Being diabetic is not cool any more. At 35, the extra-sympathy-factor brought by being a young person with a disease is a thing of the past. At 35, everyone is starting to get stuff wrong with them. When you are a young person with a condition, you can – in certain circumstances – wear it like a badge of honour. You feel like you are getting special treatment; that somehow despite all of the crap and the daily marathon (up a mountain, backwards), you are somehow unique. As the years begin to stack up, that feeling gradually fades and you are only left with the cold, torturous reality of dealing with this unending beast of a condition. The novelty factor has worn off (said factor only being a very minuscule compensation for what is, on the whole, an unrelentingly difficult condition to live with), and at emergency hospital visits you just feel like one of the many middle-aged and upward people who are gradually coming apart at the seams. No more sympathetic smiles from the elderly folk on the ward now. No more exclamations of ‘but you are so young!’. Now I’m just a tired, haggard-looking almost middle aged mother of 2, who feels she looks 10 yrs older than she is. (I probably do look older. I think diabetes can do that – another perk!). As each year passes, the more I really know that ‘us and them’ is all an illusion, that every elderly person with angina is in fact a young person who got older.
I don’t think I want sympathy from sharing these thoughts. I just want to believe that an elderly person with angina (or a 50-something with a hernia, a 40-something with a tumour or a 35 yr old diabetic like myself) can feel just as important as a Kid With a Condition. I know that my dear Nana wasn’t always made to feel that way during her later hospital stays. If her health had deteriorated 10 yrs later than it did, i.e. when I had had the chance to experience illness as a not-young-anymore person, I think I would have been more hands-on and more patient and present in her care. I’d have spent more time by her side, making her feel important and unique and worth it. The sadness that I was not those things for her as much as I could have been hangs across my shoulders like an ever growing load, becoming steadily more cumbrous as I gradually feel more lonely in my own health struggles.
The lonely feeling is another interesting development, and not one that I expected. It’s new to me (5 years new), despite having had this condition for 15 years. I don’t think this feeling will go away, and I’m not even sure if I would want it to. It is, after all, part of what makes us human; loneliness, and the resulting desire to connect. In my loneliness, I harbour fear and uncertainty, but it’s also the place where I find peace, God, and connection with nature. It’s here that I feel infintesimally insignificant and infinitely important, both at the same time.
Acceptance of the loneliness is beginning to make the feeling less scary. Before I had experienced the first inklings of diabetic complications, diabetes was all sugar-checks and hypos and hypers. Cartons of juice and injections; day-to-day practical management. All of these things could be grasped by those around me, and those around me could even help and engage with the daily pursuit of in-range results. It’s the dark thoughts in the night that bring the feeling of separation.
I’ve found that no amount of talking with those who do not suffer from chronic conditions will curtail my feeling of being alone. Even when my nearest and dearest dedicate themselves to trying to enter my world – when they desperately want to share the burden, extending deep sympathetic understanding in any way that they can – I still feel that I am in it alone. It’s the dark realisation of my eventual demise and the feeling of powerlessness to stop it, along with the fear of how exactly diabetes complications will present themselves as I wonder how slow my deterioration will be. However much I vocalise these disturbances with my loved ones, I still come away feeling an empty dissatisfaction. Sometimes I feel even more alone for having shared; they express their understanding, we enjoy time together, they leave, and my diabetes remains. I don’t know if I half expected it to walk out of the door with them when we said our goodbyes.
The one thing that does help is connecting with others who live with chronic illness. I remember gasping across the table as a fellow diabetic friend first uttered the words ‘dark thoughts in the night’. It was as if she had casually vocalised something which had been haunting my subconscious for years. An as-yet un named demon, called out accidentally by a friend in the pub. To be vividly heard in this way – to have the darker parts of oneself seen and acknowledged and even understood – is both terrifying and hugely reassuring. The deeply disquieting loneliness does not evaporate, but there is a certain comfort from feeling lonely together. A soothing corroboration of our shared condition.
Of course, this is applicable to the entire human race, to some degree. We are all in the same boat. The next man is not immune from the clutches of death and deterioration just because he doesn’t have a chronic condition, and equally there are those in a far worse state than myself. However, a consultant once told me that the difficulty with ongoing chronic conditions is that many people live much of their lives in blissful denial of their own mortality, but the act of taking daily medications is like a constant reminder of our true state as transient beings. ‘An uncanny harbinger of death’ as Freud once said of the doppleganger, and I guess in many ways my insulin pump acts as a doppleganger of my now dysfunctional pancreas. It’s no surprise that some of my later-onset friends have struggled to accept their diagnosis, wary of trying an insulin pump because it’s permanence would necessitate a level of acceptance. I guess (or at least, I hope) that this won’t be such an issue for the D-kids I know, for whom the pump/needles will be as familiar as a toothbrush is to me, and thankfully I do not reject my toothbrush on the grounds of it’s associations with my ongoing root-treatments.
Our ailments can be at once a curse and also a blessing. As long as it doesn’t bring me irrevocably down, I am glad to really know of my own mortality – to feel the truth of my humanness in the very depths of my fragile bones. When it isn’t overwhelming me, I’m glad to have the prompt to reconcile these feelings, which every one of us must deal with at some stage, each with our own lonely, human condition. The acknowledgement of our fragility adds depth to life, but the challenge is managing to stay on the right side of the depth, which can all too quickly become a void in which to drown. My lifeboat comes in the form of our shared loneliness; of knowing that there is mutual experience in ‘the other’. There is always something in common, if you look for it. We’re not so different.
‘We can only be human together’. Famous words of Desmond tutu which I have displayed on a plate in my kitchen. Together, acknowledging our shared reality, We Are Human. We are broken. We need to feel connected. Find your lifeboat; your support group, your internet forum, or just be bold and find the common ground with the stranger on the bus or in the next bed, or maybe with the patient you are tending to. In this way, I/we can start to feel important again. I am thankful that the team who look after me in clinic go to great lengths to ensure that I feel cared for and important, and they were exceptionally sensitive in managing my transition from child to adult services (something which I managed to avoid until my late 20s), a passage which brings a strange kind of realisation that this shit isn’t going to go away any time soon.
When one day I’m all alone inside my head but for the final sparks of electrical impulse that forge the concluding echoes of memory of a life lived, I hope that I’ll feel confident that I have lived life on the right side. To know that I’ve helped others to feel ‘together’ in their aloneness, to know that my children – and their children – grow up to know their importance, and their deep connection to others and to God/nature, no matter what challenges they face in the quiet depths of themselves. I hope that those around me will know that they are not alone-on-their-own. If one day I am the elderly person on the busy ward, looking across at the tired looking almost middle aged patient across the way, I hope that can pay a small part in making her feel important again, and acknowledging her pain. I can’t (and perhaps shouldn’t try to) banish the loneliness, but we can feel it together, and that helps.