There comes a time, in chronic illness, where you have to address a profound need to be left alone, to carve your own space, time to put down all attempt at social skills to go mute and self-focused, devoid of all expectations from others to do or react or say the right things and just "be" in the dark void with whatever it is that is happening to you. There has to be time and space for you to pull into yourself, to lick your own wounds and to grieve your own losses which, though less overt than an actual "death", are a kind of bereavement all of their own...a deep sadness for the health you once had, the person you used to be, the hopes you once nurtured. This, like any bereavement, takes time and space and solitude enough to process. My craving for solitude is extremely high right now, perhaps no different to how any wounded or traumatised mammal will withdraw to its den in order to attempt to self-regulate its highly overstimulated nervous system in a way that can only ever be done by curling up, alone. No amount of kind gestures or people wanting to fuss or help out can play substitute for this need to be alone and look our current state in the eyes, to intuit what we most need and to search for the means to initiate the body's own healing process, which is not something you "do" but, instead, patiently wait for with whatever small iota of faith that you have left.
power of thought
Things we need
Looking at some of the core things we need...whether we have chronic health issues or not.
Worrying or stimming? Looking at an overactive mind from a neurdodivergent point of view
From what I can tell, neurodiverse criteria for getting a good night's sleep can be very different to "norm"...and we may not be as anxious as we seem, measured by usual criteria. So how can we tell when we are worrying compared to when just NEED to stimulate ourselves awake in the middle of the night (and why might that be)?
The pitfalls of identification with a label and the power of positivity
Labels can be so useful, for identifying, explaining, pooling information, finding things out...but they also come with pitfalls. Exploring how to use them (with caution) and also the power of positivity as a tool for breaking out of any boxes.
Living (not waiting)
So many of us feel like we are waiting for the other shoe to drop, breath held, with forces beyond our control seemingly holding all sway over our lives. All the more important, then, to corner some area of your life where you get to exercise the muscle of influencing things that feel creative and positive, whether this is a literal act of creation (and I don’t just mean art) or making decisions, taking actions, putting things in the diary that will help sculpt a better feeling about life, for yourself and others.
The peaks and the perils of hyperfocus: a seasonal perspective
Exploring the trials and tribulations of Christmas as an autistic-ADHD adult prone to hyperfocus; and how this one trait alone can be the source of stress and burnout, yet still so much you can do better, including self-compassion, once you realise and work with the trait.
A lifetime fuelled by pain and frustration: handling the emotional fallout of long-term undiagnosed autism
A combination of having a blind spot when it comes to your own emotions (alexithymia) and a lifetime of fear around unleashing strong emotions.not to mention the stockpile of anger, frustration and trauma from all the difficult years before diagnosis, can conspire to push strong emotions deep into the body. Exploring how autistic challenges such as these could manifest as chronic illness and especially chronic pain.
Being on the spectrum doesn’t mean one person lives at a high functioning end and some other autistic person lives somewhere in the middle or at the bottom. It means we are all a range, within ourselves, and some of those highs can mask the lows (a primary reason for missed diagnosis). One trait alone can overcompensate for several shortfalls and mean adults are so blinded by your ability they don’t accommodate or even see your considerable struggles. You then exhaust yourself by overcompensating for, or masking, your own struggles for years, burning yourself out by having to work twice as hard as everyone else just to get by or meet high expectations set by others which you took on at face value. Suddenly, you are hit between the eyes by the pathos of this…you were never really that person they thought you were, which you took on at face value, but rather this other person with such a wide mixture of gifts and challenges they almost seem to cancel you out.
How the ingrained behaviours of family may clash with neurotype to provoke a chronic response in the body
How much do epigenetic components, mere accidents of circumstance, parenting styles, and other peoples expectations feed into chronic states of health, not least when you are autistic and have been entrained, all your life, to adhere to behaviours that fail to meet the preferences, abilities or sensitivities of your neurotype? Is chronic illness a form of demand avoidance that takes shape in the autistic body when it refuses to continue being ignored as before?
Coming out as you truly are, to yourself and to others, can be so utterly monumental, so pivotal, to your own personal wellbeing; yet also something which cannot be adequately conveyed to anyone who has not ever had to feel like an exile fumbling about in the darkness of their own bewildering life until this point. Nonetheless, it's an experience that deserves celebrating and encouraging, as I do today in these few words on the topic.