Sunday, 1 June 2014

To disclose or not to disclose?

This post isn't about being secretive, but about the boundaries of privacy and thinking about what we expect from patients when they share their experience and insights. So, I've been wondering for a while..

How much of my role as a patient leader is about my conditions? Is disclosing them essential to my story, insights and contributions? 

If you take a look at my Twitter biography, my various conditions are listed. It is not that I don't want anyone to know. I'm happy for them to be out in the open.

Living with rare conditions, my lectures to medical students are an opportunity to raise awareness of the conditions, and signpost to the support groups which often have really helpful information for healthcare professionals. (For reference, these are POTS UK, STARS, Ann Conroy Trust, GAIN and HMSA.) I like to share with these with the students, as I recognise I have this opportunity to raise awareness and help future people with my conditions.

Often it is just simpler to say I live with various neurological conditions. I also want people (clinical professionals) to listen to what I am saying rather than trying to guess what my diagnoses are. Having been a medical student, I know how irresistible it can be do make a "bus stop diagnosis", based on just seeing how someone walks and moves etc. Disclosing my conditions upfront can avoid this,  but because my conditions (and the combination of them) is not common, I do fear that perhaps this reduces the validity and applicability of my experience in the wider context of patient care. I know that this isn't really true, because my role is about the insights that my experience has given me, as opposed to the specifics...

Having delivered generic self-management courses (the EPP course and Health Foundation Co-Creating Health), where the introductions focus not on the condition but the symptoms, and the impact that those have on ones day to day life, I know that I have had faced the same challenges that other people with long term health conditions have. No single patient is ever going to be truly representative, and I am aware that I have many advantages that others might not have. But it is about the insights that I have gained through my experience that matter, not necessarily the conditions that have caused it.

Using Twitter freely and keeping this blog may make any request for privacy seem contradictory, but please don't pressurise me to disclose my conditions when speaking as a patient leader. It is not that I don't want to share, it is just that I don't think it always adds anything to the points that I am making.

If I am wrong, please let me know! Comment below...

P.S. How many of you clicked on the link to my Twitter biography, and the support groups to see what they were?! I totally realise curiosity is a great attribute of human nature, and I'm really curious myself. In fact, if I'd been reading this post from someone else, I'd have click on the links too... I'm not expecting people not to be curious! But to question how central that information is to the conversations and dialogue that we can have.


  1. Apparently this comment function isn't working, as I have just had an email from someone who tried to comment... Here is their comment:

    In the interest of raising awareness
    I gave up privacy rights to my diagnoses. However your post has led to me to
    consider what I disclose and to whom. On Twitter I might disclose that I
    have five chronic conditions and a complex medical history. If, however, I
    am speaking to a professional I will disclose the names of the conditions.
    That I am not ‘straightforward’, symptoms may overlap, some conditions
    can affect the results of other conditions, some cannot be treated with the
    best drugs available as these may interact with other drugs or pose too high
    a risk. I think it is important that medical students are also made aware of
    the complexities of having comorbid and / or rare conditions. That the first
    impression is not always the correct impression. As diagnosis of rare
    disease improves, and with the inevitable increase of comorbid conditions
    (with combinations previously unseen) due to more successful treatments and
    longer life expectancy, raising medical students’ awareness that
    complexity exists and the additional problems caused in relation to
    diagnosis, treatment and life itself might be no bad thing.


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