Saturday, 17 September 2011

Explaining Invisible Illnesses

I had a typically frustrating and hurried visit to my doctor this week. He's normally quite good, but a lack of empathy and understanding does sometimes come across. I wrote him a letter this morning, which many sufferers from invisible illnesses, such as ME/CFS, anxiety, depression or chronic pain may be able to relate to. I haven't decided whether to send it yet! Anyway, here it is...

Dear Dr -

Thank you for your help and support yesterday regarding my concerns about my anxiety and diazepam intake, and also for reassuring me about the other matter. I’m very grateful and in fact I was a lot less anxious yesterday as well!

I appreciate you as a doctor and all the help you’ve given me and the work you do. As you know, however, I sometimes feel frustrated by an apparent lack of empathy and understanding of me and my chronic illness, and I felt that way yesterday as well.

I readily admit to having difficulties sometimes in managing my anxiety, and that my fear of anxiety feelings sometimes encourages me to take a diazepam tablet for the sake of immediate relief; that was why I came to you yesterday for help and support. As you said, I am not addicted but the drug needs to be managed carefully. But that doesn’t mean that I don’t try my hardest to manage my anxiety in every other way I know as well. You suggested that I use distraction; well, I do that as much as I possibly can! I mean, I have a book to write! I love music, watching tennis, doing photography (landscapes and animals, mostly), socialising when I feel up to it, having sex when I can, playing with my cat, breathing in the fresh air of the downs, paddling or even swimming in the sea when I’m able to… I also practise meditation and relaxation and breathing techniques that I learned from a charity supporting anxiety sufferers (these same techniques also help my chronic pain, and were a vital part of the pain management programme I attended this summer). I do everything I can to manage my anxiety constructively and to try and get better. Yes, the temptation to take diazepam is there and I may give into it a bit too often at times. But I am the one who has to live with a condition which frightens me and causes great distress at times. And I feel sometimes that you don’t always give me enough credit for what I do to help myself which such a difficult condition. I have several friends who manage worse! (although as a fellow sufferer I fully appreciate the difficulties they face and that their anxiety is more severe and disabling than mine).

Perhaps it is partly because, when I come to see you, I tend to be worried about something and therefore come across as quite negative. Maybe I seem passive and not always giving myself enough credit, so you don’t see that positive side of me. I did however explain all this to you in an earlier, longer letter which you kindly read.

I also feel a need to correct a possible misunderstanding of yours regarding my ability to get out and exercise. I’m quoting you as accurately as I can remember. When I said that it’s more difficult for me to distract myself by going out and exercising because of my frequent need to rest, I think you said: “There’s always a reason. In my case it’s because I’m working. In your case it’s because you get a little bit tired.”

If I was a sufferer from ME I would probably feel insulted by that! But Dr -, I do not suffer from fatigue and I am generally no more tired than most people. I actually have a lot of energy and wish I could do a lot more than I presently do – as indeed I always did in the past. I often feel resentful of my frequent need to rest, which results not from chronic fatigue but because I have a chronic pain condition! My resting is not due to laziness or lack of motivation but because I am trying my best to follow a pacing programme which I learned years ago from an expert in managing chronic pain. The leaders of the pain management programme I attended taught the same thing: little steps forward, a gradual increase in activity interspersed with rests when needed to avoid incapacitating flare-ups. My chronic pain is only severe during flare-ups, but it is disabling at present because there are limits to what I can do. Those limitations are not due to being tired! I am not tired, I am not fatigued, I have a neuropathic pain condition which is notoriously difficult for anyone to manage.

It’s possible that I’m over-reacting to your comment, because I hear so many similar comments elsewhere. If that is the case, then I’m sorry. I don’t usually hear them from health professionals, however, and I think that’s why I find it especially frustrating. Please excuse me if I am over-reacting but I kept thinking about it yesterday and it really affected my mood quite badly.

I am writing this, really, not just to get things off my chest but because I believe it might be helpful to you in understanding my condition and situation. I hope it does not bother or offend you that I’m doing this. I do appreciate your work as a doctor and you have of course been very helpful to me over the years.

I also understand that you must have a huge number of patients, and that it may be difficult to remember what I have told you in the past and therefore the details of how I manage my condition. I fully admit to my difficulties sometimes with medication and that I need to be a bit tougher with myself sometimes, as well as the fact that I have never yet really been able to overcome my fear of pain and anxiety and therefore my tendency sometimes to need a ‘quick fix’. I was badly traumatised by my experience with anxiety three years ago, and would do anything rather than go back to that. But because of that, I also do much that is positive and constructive, especially as I have two difficult conditions to manage, both of which tend to worsen or trigger the other.

Thank you for reading this, and I hope you understand and accept my reasons for writing to you about this.

With best wishes

Michael Bentley

Friday, 29 July 2011

Love Letter to Myself

I do hope this doesn’t make anyone feel like puking. But I got this idea from another blogger, and due to a recent painful experience I really need it now. And I can recommend it to anyone whose self-esteem needs a boost! How often do we criticise ourselves each day? Writing a love letter feels a lot better, I can tell you!

Dear Michael

Your self-esteem has taken a vicious blow recently, so I know you need to know how much you are loved. I want to tell you that you are very special to me, and that I know you are a good person. I should know! – I know you better than anyone else does, because I’ve lived with you every minute of every day for forty-five years! You may not always feel or believe it, but you have some special qualities you can be truly proud of. I know how kind and supportive and empathic you are to your friends. How much you are willing to listen and care and understand when they have precious few people in their lives who are able to do that for them. I know how sensitive you are: how this makes you vulnerable to hurt, but also sensitive to the hurts and feelings of others. I know how intelligent and creative you are, and also how playful; while perfectly capable of speaking and behaving as an adult, you are not ashamed of your inner child and your capacity for play. This too connects to your love of animals, which was with you throughout your childhood and has recently been revived. I know how much you care about the myriad forms of life on this planet, and the dangers that threaten them – and how you see humans as an integral part of the ecosystem with a unique responsibility towards all species. I know how much you care about peace, justice and human rights, even though your willingness to fight for these causes has led to emotional suffering in your own life. That this too is a part of your sensitivity, and of the anger you feel towards those who persecute and destroy. You are not afraid of the stigma that so often comes with mental distress or illness, and are willing to admit your vulnerability and share it with others. Not only have you had to deal every day with some very difficult circumstances over the past seven years, but you have come through the worst time in your life and are now endeavouring to share the benefits of your learning experience with others, with the aim of reaching out and helping others with similar problems. And you are trying to be honest and real in your relationships with others, despite difficulties you’ve had all your life which have made it hard to show your true feelings in so many situations. I know how much you are trying to grow – away from the pain and fear of the past and the pull which it has on you, and into someone who can admit to fear and vulnerability but still develop new and stronger resources for your life in the present and future. You are always searching for new ways to look after and respect yourself and all those around you, through your growing holistic view of health and well-being, your willingness even to investigate one of the world’s main religions (you, an agnostic!) because you believe in love and kindness and compassion towards all. You are sometimes all too painfully aware of your shortcomings, and this too makes you vulnerable to the effects of those who can use that awareness to hurt you. But you are learning to develop kindness and compassion towards yourself, and in support of that I want you to know that I like and love you anyway. None of us is perfect and you know that all too well, but I see the good in you clearly and I love you for who you are.

Michael, you love beauty and wisdom and I can see that too, so clearly. You love art and nature and science, with its attitude of vulnerability and willingness not to assume the truth but to keep on testing, questioning and opening up to new uncertainties. You love the beauty of women, and your sexuality is passionate and open and full of longing. And you love the earth and the other planets, and all the wonders of the universe that lie beyond. You love the fact that the cosmos is vast beyond imagining, and that whatever humans do there is a vastness that they cannot touch. But you still love humanity and life on earth, even though you struggle with pessimism and fears for the future. You are a caring person and I love you for it.

You know you have shortcomings, but you feel them all too painfully at times. Remember that the only people who have deeply hurt or been cruel to you in your life (including this latest attack, which caused you such pain because it was by someone you’ve cared about so deeply for so long), are people who were abused themselves and were probably acting out their own suffering. They are also people who didn’t know you well, like your friends know you, like Sally knows you, like Angie knows you, and like I know you. All those who really know you, appreciate you for who you are, without idealisation but simply acceptance of what they see of your self. There are far more of these people than there are of people who’ve hurt you, and they know you far better. You can trust their judgement, as you are gradually learning to trust your own.

Not only do I know you best, but I love you too. I will help you uncover the parts of you that you’re afraid of, that you have always found it hard to express or admit to. And even when you find parts of yourself that you don’t like, and that others criticise you for, I will still love you. I will be by your side and inside your heart at all times, and help you through every difficulty and crisis. I love you. And I know that you don’t have to idealise in order to love yourself. You are okay. You can trust yourself. And you will be fine.

Just trust.

Thursday, 14 July 2011

A Life True to Myself

For the past few weeks, as some Facebook friends will know and for reasons which are too personal to go into here, I’ve felt intermittent but sharp pangs of ‘iPad envy’. At times, though I know it’s ridiculous, it’s been quite a strong feeling. “I must have an iPad! I wish I could afford an iPad! Can I find a way of affording an iPad?” And even the additional complication of envy for someone I care about: “So-and-so can afford an iPad – they have such a successful career and comfortable life and they can afford an iPad and an iPhone and God knows what else and IT’S NOT FAIR!!!!!

In my case, although I do have a fondness of electronic gadgets and mini-computers, my hankering for an iPad is based on an association with something far less mundane, so it’s not quite as pathetic as it sounds. But even so: when I reach the end of my life and look back at whatever regrets I have (and I expect there’ll be a few!), will my lack of a soon-to-be-obsolete piece of hand-held technology be one of them? Will the absence of a high-flying career, ‘successful’ in society’s terms, be one of them either?

Probably not.

Yesterday, a Facebook friend posted an article by Bronnie Ware called ‘The Five Greatest Regrets of the Dying’ ( Don’t stop reading now! – it’s not morbid, honest! Bronnie Ware used to work in palliative care with people who had gone home to die, and during her work she learned the commonest regrets which they typically had in the last few weeks or months of their lives.

These were:

1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.

2. I wish I hadn’t worked so hard.

3. I wish I’d had the courage to express my feelings.

4. I wish I had stayed in touch with my friends.

5. I wish that I had let myself be happier (this was the ultimate realisation that happiness is, to a far greater extent than commonly realised, an attitude).

On a personal level, the two regrets that leap out at me the most are the first and third. That’s because they are both aspects of living that I’ve always had profound difficulties with, both aspects that I’m working through the most in therapy. Like many people, I experienced both subtle and unsubtle pressures while growing up, to conform to certain expectations of how I should behave, what kind of ‘career’ to go into, even (subtly) how I should feel – and of course I’ve continued to experience those pressures, not least from myself. It’s not unrelated to the third regret: I wish I’d had the courage to express my feelings. Only now, in middle age, am I learning to be more authentic and free in my relationships with others. Many of the biggest regrets I already have are because I couldn’t bring myself to express my feelings to (and for) others, in life situations where doing so might have brought so many positive things into my life, and much sooner.

What strikes me too about these regrets is that they have little or nothing to do with what society, the media, the government, or our peers, tell us we should want most in our lives. We are told to work hard. We are told to buy more things. We are taught that we are worthy if we earn a lot of money, have a lot of expensive things, and are young, desirable and have lots of sex. We are certainly told that we should be happy. Yet even this is sold as something which is dependent on our having other things (money, products, sex appeal, sex). We are not so often told that happiness is an attitude – unless it’s along the lines of “cheer up!”, “smile!”, or similarly (un)helpful encouragements.

None of these regrets have anything to do with the iPad, the iPad 2 or any other very expensive piece of plastic with a tiny piece of hi-technology inside.

Ware’s article, far from being morbid, was for me both a comfort and a wake-up call. It’s comforting to know that some of the things I want so much currently, as well as the status anxiety that often troubles and preoccupies me, are things that will probably seem very insignificant in the last months, weeks or moments of my life. And it’s a wake-up call because it’s never too late to start trying to live authentically and honestly – but the sun is getting lower, all the same!

I’m forty-five years old. My partner is fifty. Neither of us are old, but then we’re no longer that young either. And I already have so many regrets about my teens, twenties, thirties, and even about the present. I have chronic health problems which make it much harder to achieve some of my dreams, to live the kind of life I so much want to live. But things like valuing my friends, learning to express my emotions honestly to others – those are not out of my reach at all.

They’re not out of anyone’s reach – unless they are unfortunate enough to live in solitary confinement. The things that tend to matter most to us, when we reach the end, are the simple, non-material things.

As Bronnie Ware says: “It all comes down to love and relationships in the end.”

And her last words: “Choose happiness.”

Saturday, 16 April 2011

Lemurs and other animals

I'm ambivalent about zoos, because I don't like to see animals confined. But a recent visit to Drusillas Park in East Sussex gave me a welcome opportunity to see some of my favourite species, and to take many photographs, especially of the photogenic lemurs! The sociable ring-tails, which seem to spend a lot of time huddled together and grooming each other, are incredibly striking with their inordinately long, striped tails, subtly coloured backs, endearing, wet black muzzles and expressive faces. As with many lemur species, their brilliant orange eyes are extraordinary. Also in the enclosure were a couple of male and female black lemurs (the females, confusingly, aren't black at all). As I watched and photographed these beautiful animals, I kept reminding myself that they are primates, as their grasping hands make immediately obvious. That means that, although their evolutionary line diverged from ours a lot earlier than that of the great apes, they are still close relatives of ours. And since their only home in the wild is Madagascar, it's always a privilege to be able to get so close to them. Having had an emotional time lately, it was great to get out on a sunny day and see some wonderful creatures from all over the planet. So despite being on my feet for far too long and experiencing a pain flare-up afterwards, I enjoyed every minute.

Some of the lemur photos as well as of other animals - otters, prairie dogs, meerkats, fennec foxes - have been added to the Animals gallery on my photography website. You can see them at More to come soon! :)