Sunday, 27 November 2011

Blaming Myself

Among other things, I have what is known as 'difficult asthma'. This means that my asthma is severe and persistent, despite maximal medical therapy. It is par for the course that things flare up and I run out of things that I can try at home. At this point, I either try to wait it out at home, in the hope that I can keep things stable enough and give my lungs time to get their act together, or I take myself off to my local hospital. The latter option usually wins, even if I try the waiting option for a bit first.

I take my medical care quite seriously, and am careful about taking my medications and avoiding allergens and things that trigger asthma attacks.

This is a good thing, as I'm sure it helps me to avoid unnecessary hospital admissions, and means that my doctors are happy to let me leave hospital that little bit earlier, as they know I'm capable of looking after myself.

I know that I'm a 'good patient', but there's always a nagging doubt that maybe I could be doing something differently. Something better.

Articles like this one (which was published in the American Journal of Respiratory and Critical Care Medicine) suggest that difficult asthma is often nothing more than a failure on the part of the patient to take their medications as prescribed.

While I agree that it's sensible to make sure that people are taking their medication before trying additional treatments with potentially serious side-effects, this view does make me feel inadequate, or even defensive. Most of the doctors that treat me are able to see that I am committed to my medical care, but there is the occasional one who treats me as though I know nothing about my treatments, and that I'm in hospital because I'm stupid. This view manifests itself in questions about my psychological wellbeing, whether I know about and take my medications, and questions about whether I smoke or inhale other inappropriate things. Peanuts and dust, for example. Or cocaine. Having patients admit to using hardcore illegal drugs makes this type of doctor very happy.

The sense of disappointment that I feel when it becomes clear that things are deteriorating despite my best efforts is hard to describe. I have such optimism when things go well, and feel so disheartened when they don't.

I think that today's lesson is that I have an illness that fluctuates. Part of the nature of difficult asthma is that it is hard to control, and I need to be forgiving of myself when, despite my best efforts, things deteriorate. However, the fact that it is an illness full of ups and downs does not give me an excuse not to try my hardest to control it. Yes, it's disheartening when I try hard and things go wrong, and I know that even when things go right it's as much due to luck as judgement, but every good day (even every good hour) is worth the effort, and I owe it to myself to give myself every opportunity to live life to the full.

This post was written as part of NHBPM - 30 health posts in 30 days:


  1. I think it is also important to remember that the medical system has a very hard time viewing patients as capable. I find it really interesting that they are really starting to revolutionize the way that we treat things like diabetes for example (At least here in Canada). Instead of treating patients like they are kind of stupid and that they are never going to figure out how to handle checking their blood sugar, eating properly, getting enough exercise etc. We have moved into a much more strengths-based community based approach to dealing with it. There are diabetes programs where teach people how to control diabetes, and help them take control over it. We make that accessible in many languages and culturally relevant to communities, and it works better. People take their medication and monitor themselves because they understand what they are doing, how to do it and why it is important in keeping them healthy.

    To me that is a huge contrast to an article like you are describing where we are saying that patients are lazy, incapable and misinformed, and don't want to follow protocol. I think that that approach though is found far more often in the medical system than we like to think. Sometimes we get good doctors who work really hard to empower their patients and make sure they know what to do to take care of themselves, but as a system they tend to look at themselves really highly and think that no one can handle the level of information that they do, therefore, we need to be micromanaged and treated like children who don't understand our own bodies or our care :(

    So, that was a really long way of saying that I hope that article doesn't make you think that you were crazy. I think it is just a sign of a system that treats us all like we are doing something wrong, rather than that our bodies may actually have issues and we might be the ones to know them best.

  2. Thanks Shosh15!

    I think that you're right about the system, and that it can often be 'them and us', resulting in just the treatment I've described.

    The program you mention in Cansda sounds fantastic. Just what we need! I know that I am far more likely to take my medications if I understand exactly why I'm taking them and how they work (but I'm slightly unusual in that I'm an ubergeek with medical training). I feel sure that increasing understanding and awareness can only be a good thing!

    We have a program here in the UK called the Expert Patient Program, which is a course for people with chronic illnesses, and teaches some really valuable skills, like pacing and pain management (or maybe general symptom coping) skills. But it's not widely available.

    Perhaps the problem is, in part, a health system struggling under extreme pressure and trying to apply 'sticking plaster' medicine rather than investing in long-term patient education and proactive interventions...

    Thank you for your very interesting and thought-provoking comment, and welcome to my blog - it's very nice to meet you!


  3. Hey no worries :-D I'm another ubergeek with less medical training perhaps but a good understanding of human biology and chemistry and academic writing, so I'm usually reading the medical journals with my doctors lol.

    We have a program that sounds similar to the Expert Patient Program here too, but it's more counselling based and as far as I know is only offered in one hospital here. It's no surprise that wait times can be up to a year for it. I think a lot of that kind of stuff here gets put into our counselling services.

    It's nice to meet you too! (I found you through Ravelry in case you are wondering how I happened upon you :-) )

  4. God Bless you Jo. One day you should seriously consider combining these posts into a book. So much of what you write about are things I feel but can't express and I would imagine a lot of people with chronic illness would say the same. In fact at the beginning of the month you wrote a post about what you'd write about should you ever write a book. Can I go ahead and pre-order all five you mentioned? you know, just in case you ever do decide to write them! :) In the meantime, I think I'll get a shirt made up that says "I'm not sick because I'm stupid". My favorite that maybe if you just ate healthy you wouldn't have to take all those medicines?" "But aren't you tired of being sick" (which isn't a bad question depending on the conversation. Unfortunaely in the context it was asked it was not meant to mean 'it's awesome you have handled it so well for this long' but rather was clearly meant to say 'why are you not choosing to be well') and one of my favorites "You've been sick for so long. What is it that either you or your doctor is doing (or not doing) that's keeping you from getting well?" I would have LOVED to have seen my face when they asked that particular question!!!!

    I'd love to hear more about the Expert Patient Program! I could certainly use a class like that.

    With love, hugs and prayers - Allie

  5. Hi Shosh and Allie,

    Indent know what is included in the Expert Patient Program, but maybe that's a hint that I should find out and then blog about it!

    I'd love to write any of the books that I described at the start of the month. You're such an encouragement, Allie, making me feel asthough my writing (or, more accurately, my deranged ramblings!) are worth reading. Thank you.

    Those questions you mentioned, Allie, are all too familiar. Do you get them too, Shosh? I never really know how to respond to questions like that. I always try to be gracious and assume a genuine lack of knowledge, but really all. Want to do is scream: "YES! I am tired of being sick! I wish that for just one moment I could get away from this crazy, out-of-control body of mine. Just for one moment".

  6. I get some pretty messed up questions Jo. The one I love is about my pain meds. Now, don't take my experience about pain meds as typical in Canada, because it is usually a lot easier to get pain meds than this, but I ended up having 5 different doctors agree that I needed to have access to strong pain medication. I was in the hospital at the time, and it was needed on discharge so the doctor who was responsible for me in the hospital wrote me a prescription. After I got out of the hospital I went to see my specialist, he also agreed that I needed to have these meds, but he didn't want to be responsible for prescribing them, so he referred me to a pain management clinic. I saw two different doctors in the pain management clinic who both agreed I needed to be on these meds, who then wrote a note to my family doctor telling her I needed the meds, and then my family doctor writes me the prescription for them when I need them.

    That being said, the attitudes that I get around pain meds just floor me sometimes. I was seeing this one therapist when my pain started to get a lot worse and my therapist told me that one of her goals for me was to have me not need my pain medication, and her and everyone else around me would look at me really unhappily when I would take pain meds when I was with them or if I happened to mention that I had been on them lately. Now, I can understand people being unhappy I am in pain, but that wasn't what was behind this. Somehow, me using my pain medication as prescribed, appropriately, when I am in pain is something that gets judged. Somehow I am less than everyone else because I required strong pain medication to function. Or, that I could take this medication and have a tolerance to it. But it just floored me that my therapist, who knew about my medical conditions but is not a medical expert would judge that I used pain medication (for pain, we're not talking problem use here) and that 5 doctors validating the need for this medication wasn't enough to convince her that trying to get me to not use it was going to be a realistic goal for me.

    So, that was a very long way of saying "Yup. I get it too! and I would love to scream at people about it often too" Perhaps I will write a blog on pain and pain medication soon. :-)