junior school. 2004 was a particularly promising year, I was lucky enough to have been offered a place at a grammar school and had discovered my love of the performing arts. It is also the year that I last remember feeling well.
Just as I was starting secondary school in September 2004 I caught listeriosis which made me seriously unwell. Even after I recovered I still didn’t feel myself and felt a constant sense of fatigue and malaise. I started to sleep a lot more however I was now travelling at least two hours each day to get to and from school therefore this didn’t seem out of the ordinary. However, puberty seemed to exacerbate this and I started doing things that were out of character such as falling asleep in class.
In 2008 I went to my GP who ran a series of routine tests. I was anaemic and further investigations at the local hospital revealed that I had Sinus Tachycardia Arrhythmia and a heart murmur. I was under the care of paediatric cardiologists there until I went to university. My other symptoms however, mainly joint and bone pain proved perplexing to the doctors. Physio would only help so far and other treatments such as acupuncture which was available on the NHS at the time made no difference. My GP was tremendously supportive and explored possible explanations but the tests he ordered didn’t show anything. Meanwhile the consultants I saw at the hospital came up with a plethora of possible causes ranging from posture to stress from my upcoming A levels. Even my family were confused as to why I was suffering from so much pain yet nothing of any significance was showing up on the tests. At this point I was frustrated and desperately wanted answers. I genuinely felt like the doctors didn’t believe me.
The four years I was in university were eventful in terms of developments in my medical situation. I was diagnosed with coeliac disease, underwent four operations, two of which to help treat endometriosis and another an emergency surgery to remove my appendix. At the same time the doctors thought my thyroid was failing but this was later confirmed to be Autoimmune Thyrotoxicosis. That same year I was diagnosed with IgA Nephropathy, an autoimmune kidney disease and left temporal lobe epilepsy.
By the time I was in my second of four years at university, my health was deteriorating. I was spending most days in hospital; if I wasn’t attending for treatment I was being admitted with dangerously high fevers or problems with my heart or kidneys. I was at Swansea university and one of the hospitals I spent time in was conveniently close. On the days I was well enough to attend lectures I often wondered from lecture theatre to hospital and back. Just after my 21st birthday I started developing problems with my ears, the tissues becoming so inflamed that infections would develop causing my eardrums to rupture. A specialist blood test carried out in Cardiff revealed that there were high levels of antinuclear antibodies in my blood with a speckled nucleolar pattern. It was explained that whilst antinuclear antibodies had been associated with the presence of certain cancers such as leukaemia, a speckled nucleolar pattern indicated a presence of another disease process other than cancer. We still didn’t know what specifically was wrong but for me this went some way toward an explanation to what was going on.
In the autumn of 2014 I started my final year which was by far the hardest both physically and emotionally. I was struggling to attend lectures either due to extreme lack of energy of being in agonising pain. The stress of being in final year alone caused my seizures to worsen and as the onslaught of medical appointments continued, romantic relationships failed under the strain and friendships dwindled. Shortly before Christmas of the same year I met with the palliative care team to discuss my end of life care plan. Concerned for both my mental and physical health, the head of department suggested I suspend my studies following an emergency admission to hospital with sepsis. I refused point blank; studying for a maths degree had been my dream for so long and I was determined that I would graduate. I wouldn’t have blamed him for thinking me mad; I still had tubes hanging out of me!
Any fellow mathematicians reading this will appreciate that a seemingly chaotic system is comprised of infinitely ordered systems. Even in the midst of chaos, order was beginning to reign supreme. What was supposed to be a routine appointment with a rheumatologist was rescheduled, this time with a different consultant. Particularly experienced in his field, he read through my copious medical notes and was finally beginning to see a bigger picture.
On August 3rd 2015 I was diagnosed with Relapsing Polychondritis, a rare autoimmune disease in which cartilage becomes inflamed and weakened over time. In my case the disease is severe and so my organs are affected as well as joints and any other structures involving cartilage. Despite being an expert in his field, he had only treated one other patient with the disease who had died owing to the complications it causes. It had taken six years but I was grateful to have answers as so many wait far longer for theirs.
When I got my diagnosis, I thought that would be the difficult part over with especially as getting to this point felt like I had travelled to the moon and back! It didn’t prepare me for the tsunami of medical appointments that would follow or the complications. It wasn’t going to disappear because it had a name. After graduating, it took a further two years to be referred to specialist consultants and the rarity and severity made finding an effective treatment plan more difficult. After kinder, less invasive treatments didn’t work, I tried two different treatments that would suppress my immune system. My body struggled to tolerate the treatment and I experienced hair loss and persistent nausea and sickness.
I am thirty-one and my life is very different to what I had imagined it would be before all this began. Since the age of fifteen hospital appointments and stays are a regular part of my life to the point where I sometimes wake up unsure if I am in hospital and am relieved to discover my own bed. I have had 14 operations, all of which either saved my life or drastically improved it. At one point I was on 30 tablets a day and am still dependent on the multiple medications I have to take daily. I am familiar with the intensive care unit. On the occasions I have spoken about this with someone less familiar, I have been told that I am unlucky but that isn’t the way I see it. When I suffered a (thankfully minor) stroke aged twenty-three, the care I received was nothing short of excellent and I am under the care of some of the best consultants in specialist hospitals. My family and closest friends have been with me through everything never once complaining. For them I will always be grateful.
We all hope that life is long and, whilst my future is not certain, I find tremendous purpose in the present. Qualifying as a teacher felt like a small miracle as there were many setbacks and I had reached the point where I felt like it wasn’t going to happen. Whilst mainstream teaching isn’t a realistic option for me, I have found my niche in working one to one with students who don’t attend mainstream school for various reasons. There is strength in numbers, in my case both literally and metaphorically. If you are reading this and are in a similar situation, my advice is to get that second opinion. Don’t let anyone dismiss you, you will know your body better than anyone. Life is too short to be wasted doing something that isn’t rewarding or doesn’t make you happy.