Friday, 10 June 2011

Defining and redefining moments

Today I had to write a profile for myself to go on the British Thyroid Foundation website. I'd been putting it off for some reason. I realised I just didn't know what to say about myself. It's not that I find it hard to write about myself, partly it was that my brains have been a bit foggy of late, so sitting down to any task has felt like a challenge, but it was more that I just didn't know what to write.

Obviously I've written a profile for on here and that didn't feel difficult. I think somehow, because this was going on an organisation's site and it was about me in my specific capacity as co-ordinator for London activity for the charity, it felt like almost a work thing. And when I've written about myself in a work capacity before it's been very different to this. It's been all, Lorraine has 20 years experience working with top brands blah blah, specialist this, professional that, media, pound signs, business babble.

I said to someone on twitter that it was difficult because since the illness I'm unsure how to define myself. And someone else piped in that it is about REDEFINING. Ah yes. And I've got my head round the fact that I need to redefine who I am and who I'm going to be in the future. It's a work in progress. But today just felt difficult because I had to define who I am right now, in relation to what I'm doing for BTF and why.

I started by reading the other profiles of the other local co-ordinators and they were very inspiring. What a fantastic group of women, all of whom have been doing this longer than me.

This is what I wrote in the end:

"I was diagnosed with an underactive thyroid in August 2009 and soon after it was confirmed that I had thyroid antibodies, meaning the cause of my hypothyroidism is autoimmune disease – Hashimotos.
At the time I was pleased. I expected that the diagnosis and resulting medication would mean that the fatigue issues which had plagued me for years would now be resolved.  That’s what my doctor hoped too. 
However I soon felt worse, not better and I had to take time off from the job I loved, as a corporate fundraiser for a leading cancer charity. I was off for almost 4 months, my health completely collapsed. After over 20 years working in a fast paced career, I had always managed to be successful and overcome any difficulties in my path. It was a massive shock to the system to find myself so debilitated.  I couldn’t think straight, I was tearful and exhausted. It wasn’t like me at all,  I have always been dynamic and upbeat in every aspect of my life and for years I had done my best to ignore the creeping feelings of fatigue which turned out to be the early stages of thyroid disease. Frankly, when I got very ill it was frightening.
Before I’d been diagnosed I didn’t even know what a thyroid was. I set about trying to educate myself, trying to understand what was happening to me and what to do for the best to get better. I soon came to realise that I couldn’t believe everything I read, particularly on the internet. I needed a source of RELIABLE information. I also longed for somewhere I could meet other people with thyroid disease, to learn from them and for mutual support.
The British Thyroid Foundation telephone support volunteers helped me a lot and I was pleased to also discover the recommended reading list from the charity but I was astonished that there wasn’t a BTF support group in London. I vowed that as soon as I was well enough I would start one, because I think it’s so valuable to be able for thyroid patients to be able to meet and connect with each other and to be able to have talks and Q&A sessions with leading endocrinologists.
Medication adjustments and referral to an endocrinologist for specialist treatment have slowly improved my situation considerably but it has taken a long time and I am still not as well as I hope I can be. I also now attend a specialist fatigue clinic and I continue to do my best to feel as good as I can with a healthy diet, gentle exercise, meditation and a positive mental attitude.
As well as volunteering with the BTF I help run a meditation group in Camden Town, it’s free to attend and everyone is welcome so if you’re in the area, do feel free to come along to that: I will also be starting an Expert Patient Programme course at the end of June 2011, these courses are free too and teach how to manage a chronic health condition.
My career experience, in marketing, communications and fundraising, has been useful in getting the new London group set up but I know I need to be careful not to take too much on. At the end of last year I decided to leave my job to focus on getting my health back on track.
I’m lucky to have the support of a fantastic and enthusiastic group of fellow volunteers, we call ourselves the London Team and we are keen to support further BTF activity in the capital so if you would like to get involved to support what we’re doing, or if you have ideas of your own you need some help to make happen, please get in touch!"
I've submitted it now so hopefully it's acceptable to the charity and will go live on their site soon. Have you found it challenging to redefine yourself with a chronic health condition. Have you had an experience like this where you've had to state clearly who you are and you've felt a bit lost for words! It seems like a changing sense of self is something of a common theme for some of us with thyroid disease, if the conversation on twitter is anything to go by! I'd love to hear what you think.

And do you think the profile works? What else would you want to know, or have I said too much? Let me know!

Thanks for reading, it means the world!


  1. Totally know what you mean - I am struggling to write my thyroid blog and put into words what I felt less than 2 years ago but who I am now is not the same and never will be again. I hanker after the energy and vitality of the person I used to be and the words - my fogginess has left me without the descriptive skills I once had. How do you define who you are anymore when you cant remember the words and you change every day never being anywhere near the person you once were! Denise

  2. Hi Lorraine,

    Writing this profile was a good exercise for you I think. Starting to redefine yourself.
    But are you really so different now?.

    I read your profile and think not. Your are still giving your talents and energie to a social cause. All your talent are still there. Maybe even some new ones you found out about during your illness.
    Your are still the same, but with a thyriod problem.
    I am not trying to say that it is easy to have this illness. Or that having a chronic illness doens´t change your life. It does!! But is doesn´t automaticly change who you are.
    I find that the challenge is to know that you are still the same and redefine the way you can put yourself to out there in the world. And make a contribution in a workplace, in friendships, in charity etc.
    I read your blog and think, wow, that´s a cool woman! She is doing a lot!! Be proud, help yourself and others! And keep sharing. That´s what i love about the internet. Us Dutchies can benefit from your experience and hopefully the other way around.

    Anyway, this has turned out to be a long reply. Actualy I just want to say: I am impressed with your good work and keep it up! And I do recognise myself in your story. I am also finding my new way, redefining in progress!

    CU on twitter,

    PS I would like to know more about what you have learned in the fatique clinic and all the other things that made you feel better?!

  3. Ah! Finally! I've been able to think of a comment...I knew this post couldn't beat me...LOL! I can't not reply...that wouldn't be like me!

    I didn't know you were in marketing and communications...I am too (well, I will be when I graduate)!! That's cool!

    BTW, One of the reasons I love reading your posts is because I think you're totally freaking amazing! You're doing so much to help others; being involved with the thyroid foundation, blogging about everything thyroid (you're braver than me thyroid isn't coming into my blog just yet!)...all while learning yourself and doing the everyday things that life involves. With me still suffering quite badly with thyroid I look at you and think "wow, there is hope!" You're my inspiration sometimes! :)

    Looking forward to many more Twitter conversations! xx

  4. Totally agree with you about "redefinining" yourself. I was totally lost for two years post-diagnosis. It's hard to integrate the "thyroid" part of your life, and to accept what your new life will be like, it takes time to adjust.

    Great post, and I love what you wrote :)
    It really is quite similar to my story; I had no idea what a thyroid was, and I had some a niggling feeling something may have been wrong with me, but I always just brushed it off and carried on really.

  5. wow, what lovely comments, thank you guys!! One of the best things of all for me about this blog is when other people tell me they can relate to the weird stuff I sometimes think and feel!

    It does rather seem as though there are a fair few of us in this boat we're in - it's good to hold hands, in a virtual way at least - and know we are less likely to sink while we can see that none of us are alone!

    Hippie I'm so pleased to hear it took you two years to feel less totally lost. I will be two years in August. I know I'm getting there and having so many great connections like you, Carla, Denise and Natalie to learn from and share experiences with makes the journey so much less scary!

    I'm smiling so much after hearing from all of you. :))