I still can’t quite believe it.
On 28th March this year, I learned that I have the brain disorder hypopituitarism. I’m deficient in (at least) two vital hormones – ACTH (which, in turn, stimulates cortisol, the hormone essential for life) and growth hormone.
The disease causes a whole host of symptoms, which can vary from patient to patient. For me, weight gain (exaggerated because I also have hypothyroidism), exhaustion, hair loss, depression, memory loss, emotional lability (lack of control) and near-constant nausea have been the very worst of them.
Given that the most likely cause of the disorder is a small brain tumour in my pituitary gland, I imagine that no-one would be surprised to learn that, more than two months along, I’m still adapting to the news. It’s pretty serious stuff, this diagnosis.
Except that it’s not the diagnosis that I’m struggling with. I’ve known what was wrong with me for a while; was mentioning hypopituitarism in posts on my old blog in June last year and researching it for some time before that. I was ready for this.
No, what I’m struggling with is different.
For most of my adult life, you see, I’ve believed myself to be a failure. A disaster. Unable to hold down a job for any length of time – my longest post lasted six years but was punctuated by several very long spells of sick leave – I agreed with my family and friends when they told me to ‘buck my ideas up’ and ‘get a grip’. I listened to the doctors when they told me that I was ‘merely depressed’ and I took the antidepressants they gave me. I wrote myself off as lazy and stupid – frankly ridiculous in my inability to stand up and shoulder my burdens; to just bloody well get on with it!
I have spent my whole life feeling that I was a loser. I tried and I tried and I tried to pull myself together, but I could never quite live the life I thought I should have been living. And I hated myself for that.
Nevertheless, underneath it all, there was fight in me. I took up sport in a bid to control my weight and kept it up insofar as my wildly fluctuating energy levels would allow. I learned to pace myself and to take pride in what I could achieve. I sought to build a career around my ability to write – something that gave me pleasure, distracted me from my ghastly symptoms, and could be done mainly from home. I began to research: rare forms of hypothyroidism; other endocrine diseases such as Cushing’s Syndrome; not-fully-understood metabolic issues like leptin resistance. With the help of my ever-supportive GP, I kept pushing to see another endocrinologist and yet another. Somehow – and, to be honest, even I am not sure quite how – I refused to give up, although there were times when I thought that I had.
I felt that I was a hopeless case but I also knew that there was a reason – had to be a reason – for my incapacity. I knew that I was ill – and with something other than ‘mere’ depression (I’m quoting certain doctors’ dismissal of the impact of mental illness, quite opposite to my own view).
And now we all know. Whilst I have more diagnostic hoops that I must jump through, we are pretty clear – my latest doctors and I – on how this is going to go. I will be started on a lifelong course of steroids and growth hormone; I will be monitored carefully; I will be looked after and – finally! – understood.
It’s taking a long time for me to adjust; to see myself not as the person I thought I was but as a fighter and, ultimately, a victor. Not as someone who simply couldn’t get her act together, but as a woman who achieved a great deal in spite of the fact that she was operating under the appalling disadvantage of long-term, significant, endocrine failure.
The ramifications of being right all along are huge and somewhat overwhelming. Hollow grief for all that I could have been – for the woman I never was – wars with spirited euphoria at not only being right but at having mustered the strength to prove it.
I’m still incredulous. After all this time, the despair and the frustration will soon be over. At long, long last, we know what is wrong with me and I’m not, and never was, a greedy, lazy fraud. I’m something entirely different.
The disease itself I can handle. Coming to terms with how it changes my perception of the person that I am and was…
That’s taking a while.