As anyone long reading my posts will know (you just have to read my About section to hear much more on this topic) I have long believed that there is a whole bundle of health symptoms and conditions that very commonly overlap and which I strongly feel are connected; that, in fact, they need to be regarded as parts of a constellation of related things to make any sense of them at all. Finding health professionals that talk about, or would accept, such a model has been a whole other matter these last two decades!

However, as I continued on in my search for a way to navigate through the territory, prompted by the much worsened post exertional malaise (PEM) and mast cell activation symptoms (MCAS) I have been experiencing lately, since my house move and having covid earlier this year, a couple of recent tip-offs led me to a couple of individuals taking such an approach.

One is Dr James Kustow, a London-based consultant psychiatrist who is late-diagnosed ADHD himself and who has apparently been on long quest to make some sense of all the connections he has also noticed between ADHD and what he refers to as a “somatic super-syndrome” of commonly intertwined conditions.

Rather than paraphrase what he has to say on the matter, far better that I lead you to a video in which he outlines his hypothesis in detail. This makes satisfying and exciting viewing to someone who has so long shared this view of things herself, from the inside, since I have no doubt whatsoever that my chronic health challenges, my ADHD and autism are all thoroughly entangled at the root. Dr Kustow makes some considerable effort to unravel them and the video diagramaticaly shows how, if you follow to the end. Also of note is that his new book How to Thrive With Adult ADHD has just come out and has a whole section on the various crossovers of ADHD with various health conditions and immune system vulnerabilities including the very mast cell activation I mentioned above (much more on that below). Unsurprisingly, I downloaded it to my kindle the day it came out and am, so far, enjoying it.

He states that data is only just emerging that suggests “those with ADHD are much more likely to have evidence of immune system dysregulation” and also “likely linked, there are significantly raised levels of inflammatory markers (or tests) in those with ADHD”. In his opinion these “point to a more somatic (physical) amd multisystem disorder” which “may in time provide important clues as to the biological drivers of ADHD symtoms (extending beyond a distrubance in brain chemistry)”. He even goes on to say that “mast cell activation disease (a seemingly common syndrome of immune overreactivity) may be a particular issue in those with with ADHD” (it has been a near constant challenge for me, for years, and always becomes very active during my crash phases) something which desperately needs more study. Over the years, I’ve done all the work, and then some, that he then goes on to outline to reduce my toxic load but remain in this constant cycle of boom and health bust with flare-ups of symptoms, so my own belief is that mast cells issues are a consequence of ADHD and autism and not the other way around (since my AuDHD factor is more consistent and lasting than my symptom trigger phases, being a permanent, unchangeable feature of my genetics) but more on all that below.

The second tip-off came to me a day after I formulated the frustrated question to myself “why am I not hearing more being said about a link between autism/ADHD burnout and PEM?” The answer came, the very next day, in the form of a timely instagram post “How Post-Exertional Malaise (PEM) affects neurodivergent adults“, addressing this very thing. The post was from Dr Melissa Houser from Vermont who, at age 37, realised that she was Autistic, ADHD, dyspraxic, dyslexic, and dyscalculic. She also learned that the life expectancy for an autistic person was just 36-54 years!

This led me to an episode of the Divergent Conversations podcast in which she is interviewed, which I strongly recommend (you can also read a full transcript via the same link, if preferred to listening to the conversation), as it is so full of pertinent topics relating to a neurodivergence / chronic health conditions overlap, including the factor of PEM. Dr Houser, it turns out, is a key person to listen to if looking for a constellation model of chronic health issues!

She has even coined the phrase “all of the things” because she keeps finding in her clinic (which is a general practice geared to neurodivergent individuals…imagine that!) an endless influx of patients with “this constellation of intertwined medical problems that go together and where the standard management of some parts of the cluster make the other parts worse”. She goes on to describe the problem this presents: “and so you really have to look at this big cluster and, unfortunately, we have a mainstream healthcare system that is fragmenting all of the body parts as though they are not one human, right?” (quoted from the above podcast interview).

Her website All Brains Belong (link below) is a goldmine of resources, including downloadable aids for communicating with primary health professionals about all these overlapping health issues and lists of commonly overlapping symptoms and conditions. In fact, there is a whole load of information to dive into (for individuals and health professionals), case studies to listen to and group zoom calls to to join in with so, though I don’t have access to her clinic (again, I fervently wish she could be my doctor!), I am still managing to find helpful support relating to my situation, not just in terms of neurodivergence but “all of the things” that, in my case, also overlap.

This one page Everything is Connected to Everything: Improving the Healthcare of Autistic & ADHD Adults is a very good place to start exploring the All The Things resources. In 2022, All Brains Belong formed a Task Force of clinicians, patients, and community members to discuss what works (and does not work) to manage these medical conditions or symptoms. They also gathered information from more than 100 autistic adults who gave feedback based on their personal experiences. The website content is therefore a combination of evidence-based medicine, lived experience, and clinical experiences of treating patients with these conditions, which is absolutely key and the way to go.

I love the website quote that, because of the fact of multiple entwined conditions (as mentioned above) “If you pull the wrong string, you make everything tighter. You have to find the right string to pull”. This is absolutely what I have found in my own experience, over and over again, when conditions are approached in isolation and not viewed as part of a complex, thus why I have become just so defensive against health professionals of any discipline that would tackle one thing without taking the whole of the rest of me into consideration, including (if not especially) my neurodivergence!

Here are some quick links to resources on the website (please note these resources are provided by All Brains Belong, not by me) but I do recommend you go off to explore the All Brains Belong website for yourselves. I will also add these links to my Neurodivergent Resources Page for easy reference as I only wish I had come across them sooner:

This link, for instance, takes you to a letter you can share with your medical provider with a QR code taking them straight to resources they can access to better understand your complex of conditions. In other words, no need to go to them with a whole clutch of printed-off data in your hands or a long convoluted speech prepared, just hand them the letter.

There is also a comprehensive list of overlapping conditions here and of symptoms here. Using both approaches might help you to find a better path through your own constellation of health challenges and lead to further resources that could help you.

All of these materials stress the key point that “By treating these medical conditions as separate, this may result in a person not getting better. By thinking of these medical problems as intertwined, this may result in more improvements.” This one statement offers a lot of hope!

This is exactly what medial providers need to hear and is the approach we should be determined to seek from them; we just have to keep plugging away at drawing their attention to this information as it emerges. However, as I can well appreciate, that’s all easier said than done when we have probably been through the wringer of medical abuse. For instance, I have been told, plus it has been strongly implied to me, just so many times by GPs that I have absolutely no business researching my own health conditions as I do (and that this is indicative of some sort of medical anxiety, a belief that then leads to them becoming distracted with my mental status rather than my actual symptoms) yet I have been left no alternative thus far than to pursue my own answers. That, quite aside from the fact that the oh-so-valuable “lived experience” of those of us living with these conditions, surely, has to be taken into full account if we are ever going to get anywhere at all; we can’t be pushed out of our own equation and our symptoms studied as though under laboratory conditions given the factor of a-typicality (and the fact we are not lab rats).

The conversation with Dr Houser discusses this very factor: You go for the appointment and you hear the patronising or condescending tone and the oh-so-familiar gaslighting and so you’ve already dissociated before the conversation has lasted even a couple of minutes plus you get the strongest instinct that tells you “I’m not safe here, I’m not being listened to” and you just want to run away. How many times have I been in that situation and lost my footing (and my words) or just not gone back to that doctor or specialist to pick up the thread again, leaving me spinning on the very edges of the medical system with access to absolutely no resources or support. It can even turn into a kind of PTSD, leaving you too afraid to cross the threshold of a medical establishment because you already know what the collatoral damage will be to your nervous system every time so why risk it again. You eventually learn to try to insulate yourself against the endless gaslighting by not exposing yourself to it at all but this isn’t helpful to a chronic health situation or for the nervous system of the person handing all that alone, especially as you age and if symptoms become harder to handle….yet this has been my universe for so long now!

Dr Houser nails it with these words when she describes “The experience of a vulnerable person who is suffering, who has incurred a lifetime of negative healthcare encounters that are downright traumatic. The invalidation, the dismissal, the gaslighting and now you can stack those all up. And then you’re in this environment and your limbic system is immediately like, oh, this is not going to go well, I don’t know what it is yet but there’s some vibe…this is not the one for me. But I can’t walk out because I’ve learned these rules that I can’t walk out of encounters because I’ve only been here for two seconds but, you know, your wise limbic system knows and sounds the alarm…I think so many people get to that place where it’s just like I really don’t know what to do anymore, like I’ve tried everything”. It’s the short reason why her clinic exists as an alternative, at least for some lucky people in the Vermont area.

Without wanting to get sidetracked into my own personal experiences too much, here are just some of the factor about my AuDHD that could be said to repeatedly tripwire systemic disturbances in my health status in a way that suggests they are all involved with one another and far too entangled to be regarded as separate issues.

Sensory differences are a very big factor playing an absolutely pivotal role. For instance, environmental influences outside my control (have always and now more than ever) trigger an exaggerated mast cell response and dysautonomia, allergies etc. in me and as these factors cannot always be controlled, predicted or avoided, what hope do I have of controlling the mast cell response that comes on strongly as a result? Then, when symptoms are pushed through (because I literally can’t stop the daily demands and seemingly have no choice but to ignore symptoms that seem “illogical”) they only elicit even more symptomatic responses from my body as time goes by, leading towards that state of “chronic”. For instance (this is very topical because there have been several powerful X flares off the sun this week and therefore several nights of enhanced geomagnetic conditions, all profoundly affecting me during my so-called “sleeping” hours) I believe that I have always been hyper-responsive to solar events in a way that would not be considered “usual” but which I associate with my neurodivergence. During such active phases, it doesn’t really matter how much I do to try and self-regulate my body systems (eg. by keeping my thoughts and my daytime activities very calm and relaxed etc.), the sun generally has the last say or at least the effects of it being so active can’t be fully prevented in my body, only mitigated by lowering my general sensory load and not expecting too much of myself on those more active days. These are facts of my life but who is prepared to take them seriously?

Under these circumstances, mast cells become more active, inflammation increases and multiple other symptoms ensue, is the usual format. Changes in seasons, temperature and weather systems, sunlight intensity, exposure to EMFs etc have a similar effect but what if its all to do with mast cells in every case, which can really affect every system in the body; things like allergies to foods, candida in the gut, the way nerves respond to subtle sensations, the way you experience the temperature in a room or the feeling of being upright on your feet. When mast cells are very active, alarm bells can go off all the time for countless reasons and they interact with just so many other factors.

Other typical factors playing their part in chronic health outcomes when also neurodivergent may include a tendency to wake up after one sleep cycle (this has apparently been found to be common with autism, it certainly happens to me every night), also low melatonin (not only does this play a key part in sleep quality but is a free radical scavenger so to be without it can dire and it can also play a key role in small fibre neuropathy which, if you have it, can affect proprioception and sensory sensations, even make you feel unsafe or unstable leaving the house). Perhaps even thoughts around relaxation not being associated with safety, something I know I can relate to (and which past trauma certainly contributed to), could be a factor in preventing true relaxation and surrender to sleep, compounding fatigue. Interoception can be ropey, to the point we can’t tell when something we are doing is having an adverse effect on us till long after the event (PEM in a nutshell). We can also commonly get stuck in behaviours and patterns, caught-up in a negative loop. We can get sucked into defensive monotropic mode…doing the monotropic thing to avoid the things we don’t like (and as I type this I realise my blog writing today has been that very thing as I’m in a lot of acute nerve pain today, with no capacity left in me to be social, so hyperfocusing on getting this out there, even though I know I should have got up and moved much more, had more variety in my activities etc., has made this activity into a kind of defensive cave I’ve been sitting in with a stance of “leave me alone, I’m busy…”).

I certainly know, from personal experience, that disturbed sleep several nights on the trot, combined with increased mast cell response can lead into muscle hypertonicity or laxity, (leading to) sleep apnea, lower blood oxygen, dysautonomia and POTs symptoms, gastrointestinal and bladder disturbances, dehydration, restless legs, neuropathy, vivid dreams, long covid symptoms (which is known to be linked to all of the above), etc, and that these interrelated effects can trigger a maelstrom of other multi-systemic symptoms lasting for days, weeks or months afterwards, especially in the case of disrupted sleep patterns. Such random-seeming variables can therefore be chaotic in the context of trying to avoid (worsening) chronic health outcomes, especially as you age, pass menopause, lose resilience, develop thinner skin boundaries, experience worsened connective tissue viability, take longer to recover etc.

So, what if knowing that these things are all part of a complex of interrelated things, or at least by stopping seeing symptoms in isolation, can give you a different perspective, give you the edge. Instead of tackling the mast cell releases in your body piecemeal, for instance changing the whole of your diet because you think you are reacting to a certain food (though doing that can be a part of the mitigation of symptoms, within reason and without throwing out all the healthy foods in a panic), its more about noticing then reducing the sensory triggers, knowing what particularly rocks your unique neurodivergent nervous system, keeping things more stable the way you prefer them, having a set of preferences you prioritise like certain fabrics near your skin or adjusting the airflow in a room, reducing certain types of situation from your life, removing the bigger onslaughts, if not forever then at least when your nervous system is most activated at the point of burnout. Perhaps you learn the ropes of what to do following a time of particularly intense exposure to triggers (as I know I went through the whole of last year and in the early part of this one…) so that you can calm things down and bounce back the quicker. It doesn’t have to be forever but can be useful to know when you most need those rescue accommodations rather than going down the rabbit hole of feeling like some terrible emergency is happening to your health that you now have to work out how to fix.

Through this lens, I can see how I might be (inevitably) a lot more triggered this year after my house move…a move that was highly necessary to get me away from very heightened stress, numerous environmental triggers and high exposure to pollution where I was living before, all of which were triggering repeated reactions in my health (so good, that was a proactive thing to do and things are already much better now) but then I also need to recover from the move itself, which is understandable, and that means I still have the aftermath of the heightened mast cell release phase to get over (call it a kind of PEM if you like). My whole system has been jittered up, with multiple repercussions across many body systems so now to stem the flow of one over-response after another. I can see the logic of this…and thus work with it in a way that I always struggled to cope with the seemingly unfathomable, illogical chaos of multiple health issues randomly firing off whenever they felt like it!

A key word here is hyperarousal, a state which a neurodivergent person already equipped with hypersensitive “equipment” can so easily get into when they have been through a great deal of stress and trauma. When I have been through a lot lately, my whole system can feel under threat, meaning all kinds of things can hyperarouse me. Vibration in the car (something I wrote about recently; interestingly, Dr Houser mentions this as a potential trigger in the podcast interview above). Changes in temperature. Wind on my skin. Mast cells are “just” the mediator of the perceived threat when this happens; they flare up and, when a whole myriad of symptoms then occur on the back of increased inflammation and heightened pain, I’m left in no doubt that I am under some sort of “attack”, the old challenge being to determine from where: was it what I ate, what I was exposed to yet it can feel so arbitrary, so random, like it’s “everything” all at once. What if, by looking at it as various iterations of mast cell release, it starts to make a lot more sense and becomes a degree simpler, especially when seen as part of a complex of things that are all interconnected; so, in other words, you work to calm down the one thing and it helps calm it all down.

There are things you can do to lighten the load of potential mast cell triggers (and I have written about them countless times before). Dr Kustow addresses mast cells and their relationship with ADHD in a lot of detail in his new book, as above, and outlines many of the things you can do (so many of which I have addressed over the years) to try and mitigate a mast cell activation issue, if you have one. So, though the problem (in my experience) likely doesn’t go away as such when you are neurodivergent, since there always going to be triggers, it is possible to calm the whole situation down once you start to look at things this way….and to see how certain, perhaps unavoidable, situations have a mast cell releasing effect that could have far reaching repercussions but that some of them are, indeed, avoidable or reducible once you start to perceive your own particular constellation of things and how they all overlap.

A hyperarousal phase such as began for me this summer, for instance, could be as a result of mast cells unleashed by the spade load months ago, since they apparently have a shelf-life in the body of around 6 months once released (again, Dr Houser talks about this in the podcast above). This certainly helps explain a PEM response that occurs weeks, or even months, after the event that you feel you should have got over by now; but then, if you fall straight into the trap of worrying about the onslaught of symptoms, how can those mast cells ever cease firing, with your whole system now in a state of constant panic/alarm?

In other words, it could have been the whole house moving process with all its inherent stress, the long exposure to mould in the house we rented, catching covid during the move, a much more exposed diet than usual, all the extra physical exertion involved, etc., that unleashed a whole mast cell explosion in my body that I am now dealing with as the after effects of it all, months later. So the key is to then avoid unwittingly unleashing even more, the consequences of which could take a whole other 6 months to calm down, and you do this by taking the (physical but also cognitive) pause, minimising internal and external stressors yes, but also allowing yourself to know, deep down, that this too shall pass, things will settle down again..as long as you don’t fall into a pattern of constantly worrying about the current health situation. This part is the key…the need to feel calm and controlled, knowing that if you do all the right things you likely will get back to your baseline again; you just put one foot in front of the other and keep the objective of refinding a better baseline firmly in your line of sight.

So, yes, mast cells feel like a very key part to the “all the things” equation and getting to know them better, in your own life, can be powerfully enlightening but they are, still, just one part and a whole constellation of factors doing their merry dance together.

Illness and fatigue can then exacerbate social isolation and lead to depression. There can be considerable grief around the fact of having the long-running illness itself, including an internal struggle to process all that grief, which can then add itself to all the other grief to do with being neurodivergent, which is not inconsiderable in a lot of cases (after a lifetime of adverse experiences, which mount up as you age). As mentioned above, there can be just so much accumulated grief around not being seen, believed or taken seriously, of being medically gaslit or even as a result of internalised ableism.

As above, there is all the environmental stress, which is not the “in your head” kind of stress but something that comes at you from all sides of your body, like an onslaught, all the time…its wearing and exhausting! Mitochondrial dysfunction is also very common with autism and profoundly affects energy levels. And then there’s the perfectionism, the boom and bust cycles that come from having “all or nothing” thinking, the exhaustion of years spent masking, the belief that you have to try harder than everyone else to be seen, or that if you don’t do the thing now while you have the energy or the awareness to do it, you’ll either run out of stamina or forget to do it later. The effect of all these things can add up in you health profile and are touched upon in the podcast conversation above.

Another thing: as I continue to work at finding a better energy baseline, I can’t help but notice how I can’t cope (nor ever could…) with typical units of time eg. the whole Monday to Friday culture. Truthfully, I could only ever deal with smaller units of time, with inbuilt flexibility to allow me to stop, rest and recover before burnout happened, so what happens when forced to push through and adhere to patterns that don’t work with my inherent “ideal” health model for years on end? In truth, I can manage no more than one or two more active days followed by two or three days at leisure to recover (though, these days, it’s more like one day at a time before I need to stop). When forced to do otherwise, I burn out and become ineffective very rapidly, with a snowballing of negative effects whereas, allowed the appropriate work rhythm and respite periods, I can be extremely effective and sometimes extremely gifted in my output; these are two sides of the same coin. For a while there, I coped because I was self-employed and orchestrated my own hours but it was in the years of trying to fit with the “normal” system that I took the biggest, most lasting, hits to my health and I still struggle with the more “typical” expectations of human time management, even socially. In effect, ME/CFS has gained for me the better pattern of life that I needed these last 20 years, gaining me some considerable time-autonomy, though not by the most ideal means and with outcomes I would rather have avoided since they hardly enhance my freedom to enjoy life!

Consistency is key to establishing a baseline when you live with ME/CFS but my energy isn’t ever consistent, it ebbs and flows, bursts and sputters, according to all the many overlapping neurodivergent things going on. This can’t help but put me into conflict with, not only the way time is universally organised (at least by most of the world), but with the objective of creating a steady routine and holding to it for long enough, so that my body can find a footing. Recovery from a PEM phase is all about the consistency; without it, I would have got nowhere these last months and it has still been arduous going, even when I know it is helping me. The best I can do is create enough of a stable routine to hold up the sides of my life (which my autism kind of demands anyway, though my ADHD factor can start to feel caged-in by too much routine…) but then also factor in enough scope for both scheduled and unscheduled breaks, to allow myself to promptly rebound from some of these variable factors when they inevitably tire me out. Between times, I try to factor in some positive stimulation of the lower key variety but keeping all these balls in the air is an especial challenge for me.

It takes setting boundaries and being utterly determined to create my own best life, whatever that may look like and in the face of any external conflict or criticism (and the endless people pleasing and search for external approval has to end). This is a prime example of one of the ways that learning more about the neurodivergence aspect of my particular “somatic super system”, then accommodating it, could help me rein in some of those other aspects prone to throwing me into disarray, such as the constant boom and bust cycles that wear me out. Ultimately, if I don’t work with my body the way it is designed to operate, it’s going to shut me down anyway.

One final thing, I have recently embarked on a journey with CFS Health who offer a foundation course for helping people with ME/CFS, long covid etc. to regain a better baseline. This takes a holistic approach and therefore, whilst not addressing autism or ADHD as such, I am not finding that it has any particular conflicts with all that I have shared above except that, maybe, I do need to take my neurodivergent factors into account when I set any expectations for achieving strict consistency with my routines etc., as is advocated by the course, otherwise I am only setting myself up for feeling like a failure at the start if I don’t at least take them into consideration. That said, committing to the current baseline of what I can manage to do is key in being able to gradually increase capacity further down the line, which is core to the CFS Health approach and something Dr Houser also talks about in the podcast, so it’s time to take responsibility for actions and show some agency over what I spend time doing (using the Visible app is helping me to more-quickly notice times when an attention lapse causes me to fall off those rails and do too much, at least while I get better at this). I am certainly finding quite a few other ADHD people in the members forum, which doesn’t surprise me at all given such strong links with ME/CFS.

The CFS Health course has already given me a lot of new optimism and the sense of regaining a footing as it is helping to gently guide me back onto the right path of calming things right down whilst sensing that there is the capacity to achieve enough progress, by following its methods, to get somewhere much more comfortable that I can then look forward to maintaining, as my longterm baseline health status, if I keep applying what I have learned. I also see the information I am gathering from it as part of the bigger picture I am now forming, one which also includes diving into Dr Kustow’s book and other material some more and also looking further into all the various resources on Every Brain Belongs, ongoing, as they continue to gather and add new data.

Its all part of building a much broader view, a pulled-back from the minutae perspective, of the whole constellation of who I am and what I most need in order to hold my health more steady and thus thrive a lot more consistently in this post neurodivergence awareness phase of my life (it being the sizeable missing factor in the early years of my health journey). I’m feeling compelled to spend far less time sucked into research or seeking help about specific issues and much more energy (as I start to regather it) concentrating on the bigger picture of me and how I’m feeling right now, what I instinctively know that I need in this moment, including the need to regain a more resilient sense of optimism; no more falling down the cracks. So I might be deeply absorbed in all this for a while and there’s a good chance I will write far less whilst I give myself over to it but this is certainly a positive note to pause on.

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest and anecdotal purposes only. They are not a substitute for medical advice, diagnosis, treatment or prescribing. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any mental or physical symptoms that concern you.