In a recent i paper article, Suzanne O'Sullivan opines about "seeing 20-year olds with 20 diagnoses". I saw the headline, and read the article expecting to see at least one example of these people with "20 diagnoses", so that this article could have been exploring co-morbidity, and linked chronic conditions (eg, where multiple impacts often or always occur together, but are diagnosed separately because of the way the healthcare system functions, or where one condition triggers a cascade health impact, which can result in multiple diagnoses, although in reality, the cascade impacts are more so symptoms of the original, initially diagnosed, condition.)
There were no examples of these people with "20 conditions". Not even examples of the kinds of conditions which are being seen in the same person. Conditions, in fact, were never actually mentioned, except as something of "questionable value", especially if they "require constant vigilance of your body" (which is...a common reality of most disabilities and chronic conditions), and the trending diatribe against "overdiagnosis", and a rant about "all these accommodations" which "aren't making any objective difference!" - I'll be discussing that statement in more depth later in this post, because it very much needs a separate discussion; potentially, it needs and deserves its own post, and it may in fact get one.
Let's start with the idea of people having "20 different diagnoses". On the surface, skepticism about the validity of one person having this many different conditions is very warranted. It seems common sense to be wary of whether the prevalence of social media and parasocial relationships may be causing people to believe they have a condition based off having two or three traits/experiences, which are part of a medical condition, but also can just be "symptoms of being human and existing in a body." Once we go below that surface, and look slightly askance at both the commonality and the sense of "common sense", however, we see a different story; one of cascade effects, links, and systemic disregard as a contributing factor to multiple disablement.
Firstly, let's break down the "common sense" that it's "just not realistic" that someone can have "20 different condtions". I have never claimed that I can't work, when I've been unemployed, I have always been pursuing a course of study, and often volunteering, I have previously handled all of the "mental load and domestic labour" of keeping a home clean and maintained, and caring for pets when I lived alone, and now that I'm married, still do a chunk of that work, as well as providing supportive assistive care for my wife, who is also disabled, in different ways to me. If you met me on an occasion where I'd put my cane away in my bag, because I felt comfortable navigating the space without it, you probably would assume I was completely able-bodied and neurotypical. But I have 15 conditions, all formally diagnosed, and either being treated, or formally recognised as not being able to be treated, at least not in ways which are accessible to me at this time. (diagnoses underlined):
1. Lack of Achilles tendon in my left ankle, leading to gross motor instability
2. Chronic largyngitis
3. Glandular fever (I carry the virus, and it flares in response to stress, extreme over-exertion, and times of "run of the mill" illness)
4. Schizophrenia
There were no examples of these people with "20 conditions". Not even examples of the kinds of conditions which are being seen in the same person. Conditions, in fact, were never actually mentioned, except as something of "questionable value", especially if they "require constant vigilance of your body" (which is...a common reality of most disabilities and chronic conditions), and the trending diatribe against "overdiagnosis", and a rant about "all these accommodations" which "aren't making any objective difference!" - I'll be discussing that statement in more depth later in this post, because it very much needs a separate discussion; potentially, it needs and deserves its own post, and it may in fact get one.
Let's start with the idea of people having "20 different diagnoses". On the surface, skepticism about the validity of one person having this many different conditions is very warranted. It seems common sense to be wary of whether the prevalence of social media and parasocial relationships may be causing people to believe they have a condition based off having two or three traits/experiences, which are part of a medical condition, but also can just be "symptoms of being human and existing in a body." Once we go below that surface, and look slightly askance at both the commonality and the sense of "common sense", however, we see a different story; one of cascade effects, links, and systemic disregard as a contributing factor to multiple disablement.
Firstly, let's break down the "common sense" that it's "just not realistic" that someone can have "20 different condtions". I have never claimed that I can't work, when I've been unemployed, I have always been pursuing a course of study, and often volunteering, I have previously handled all of the "mental load and domestic labour" of keeping a home clean and maintained, and caring for pets when I lived alone, and now that I'm married, still do a chunk of that work, as well as providing supportive assistive care for my wife, who is also disabled, in different ways to me. If you met me on an occasion where I'd put my cane away in my bag, because I felt comfortable navigating the space without it, you probably would assume I was completely able-bodied and neurotypical. But I have 15 conditions, all formally diagnosed, and either being treated, or formally recognised as not being able to be treated, at least not in ways which are accessible to me at this time. (diagnoses underlined):
1. Lack of Achilles tendon in my left ankle, leading to gross motor instability
2. Chronic largyngitis
3. Glandular fever (I carry the virus, and it flares in response to stress, extreme over-exertion, and times of "run of the mill" illness)
4. Schizophrenia
5. Depression
6. Generalised anxiety disorder
7. Social anxiety
8. IBS (D)
9. Glaucoma
7. Social anxiety
8. IBS (D)
9. Glaucoma
10. Retinitis Pigmentosa
11. Cataracts (inoperable, in my case)
12. FEVR (Familial Exudiative Vitreoretinopathy)
13. PTSD
14. Dissociative Identity Disorder
15. C-PTSD
11. Cataracts (inoperable, in my case)
12. FEVR (Familial Exudiative Vitreoretinopathy)
13. PTSD
14. Dissociative Identity Disorder
15. C-PTSD
16. Auditory Processing Disorder
I also have 5 undiagnosed, but highly likely, conditions:
. Chronic fatigue
. Hip dysplasia
I also have 5 undiagnosed, but highly likely, conditions:
. Chronic fatigue
. Hip dysplasia
. Chronic sciatica
. Non-epileptic seizure disorder
. Potential early symptoms of Parkinson's
That's twenty-one conditions, the overwhelming majority of them formally - and in several cases, repeatedly - diagnosed. Eleven of the sixteen diagnosed conditions have been diagnosed by specialist clinicians following referral from my GP. Almost all of my diagnoses were received before social media existed, and around 70% of my diagnosed conditions were only diagnosed after objective clinical tests - blood tests. Brain scans. Body scans. X-rays. Things that aren't vibe-based.
And then we get to the conditions which have been successfully treated, and therefore no longer exist for me:
. Endometriosis
. PCOS
. Congenital Adrenal Hyperplasia
. Non-epileptic seizure disorder
. Potential early symptoms of Parkinson's
That's twenty-one conditions, the overwhelming majority of them formally - and in several cases, repeatedly - diagnosed. Eleven of the sixteen diagnosed conditions have been diagnosed by specialist clinicians following referral from my GP. Almost all of my diagnoses were received before social media existed, and around 70% of my diagnosed conditions were only diagnosed after objective clinical tests - blood tests. Brain scans. Body scans. X-rays. Things that aren't vibe-based.
And then we get to the conditions which have been successfully treated, and therefore no longer exist for me:
. Endometriosis
. PCOS
. Congenital Adrenal Hyperplasia
(These conditions receive the accolade of OBT - Overtaken By Transition - if I hadn't been a trans man, or hadn't been able to transition, they likely would not have been "treated", and would be a very dominant impact in my life.)
That's now brought us up to a medical history which features twenty-three conditions, fully 80% of them formally diagnosed by a clinician, mostly following objective tests.
Then, finally, we have the fact that, as a trans man, I also have a formal diagnosis of Gender Dysphoria, which, as with the overwhelming majority of my diagnoses, followed clinical assessment by multiple separate clinicians, on different dates, each several months apart.
I don't consider gender dysphoria to be relevant to my life; I still experience some instances of it, but it is more logical, to me, to correlate those with my anxiety diagnoses.
So, if we include both no-longer-relevant diagnoses, and "very likely, but not formally diagnosed" possible conditions, I bring over twenty separate "issues", and I won't be out of my thirties for another three months.
Now, how many of those conditions require "vigilance of my body" (or mind)?
. All four of my sightloss conditions (glaucoma, FEVR, cataracts, retinitis pigmentosa) - because, if my sight changes in any way, it usually ends up as an A&E visit - even when I approach it as a "trip to the opticians" situation.
. IBS - I need to notice how my gut is responding to known triggers, which, for me, are cold, stress, carbs, fibre, and spice. I need to notice if my gut symptoms are causing whole-body symptoms.
. Gross motor instability - I need to be aware of whether the pain or un-balancedness I'm experiencing is something I can push through, if I need to change up my plans, or if I need to rest.
. Hip dysplasia - as above
That's a minority of my conditions, and even then it's not a second-by-second deal; it's a check-in; mostly a daily check-in, something I do while I'm taking my medications, or working through physiotherapy. It doesn't dominate my life, it doesn't distract me from personal projects, interests, family responsibilities, or work (when I am successful in securing employment.) I don't let twinges or niggles derail my plans - I'm far more likely to ignore body/mind red flags, and push through (I once continued going to work with what turned out to be pneumonia, until I collapsed on my way out the door - to work - one day.)
Other people are going to have more conditions which require that level, or higher, of awareness - not because those people are "unnecessarily diagnosed", or their diagnoses "don't actually serve them", but simply because that's how bodies and brains are sometimes. Life can very much suck, for very many people, a very great deal of the time, and Suzanne O'Sullivan pursing her lips and having a problem with that isn't going to change that.
I don't announce all of my diagnoses in everyday situations, and I suspect most people don't; Suzanne O'Sullivan is a clinician. She is a medical professional - she has access to peoples' medical records when she sees them in her professional role. They don't even have to bring up their diagnoses - she will have a screen scrolling with them. She knows about those "20 different diagnoses" because she is part of a system that tells her everything about someone, regardless of whether she needs to know everything about them.
That's a very specific situation.
I mention diagnoses when they will impact the way I need to work, or can be expected to perform; my sight loss conditions aren't mentioned individually, they're encapsualted by the objective fact that I am registered legally blind.
I mention my schizophrenia, PTSD, and C-PTSD when I need to request work from home consideration, or following an episode.
Everything else? It very rarely gets mentioned at all, unless and until it causes a problem in front of other people who need more of an explanation than "bodies suck."
I don't even bring it all up in medical situations - but every clinician who meets me, no matter what I'm in front of them for, will know about all of my conditions. That's part of the reason I'm very wary of actually engaging with clinicians.
However all of those conditions, including those that are undiagnosed, inform the way I live, and experience being human. They are all, in that sense, relevant to me, even if they are not always relevant in every situation I may be in.
That's going to be the case for the vast majority of people with multiple conditions.
Now, I will acknowledge, I am potentially a little bit different, and perhaps more likely to gain Suzanne O'Sullivan's approval for; as a qualified naturopath, I have moved away from prescription medication for all of my conditions apart from my sight loss conditions, which require prescription eye drops, and manage them through full-spectrum naturopathy, which includes diet, lifestyle, elemental therapy, exercise, and supplements.
I have previously been medicated for schizophrenia, depression, and generalised anxiety disorder - combination lamotrigine and quetiapine for schizophrenia, sertraline for depression, benzodiazepam for generalised anxiety. While the prescription meds worked more quickly to bring stability, they were a sledgehammer to my wider brain/body system - the side effects impacted my ability to function effectively as much, though in different ways, to the conditions they were prescribed for.
The naturopathic treatment takes longer, gives a "spikier" profile (more dips and peaks, rather than the mostly flat lands of rx meds), and needs to be adjusted more frequently than rx treatment, but, overall, I feel better on it.
I have also had formal therapy - CBT, Freudian and Jungian psychoanalysis (separately), and EMDR, as well as following self-taught journalling therapy.
I have a very strong belief that, even if you just think you might have a self-researched condition, you have to also self-research accessible self-directed management techniques for that condition. You have to take responsibility for things you're going to claim. Sure, "therapy is expensive" - but you can buy a notepad and a pack of pens for at most £3. If you have a smartphone, your Notes app is included for free. If you have a laptop or a PC - you'll have a wordprocessing programme, or the ability to connect to the internet and access Google Docs. Absolutely, "therapy isn't accessible for everyone" - but journalling can be done through writing, drawing, or voice notes.
Basic physio exercises for most conditions are widely and freely available online; many physiotherapists also do free video content. There are books available from libraries that centre physiotherapy exercises which are accessible for most physically able-bodied people. (Absolutely, the dearth of physio that is accessibly for multiply-disabled people, and those with chronic fatigue and chronic pain conditions, needs to be addressed, but that doesn't stop able-bodied people from engaging with self-directed physiotherapy.)
Condition-management nutrition regimes are also widely available online, and a little bit more engagement with Google will bring up ways you can adapt and adjust them. If you are in an okay financial position, you can also hire professional dietitians and nutritionists - if you go down this route, make sure they are actually fully informed about your disabilities and conditions, not just "aware of" them.
I've mentioned co-morbid, linked conditions, and cascade impacts; so, do those apply to my nineteen diagnosed conditions?
Absolutely!
. Glaucoma, Retinitis Pigmentosa, Cataracts, and FEVR are all linked under the umbrella of "legally blind" or "sight loss"; furthermore, the cataracts are inoperable because of the FEVR and glaucoma. The glaucoma itself is a linked condition to the FEVR.
. It is more than likely that social anxiety, generalised anxiety, and depression are all just linked conditions to schizophrenia - that is, they will always spring up in people who have schizophrenia
That rolls eight separate conditions into four, reducing the total number of diagnosed conditions to eleven.
If we also consider the undiagnosed conditions, then it is likely that hip dysplasia and chronic sciatica are both cascade impacts of the diagnosed missing Achilles tendon.
That rolls a further two possible conditions into one; so, overall, we're now at thirteen.
Then of the "OBT" conditions, the PCOS and endometriosis were almost certainly linked, and those may both be linked to the Congenital Adrenal Hyperplasia - so, that's three conditions into one.
It's still the case for me that the majority of my diagnoses are independent and distinct. Meh - it is what it is. (Although exactly what it is is...very unclear at this point, honestly.)
I objectively have a lot going on, even if we only look at the non-OBT, clincally diagnosed stuff. But I'm still not "making it the core of my identity", as Suzanne O'Sullivan, and many government ministers, believe is the case for those with multiple conditions. I don't bring it up "at every opportunity", I don't "hide behind" my diagnoses. Many of them impact that way I need to work, the way I experience social engagement and interpersonal relationships, and the way I respond to stress. I'm not even claiming I can't work because of any of my conditions - it is harder for me to find work that I know I will be able to be reliable with, and which won't worsen my conditions. It's not harder "because my needs are so complex!" - it's harder because of systemic attitudes, and behind-the-scenes orchestration at central government level. Realistically, the kind of work I need should be very straightforward to find:
. Fully remote based - I can do in-person meetings if they're not every day/every week, I have at least 48hrs notice of them, and there's a plan in place for someone to be able to give me a lift there and back if public transport isn't an option, and taxis would not be affordable, but working from home as the default means I can work even when I'm in pain, the IBS is flaring, I'm having panic attacks. My home set up already accommodates for my sight loss.
I don't work comfortably in open-plan, busy/crowded settings because of the APD; working remotely? I control the background environment. I don't bother anyone by wearing noise-cancelling headphones, or playing background videos (which can help my focus when my APD decides to create noise out of silence, as well as distracting me from noise going on outside/around the house.)
I'm too on-edge and hypervigilant around people I'm not intimate with to work efficiently in an in-person setting.
My sight loss includes total night blindness, which means, November-January, I need to leave work by 4pm latest. Working from home, I can work as long as is needed. I am medically banned from driving, which makes it more challenging to be considered for many jobs (UK employers treat driving licences as proof of adult competence), as well as to actually get to and from jobs reliably (my local area is...not great for employment, so I'd have to travel. My wife is also unable to drive because of her disabilities.) Being blind also means I struggle in crowded, busy environments, or places which have a lot of furniture (eg, hospitality/retail settings), and means I can't see well enough to use most touchpad systems (eg, modern till systems.)
I get easily overwhelmed in crowds, and in busy environments - working from home, that's not an issue; my work area can be completely tailored to my comfort.
I have significant issues with gas, despite medication, I need to go to the toilet frequently, and sometimes I have passive fecal incontinence (for which I wear incontinence pants) - working at home? None of that's a problem. In-person? It's going to get called up as "distracting" and "suspicious." Disclosing the IBS brings an assumption that I'll "smell of shit", and that it will be obvious when I've soiled myself, which isn't acceptable in a workplace.
I have literally been kicked out of a job - with a Disability Confident employer - because colleagues decided my depression was "negativity"; I literally got told I was "affecting morale" and "no one here likes you." I've consistently had other employers complain about my "attitude", and that I was "causing colleagues to worry about (me)" when I was just...showing up as someone with depression. Working from home? No one notices I'm depressed.
I've also been sacked from a job because I had a schizophrenic episode while at work - at home? My wife is usually around to check in with/on me, and advise if she feels I may be in a flare. If I catch a spiral before it enters a flare, I can handle that without anyone else ever even being aware that there was a problem.
My APD makes it difficult for me to handle phone calls. My sight loss means I can't see video or screen shared content, and need printed documents to be in a particular font, size, and layout - people are way more amenable to emailing me when I work from home.
And, finally...working from home, none of these accommodations cost an employer anything. They're just part of how I work.
That brings us neatly on to Suzanne O'Sullivan's other complaint; that "although people self-report 'feeling' more supported, all these accommodations aren't resulting in objective improvements!"
That's a really clear statement of Suzanne O'Sullivan's position, but one which I feel most people, people who are not disabled or chronically ill, aren't going to pick up; Suzanne (and most able-bodied, mentally well, neurotypical people) believe that accommodations will make a person 'not disabled'. I've literally been presented with that reality in an NHS role; I was directly told by my line manager that "we've given you all these accommodations so that you can essentially be an abled person at work." ("All these accommodations" was literally a larger monitor, and screenreader software. They cheaped out on the software, and didn't get the full version of, so it didn't actually work anyway for 90% of what I needed it for, and the larger monitor was literally just a 50" TV with a HDMI port...) I'm legally blind. Accommodations like this are necessary for me to work at all. They're never going to mean that I'm basically no longer blind in the workplace.
Accommodations mean that someone can work whilst being disabled. Not that they're "not actually disabled while the accommodations are in place."
If your position is "objective improvement" is a disabled, neurodivergent, and/or chronically ill person becoming abled, neurotypical, and/or generally well, then no, you're not going to see "objective improvement" - but that's not the purpose or the point of them. Without accommodations, the welfare bill would quite literally cripple the economy - you think it's bad now? You think it's "unaffordable" now? Refuse accommodations because they don't do what they can't do - make a disabled/neurodivergent person abled/neurotypical - and the cost of welfare is going to skyrocket, because disabled and neurodivergent people will literally be unable to engage with the workforce at all.
Reminders I like to return to frequently in disability discourse: glasses (the eyewear, not the drinks receptacles) are accommodations.
Cars are accommodations. (For the human inability to walk long distances whilst carrying heavy/bulky things, or to travel long distances quickly.)
Pacemakers are accommodations.
HRT for cisgender people is an accommodation.
There are so many accommodations which are just blithely accepted as "completely normal" - that's how it should be for all accommodations.
The "feeling better supported" is the improvement. Find a f-ing way to make that objective.
That's now brought us up to a medical history which features twenty-three conditions, fully 80% of them formally diagnosed by a clinician, mostly following objective tests.
Then, finally, we have the fact that, as a trans man, I also have a formal diagnosis of Gender Dysphoria, which, as with the overwhelming majority of my diagnoses, followed clinical assessment by multiple separate clinicians, on different dates, each several months apart.
I don't consider gender dysphoria to be relevant to my life; I still experience some instances of it, but it is more logical, to me, to correlate those with my anxiety diagnoses.
So, if we include both no-longer-relevant diagnoses, and "very likely, but not formally diagnosed" possible conditions, I bring over twenty separate "issues", and I won't be out of my thirties for another three months.
Now, how many of those conditions require "vigilance of my body" (or mind)?
. All four of my sightloss conditions (glaucoma, FEVR, cataracts, retinitis pigmentosa) - because, if my sight changes in any way, it usually ends up as an A&E visit - even when I approach it as a "trip to the opticians" situation.
. IBS - I need to notice how my gut is responding to known triggers, which, for me, are cold, stress, carbs, fibre, and spice. I need to notice if my gut symptoms are causing whole-body symptoms.
. Gross motor instability - I need to be aware of whether the pain or un-balancedness I'm experiencing is something I can push through, if I need to change up my plans, or if I need to rest.
. Hip dysplasia - as above
That's a minority of my conditions, and even then it's not a second-by-second deal; it's a check-in; mostly a daily check-in, something I do while I'm taking my medications, or working through physiotherapy. It doesn't dominate my life, it doesn't distract me from personal projects, interests, family responsibilities, or work (when I am successful in securing employment.) I don't let twinges or niggles derail my plans - I'm far more likely to ignore body/mind red flags, and push through (I once continued going to work with what turned out to be pneumonia, until I collapsed on my way out the door - to work - one day.)
Other people are going to have more conditions which require that level, or higher, of awareness - not because those people are "unnecessarily diagnosed", or their diagnoses "don't actually serve them", but simply because that's how bodies and brains are sometimes. Life can very much suck, for very many people, a very great deal of the time, and Suzanne O'Sullivan pursing her lips and having a problem with that isn't going to change that.
I don't announce all of my diagnoses in everyday situations, and I suspect most people don't; Suzanne O'Sullivan is a clinician. She is a medical professional - she has access to peoples' medical records when she sees them in her professional role. They don't even have to bring up their diagnoses - she will have a screen scrolling with them. She knows about those "20 different diagnoses" because she is part of a system that tells her everything about someone, regardless of whether she needs to know everything about them.
That's a very specific situation.
I mention diagnoses when they will impact the way I need to work, or can be expected to perform; my sight loss conditions aren't mentioned individually, they're encapsualted by the objective fact that I am registered legally blind.
I mention my schizophrenia, PTSD, and C-PTSD when I need to request work from home consideration, or following an episode.
Everything else? It very rarely gets mentioned at all, unless and until it causes a problem in front of other people who need more of an explanation than "bodies suck."
I don't even bring it all up in medical situations - but every clinician who meets me, no matter what I'm in front of them for, will know about all of my conditions. That's part of the reason I'm very wary of actually engaging with clinicians.
However all of those conditions, including those that are undiagnosed, inform the way I live, and experience being human. They are all, in that sense, relevant to me, even if they are not always relevant in every situation I may be in.
That's going to be the case for the vast majority of people with multiple conditions.
Now, I will acknowledge, I am potentially a little bit different, and perhaps more likely to gain Suzanne O'Sullivan's approval for; as a qualified naturopath, I have moved away from prescription medication for all of my conditions apart from my sight loss conditions, which require prescription eye drops, and manage them through full-spectrum naturopathy, which includes diet, lifestyle, elemental therapy, exercise, and supplements.
I have previously been medicated for schizophrenia, depression, and generalised anxiety disorder - combination lamotrigine and quetiapine for schizophrenia, sertraline for depression, benzodiazepam for generalised anxiety. While the prescription meds worked more quickly to bring stability, they were a sledgehammer to my wider brain/body system - the side effects impacted my ability to function effectively as much, though in different ways, to the conditions they were prescribed for.
The naturopathic treatment takes longer, gives a "spikier" profile (more dips and peaks, rather than the mostly flat lands of rx meds), and needs to be adjusted more frequently than rx treatment, but, overall, I feel better on it.
I have also had formal therapy - CBT, Freudian and Jungian psychoanalysis (separately), and EMDR, as well as following self-taught journalling therapy.
I have a very strong belief that, even if you just think you might have a self-researched condition, you have to also self-research accessible self-directed management techniques for that condition. You have to take responsibility for things you're going to claim. Sure, "therapy is expensive" - but you can buy a notepad and a pack of pens for at most £3. If you have a smartphone, your Notes app is included for free. If you have a laptop or a PC - you'll have a wordprocessing programme, or the ability to connect to the internet and access Google Docs. Absolutely, "therapy isn't accessible for everyone" - but journalling can be done through writing, drawing, or voice notes.
Basic physio exercises for most conditions are widely and freely available online; many physiotherapists also do free video content. There are books available from libraries that centre physiotherapy exercises which are accessible for most physically able-bodied people. (Absolutely, the dearth of physio that is accessibly for multiply-disabled people, and those with chronic fatigue and chronic pain conditions, needs to be addressed, but that doesn't stop able-bodied people from engaging with self-directed physiotherapy.)
Condition-management nutrition regimes are also widely available online, and a little bit more engagement with Google will bring up ways you can adapt and adjust them. If you are in an okay financial position, you can also hire professional dietitians and nutritionists - if you go down this route, make sure they are actually fully informed about your disabilities and conditions, not just "aware of" them.
I've mentioned co-morbid, linked conditions, and cascade impacts; so, do those apply to my nineteen diagnosed conditions?
Absolutely!
. Glaucoma, Retinitis Pigmentosa, Cataracts, and FEVR are all linked under the umbrella of "legally blind" or "sight loss"; furthermore, the cataracts are inoperable because of the FEVR and glaucoma. The glaucoma itself is a linked condition to the FEVR.
. It is more than likely that social anxiety, generalised anxiety, and depression are all just linked conditions to schizophrenia - that is, they will always spring up in people who have schizophrenia
That rolls eight separate conditions into four, reducing the total number of diagnosed conditions to eleven.
If we also consider the undiagnosed conditions, then it is likely that hip dysplasia and chronic sciatica are both cascade impacts of the diagnosed missing Achilles tendon.
That rolls a further two possible conditions into one; so, overall, we're now at thirteen.
Then of the "OBT" conditions, the PCOS and endometriosis were almost certainly linked, and those may both be linked to the Congenital Adrenal Hyperplasia - so, that's three conditions into one.
It's still the case for me that the majority of my diagnoses are independent and distinct. Meh - it is what it is. (Although exactly what it is is...very unclear at this point, honestly.)
I objectively have a lot going on, even if we only look at the non-OBT, clincally diagnosed stuff. But I'm still not "making it the core of my identity", as Suzanne O'Sullivan, and many government ministers, believe is the case for those with multiple conditions. I don't bring it up "at every opportunity", I don't "hide behind" my diagnoses. Many of them impact that way I need to work, the way I experience social engagement and interpersonal relationships, and the way I respond to stress. I'm not even claiming I can't work because of any of my conditions - it is harder for me to find work that I know I will be able to be reliable with, and which won't worsen my conditions. It's not harder "because my needs are so complex!" - it's harder because of systemic attitudes, and behind-the-scenes orchestration at central government level. Realistically, the kind of work I need should be very straightforward to find:
. Fully remote based - I can do in-person meetings if they're not every day/every week, I have at least 48hrs notice of them, and there's a plan in place for someone to be able to give me a lift there and back if public transport isn't an option, and taxis would not be affordable, but working from home as the default means I can work even when I'm in pain, the IBS is flaring, I'm having panic attacks. My home set up already accommodates for my sight loss.
I don't work comfortably in open-plan, busy/crowded settings because of the APD; working remotely? I control the background environment. I don't bother anyone by wearing noise-cancelling headphones, or playing background videos (which can help my focus when my APD decides to create noise out of silence, as well as distracting me from noise going on outside/around the house.)
I'm too on-edge and hypervigilant around people I'm not intimate with to work efficiently in an in-person setting.
My sight loss includes total night blindness, which means, November-January, I need to leave work by 4pm latest. Working from home, I can work as long as is needed. I am medically banned from driving, which makes it more challenging to be considered for many jobs (UK employers treat driving licences as proof of adult competence), as well as to actually get to and from jobs reliably (my local area is...not great for employment, so I'd have to travel. My wife is also unable to drive because of her disabilities.) Being blind also means I struggle in crowded, busy environments, or places which have a lot of furniture (eg, hospitality/retail settings), and means I can't see well enough to use most touchpad systems (eg, modern till systems.)
I get easily overwhelmed in crowds, and in busy environments - working from home, that's not an issue; my work area can be completely tailored to my comfort.
I have significant issues with gas, despite medication, I need to go to the toilet frequently, and sometimes I have passive fecal incontinence (for which I wear incontinence pants) - working at home? None of that's a problem. In-person? It's going to get called up as "distracting" and "suspicious." Disclosing the IBS brings an assumption that I'll "smell of shit", and that it will be obvious when I've soiled myself, which isn't acceptable in a workplace.
I have literally been kicked out of a job - with a Disability Confident employer - because colleagues decided my depression was "negativity"; I literally got told I was "affecting morale" and "no one here likes you." I've consistently had other employers complain about my "attitude", and that I was "causing colleagues to worry about (me)" when I was just...showing up as someone with depression. Working from home? No one notices I'm depressed.
I've also been sacked from a job because I had a schizophrenic episode while at work - at home? My wife is usually around to check in with/on me, and advise if she feels I may be in a flare. If I catch a spiral before it enters a flare, I can handle that without anyone else ever even being aware that there was a problem.
My APD makes it difficult for me to handle phone calls. My sight loss means I can't see video or screen shared content, and need printed documents to be in a particular font, size, and layout - people are way more amenable to emailing me when I work from home.
And, finally...working from home, none of these accommodations cost an employer anything. They're just part of how I work.
That brings us neatly on to Suzanne O'Sullivan's other complaint; that "although people self-report 'feeling' more supported, all these accommodations aren't resulting in objective improvements!"
That's a really clear statement of Suzanne O'Sullivan's position, but one which I feel most people, people who are not disabled or chronically ill, aren't going to pick up; Suzanne (and most able-bodied, mentally well, neurotypical people) believe that accommodations will make a person 'not disabled'. I've literally been presented with that reality in an NHS role; I was directly told by my line manager that "we've given you all these accommodations so that you can essentially be an abled person at work." ("All these accommodations" was literally a larger monitor, and screenreader software. They cheaped out on the software, and didn't get the full version of, so it didn't actually work anyway for 90% of what I needed it for, and the larger monitor was literally just a 50" TV with a HDMI port...) I'm legally blind. Accommodations like this are necessary for me to work at all. They're never going to mean that I'm basically no longer blind in the workplace.
Accommodations mean that someone can work whilst being disabled. Not that they're "not actually disabled while the accommodations are in place."
If your position is "objective improvement" is a disabled, neurodivergent, and/or chronically ill person becoming abled, neurotypical, and/or generally well, then no, you're not going to see "objective improvement" - but that's not the purpose or the point of them. Without accommodations, the welfare bill would quite literally cripple the economy - you think it's bad now? You think it's "unaffordable" now? Refuse accommodations because they don't do what they can't do - make a disabled/neurodivergent person abled/neurotypical - and the cost of welfare is going to skyrocket, because disabled and neurodivergent people will literally be unable to engage with the workforce at all.
Reminders I like to return to frequently in disability discourse: glasses (the eyewear, not the drinks receptacles) are accommodations.
Cars are accommodations. (For the human inability to walk long distances whilst carrying heavy/bulky things, or to travel long distances quickly.)
Pacemakers are accommodations.
HRT for cisgender people is an accommodation.
There are so many accommodations which are just blithely accepted as "completely normal" - that's how it should be for all accommodations.
The "feeling better supported" is the improvement. Find a f-ing way to make that objective.
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