What next? What can I do that will be most powerful?

Thinking about some of the thyroid related things I would like to do once I've stopped running the BTF London Group.

While I need to move on with my life and don't want to be forever harping on about all things thyroid, I still feel passionately that it's important to raise awareness of thyroid disease and things that people can do to help themselves, also to raise standards of care for thyroid patients who are currently not always being treated consistently or well.  And while I salute BTF for all that they do, I feel there is scope for a great deal more to be done and as they are so under resourced and seemingly so slow to get themselves resourced up to do more, well it just seems like there's a glaring gap that needs to be addressed, so maybe I will give myself a project....

Will I:

• Write a book? 
• Pitch articles to magazines and periodicals?
• Pitch talks to groups of medical professionals?
• develop this blog as more of a resource?
• collaborate with a science writer to provide more articles on latest scientific research?
• Seek to influence Mind (the UK's leading mental health charity) to start to provide more information and support for thyroid patients, because they currently don't think it falls within their remit?

Ouch, so many possibilities, I could in fact quite easily spend my entire life on this stuff. And that's not going to happen. So I have some thinking to do and some decisions to make, what to do, what not to do, where to focus.

In the shorter term I am off to the House of Lords next week, to meet with my fellow BTF London Team of volunteers, kindly hosted by our wonderful patron, Lord Borwick of Hawkshead, who is also taking us on a tour of the House which will be exciting.

We will be seeking to find a way to keep the London Group going with me not running it any more. I am excited that nine enthusiastic and wonderful people are coming to that meeting, between them I'm sure they'll find a way to prevent the group from folding. The challenge is that everyone is either not very well, or super busy, or both. But the plan is to try and split the tasks so the load is shared, and perhaps to do things differently in future so that the whole thing can maybe be simplified and become less onerous to do.  

The House of Lords, Westminster

It's a little  ironic, to be going to such a seat of established power as the House of Lords and at the same time trying to decide what subsequent action I can take that will be most powerful in the face of what seems like an overwhelming challenge - how to make things better for hard to treat thyroid patients in this country.  I hope that this meeting can be a catalyst for meaningful change, somehow, someway. It signifies me moving forward powerfully into the world. Giving up the admin headache of running the group and freeing myself up to do something bigger.

Of course I may decide to leave thyroid things alone for a bit. I have a lot of other things going on in my life. Very many competing priorities. I may decide to focus on something else entirely. Perhaps my letting go of the group is also time to let go of the wider challenge and trust that other people are going to be able to bring about the changes that need to happen.  The BTF Hypothyroid Care Strategy Project is underway now after all, and I was one of the people who pushed for that to begin.

One of the many wonderful friends that I have connected with on this journey now seems to have entirely moved on and is pioneering an important campaign for muslim feminists. Her example inspires me. I feel I need some space to think and breath and the answer, to the question of what I want to do next, will come to me.

Hope

Patient Voices on Psychological Wellbeing, May 2013

"I could talk about psychological wellbeing all day on this lovely couch"

The previous post introduced the Patients Voices meeting we held in London on 11th May. This post shares the notes from the breakout discussion group which looked at Psychological Wellbeing with a thyroid condition. 

With many thanks to the participant who has kindly typed these up and included the links to the two articles which help illustrate some of the points the group explored.

Psychological Wellbeing, Discussion Group Notes:

We talked about coping strategies people have for helping manage their psychological wellbeing with thyroid conditions.  

One person has been on anti-depressants for just under 6 months and it has transformed her life.  She did have adverse effects the first couple of weeks but was warned about this by her doctor and stuck with the prescription.  One interesting note is the antidepressant has a warning note it should be not be given to thyroid patients but the doctor is still prescribing the medication. 

A couple of people talked about concerns if long term lack of treatment for thyroid conditions might affect brain function generally.  Some in the group had suffered untreated for years, they think in hindsight. 

Also when the doctor does realise there is an issue with the patient's thyroid, they don't say enough about coping with how people may FEEL with this condition. 

There was a bit of a discussion about the differences people are feeling between overactive and underactive thyroid conditions, but we didn't talk a lot about that, and I don't have any detailed notes about it.

One person talked about her issues with general physical weakness.  She talks a lot to herself to keep her spirits up.  Also she's learned to pace herself to bank her energy.  

Working and raising children is an added stress.  If people have the opportunity to not work, then they can rest more during the day.  Also if you work, you'll try to hide your symptoms from co-workers which is an added stress.

For many, there was a feeling of years wasted.  Too often people compared themselves to others and thought they hadn't accomplished as much.  One person keeps a journal listing anything she does and completes.  She refers to that to help her realise she is getting things done.

I mentioned research I've seen in the past where the human brain is wired to remember negative experiences much more prominantly than positive experiences. The theory is this goes back to caveman days where that memory trait helped people to survive.  One way to combat this bias is to keep a scrap book of positive things you did or experienced. That way you can read that to balance out your memory better.  I can't find the original article anymore, but here's 2 articles on the internet I found just now that indicate similar technique:

Article One - Journaling and sharing can enhance happiness 

Article Two - The memory bias

 Someone mentioned that coping techniques generally for any chronic illness can be useful, so don't just look for articles about thyroid conditions.

Relaxation and exercise are really helpful to people in the discussion group.  Also breathing and meditation were found to be helpful.  Trying to 'be in the moment' was good too.   I mentioned some research I've seen that walking and getting outside in nature is really good for health and mental wellbeing.  There's research indicating the effect of walking can be equivalent to taking antidepressants.  Also a friend of mine and I realised as part of losing weight that the biggest battle with exercise is getting out the door initially.  Once you pass that hurdle you do exercise like walking and you enjoy it - even 5 or 10 minutes is good.  So we thought you have to do whatever you can to facilitate getting out the door - like keep your walking shoes and exercise clothes handy/nearby the door.

Coming back to doctors, people said that doctors generally don't explain enough what could happen with regard to thyroid conditions.  They don't seem to pool knowledge.  Also advice is not holistic - you have to advocate for yourself.

It's also variable how people's conditions are picked up correctly by doctors.  With some patients the doctor figures things out quickly and with others they wait years for the condition to be recognised correctly.  It also makes a big difference if the doctor is supportive. 

There seem to be lots of different opinions amongst different doctors and also lack of follow through by doctors on other related health issues.

When doctors more clearly say what's happening or what to expect with the condition, then the patient feels more psychologically stable because they understand more what is happening to them. 

Sadly  some doctors  don't seem to be concerned about quality of life for patients with thyroid condition.  Also thyroid conditions are not viewed as a major illness. 

Lastly, it was noted that the group on Saturday is really rare and very treasured by attendees.

Thyroid talks

I've spent the last few days looking for a speaker for our next British Thyroid Foundation information event in London (3rd March). Last year we asked attendees what topics they would like us to cover in the future.

Here are the results of our poll:

What topics would you like to see covered in future events?

How get the most out of your doctor when you have a thyroid disorder – including power questions you can use, 19 votes

Nutrition and thyroid disorders – listening to and knowing your body, 16 votes

Mental health and thyroid disorders, 13 votes

Thyroid disease and bones (confirmed topic for 15th October event), 9 votes

Patients sharing their stories, 6 votes

Thyroid facts and fables, 6 votes

NDT (natural dessicated thyroid) research, facts, fiction, why do the USA use it and not us?, 5 votes

Thyroid disease and pregnancy, 3 votes

Thyroid Surgery, 3 votes

Thyroid Cancer, 2 votes

Radiology, imaging and the thyroid – radiology and imaging innovations are at the cutting edge of medical research, 1 vote

So, in response to this poll, we were looking for a speaker to cover the most voted for subject: how to get the most out of your doctor.

We also wanted to get someone to talk about cognitive behavioural therapies and techniques  (CBT) that thyroid patients can use to help us manage our conditions. We felt the two topics could potentially sit well together.

Suprisingly, while there are specialists who use CBT to support patients with chronic illnesses there doesn't seem to be anyone who is a thyroid specialist doing work in this area or focusing on thyroid and mental health issues. Not that I've been able to find so far anyway.

I speak to quite a lot of thyroid patients these days and so many of us share the experience of struggling with our memory, sometimes our emotions and often our ability to think clearly. A lot of people are very concerned about these symptoms and often they don't know that they are not alone in experiencing them. Just knowing that other people have similar experiences is in itself enormously reassuring for many people.

I've heard an endocrinologist say that he and his colleagues see thyroid patients as a "difficult bunch" because they can be over emotional and snappy in consutations.

Frankly I'm surprised that there isn't more medial support for this aspect of the illness. 

I left my last job because my brain just wasn't working the way I needed any more, to be able to continue to function in a demanding work environment. More than twenty years of building a career that was important to me has kind of gone down the drain. I'm lucky, my adorable husband is able to support me and I've regained sufficient mental capacity to be able to now do some  interesting paid work again on a freelance basis. I don't have children so when I'm tired or feeling foggy I can just rest.

I'm incredibly lucky. But there are people out there who are not so lucky, who are seriously impoverished and in many cases desperately unhappy as a result of not being able to work because they can't think straight and / or don't have the required stamina.

Personally, as well as being in good circumstances (which I'd just like to point out I have created for myself I wasn't born with any silver spoon in my mouth, far from it), I've found that I have been able to help myself a lot by practising cognitive behavioural techniques. Being aware of how my mind works and the impact of what I'm thinking and doing on my wellbeing, thinking and acting mindfully. Eating well, exercising, getting fresh air, not dwelling on anything that upsets me too much (because I've learned how exhausting that is!).

Like anyone else with a health condition I'm highly sensitised to the suggestion that my symptoms, particularly fatigue, could be caused by my mind. It's an outrageous and offensive suggestion and doctors need to learn to be super careful about how they broach the subject of the mind body connection. However I recognise that I am both a mind and a body and I've seen powerful demonstrations of how the two elements are bound together and can have extraordinary impacts on each other. I like the idea that I can help myself in some ways and I understand that my body is a complicated entity with potentially more than one cause and more than one possible solution when problems arise. So I'm open to this stuff.

Lots of people aren't though. Mental health issues and labels are scary. People are afraid of talking, doubt that it can help them, see it as a diversionary tactic by the  medical profession. Understandably in many cases, following years of misdiagnosis and mistreatment, some thyroid patients are highly suspicious of the medical establishment. This is so wrong!

We need doctors to be able to help us.  We need acknowledgement that our illness can affect our mental capacity and we need advice on how to handle this and what we can expect with optimal treatment. And we deserve the best possible treatment to return us to the best possible state of health so we can be contributing members of society and not have to live our lives on the sidelines.

We don't want much!

It seems that research and specialist treatment in this area is very limited.

I'd love to hear from doctors who treat patients with thyroid disease. Do you find thyroid patients difficult sometimes? Do you consider that their illness could be making it difficult for them to communicate effectively with you? What do you think patients could be doing to help themselves get more out of their consultations with you and your colleagues. What are the best questions you've ever been asked by a patient and why was it so effective? What do you think is the best way to address the mental health and cognitive function aspects of thyroid disease, or is it something you basically ignore and don't see as relevant?

And I'd love to hear from patients, what do you think of this topic and what else would you be interested in learning more about, in relation to your thyroid disorder? If you're in London you can come to our information events and help shape the programme by saying what interests you, shall I set up a poll?

Thanks for reading, I'll let you know next time who I've booked as a speaker for Marchy. As long as we have breath we have hope.

:)