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Being Unique Often Feels Very Lonely

Being Unique Often Feels Very Lonely

In the past decade or two, a fair number of people (which includes myself) have been opening up about the unusual aspects of themselves. The internet and social media have been playing a major part in this, and a significant number of new names for different conditions and lifestyles have sprung up in the past twenty years alone.

One of these is a very rare condition called HSAM (or Highly Superior Autobiographical Memory) which was discovered by a team of researchers at the University of California, Irvine led by Professor James McGaugh. The reason I mentioned HSAM in particular is that I myself had been diagnosed with that condition by the McGaugh lab in 2013, after several years of thorough tests and brain-scans. It’s also been discovered that I have synaesthesia (a crossing over of the senses where I can taste the sounds of words). Synaesthesia is a rare condition as well, yet it often comes in people who can remember an unusually large amount of things they experience. So despite me having two rare conditions, they are easily able to co-exist with each other.

Many people I come across wonder (with a wide variety of question types) about what it’s like for me to live with such a rare condition. Some have even asked about whether I feel proud about being so unique and one in a billion. One thing I’ve noticed about us humans is that we initially love the idea of being rarity of some kind. Though the word I used “initially” needs to be further emphasised.

HSAM is something I’ve had since I was born and I’ve never known a life experience without having it. Up until my late teenage years I assumed that every person was the exact same way. Yet at the age of 23 (in 2013) I was one of 60 people in the world (at the time) diagnosed with a super rare condition, and (at this present time) I’m the only Australian who has a diagnosis of HSAM. That isn’t of course to say that there aren’t some other people who have the condition but a currently just undiagnosed.

Initially (when I first heard about HSAM during the beginning of diagnostic tests) there was a buzz of egotistical excitement that I was this medical exception. Though HSAM wasn’t something that I had just acquired the moment I heard that it had existed. The experience of having it was always there, and the challenges were after all the reason for why I reached out for help. Thus it didn’t take long for me to feel like it wasn’t at all a lottery win, even though there are still things in life which are more negative.

The greatest difficulty with having such a rare condition is that there is very little awareness and medical support that is designed for it. Even when people do hear of the condition, society does still mainly cater for the majority of its members; and to be one of  less than a hundred people worldwide with a certain way of living life, society will definitely not be geared up towards my particular needs. Also, as HSAM makes me unable to forget the vast majority of my life experiences (positive and negative) it certainly is a condition that strongly affects my ability to live my daily life.

Indeed whenever I’m seeking and requesting medical help for being unable to let go of such vivid recollections of my past, I feel very much like my whole life is some some pilot or beta program. I’m now well and truly used to therapists saying “well we haven’t got any exercises or medications designed specifically for HSAM, but we’ll try something that works for somewhat similar cases”.

Through cases of trial and error exercises that are very helpful for me have arisen. This has improved my life greatly, and in turn these discoveries have now been documented as being very useful for other cases of HSAM, with individual personalities being taken into account.

So it is very important for people with super rare conditions to make their experiences public, and every opportunity to appear in a media story must be taken (unless these activities are likely to bring extreme anxiety). This isn’t for the purpose of drawing attention to ourselves. Instead it is to draw attention to our conditions themselves. The reason for this is that when more people are aware of our challenges, more people are able to support both us and our peers with the same conditions.