“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