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


  1. Wow...this is AWESOME. I wish I had ever thought to send this to any of my doctors. How touching. I don't even know you yet it makes me proud of you. Terrific

  2. i believe there are many reading this you can completely relate. thank you, michael for sharing. not only do we feel as though we've fallen through the cracks, we feel abandoned by the medical community that is supposed to be there to help us and guide us through the medical maze of the unknown

  3. Hi Michael. Great letter. I also tried once writing to my neurologist because he didn't seem to respond to my issue of pain (I have MS).

    My experience with him was that he told me, on my next visit, that he didn't have time to read long letters (mine was a page and a half, double spaced). The next visit, I brought a "cheat sheet" for me, not a note for him, and when he saw me take it out, he said "let's hit the highlights and skip the rest"

    I liked him, as a doctor, but now see a different one. He retired, before I had to drop him.

    Wishing you well with yours.

  4. Michael: Wondering if you have ever been evaluated for Lyme disease. It can cause anxiety and neuropathic pain. Alas, your regular doctor is unlikely to know much about it. There are two organizations in the UK that could give you info about it: BADA-UK and Lyme Disease Action. Best of luck to you.

    Dorothy Leland
    California Lyme Disease Association

  5. Thank you all so much for your kind, supportive words. I feel quite overwhelmed by the responses I've had to this on here and on Facebook. It's made me realise how many people can relate to this kind of misunderstanding by health professionals of chronic and invisible illnesses - anything they can't prescribe a drug for and 'cure'. I feel for you all and am so grateful for the support network I'm discovering of sufferers from chronic pain and illness.

    Dorothy, thanks for the info! I hadn't considered Lyme Disease as I associated it with chronic fatigue, but that just shows how little I know and I will definitely look into it. I'll check out the organisations and your website. Thank you for all the work you're doing for sufferers.

    Take care, all of you!

  6. hi michael,
    i do live with ME and although we have a different diagnosis ... i too can relate to your letter. well written. did you ever send it to him or was it enough to post it here?

  7. also very interested to know whether you sent the letter (and if so what kind of response you got) or whether it was therapeutic enough to have written it?

  8. So sorry, Alisa and kp, I've only just seen your comments. I hadn't checked this blog in a while but have gone back to it and realised you commented some time ago. Yes, I did send the letter, and my doctor mentioned it when I saw him next. He said something like "I've got a thick skin after all these years" but made no other comment! - and my appointment was too rushed for me to feel I had time to chase it up! I think I was nervous about it. But he seems to have been more understanding since, so maybe some of it got through. lol! Thanks both of you for asking. It's not something I would do often, but if people have problems with their doctors not understanding I sometimes tell them about my letter, as a kind of suggestion!