SOME PEOPLE MAY FIND THE FOOTAGE IN THIS ARTICLE UPSETTING
As some people know, I’ve stopped writing for The Canary, for now. One video sums up my reasons for this decision. But the backstory behind it really hammers home why I’ve done this. And it also acts as a testament to the situation for millions of chronically ill people around the world.
The tip of the iceberg
This is my girlfriend Nicola Jeffery having one of her regular seizures. Some people may find this upsetting:
These apparent tonic clonic episodes happen at least once a month. They leave Nic fatigued, with Post Exertional Malaise (PEM) and bed-bound for days afterwards. But they are merely symptoms of a complex web of underlying diseases and chronic illnesses she lives with. And they are also merely a symptom of why I have given up full time work.
But the true illness here is Nic’s long and complex journey to this point. Because it underscores the systemic failings of our society.
It’s the first time I’m properly writing about this. Me and Nic have taken the decision to start documenting her story because we feel there are various important narratives that need to be made public.
No sob story here
This is not Nic’s ‘sob story’. This two part article is acting as the first point of reference in what will be a long and ongoing series of pieces charting her medical, societal and socioeconomic journey. While elements of her story may not be unusual, as the sum of their parts I believe her case to be extraordinary – insomuch that not many people have got to the point she has in her circumstances.
But the reality in our opinion is that Nic and her medical journey are probably not ‘rare’, even though her diseases and illnesses are classed as such. As she always says:
They’re not ‘rare’. They’re just ‘rarely diagnosed’.
The hope is that this can be a small part in the ongoing movement towards change for chronically ill, disabled and sick people – many of whom are probably mis, under or undiagnosed.
For reference, I’m writing it because I’m the writer. If this was a vlog, Nic would be doing it – because she has an acute skill in verbal communication.
Nic was born in 1986. A C-Section birth, the umbilical cord was wrapped around her neck restricting her breathing. It was perhaps the first indicator that her health was going to be a complex matter.
Before the age of five, she was told she had:
• Growing pains including head/neck aches, joints, muscles.
• Left side sinus complications.
• Disturbed sleep.
Of course, we now know that the “growing pains” and “asthma” were bullshit. The sinus complications and disturbed sleep were symptoms of her current illnesses. But everything was either misdiagnosed or dismissed as nothing. The reason? A working class, council estate mother with the wrong postcode ‘didn’t know what she was talking about’ in the eyes of the middle class, medical professionals of the elitist London borough of Bromley.
Aged five, Nic developed Alopecia, possibly the areata type owing to the autoimmune implications, although we don’t know. Her GP at the time told her mother this was due to her “being jealous of the birth of her brother”. Again, we now know differently. It was probably the first sign that her immune and autonomic systems weren’t what they should be.
And so, this constant dismissal, disbelief or downright disinterest in Nic’s health has continued along the lines of her early medical experiences.
Other early symptoms included Nic’s proficiency at karate – she was extremely flexible. Also, she used to wake up in the mornings with unexplained bruises. Her grandmother noted how she used to move a lot sometimes during the night, ‘like she was playing karate in her sleep’.
A complex history
I’m not going to write paragraphs on her medical history. Putting it in bullet points is easier for you to read. So, here it is:
• Suspected viral Meningitis aged 11 years.
• Pityriasis Rosea (a viral infection) aged 12 years.
• Put on the contraceptive pill aged 13 years (came off aged 18) for the regulation of heavy, irregular periods. She was not sexually active until she was 16.
• Glandular Fever (a viral infection) aged 17 years.
• CIN 11/111 (pre-Ovarian cancerous cells, possibly viral) growths removed aged 19 years.
• Birth of first child aged 20 years.
• Suspected H1N1 virus (Swine Flu) aged 23 years.
• Fetal loss at 20 weeks aged 26 years.
Now, while none of the above may not seem out of the ordinary to many people (maybe rather upsetting and a lot to deal with) for Nic all of it was. Because when looked at as a whole, they show the patterns emerging of what we now know are her underlying diseases and illnesses.
She was a very fit and healthy child until she caught Meningitis. After that, she never fully recovered and her energy levels were never restored. She used to have days off from her Grammar school (going there is a whole other story) due to exhaustion. She had to give up karate. But apparently there was nothing wrong.
The same thing happened after the Glandular Fever, which hit while she had what the ‘system’ would consider a ‘good job’ in the City. She was again left in an even worse, permanent state of health than after the Meningitis.
And repeat this process after the birth of her first child. It was then she was completely destroyed, and the extent of her ill-health became apparent.
She was constantly fatigued. Her muscles and joints ached all the time, with subluxations (partial dislocations). She had dizzy spells. She had periods of extreme vomiting. Her digestive functions resembled that of someone with Irritable Bowel Syndrome. She had partial incontinence. Pins and needles and spasms plagued her body. She was also having the seizures. Her cognitive ability was severely impaired.
But, according to the medical profession, social services and the Department for Work and Pensions, this was ‘all in her head’. Apart from a diagnosis of Temporomandibular Joint Dysfunction they all said she was experiencing this because, essentially, she was a hypochondriac and depressed. Now, her symptoms may be labelled as “functional“, or as is becoming more fashionable in junk pseudo-science and psychology circles, “somatic“. That is, stress, anxiety or trauma trigger actual-body responses. However you dress that bullshit up, it’s still someone saying to you “it’s all in your head”.
What followed is absolutely shocking.
A low is reached
Nic’s first concern over her health was that she felt she was not looking after her young son as well as she should be. For example, she was not waking up when he was crying. So, couple that with domestic violence from the father, and she went to social services for help.
Because no medical professional was believing her, she had no proof she was unwell. Also, there were external forces influencing people within social services. In the end, despite her desperate pleas for help, Nic was sectioned in 2008 under the Mental Health Act, as social services essentially said her desperation about her health amounted to her being mentally unstable.
Funnily enough after nine days in a secure unit, where another patient tried to stab her, she was released with a clean bill of mental health just hours before the tribunal over her sectioning was due to be heard.
So, with mental health effectively ruled out as a cause of her illnesses, Nic began the long road of finding answers to her health chaos. Along the way came homelessness, a two-year court battle for custody of her child, hate crimes, discrimination and misogyny. But that’s all for another article.
Eventually, after continued dismissal by the medical world, she was given a diagnosis of Fibromyalgia in 2010. In 2011, she was told she had Polycystic Ovary Syndrome along with Epilepsy (only after her seizures were finally witnessed). For this she was prescribed Lamotrigine. When she fell pregnant with her daughter, her GP told her to come off it immediately. We now know this most likely caused her fetal loss, as she probably had a seizure.
Test, after test, referral after referral and consultation after consultation followed for the next six years. All came back showing nothing particularly abnormal apart from odd bits here and there, which weren’t taken seriously.
During this time Nic was researching for herself, and came across something called the Ehlers-Danlos syndromes (EDS). These are genetic connective tissue disorders, where none of the collagen in your body works properly (eg, the flexibility she had as a child would be due to lax ligaments and muscles). She believed she matched the criteria and finally find a consultant who agreed. So, the path to an EDS diagnosis began.
Also while all this was going on, Nic developed an acute social and class consciousness, joining and becoming active in both the Green Party and campaign group Disabled People Against Cuts (DPAC). Then, in 2016, she also met a certain notorious journalist from The Canary news site…
Part two of Nic’s story will be published shortly.