It’s three and a half years since my thyroid was surgically removed (21st December 2011) after a long and arduous journey to get my symptoms taken seriously. I’m doing much better now, but I still mourn the loss of my thyroid every day. Being ill in AA and NOT getting the support I needed was one of the complex, complicated factors in me leaving. I was SICK TO DEATH (almost literally) of the new age idea that has much traction in AA that my physical illness was somehow a ‘manifestation’ of my inner world, of my emotions, of my ‘spiritual condition’.
By the end I was barely polite to dewy eyed AA members who waffled on about the ‘mind-body connection’ and said really helpful things like, ‘isn’t it interesting that you’ve managed to manifest an autoimmune disease, where you are quite literally attacking yourself??’
Wow! Thanks for sharing. Isn’t it? I’m sure you are fascinated! Thanks for the support!
I started openly declaring that I would, ‘punch in the face the next person who mentions Louise-L-Fucking-Hay’ (they did anyway, endlessly). If I could have ‘healed my life’ with positive affirmations, believe me, I would have! In fact, I recently burnt that book, along with every single last scrap of new age sh*t in my possession (‘Love medicine and miracles’, ‘The Power of Now’, ‘The Language of Letting Go’, ‘Addiction and Grace’, the list goes on) on a huge bonfire in my back garden. My dad watched bemused as I danced around the smouldering embers chuckling with glee.
I felt tyrannised by ‘this too shall pass’ and ‘everything happens for a reason’ – easy to say if it isn’t happening to you. You know, some people die and sometimes shit happens for no reason at all. And now you mention it, was I asking if it would pass? This helps me RIGHT NOW how? Why ask ‘how are you?’ if you are not going to actually listen to the answer??
In desperation one day, I said, in tears, ‘Why is this happening to me?’ and I got a really compassionate, ‘Why should it not happen to you?’ – Jesus, couldn’t you just give me a bunch of grapes?
Offers to drive me to the hospital, or come and walk my dog, or drop in a casserole were deafening in their absence (with one or two very big exceptions, and weirdly those that were really able to commiserate were the ‘relapsers’ in AA, those who’d failed to ‘get’ the programme, who were the flotsam and jetsom around the edges of the meetings. I was now quite firmly with the ‘losers’). What I really needed was some ‘there, there, honey’ – what I got was a lot of guff that somehow implied that I’d brought my illness on myself, or I was stuck in ‘self pity’ (note to self, sadness at the loss of your health is NORMAL!), thus abdicating everyone else of any need to do anything for me other than tell me that ‘God moves in mysterious ways’ whilst simultaneously forgetting the old AA adage that ‘God works through people’. Fuck them, right?
Without an ounce of regret I told the sanctimonious, obnoxious old-timer who took me on one side after a meeting to tell me that my cancer was a ‘manifestation of your lack of love’ to ‘fuck off’. He wasn’t quite so loving after that, shouting ‘How else did it get there then?!’ He looked a bit shocked when I gave him a little biology lesson about malignant cells dividing.
I was subjected to endless flim-flam about ‘anger weakening your immune system’ – when cancer isn’t recognised by your immune system, which is how it fools the body and gets set up in the first place. The people in CODA were even worse, I came to see – such preoccupation with endless ‘feelings’. I’m grateful to the therapist I had at the time who sagely told me, ‘If you end up like most people in CODA, picking everyone up on every little ‘boundary infringement’ and talking about ‘feeling shamed’, you’ll have no friends, everyone will hate you as you’ll be such a pain in the arse to be around’. Good advice.
I should have had a t-shirt printed with ‘Bollocks!’ emblazoned across the front. New age bollocks at every turn – Marianne Williamson, Eckhart Tolle, Neal Donald Walsh – all proffered as a sticking plaster over the complete inability of anyone around me to be actually present, to be there for me in any meaningful sense. I sat listening to these people talking about ‘growing up in public’ and ‘miracles’ and ‘the programme’ and each time, a little bit of my faith in AA and the 12 steps withered and died.
‘You will never be alone in AA’, and ‘we are your new family of choice’ (which had moved me so much as a newcomer) felt, at that time in my life, like a huge betrayal. I had never felt so lonely in all my born days. Being ill is hard enough, being ill in AA was the most unpleasant, awful thing I have ever had the misfortune to experience. But it was one more nail in the coffin of me leaving that place without a backward glance.
Fortunately I threw myself on the mercy of a talented German endocrine surgeon and diagnositician, at his private clinic in London in late November 2011. He was my third opinion and I was desperate by the the time I went behind my endocrinologist’s back and sought another view on what was wrong. With AA members’ entreaties ringing in my ears to ‘surrender to your [current, incompetent] doctor’ (WTF?) I had a bad case of self will run riot and went to see this man. Never mind ‘accept the things you cannot change’, I’ve learned to pay very close attention to the things you CANNOT accept. That instinct saved my life.
Meeting him was like breathing out after holding my breath for a very very long time. He took one look at me and one scan of my pages and pages of blood results (19 sets of results over 18 months) and said, “I don’t even need to examine you, I don’t know how you are still standing up, you are a very poorly girl indeed”. I’d been diagnosed with Graves disease and parked on antithyroid drugs 18 months before this – in fact hammered into the ground on antithyroid drugs (which block your thyroid function) – I’d gained nearly 5 stone in three months, and I kept being told I was now cured and ‘in remission’ – this I’ve since realised is akin to that famous saying of the Vietnam War: In order to liberate this village, we had to destroy it. You could saw your own head off to ‘cure’ a headache, welcome to endocrinology!
But despite being ‘cured’ I still had chronic, torrential symptoms including nigh on hysterical bouts of rage, panic and anxiety, my hands and feet were numb, my heart was pounding out of my chest, I had tinnitus and constant whistling in my ears that drove me to distraction, my hair fell out, I couldn’t climb a flight of stairs – the sorry list went on and on. The fatigue was beyond words. My wonderful freelance career which I loved turned to ashes, I was broke, fat, tired, physically unrecognisable and I used to lie in bed alternatively worrying that my heart might stop, and praying that it would so that my torment would be over.
Charismatic German doctor begged to differ with my endocrinologist (I still dust off his initial letter to him now and then, it’s such a brilliant, wry medical note that firmly puts my endo in his place) and he gave me a diagnosis that made sense of all my bewildering symptoms: Graves Disease, Hashimotos Disease, Hashitoxcosis, Thyroid Cancer, and Thyroid Eye Disease (and yup, that’s a motherf**king car crash of endocrine problems!). He immediately moved me to his emergency NHS list – I’m not generally supportive of private patients ‘jumping the queue’ but he explained I’d been badly let down, I was entitled to the care, and I really could have quite literally dropped dead, I was so ill. I was seen within days and things happened very quickly after that and I was finally whipped in for scans, ultrasounds, proper blood tests, and then surgery. That’s when they found the cancer.
If being sick was bad, losing my thyroid pretty much ruined my life – and honestly, the cancer was the least of my troubles – as I was given synthetic levothyroxine and told that was it, it was the only treatment available (I should just point out there are 5 drugs available for dandruff on the NHS and your thyroid is your MOST important endocrine gland, and we get one poxy drug, ONE option, it’s a joke!). I felt like I was going to die. My body hated the stuff – one synthetic hormone to replace the 5 my own thyroid had made was not cutting it. That prompted me to really get online and join some thyroid forums and start to figure things out. I now treat myself with bioidentical thyroid hormones that I legally import from the states – with my endo turning a blind eye – and life is nearly back to normal. If you want to know more about this, see the film by an awesome thyroid activist who was in the same boat as me: http://sick2death.com/
Despite my endo-surgeon’s conservatism on thyroid replacement hormones (too boring to explain, he knew it was bullshit but his hands were tied, like all good doctors he’s held hostage to stupid guidelines and the kangeroo court that is the GMC), he was absolutely brilliant on all other aspects of my care. And he painstakingly taught me about and treated me for systemic candida albicans (yeast) infection, vitamin and mineral deficiencies, small intestinal bacteria overgrowth, parasite, leaky gut, chronic B12 deficiency, chronic anaemia (I’ve had an iron infusion as I was so anaemic), chronic gum infections etc. By blogging with other thyroid patients I got on top of low cortisol, deranged sex hormones, oxidative stress, mercury poisoning and something called MTHFR which is a genetic defect that affects how you methylate crucial B vitamins.
It gets interesting as all of these things have an implication in ‘alcoholism’ or more accurately can mimic and masquerade as ‘alcoholism’ and indeed I’d spent a long time in 12 step therapy and 12 step programmes being told I was ‘spiritually bankrupt’ when in fact I was mortally ill. http://hypothyroidmom.com/when-thyroid-disease-masquerades-as-psychiatric-disorder/
He patiently listened as I went over and over my history, trying to make sense of what had happened to me and he kept insisting, “R__________, I’ve seen 4,000 patients like you, I’ve seen this over and over again, the LAST thing you are is an alcoholic! You have merely been trying to cope with a runaway endocrine and immune system’. You can imagine my confusion. However, I have come to understand that he was right and I am not an alcoholic.
In fact my spell in hospital sent me another awakening that set me on the path to leaving AA. The girl in the next bed to me, Sandra – I often think of her and wonder where she is now – had been a chronic heroin addict, she also had the same car crash of endocrine disease as me and he’d told her the same thing, it was like someone had given her the key to prison! She was still on a methodone script and all her lines had to go into a kind of dreadlock of pipes in her neck as she’d collapsed all her veins. You can imagine how the nurses treated her. I was still (just about) in AA at the time, and I asked her if she went to NA.
She said she had been to NA once when she was homeless and really wanted to get clean, and an old-timer guy had offered to let her ‘crash at his flat’ but once she got there he locked her in, fed her dope, kept her dope sick, and repeatedly raped her! She said she hadn’t been back. I was totally outraged on her behalf and at the sort of resigned way in which she told me this story. I knew 13th stepping went on, but this! I was blown away by this coincidence (although from what I now know about both XA and thyroid disease, it’s not all that much of a coincidence) as I’d been having such a hard time with AA. To meet another ‘addict’ with the same illness as me, here in hospital, in the same boat, telling me about predatory behaviour in 12 step. Talk about kismet. Here she was vocalising everything that had been seriously disturbing me about 12 step recovery! Funny how life works.
From talking to my doctor, we pieced my story together. My symptoms started at around age 17, maybe even earlier (I have always had the short little finger, and ‘dirty elbows’ that indicate I was born with thyroid problems). The very late onset of my periods was another massive clue (late or early onset of menarch is usually a dead giveaway of thyroid issues). Hashimotos disease is typically in play before Graves kicks in, so initially I had periods of overactivity as auto-antibodies set out to destroy my thyroid (with the resultant weight loss, high energy, racing head, anxiety, panic, fast speech, sweating, and light sensitivity) followed by periods of underactivity (with inexplicable weight gain, depression, low mood, black thoughts, brain fog, lethargy etc) – I’ve since requested my medical files and it’s all there for any doctor who was willing to look (none were).
The overactive hell of Graves disease I think kicked in in my twenties, where I was beset with panic, insomnia, night terrors, sweats so bad I’d have to change the sheets, shaking, thoughts of doom and death, circular obsessive thinking. It was around this time I worked out that if I drank enough alcohol my symptoms abated for a while. I was convinced I was mad. It’s too complex to go into here, but endocrine disease impacts the liver (where many thyroid hormones are converted) which explains my contradictory reactions to alcohol. Alcohol use also affects T3 clearance in the brain. Bingo!
By this point I’d had endless dental treatment for gum disease, impacted teeth, abcesses and infections (a big red flag) and a mouth full of amalgam (mercury) fillings, endless rounds of flu (another big red flag) and subsequent round upon round of penicillin (which damages the gut flora and permeability), I’d been on the pill for years and years to try and control my ‘hormones’ (they didn’t do any tests, just said my wacky monthly cycle was ‘hormones’ so pumped me full of more synthetic hormones!), and I’d been parked on anti-depressants (which mess up thyroid function, not that I took them much) and betablockers (which funnily enough are also used to treat thyroid disorders as they slow down the conversion of T4 into the toxic hormone T3) for anxiety.
They also eventually gave me sleeping pills for the persistent insomnia, but some nights nothing would knock me out and I’d lie awake – panicking, sweating, terrified – convinced I was about to die, watching the slow creep of dawn across my window dreading having to get up and face another day, with no other explanation for what was happening to me other than it was ‘in my head’ and I was ‘highly strung’. I finally ended up in psycohanalysis with a Jungian therapist, who, you guessed it, sent me to AA. I was too young, too scared, and too dumb to question it. You can of course understand how seductive AA’s message would have been for me when I finally washed up there, with its explanation for what was wrong with me (you are suffering from a three fold illness of “alcoholism” – at last, an explanation!) and it’s promises that all would be well if I only thoroughly followed the path.
I was recently sent this video of a TEDMED talk by Elizabeth Kenny, called ‘On a Scale of One to Ten, How Crazy are You?’ documenting her hellish journey through the American Medical System, most of all psychiatry. She presented to her doctor with ovarian cysts and they put her on the pill to ‘regulate her hormones’. From there she descended in a hell of depression and labels, including ending up in AA for ‘addiction’. Her story could pretty much be my story, except the hormone imbalance I presented with was undiagnosed Graves disease. I agree with her view, that all my symptoms were caused by the lack of adequate treatment for the presenting problem and, as happened to me too, the build up of toxicity from the all the drugs they gave her to treat her growing list of symptoms. Fortunately I never truly got lost in the mental health system as I don’t think I’d have ever have got out, some ‘addicts’ are not so fortunate. I highly recommend you watch this film: http://tedmed.com/talks/show?id=299419&videoId=500223&ref=about-this-talk
Fast forward a decade to when I’d finally been diagnosed and found a medic who took me seriously. You can imagine how all this new information and doubt played in AA. I was sick, desperate, confused, angry. I tried to vocalize what was happening when I shared. Sometimes I was told, nicely, to ‘keep coming back’ but sometimes I was interrupted by irritated old timers who said things like, ‘well I’ve no doubt you ARE an alcoholic, just listen to yourself’. Or I was told that doctors ‘don’t get it’.
At this juncture I want to digress slightly about the whole cancer thing. AA members are not alone in being seduced by new age ideas when it comes to medical issues and all the utter bollocks foisted on patients about the importance of ‘having a positive attitude’. Let me say right now, this is a big fat LIE – angry or happy, you are going to live or die based on your prognosis and the luck of the draw with your treatment and medical team.
Laying aside the fact that I think most health charities are pirates, no more than lackeys in the thrall of the drug industry, the whole ‘cancer support’ bandwagon is an extra burden placed on patients, with some poor terminal patients now being chucked out of support groups for their ‘bad vibe’. Not only have they got to deal with the indignity of illness, they’ve now got to be ‘positive’ about it, see it as a ‘gift’ (what a bit like syphilis? And you can take a gift back!). Worst still, being ill now has to be some kind of transformative spiritual experience, that turns into the ‘best thing’ that has ever happened to you.
Even the language that we use to talk about cancer patients deeply irritates me, particularly female cancer patients. Suddenly, patients are talked of in military language, we are ‘fighters’ who have ‘battles’ and we are ‘brave’ apparently. We are not living with, doing our best with, scared witless by the C word (and let me tell you, the first time a doctor utters the word ‘cancer’ to you, your bowels turn to water) – no we are marshaling the troops. Newspapers are full of stories of people ‘losing the battle’ or ‘having a long fight’ with. You can’t just get over it, you have to ‘survive’ it and you have to ‘be grateful it’s not worse’. It’s utter, demeaning, infantile, cruel bullshit.
To add insult to injury, everything to do with women and cancer is PINK! Pink ribbons, pink teddy bears, pink sashes. I hate pink! As Barbara Erenreich said of her own experience of breast cancer (which is much more serious than thyroid cancer), she’d rather be ripped to shreds by a pack of wild dogs than die clutching a pink teddy bear. I’m with her. I’ll be damned if I’m jogging around the park in a pink bloody tutu, infantilised, patronised, and indirectly told to SHUT UP about it, to be a good girl, with a ‘good attitude’. Being sick makes you ANGRY, it’s not fair, it’s not nice, its scary as hell, utterly tedious, lonely, bewildering.
Add this to trying to manage being in AA and I was a woman on the verge of getting to the point where one more ‘suggestion’ was liable to render me incapable of being responsible for my subsequent actions. I barely attended AA, I tried to hide out in CODA, I went to Al Anon and moaned about alkies with ‘bad boundaries’ until it became apparent that the same gross immaturity in AA was prevalent in every 12 step group I attended. I felt unheard, disbelieved, abandoned by long term friends, blamed for being sick, and unutterably tired. Oh, and sad. So sad.
I am grateful for a couple of things though.
First, my rebellion. That bit of me that refused to ACCEPT that this was going to be my lot. If acceptance had been the ‘answer to all my problems today’, my headstone would already be gathering moss. I’m grateful for my SELF-WILL – my self-directed determination to find a way to get better, which drove me onto the internet and got my head into a lot of science. I am grateful for my ‘self centredness’ – my life is about ME, just like your life is all about you. That’s normal, that’s right, and that’s quite helpful when your back is against the wall. I don’t want to ‘survive’, I want to LIVE.
I read Barbara Erenreich’s ‘Smile or Die, How Positive Thinking Fooled America and the World’ which woke me up to what was wrong with most ‘alternative ideas’ about positivity, particularly in medicine (and indirectly in AA), it got me thinking about ‘evidence’ not ‘feelings’. This led me onto to a book called ‘SHAM’ – How the Self Help Movement Made America Helpless by Steve Salerno which contained several chapters containing scathing, searing critiques of AA, the codependency and rehab movement, 12 step recovery and other ‘new age’ bollocks (which is what I now believe it is, a con, and a racket).
I’m grateful for the fact that a surfeit of thyroid hormones can make you angry – I just could not hold it in. My delivery at times might have left something to be desired (as anyone who has tried to live with a Graves disease patient will tell you) but by God, for the first time in my life, I wasn’t being ‘nice’ and compliant, I was saying what I thought. I said it to patronising doctors, people who tried to tell me about some new ‘third eye meditation that blasts cancer cells’ or ‘balances your immune system’ and therapists, and AA members who told me to read the book or say the serenity prayer or to stop ‘feeling sorry for yourself’.
I was very, very angry that I’d spent 12 years in 12 step fellowships being told that despite working the steps harder than anyone I knew, all my symptoms were neurotic, in my head, part of my ‘spiritual bankruptcy’ – 12 step professionals told me this as well as fellow members. One therapist told me the constant fine tremors in my hands (a classic Graves’ symptom) was ‘neurotic’ and if I ‘ignored it’ it would go away! I was angry with myself for believing it too, all that TIME wasted trying to ‘hand it over’ when I needed a skilled doctor, pronto!
I’m grateful that this process has taught me to trust myself. I’m not grateful for being sick (that would be insane! who wants to be sick?), but I am grateful that it taught me to stand up for myself, make my own mind up about things, to get rid of people in my life who were not supporting me, and to be discerning in the face of ‘experts’. It taught me to get on PubMed and read the science. For addiction, for thyroid disease, for lots of things. It has made me braver. A lot braver.
I met someone the other night – somewhere unrelated to this tale – who by coincidence had had Graves disease and had radioactive iodine ablation (which thanks the above, I’d refused), thyroid cancer, and a total thyroidectomy. This person was rather bullish, (despite to my eyes at least, looking as if they weren’t entirely restored to health either) in her defense of mainstream medicine, of accepting her lot, of having the right ‘attitude’. When it became apparent that my increasingly firm attempts to set a boundary with her was not going to put the brakes on her inappropriate, unwelcome, impolite and aggressive diatribe on what was wrong with my attitude (‘self pity’), and my determination to get back to full health (no ‘this is as good as it gets’ for me, thanks very much!) and my outrage at how poor care in the UK is for this illness (‘self-centredness’ apparently) then I was able to say, and MEAN IT: ‘I’m sorry, you don’t know me. You don’t get to tell me what’s wrong with me, or judge me, and you certainly don’t get to tell me what my reality is, I think you need to shut your mouth now’. When that didn’t work, I was able to say ‘I’m not being spoken to like this and I’m leaving’. And I did. She sounded just like a 12 stepper, and I’m done with being humiliated by people like that.
I’m darned if I’m defending, justifying, or explaining myself anymore – AA lulls us into thinking over disclosing personal information is normal, and God forbid, even healthy – and I certainly do not have to, due to some twisted idea of humility, sit there and take some ‘tough love’ speech from a total stranger.
Newsflash: love is not ‘tough’, it’s love. It’s kind, it’s gentle. I’m not broken, I’m not defective, and I’m not in need of enlightenment. Thanks all the same.
And I learned it all no thanks to AA, no thanks to medicine, no thanks to patronising doctors. I thank myself for that, and the kind, decent people I’ve met along the way on the thyroid forums and the leaving AA forums and the loving, kind ‘normies’ in my life who have cheered me along.
Now, that is a gift!