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Disclosure #2

25 October 2015

“I'll have to tell the other registrars – they have a right to know”

It’s such a familiar situation – spending time with a person who has just been diagnosed with MS, hearing about what they have been through up to this point, answering questions they may have about my own experiences, and then hearing them comment about who they “should” tell about their diagnosis.

Why do we feel this pressure to disclose?

It’s taken me years to sort out how I think through the decision of whether to disclose my MS diagnosis to others.  I can’t help feeling almost a responsibility to be open about my status. I’d like to demonstrate publically that there is no “shame” in having a chronic illness and no need for those of us with MS to hide that part of our lives.   But my bottom line is that, first and foremost, disclosure is about me. If I need something that involves another person being aware that I live with MS, then I will disclose.  This can be anything.  I may hope to achieve understanding, a closer relationship, or a concession of some kind.  But when I tell someone that I have MS, I am sharing something personal and intimate; my health information.  I don’t do that for no reason.  And (unless the other person is a health professional involved in my care) I don’t do it because I think the other person has some kind of “right” to know.

Ironically, it is as I have become more open about my own diagnosis that I have also come to feel strongly that each of us should feel completely comfortable to disclose or not disclose to whoever we like.  The diagnosis of a chronic illness does not bring with it an instant responsibility to become some sort of advocate or “disease ambassador”.  Some may choose this path – and I am in awe of (and very grateful to) those who have willingly become the public face of MS.  For others, disclosure may be associated with very real personal or professional costs that need to be carefully considered.

So I looked over at the distressed young doctor clutching a mug of coffee as he sat with me in my office.  He had just recovered from the episode that led to his own MS diagnosis and had no residual symptoms.  His first day back at work he’d told his manager about his diagnosis and – thanks to his manager being someone I know well – been told “before you do anything else, I want you to go and talk to The Unaffected One”.  I think it gave him some sense of optimism as he realised that at least one of the more senior physicians he knew had been living with MS for years and was still working – but he was really dreading the impact it might have on his own budding career when he disclosed to his fellow trainees. There was a hint of fear in his voice as he told me “I’ll have to tell the other registrars. They have a right to know”.

I think I shocked him when I responded “Out of interest, which of the female registrars on your team is using the oral contraceptive pill?”

Not surprisingly, his answer was “That’s none of my business!”

“So why do they have a right to your health information, if their health information is private?”

Over the next half hour or so, we thrashed the issue out further. “Your MS is not impacting on your ability to do your job, so you don’t owe it to anyone to disclose your diagnosis.  If any of your colleagues are the people you look to for support when things happen, then you may choose to share this with them.  Otherwise, as long as you do not have symptoms that impact on your job performance, it is none of their business. At your level of training, it may not be in your best interest for too many people at work to be aware that you have MS – so from a career perspective, you may like to be a bit careful about who you tell, at least as long as you are doing well and don’t need any concessions at work”

That was a few years ago now.  It was a conversation that helped me solidify my own views on disclosure – it’s so much easier to see how odd it sounds to say “They have a right to know” when the words come out of someone else’s mouth!  Hearing another doctor utter them finally made me realise that there are very few situations where disclosure is about the “rights” of others.  In general, I try to make it about me.

That young man is finished his training now and is a fellow physician.  I don’t know him particularly well, so I have no idea whether he remains symptom free – but he is working full time and he looks just as unaffected as I do.  He has returned to the same hospital I work at now that he’s a fully qualified specialist.  When he first joined the staff and I passed him in the corridor with his boss we said a quick “hi”. He gave me a quiet look that I’m pretty sure was his way of saying “Thank you!”  for the conversation and coffee we’d shared.


The Unaffected One







Comments (5)

I really enjoyed this post TUO- thanks for articulating the issue of disclosure so well. Although I haven't had the experience in a workplace setting, I've certainly experienced it in my own circle of friends when I made the decision to keep my MS from my family. Unfortunately it did end a few friendships, but after discussing it with my psychologist, I discovered that my diagnosis was also a great opportunity to learn a lot about those I care about, and move away from 'friends' who weren't as supportive of my choices as I would have been with them. As you say, "disclosure is about me" and that's something that took me some time to be comfortable with, without feeling guilty for taking such an approach.While people are free to disagree with such a decision, it is when they don't respect our right to choose who we disclose our condition to, that is become an issue. Thanks!

Thanks Sam. I think respect is an important word (and one I neglected to use in my post!). I can only guess that those who judged your decisions about who you disclosed to were too busy thinking about it from their own perspective to respect that your perspective is different. You know your family and friends and how you relate to them best. You've put a lot of thought into who among them should be aware of your MS at this time - and it is clear from your first post that you continue to think your decisions through carefully as you get on with life. One day your decisions may be different, but for now, you have made the best choices possible for you, and you've not done it without a lot of consideration. It's fine for people to question our choices - but once we have respectfully considered their questions, I would hope a good friend would respect our answer. I'm sorry this has not always been your experience.

Thanks TUO.. Great post. Disclosure is such a personal thing and you are right, disclosure is about the person disclosing, no-one else. :)

Thanks Rebecca - and I'm glad my approach (which can potentially be seen as a selfish one) does not seem inappropriate! It took me an awfully long time to be comfortable with it myself. And as I said in the post, it's really as I have actually become relatively open about my own diagnosis in most situations that I have become entirely comfortable with choosing NOT to be open in select circumstances, such as when I am dealing with patients.

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