whoever you want to be…

The woman I never was, by Catherine Hughes

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.

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About catherinegracehughes

I'm a 42 year old blogger and writer from North Wales who also happens to be the mother of four children, one of whom has mild special needs. I've written for the Guardian's Comment is Free, and for Easy Living and Writers' Forum magazines, but my real dream is to publish my fiction.

6 comments on “The woman I never was, by Catherine Hughes

  1. diane
    June 13, 2012

    Hi Catherine, I related to rather a lot of this! It’s so sad that people (inc the medical profession) weren’t kinder to you in your suffering, and not surprising that you found it hard to be compassionate with yourself, considering. I’m really glad that you have a diagnosis now, though, and hope that you can be exactly the woman you want to be — although it sounds to me like there’s nothing fundamentally wrong with the one you are. x

  2. catherinegracehughes
    June 13, 2012

    Hi Diane and thanks.

    I hope there’s nothing really wrong with the person I’ve become through all this… In fact, I’m rather proud of her! But my sense of identity has been very affected by the discovery that I need never have been so hard on myself; need not have felt such a failure. It’s as if the past was distorted and is now clear – almost like history has been changed (which is, of course, impossible and therefore somewhat confusing!). Knowing that my illness has so dramatically altered the way that I look is probably my biggest issue – it need not have been so but now I am stuck with it!

    I’m facing a very long wait for appropriate treatment and may indeed discover when that road is travelled that part of my treatment (growth hormone) will be denied me due to cost. I think it’s really important for me to change my attitude to myself if I’m to survive what’s ahead, so I am having to learn that it is OK to do your best and be done with that, even if your best does not live up to other people’s expectations.

    • diane
      June 13, 2012

      Well, I hope you can access effective treatment, and sorry to hear that will entail a long wait. But I definitely know what you mean about the way you look being affected by long-term illness, that’s true for me too, and when you don’t feel you look like yourself, it’s disorienting, to say the least.

      I think part of the problem is that society encourages us to feel bad about ourselves and to push ourselves when we can’t — “invisible” illnesses are so little understood that there’s not really the language to even talk about, for example, a lack of energy, in compassionate terms. At least you see now that you’re not a failure, even if you didn’t know that before. That has to be a start!

      • catherinegracehughes
        June 13, 2012

        Funnily enough, I was discussing today how there are no terms of reference that I can use to describe what I experience. The nearest I can get is to say that I wake up with the worst hangover imaginable, or to explain that I often feel as if I have flu, but without the sniffles or temperature. As you say, the language just isn’t there.

        I have become almost defiantly proud of my achievements since learning of my diagnosis. They may not be published, but I’ve written six novels and significant portions of several more. I always knew I’d done well, but never felt that I could expect anyone else to appreciate that. In many ways, it’s been like playing a role as a method actor – there was always a small part of me that knew I shouldn’t feel so bad about myself, but I was totally immersed in my role. These days, of course, that small part has become the bigger part of me – and vindicated is an amazing feeling!

  3. keatsbabe
    June 15, 2012

    Have come to your blog via a retweet on twitter and so pleased to have found you. You are right to challenge the medical profession to make sure you get a correct diagnosis. I have Drs to thank for my life and I have huge admiration for them but they aren’t the ones living in the body that feels as if it is in a constant battle with itself. Well done you x

    • catherinegracehughes
      June 15, 2012

      Hi and thanks for the comment! I should stress that this isn’t my blog but a collaborative one, although there are links to my blog within this post.

      It does feel like a constant battle, not just to cope with the illness but also to stand up for myself. And, unfortunately, it’s not over yet! But, at least, there is now a light at the end of the tunnel.

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