Yesterday, I was at the beach for some fresh air when I got chatting to a couple who had just moved to the area.

They were asking, with genuine curiosity , about my health conditions (seeing a young person using mobility aids and all that)… commenting on how… …strong it is for me to keep going with all this going on.
Complimenting my parents for the amazing love and support they give me.
Being totally unsurprised that I can’t work, and actually shocked I did for so long.

Now I don’t usually like the “inspirational” label, but…

Pain scoring, and why it’s not something that works for me…

It seems simple doesn’t it, “score your pain”…. But honestly it’s so far from that.

I live with constant pain between 4-8 out of 10. But the thing is, the difference between 4 and 8 isn’t necessarily… 1/5 …what the actual pain is, that could be constant.
It’s often how my brain and body are managing, how tired I am, what else is going on, etc…

Then sometimes you add in a pain of 3, but that feels like a 10 because my body is already super stressed… 2/5

Going to be a bit controversial here but it’s bugging me…

You won’t ever get “zero” deaths by suicide or by eating disorders (etc).

And I feel sometimes people focus so much on death avoidance that they forget to actually look at the person, and their quality of life… If our only goal is to prevent people dying, we will fail.
We can’t lose sight of what it means to actually live (not just exist/survive).

And putting “zero” targets, pursuing them like some do… I feel it can do more harm than good.

They’re meant well, but really…

People seem to be ignorant of reality... So here is the reality of what it's like for me to live as a disabled person... (A snapshot not an exhaustive list)... (Long thread)

(1/ 1. The disabilities.

Believe it or not, disabilities are disabling.
This is the case regardless of societal factors, and many of the symptoms and issues can't be solved no matter how much support... A (non exhaustive) list of my issues to follow... (2/

First Full week without any enforced "exercise" done... Conclusions so far...

1. I'm exhausted.
2. My bowels don't like it. Having to irrigate twice each day now...
3. I need to rest longer before starting again.
4. When I start again it needs to be planned carefully... 5. I don't know how the fuck I did it for so long.
6. My nutrition is fine for a NORMAL amount of exercise.
7. Exercise addiction withdrawal is very real... Physically and psychologically... It's horrible.
8. Exercise is NOT always healthy, and more is not always better.

So many of the things people advise to reduce food spending aren’t possible for everyone…

“Shop around”… not possible for people who are time poor, don’t have transport, rely on deliveries, etc…

“Use cheaper shops”… most of them are out of town, needing cars/public… 🧵 …transport which costs money.

“Select cheaper/different brands”… maybe for some but not always possible for those with ARFID or who have intolerances.

“Bulk buy”… only possible if you have the means to store the food, as well as transport it back home, also…🧵

Autism:

A disability for many.
A disorder for some.
A complex, multi-faceted, individualised condition that affects each individual differently.
A spectrum, but not a linear one.
A condition linked to multiple physical health issues, for reasons unknown… 🧵 A neurotype, a natural variation of the human brain.
A condition that is not a mental illness, but can result in mental illnesses.
A condition/neurotype that cannot be cured, but with affirmative care and adjustments some of the disabling effects can be mitigated… 🧵

“How did your parents discipline you if they didn’t smack you?”

Easily…

They talked to me. They explained why what I’d done wasn’t okay. They asked me why I’d done it to gain more insight in how to support me.

Then they’d help me verbalise what I’d done, why it was wrong…(c) …and what I’d do differently or how to react differently the next time that situation came up.

Sometimes, they’d listen to me and realise my reaction was proportionate to the situation, or understand why I’d reacted that way. In that case, they’d help me understand…(c)

Why have so many ND people "suddenly" started struggling?

A theory for just one potential reason...

So you're a Neurodivergent person (diagnosed or not), and you've spent your whole life conforming to capitalism, going through the education system, etc... (1/x) Not because it's safe or right for you, but because it's all you've ever known.
Then in 2020 things change suddenly. Everything you had gotten used to is stripped away overnight.
And suddenly you have to adapt to this totally different world... (2/x)

Throughout my adolescence, my estig disorder meant I had no testosterone, and it went unnoticed by all medical professionals.

But what does this mean, and what has it caused? A 🧵... (1/)

(This thread will talk about a lot of "taboo" topics, I make no apologies) I started puberty relatively early, age about 10 years old. I went through a major growth spurt at a similar time and all was completely normal in that sense... so I can say for certain there wasn't anything else causing my development issues... (2/)

“Why don’t you do some hobbies after work in your spare time?”

Here’s an example of a working day, please try to find the “spare time”… 🧵 1. 05:00: wake up.

2. 05:00-07:15: Getting myself hydrated, massaging stomach, doing some low impact exercises to get my body going ready for irrigation.

3. 07:15-08:45: Irrigation. This includes getting things ready, irrigating, waiting for it to finish, then cleaning up.

Been thinking long and hard about how to word this and what to say about it, as its such a raw subject for so many... but these are my thoughts on "Terminal Anorexia" based on personal experiences... 🧵 (1/) Firstly, to address the diagnosis of "Terminal AN"... I think it is a load of rubbish and doesn't actually exist how they say it does.
And I think it's more being looked at as an excuse to deny care or give up on people who could be helped (2/)

Almost exactly 5 years after my operation… What it’s like for me to live with a colostomy… a 🧵 1. It takes a lot of management.

From the 2-3 hours each morning to irrigate (including preparing and recovering), the 1/2 hours each day to help things move and work, or the careful management of food and fluids… it’s a lot in terms of time and energy.

Eating disorders in men… my personal perspective and experience… 🧵 1. It’s not just about muscle dysmorphia.
A common theme seems to be showing men in gyms, talking about muscles and having muscle dysmorphia.
Whilst this may be true for some, it’s definitely not all.

The appalling abuse of patients in mental health hospitals is a disgusting symptom of a society that still views people with mental illnesses as subhuman.
All this “talk about mental health” stuff is great, but as soon as someone is really sick, they’re isolated and dehumanised. So if anyone dare say that there is no stigma, or that we talk “too much” about it… we don’t. We don’t talk enough about mental illness and we still have so far to go.

This isn’t labels being stigmatised - it’s vulnerable people being treated in ways that no human should ever…

Some practical ways to help people with eating disorders in the workplace, schools and wider society, a thread 🧵… 1. Educate yourself about eating disorders.

Eating disorders are not just anorexia, and not just people who are underweight. They are hugely diverse illnesses and much more common than many seem to believe.

Thread 🧵:

It’s pretty much exactly 14 years since my eating disorder started (at least outwardly).
In that time my family has consistently been let down, help has been denied on more than 30 occasions, and even after hospitalisation they offered nothing… In that time my eating disorder has caused permanent bowel damage, stunted growth, no hormones for 5 years through adolescence, 5 operations, major joint issues, chronic dehydration and about half my life lost to an illness…

The parts of my disability that people don’t see, but are some of the most debilitating, 🧵… 1. The morning routine.

This is 2-3 hours *every* morning, no matter how I’m feeling or what time I have to go out that day. It means waking up 3 hours before I have to do anything, and there are no exceptions to that.

How being undiagnosed Autistic & ADHD affected me in school, a 🧵… 1. “Comfort zone”
All the way through primary school I was in a comfort zone. With people I knew, in a school I knew and it was very familiar.
Moving to secondary school, I was taken out of that. And immediately my eating disorder started. Coincidence?

We often hear about the physical risks of eating disorders, but what about how it affects our life in other ways? A 🧵… 1. Social life.
Eating disorders can be hugely isolating. A lot of social events revolve around food and/or drink which can be almost impossible for someone with an ED to manage.
EDs can also be routine-orientated, meaning even if it’s not food-related, it can still be difficult.