folio

It’s easy to feel very bitter about a late diagnosis and the lack of post-diagnosis support, but the reality is that most people — including most healthcare professionals — have never even heard of the condition.

Even amongst specialists tasked with treating one aspect of its effects, there tends to be an abject absence of understanding regarding its wider implications. If it is addressed at all, it will largely be treated as an endocrine issue alone.

Even here, how we are treated very much depends on the breadth of knowledge of the consultant we are assigned. I think I was very fortunate early on to have been referred to an excellent endocrinologist who really seemed to care about my health and wellbeing.

Unfortunately, the same couldn’t be said of the next one I was referred onto after moving out of London. After just a few checkups of my testosterone levels, he simply discharged me, telling me that my GP could easily monitor it. Of course my GP can’t and doesn’t.

Hoping for holistic care and support is clearly wishful thinking. In truth, you’re more or less on your own. In the early days, close to diagnosis, you may even accept that it has a very limited impact on you as a result of those disinterested interactions with clinicians.

In any case, you’re probably preoccupied with a devastating pronouncement regarding fertility and, after exploring treatment options, may have rushed into contemplating fostering or adoption instead, processes which sap all of your remaining emotional energy.

Worse still, after encountering highly insensitive fertility specialists delivering your diagnosis in a cold and uncaring manner, you will now likely encounter highly insensitive social workers as you embark on your journey to adopt, incapable of seeing you as a couple already traumatised by these unforeseen events.

In short, in those first years post-diagnosis, you will be on an emotional rollercoaster, both coming to terms with this new reality and pursuing that innate desire to have a family of your own. For unstable couples, this could easily spell the end of a marriage or relationship. For the diagnosed individual, it might be the start of a descent into addiction or deep despair.

For those that persevere, the rewards can be immense. Quite unexpectedly, they may suddenly find themselves making one of the ultimate sacrifices in becoming full-time carers for vulnerable children until then raised in the most awful of circumstances.

It may be that those experiences growing up with that undiagnosed condition grants them a level of fortitude and compassion that other might find hard to muster. Perhaps that’s what keeps them going, despite the ongoing struggles within.

Eventually, though, there will likely come a time when they slow down and start to ponder that diagnosis anew. It might follow a major wobble. It might strike just as their children enter adolescence, and their behaviour triggers all sorts of memories from the individual’s adolescence, undoubtedly the worst period of their life.

Perhaps, in taking stock of their life to date, they will now start asking questions. Could my lifelong brain fog be related to this condition? Could those developmental delays in my youth, and struggles in education, have been related somehow? I have struggled with verbal communication my whole life: is this linked, somehow? I have a far lower socioeconomic status than the rest of my family: how is this possible?

Questions like these may be the beginning of their self-exploration and a renewed effort to understand their diagnosis, however long ago established. Doing so may be the start of a process to address its impacts. While holistic care may still be unavailable to them, at least they can now access quality research data which enables them to draw such strands together.

Bitterness is, I think, an understandable response to not receiving the support we might expect after a significant diagnosis. We may feel that we’ve been failed by the system, though the system might respond that we misunderstand what it’s there to address.

Eventually, though, it occurs to us that we’ll just have to seek out our own interventions, in whichever way seems effective for us as individuals. Perhaps some kind of talking therapy or cognitive behaviour therapy will help some people address a particular aspect of their condition, which they would access just like anybody else.

While there’s probably little we can do to address the distinctive brain morphology some studies have identified as being associated with the condition, perhaps we may try supplements which seem to have helped others with foggy minds or cognitive impairments.

Perhaps we just have to take each issue which bothers us, one at a time, and find ways of addressing it for ourselves, in just the same way as we would take personal responsibility for our diet or exercise.

In the end, in the absence of holistic care or support, we just have to help ourselves, coming to terms with a difference amongst a multitude of differences which effect all people, everywhere. Here we must pick ourselves up, dust ourselves off, and journey on, putting all of that bitterness behind us.