Me and Nicola in 2017

Why I’m giving up writing. For now.

Hi to everyone reading this.

Further to a discussion with the Canary leadership team I have an announcement to make.

From Friday 8 February I am formally not writing on a regular basis for The Canary anymore. I will be continuing to do the podcast weekly and accompanying music features.

The reasons for this are complicated – but actually very simple. My partner Nicola is chronically ill, as many of you know. Before we got together she had previously been told her illnesses were ‘all in her head’ and mental health-related, even to the point that professionals sectioned her under the Mental Health Act when she was desperate for support. She was not living with any mental health issues. When we met she had been given a Fibromyalgia diagnosis (which, in my opinion, doesn’t exist – it’s a parking diagnosis/bullshit illness when there’s actually other things going on).

Since we met, and pushed the medical profession to take her seriously, she’d now living with:

►Hypermobile Ehlers-Danlos/Hypermobility Spectrum Disorder.
►Myalgic Encephalomyelitis (ME).
►Postural Orthostatic Tachycardia Syndrome (POTS).
►Polycystic Ovarian Syndrome.
►Non-epileptic tonic clonic seizures.
►Deformities in her left foot and leg.
►Suspected Craniocervical Instability.

There has been a noticeable worsening in her overall health over the past year, and the time for pussy-footing around this has ended.

The long and the short of it is we have taken steps, many through the private health route because the NHS is essentially useless, to begin trying to improve these conditions. Some of these have treatment options if you ignore the politically and corporate-motivated mainstream medical profession. Because essentially under the NHS, Nicola has already exhausted NICE recommended treatments, all having proved ineffective.

She has given up parental responsibility for her son for a period of time, as she is too unwell to give him the support he needs. Plus he has witnessed her ill-health from a young age and it will give him some much needed respite.

But for me, the current situation with my writing for The Canary and Nicola’s health is unsustainable. I cannot write the amount I need/want and give her the support she needs to try and improve her health. One thing had to give – and if push comes to shove it will be work.

So, to that end, I am stopping writing for a period of time.

Nicola needs my full support, and that’s what she is going to get, regardless of my ‘career’ (which many of you know was never a planned move by me, it just fell into my lap by accident, so I’m not precious about it). I have essentially been performing the role of a full time carer for over a year. I have to cook every meal, do the housework, arrange Nicola’s appointments, support her travelling to them, speak on her behalf at them, manage our finances, supervise her with a complex range of tablets – all of this while also writing around 15 articles a week, recording and editing a podcast on my own, recording the Topple Galloway show, caring for a 12-year-old child and supporting my mother who has dementia.

I am confident in both mine and her strength and abilities, but also those of the medical professionals we are now dealing with, that we now have some of the right diagnoses. But I’m also now focused on trying to improve her health if possible.

If this does happen, she can start to live her life properly for the first time. As I think with all impairments and illnesses, she has the right to do whatever she wants with her life without any pressure or anyone telling her what to do. To that end, once her health is improved, I’ll be returning full time to allow her to follow whatever paths she chooses in this world, without the pressure of the system and state telling her she has to find work. She has sacrificed enough, and been appallingly treated over the years, that she deserves to be as free as she wishes from the shackles of this disgusting system we live under.

So, that’s it. If you have story ideas please email editors@thecanary.co but I’ll still be about on social media, so feel free to tag me in things/DM/whatever.

There are a few people who I’d like to thank for the support – but they’ll know who they are. There are others who I’d like to extend a ‘fuck you’ to, as many people and groups have essentially dropped Nicola like a hot potato or betrayed her when she needed them most. As Mariah Carey said in the song Petals:

So many I considered closest to me

Turned on a dime and sold me

Out dutifully

Although that knife was chipping away at me

They turned their eyes away

And went home to sleep…

Please feel free to donate so I can continue to maintain this site.

Sending love and solidarity to those that deserve it.

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25 comments

  1. Tim Draper · February 10

    Good luck, my partner also has the diagnosis of Fibromyalgia and is suffering with some similar afflictions and is only just able to cope with the basic task of living that the rest of us usually take for granted. There are so many people suffering with auto immune and multiple illnesses that we have to reconsider the way governments everywhere give the green light to multiple chemicals and Big pharma drugs in our world without having done a collective analysis. A report out to day from multiple parts of the world shows insects ( a fundamental part of the food chain) are reducing by 2.5 % per year that further reinforces that its time for a very big change in the neo liberal, market led, captialist, multi national, and corporate domination and dicatatorship.

    Liked by 2 people

  2. Maggie Wallace · February 11

    Thank you for all of your past articles. I hope your partner makes some improvement – it’s difficult to know what to do, other than Pacing. My husband would relate to all that you do to help your partner as he has to do all that for me. He’s retired now, so I guess that makes it easier for us. Best wishes to you both.

    Liked by 1 person

  3. Graham Armstrong · February 11

    #RESPECT and best wishes to you three and your mum.

    Liked by 2 people

  4. Harry Timmons · February 12

    Hi Steve, good to see another supportive partner. My wife was diagnosed with ME nearly 30 years ago. It’s not an easy road. Look to organisations like Action ME for information on this aspect. We moved to Bristol 8 months ago and found the support of BMESG very helpfull. Lots of information on what is happening in the world of research or lack of it , or lack of good research. Look at NICE, GET and CBT in ME, totally immoral.
    Regards and best wishes for rhe future.
    Harry

    Liked by 1 person

  5. Liz W · February 12

    Love and solidarity back to both of you. I’m glad to hear that you now have medical professionals that you can be confident in, it’s absolutely scandalous what’s happening in our NHS with respect to so-called ‘medically unexplained symptoms’/ ‘MUS’. Isn’t what you described above the purposefully designed privatization of the NHS by the back door? Nobody should be forced into seeking private healthcare because the NHS has nothing to offer, or worse, because it dishonestly condemns patients as mentally ill to avoid spending any money on them. (NB Of course, there should be no stigma attached to patients who have mental health problems, but with MUS the NHS seems to be deliberately substituting mental health stigma with ‘NHS resource waster’ stigma.) The BPS School merrily teaches doctors and commissioners that outpatient clinics are awash with ‘MUS’ patients and that this is a significant waste of NHS resources, whilst at the same time forgetting to mention that the rates of misdiagnosis of MUS are unacceptably high. (Just ask Professor Sir Simon Wessely and Michael Sharpe.) The NHS is removing the safety net that guards against doctors getting it wrong – patients aren’t given the chance to return for re-investigation or a second opinion. Instead returning about their symptoms is deemed a further indication that patients are somatising and they are labelled and coded, or should I say branded, with ‘somatization disorder’ and the like so that other doctors won’t investigate them. This is an incredibly dangerous strategy that risks the health of millions of people in the UK each year….. including children, the elderly and those attending A+E. Those who have promoted this approach must be held accountable for all the pain and suffering that they have caused and continue to cause. The buck stops with them, and with one person in particular.

    Liked by 2 people

  6. Liz W · February 13

    I wasn’t intending to comment twice, but people need to be made aware of the morally bankrupt nature of psychiatry and psychology in the UK as exemplified by the PCPCS service that has been set up by the City and Hackney Clinical Commissioning Group:
    See this current NHS job advertisement – https://www.nhsjobs.com/job/UK/London/London/Tavistock_Portman_NHS_Foundation_Trust/Psychological_Therapies/Psychological_Therapies-v1550923advert

    A relative of mine is suffering hideous pain and symptoms with no meaningful help from the NHS. This ‘MUS’ (medically unexplained symptoms) project is a national disgrace. “A feeling of stuckness”? – well I wish I could stick all these psych people in the hell that my relative is going through and watch on to see how they fare with their CBT and graded exercise therapies.

    There can be no greater health scandal than when medical students and doctors are deliberately taught to ignore the physical plight of their patients. At the same time they are being given free rein to discriminate as much or as little as they choose with their armchair psychiatry. The whole UK patient population is now in danger of having their very real physical symptoms dismissed as psychological – resulting from trauma, personality disorder, childhood attachment difficulties, blah, blah, blah …….leaving our health service just for the brainwashed, prejudiced healthcare ‘professionals’ who have been persuaded to view other people – us, the plebs – who come through their doors as, first and foremost, potentially ‘heart sink’, neurotic or mentally ill. And all in the name of austerity (see Martin Knapp’s ‘Mental Health in an Age of Austerity’). For all the public money that is wasted on MUS-related psychological research there is no research into misdiagnosis rates and doctors seem incapable of marking their own work. There has essentially been NO risk assessment for this unbelievably reckless strategy. The Government must be held to account for this abomination.

    Liked by 4 people

    • Heather Hooper · May 2

      I hear that. I have chronic back pain, which is often labelled as MUS. I’m lucky, in that mine has a known cause, which is visible on MRIs and confirmed by my neurosurgeon. Or so I thought.

      In reality it makes no difference. I’m still regularly told that my pain is psychological, that my mental health problems are at the root of it, and that I must *want* to spend year after year stuck in my house, bored to tears, dulled and slow due to tramadol, and in poverty. (I mean, who wouldn’t?! Whee!)

      I don’t doubt that my mental health problems affect my pain: depression, anxiety, trauma and insomnia are known to increase neuropathic pain levels (emotions and pain are both expressed biochemically in the brain/body, after all. Joy, happiness, satisfaction, etc. are known to decrease pain levels, too.) Emotions are very powerful things! However, that doesn’t mean that I’m making the pain up, that it isn’t “real” (if you feel it, it’s real!), and it certainly doesn’t mean that I’m a malingering skiver, or (sigh) an opioid addict (thank you for that, EX-group therapy facilitator).

      I understand doing *some* MUS psych research, just in case, but putting all their eggs in that basket and ignoring the need for continuing medical/physical research is just stupid. As you say, it’s also very damaging to patients!

      Like

  7. Wirral In It Together · February 16

    Best of luck Tim. Very sorry to hear this. I’m completely struck by the similarities between yours and my own situation. We’re now 16 years into it. Mandy lost her first daughter, then aged 13 to a toxic ex, practising Parental Alienation. She then developed M.E. 12 years ago and had to give up her teaching career. She’s bedridden 5 days a week at least. We’re raising two young girls and as you may or may not know, I lost my career twice after whistleblowing and lodging a grievance at two councils and being hit in response with bogus gross misconduct charges. The good thing here was that we wiped the floor with both employers and I retired at 50 ten years ago. The pension’s not enough to survive on, so it’s freelance transcription work for me in between the cooking and the caring and the fetching and carrying and keeping the house running. You know the score. Sorry to hear of Nicola’s awful health situation and hope there’s a better situation for you both around the next corner,

    Paul

    Liked by 2 people

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  9. Mark Catlin · February 23

    Quick message just to say I wish you both the very best, I’ve always found your writing & commentary powerful, insightful and honest to a fault, hope you get the time to write sometimes, I’ll look forward to the podcasts. Much love. Mark xx

    Liked by 1 person

  10. oneoflokis · February 26

    That’s very sad, to hear that Steve. ☹️. I wish you and your partner all the best.

    Yes : when the NHS doesn’t do what’s needed… I’ve often felt I’d like to go private. But as many of the commenters on here say, that’s largely because of NHS underfunding and privatisation by the back door.. Still. I’ve sometimes felt that the NHS is rather unaccountable; and prefers its own ways of doing things, rather than putting the interests of the patient first.

    Like

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  20. Heather Hooper · May 2

    I’ve been a great fan of your work, and will miss your writing. On the other hand, Nicola is very lucky to have such a supportive and committed partner by her side! Your obvious love for her made my morning. Good luck!

    Like

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