Tuesday, 22 August 2017

A day of pacing

The other day, as I filled in my pacing fridge magnets (available here) I thought I'd blog the way my schedule changed. I use my magnets on a board like this A3 magnetic whiteboard. but there are various ones available.

Below is the plan I put together the evening before. Actually it's the second attempt, because the first attempt included a morning full of red and orange. Which meant I realised it was too much before I'd finished it!


I like doing the first schedule the evening before, because I can usually tell roughly what 'shape' my symptoms will be the next day, and I go to sleep knowing that tomorrow is 'under control' as I wake up to a routine/schedule - and I don't have to schedule from scratch, think clearly and prioritise first thing in the morning!

How did I grade the activities? - By looking at what I currently find most exhausting - which is sitting still and concentrating. This is probably related to my POTS, but also sitting still aggravates my pain levels from my HSD too. On days like that, short tasks that involve a bit of moving about and minimal concentration are actually easier (long tasks that are active are a different matter).

At 10:00am I was on track. I'd achieved stuff, but not built up too many symptoms.

By 10:30 I'd realised the 'Challenging' - 'buffer' (writing my main social media posts for the next week) would take a lot longer, so I decided there were a few things I could move to another day - the pile of sideways activities at the bottom of my board - and I rearranged a few other tasks to give myself more time.

I then realised that the sunshine combined with a cool breeze meant it would be lovely to get outside, so I swapped colouring for 'easy gardening'. What is this? It's using my wheelchair to get outside, then sitting on the patio and pulling up the larger (easy-grip) weeds of a type that flourish in my garden and are REALLY easy to pull up by the roots. It gets me moving, takes no brain power, means I can quickly see results, without risking significant injury.

And instead of trying to schedule all my social media posts in one go (a 2 hour block of solid challenging brainpower which would wipe me out for the day), I'd do 30 mins, my timer would go off, I'd do a bit of easy gardening, then return for a bit more brain-work.

By lunchtime I was still on track with my adapted schedule and loving it. Yes, there were tasks I'd had to move to the 'another day' pile - but I didn't need to worry, because I knew they weren't essential today, and could be left for another day. Having them still written down also means I don't worry I will forget them.

Of course, other bits and bobs pop up. An unexpected (and long) work phone call etc. But by the end of the day, my schedule had been tweaked a bit more and looked like this. I'd achieved LOADS - but without feeling overwhelmed. And the things that hadn't got done were waiting for tomorrow.


On a different day, classifications of activities will be different. On a flop-day, reading is challenging - and writing coherent stuff would be impossible. Laundry (a short, minimum brain task - washer-dryer means no needing to hang wet washing out) was easy for today, another day this might be challenging. Similarly, on a bad day, basic self care items, like brushing teeth, getting dressed etc will appear on my magnets. But the concept remains the same - mix up the stuff that's mentally hard, physically hard, mentally easy and physically easy - making sure you move about frequently at what ever level works for you. Resting one part of you doesn't mean you have to lie down - just doing something different can be enough (e.g. doing something brain-easy after something brain-challenging. Or which uses legs instead of arms). I still had a few horizontal rest breaks, but walking to the kitchen and making a cup of tea after concentrating for half an hour is, for me, an excellent pacing tool. (on a bad day, 'move about' might mean lie down flat and gently stretch/move different parts of me - on a good day it might mean something a lot more energetic.)

I don't use the magnets every day, but whenever I start to feel my to-do list weighing down on me, or I've had a bit of a 'splat day' and am trying to get back into normal life, or my motivation is slipping, I get them out. Because they turn a mountain of tasks into manageable sections, help me keep the balance between challenging myself and respecting my limits, and I see my progress rather than only seeing the pile of tasks that still remain.  The magnets aren't there to dictate my next activity, but to help me make constructive decisions throughout the day. I'd look at the board to see what my next task was - but also to see if I thought it was still the right thing given current symptoms.

Besides, who doesn't feel better to finish the day with a happily coloured schedule that shows them everything they've achieved?

Tuesday, 8 August 2017

Are you an autism/disability ally?

I first encountered the terms "Autism Ally" and "Disability Ally" relatively recently. Where people who are not autistic/disabled use the term 'ally' to show that they are supportive of autistic/disabled people.

For some reason I didn't like the term. It felt unsettling. Like there was something slightly...wrong? - but I couldn't put my finger on it. So I kept quiet, figuring that at some point it would make sense.

Then in response to my "Is everyone a little bit autistic" blog post, an autistic person tweeted this:
My reaction was "Yay! I did something right!"

Which made me think - why did I react so negatively to the same term before?

Then I realised.

When someone with a condition that you don't have calls you an ally - it's like them saying "Thank you, you have done something helpful, I feel respected, listened to, and supported by you."

But if I were to say "I am an autism ally" - there is no verification.  No real world confirmation that my words and actions are genuinely supportive. Clearly I want to be an ally. But hand-on-heart well intended actions and words don't always equate to actually being an ally.

I know this, because I'm a wheelchair user and I often meet people wanting to show that they support me, accept me etc - who might consider themselves my allies. But very often, in reality, they aren't. They make a fuss when no fuss is needed, they barge past me to open doors I am perfectly capable of opening, they heap fawning praise on me for doing things that are totally normal (drinking a cup of tea, buying a T-shirt etc.), they tell me that they totally understand how terrible my life must be, or they get offended when I politely turn down an offer of assistance*. People react to me based on false assumptions and don't take the time to check whether those pre-conceived ideas are accurate or applicable. All of these interactions make my life harder - meaning I use precious energy fending off their advances instead of being given the freedom to get on with my life. If one of these people said to me they were a "disability ally" and would speak up for me, I would, quite frankly, feel moderately terrified about what misinformation they might be spreading - and how much more difficult they would make my life in the immediate future.

Their intention was to be an ally, but it came out wrong. They weren't my allies in reality. And they couldn't be my allies because they did not listen or take the time to find out what I needed before swanning in to my life, full of good intentions.

When someone claims to be speaking up or acting on my behalf, but actually aren't, and hand out misinformation instead, it's scary. Really scary.

The thought of doing this to someone else - stating that I speak on their behalf and then handing out misinformation, or stating that I support them and then doing really unhelpful things, is.....something I don't have words for, but something I really don't want to do EVER.

Now I know that I sometimes screw up with how to support/help other people with disabilities. We all do - and as I'm learning to be an ally, that's OK. Learners make mistakes, we learn from them, we do our best not to repeat that same mistake.

So I won't be saying "I am an autism ally" -because it may not be true - however much I want it to be true. Yes, I wrote a blog post that one person considered worthy of 'ally-ness' - but was my next action genuinely supportive too? The only people who can confirm or deny my ally-ship that are the people who's ally I am trying to be. Not me.

But what I can say is that I'm learning to be an ally. Sometimes I may mess up. Get things wrong. But then I will listen and do my best to learn and not repeat the same mistake again.

And I intend to keep learning for the rest of my life, because I think I can be far more supportive to others by constantly learning how to be a better ally, than I will be if I consider myself to have achieved 'ally-ship' already, and stop learning.

 (*Casually offering support if I look like I'm struggling is great - but refusing to listen to a 'no thank you' or trying to insist I accept help that I don't need is not helpful, nor is it respectful).

Note: I know not everyone will share this view, and that is fine - everyone is free to use the terms they feel appropriate. This blog is simply written from my perspective here and now - and it has allowed me to process and understand why I was so uncomfortable with the 'ally' concept.

Friday, 28 July 2017

The Status Squares are here!

Status Squares:

An innovative new tool to make invisible symptoms, visible.

We recently launched StatusSquares.


These wearable token units mean that needs and symptoms can be easily and effectively communicated, and as an individual’s status changes, they can be updated by flipping the token over, or swapping it for another token.

These simple units can help in so many different situations (at school, home, social event, medical appointment or work) and are relevant to many disabilities/conditions (fatigue, anxiety, autism, selective mutism, pain, depression - and a whole host of other conditions). 

Having a straight forward and effective way to show how you are, or what your needs are takes away the pressure of constantly having to explain or answer questions. A tool that allows you to show when you need time alone, or time to recharge and when you want company. 

In a school context, it allows teachers and parents to instantly see how the child is feeling/coping when they first arrive and put the appropriate support in place without the need to ask questions - especially as, when struggling, the effort of having to answer the questions can be enough to trigger a meltdown or worsening symptoms. 

They also allow children (and adults) with conditions involving pain or fatigue to communicate how they are without feeling they will be told off for 'complaining'.

And as your status changes throughout the day, the Status Square can be updated by flipping the token over, or swapping it for another token.
 
There are 2 main fastenings - a metal clip, or a sturdy badge reel with 40cm retractable cord and a belt clip, but they can also be used with lanyards, keyrings etc.

Made of medical grade plastic, with laminated vinyl latex stickers, the 'clip' versions are totally latex free.

We currently have 5 different double sided tokens, and the 2 different unit attachment options.

The Status Squares can be ordered here.

If you are interested in becoming a stockist, or placing a bulk order, please email us on admin@stickmancommunications.co.uk to discuss options.

Here's a clip of the squares in action:

Tuesday, 18 July 2017

Is everyone a 'little bit autistic'?

I have many friends who are autistic.

And I often hear people who are not autistic trying to show acceptance, and relate to an autistic person by saying things like "Yes, I'm a bit autistic too, because I don't like change/don't like loud noises/stim/[insert appropriate phrase here] too" or use the phrase "everyone is a bit autistic" to try and be inclusive.

Now here's the thing.
Loud noises make my spine cringe. If words are too loud I really struggle to understand what they mean. It's like I'm having to use so much energy up to cope with the loudness I can't focus on the meaning.
I have poor proprioception (I don't know where my body is in space when I'm relaxed). Pressure helps me know. So does movement. So when tired and trying to concentrate I may rock, or sit on my hands or on my feet, or wrap things tightly round my hands or fidget, or stretch repeatedly, or one of lots of other things that gives my brain enough input to stop having to work out where my limbs are so it can focus its fatigue-limited resources on more interesting things. Essentially: I stim.

Surely that makes me a bit autistic?

Actually, for me, they're part of my hypermobility syndrome.

I find it totally understandable that some autistic people stim, and it's something I can relate to, but I'm not autistic.
I wear ear plugs when I go to concerts, but I'm not autistic.

I am not on the autistic spectrum.

Because (as I understand it) the autistic spectrum isn't a spectrum from 'a little bit autistic' to 'very autistic'.

Everyone on the autistic spectrum is autistic. They have a different way of processing things to me (who is not autistic). The 'spectrum' part relates to individual variations within the autistic neurology (although there's probably a better way to word it than that). They each display different traits from multiple parts of the spectrum as part of their autism. For example an autistic person might avoid eye contact, or might make so much eye contact that the non-autistic feels uncomfortable. They might seek a certain sensory input or they might actively try to avoid it - thus making a broad spectrum of traits within the diagnosis of autism. Some traits might be mild or severe  (like obsessive tendencies, or level of verbal communication) but that doesn't make someone more autistic or less autistic. The autistic way of processing is there. It is a part of who they are.

Does my insight into living with poor proprioception mean I know what it's like to be autistic?
No.

Because we don't experience life according to separate symptoms - we experience it as a whole being. For example, I experience poor proprioception alongside my ability to pick up non-verbal signals and hints easily. That means I don't know exactly what it is like to have poor proprioception and a limited ability to process non-verbal signals and hints.

Of course I use the insight from my poor proprioception to help me understand similar traits in autism, but I also need to step back and recognise that I'm not autistic so there will be differences.

"Everyone is a bit autistic" doesn't recognise the differences. It doesn't leave space for differences.

And if there's one thing my disabilities have taught me, it's that I can only flourish when I (and those around me) accept my differences - because then I can learn to live well with my differences. And you can't accept what you don't recognise exists.

So when I want to show that I relate to part of an autistic person's experiences I try to approach it from "That makes sense - I have [insert relevant trait] which has some similarities so what you say sounds familiar - but obviously it's not the same so there's a lot I don't understand."

Recognise the similarities and common ground, but also leave open, respectful, welcoming space for difference.

Because we aren't all a little bit autistic, but we are all human.

Thursday, 29 June 2017

Discovering the OneLeg stool

While representing the Hypermobility Syndromes Association at the Foothealth conference 2017, I was intrigued to discover the Oneleg stool.
It looks a bit like a mushroom, is designed to let you move easily when sat low down, and logic says it can't be very comfortable. However, as someone who does a lot better if I fidget when sat down I thought I'd give it a try.

Amazingly, this seat built to wobble feels really quite stable. It tilts - but in a controlled way. It's kinda hard to describe. It is much more comfortable to sit on than my wobble cushion - and gives a great core workout. It's also fine to sit still on. But instinct says "Fidget!! It's funner!" (it wasn't only me thinking this - the professionals who tried it seemed equally impressed. And equally keen to make the most of its capacity for movement while sitting still.). The one thing I couldn't do was slouch. I tried various slouches and every time I tried, my muscles kicked in and turned the slouch into a controlled movement - so it's a great deterrent against unwittingly flopping to end of range while sitting working (which is important for us who are hypermobile).

Seeing as the HMSA stand was next door to the OneLeg, I borrowed one and spent most of the morning sat on it. And when I did my lecture in the afternoon I sat on one instead of sitting in my wheelchair. It really helped with POTS management too - as I could keep my lower body moving enough to help improve circulation, without having to stand (which takes too much energy to be able to talk at the same time).

However, it should be noted that if you wiggle lots, then you really work your core muscles - and my hips and ankles too! So I'd strongly recommend building up how long you permit yourself to sit on it. It turned out that 4 hours on day one was a bit much - but I reckon if I bought one I would soon build my tolerance (and strength!).

My preferred height was the 48 inch. I'm quite long legged. I'd recommend trying various heights before buying if possible.

I now have this firmly at the top of my 'things to get' list - it will make a great office chair, and a way to strengthen my core. And when I have one, I'll be bringing it to events whenever I can - because being able to exercise while sitting really does help with managing my hypermobility syndrome and POTS.

(And no, I haven't been paid to write this. I just thought some of my readers might find it useful. I suspect it would also help with conditions like ADHD ;) )

Thursday, 1 June 2017

Communicating positively about hidden disabilities?!?

I often hear how important it is to be positive.

The thing is, that there are times we need the people we're with to be aware of symptoms - like fatigue, pain, dizziness, brain fog or any of the other multitude of things that can affect us in various ways from day to day.

It's not like we can start saying "Oh hurrah, I can't do that because my brain has turned to mush".

And yet....

I've seen peoples eyes glaze over when I talk about my current symptoms. I have even found myself unconsciously switching off when people have given me too much negative information. Which, given that I know what living with these symptoms...well, it was a bit unexpected!

It's as if the human brain has an automatic 'off switch' when too much stuff perceived as "negative" info is given resulting in none of then information I tried to share actually being taken on board - and a LOT of attempts to 'jolly me along'. "You can do this" "You need to be more positive" and the like. Which, of course, don't help - because they haven't actually taken into account the symptoms or limitations I've tried to tell them about!

So it looks like a 'catch 22'. Communicating about the symptoms is 'negative' and doesn't help. Not communicating about the symptoms means people get frustrated, have unrealistic expectations and can't understand why I can't do things.

Over time I've found a few ways to communicate in a more positive way - while still being very grounded and real.

For example:
"I am really fatigued. Struggling to concentrate. And I really can't sit still for long because of pain."
This is true. But it is all 'negative' information, and will probably fail in terms of creating understanding about my reality. I can't tell you the psychology of why, it's just something I've observed many, many times.

Here are some alternatives I've developed over time:

Option 1: Acknowledge the cause (it helps people build up an understanding of cause and effect - so over time they realise that busy today = symptomatic and quiet tomorrow, and puts the symptom into a wider context of 'doing' something - which also helps reduce the 'jollying you along' reaction.)
"I had a lovely day yesterday - got to hang out with some of my nieces in the morning. Now the fatigue and pain have hit, and I really can't concentrate for long. But it was worth it."

Option 2: Include coping strategies (it helps stop people panicking that you are just sitting there worrying about pain/symptoms all your life)
"I am really fatigued. Struggling to concentrate. And I really can't sit still for long because of pain - so I'm doing little tasks only, and lots of stretches, and using my heat pack - which helps."

Option 3: Recognise achievements based on what was challenging for you. (again, this helps people start to understand your normal.)
"I'm horribly fatigued and can't concentrate for long today, but I've managed to have a shower - so I'm really pleased about that."

Option 4: Include a 'can' alongside a 'can't'. (this helps avoid the 'encouraging' attempts that try and insist we do something we know we can't - or can't without unacceptable consequences - and has the added bonus that it's good practice for finding solutions and things we can do.)
"I can't sit for long - I'm in too much pain. But I can manage 5 minutes at a time, so I've been doing short tasks - and then changing position - I've achieved far more than I thought I would!" (I still can't believe how effective this position changing and regular moving has been for my pelvis/lower back pain).

And try to finish the update on a positive - which I've just realised I did in all these examples!

These don't create telepathy, or resolve every situation, but they have helped me become better understood by the people around me.

I hope that they can help you too.

Saturday, 27 May 2017

Disability: Appropriate offers of help

Friends and family often struggle to know when to offer help. Especially when it comes to variable and hidden aspects of disability - such as fatigue, pain, brain fog, or depression.

To me, as a person living with some of these symptoms, it feels obvious.

If I'm doing okay and managing a task (even if I'm doing it differently) then it's pretty obvious I don't need help. Being repeatedly offered help (or worse, given help without being asked) when I'm so clearly okay is SO frustrating! It takes away my enjoyment in being able to do it, it takes away my independence, and it makes me feel worthless. Plus I waste precious energy fighting off the offers of help instead of using it to do what I'm actually trying to do!

If I'm struggling, trying to push through nearly unbearable pain, unable to think straight, close to tears - then quite clearly an offer of help would be appropriate. And when people don't offer, it is like the seriously don't care that I'm struggling. Totally selfish. Like my needs are just not important at all.

But here's the thing I forget:

They are 'hidden' symptoms.

The foggly eyes and lightening strikes of pain so obvious in stickman are not visible in human. They are obvious to me. They might be so obvious it's hard to see anything else. But they are hidden from someone looking at me.

So if we translated those two scenarios into what it looks like to others instead of what it feels like for me, we get 2 scenarios that look nearly identical - a person preparing food. But in one the other person gets their head bitten off for offering help, and in the other they get their head bitten off for NOT offering help! This can result in the other person feeling like they always get it wrong, that their help isn't wanted, that they are worthless, that nothing they do is good enough - etc.  Is it any wonder that they can get frustrated and demoralized and stop offering help?

Realising this has helped me a lot. 

You see, remembering that it's not automatically visible makes me realise I need to communicate how I'm doing in order to get offers of help that are more appropriate - and acceptable.

Communication involves both people being on the same page - so having a conversation about the symptoms (and need for help) being variable and not obvious might be a good start. Or writing a 'dear loved one' letter or similar (see my earlier blog on types of communication)

And then find ways of communicating 'in the moment' where help is needed (or not) that work for both of you. Codewords can be very useful ("out of spoons" "Level 9 zombie" etc.). 

Personally I like things that 'Make the invisible, visible' - like flashcards or wristbands.



The important thing is that together you come up with a way for the 'foggly eyes' of stickmen to be accurately conveyed in Human - working together towards a future where offers of help are appropriate and constructive instead of a cause of friction and distress.

Thursday, 25 May 2017

What I learned from Deaf Awareness Week

I have a few friends on social media who are Deaf. Most of my understanding of being Deaf comes from them.

During Deaf awareness week, one of them posted a photo of this poster which he'd put in his office, next to a message saying come and talk to him.


(This poster isn't mine - I'm not sure where it originated from. I found it really helpful)

For 2 days he didn't get a single response. No-one came up and said hi.

No-one.

In an office, with lots of colleagues.

As a chatty, hearing person, I would have chatted to lots of people. For him not a single person came and said hi - despite it being deaf awareness week and there being a special invite!

No-one.

If that wasn't bad enough, other Deaf comment-ers were all totally un-surprised. Frustrated, but with a lot of 'well, that sounds normal'.

I knew that being Deaf in a world that relies a lot on sound must be isolating.

What I hadn't realised is that the isolation isn't so much caused by auditory issues, but by us hearing folk feeling too awkward or unsure to say hi, or too 'busy' to make the minor adjustments that would make chatting with them possible (see the poster above).

So I hearby promise, that should a chatting situation arise, and I discover that the other person is Deaf, I won't clam up and leave, but instead see if there are little adaptations I can make which will allow us to chat.

Don't worry, I'm not going to accost every deaf person I see and insist on patronising conversation when you are trying to do your shopping! But I will make the effort to remember the tips on the poster, and learn the skills to be able to chat, should it be a chatting situation.






Monday, 22 May 2017

A tip for wheeling in the rain.

It's a while since I've wheeled in pouring rain.

I quickly remembered that I do not like spending ages sat with wet knees. 

So, as I sprinted from parked car to station, rather smugly, I adapted my pushing posture. It worked! Dry knees......


..but within 2 minutes reality had seeped through.

I was sat in a puddle.

Take it from me: Wet knees is a lot nicer than.....the alternative!!

I'm now seriously considering investing in a wheelchair poncho of some sort.


Tuesday, 16 May 2017

The catch 22 of hidden disabilities/symptoms: Communication methods

It goes like this:

If I talk about my symptoms I am told I am being negative. That I need to stop focusing on my condition.

If I don't talk about my symptoms then people don't know how I am and therefore have unrealistic expectations - leading to frustration and misunderstandings at every turn.

It's a lose-lose situation.

However, there are various things that I've found have helped me get out of this loop.

One is to switch up the methods used. We are all familiar with the basic communication strategies, and for this blog I've categorised them as follows:

Written (formal)
Written (informal)
Analogies
Code words
Illustrations
Visual cues
Actions
Decision making

Written (formal)
Medical letters, journal articles, official websites.
These are good for communicating with health care professionals (HCPs) who are interested in knowing more detail. (Note: it's best get a conversation going and build a rapport with the HCP before asking whether they'd be interested in a journal article you think is relevant - if you walk in and hand it over it basically communicates "You don't know what you're doing and I think you're stupid" - even if that's not what you mean!)
Be cautious about using these resources with friends and family. They can give information overload, on websites information is general - so readers have no idea whether you are affected severely, mildly or somewhere in between and may end up even more confused. They are more effective with people who already have a good grounding but want to know more.
Emergency care plan
Having emergency info handy is very useful. Even if you are capable of speaking, trying to cover everything accurately in an emergency situation is very difficult, having it written down clearly makes it easier for everyone.
Medical alert cards:
These can be great, but make sure the print on them is big enough to be read easily, and that they only give useful information. for example, they don't need to say "affecting 1 in 2000 people" because it's not useful info. And unless they are only for medics, avoid ones in med-speak because many people will have trouble relating to them. Doctors can understand normal English too.
Our keyring cards are actually more informal in the way they are written, but have had excellent feedback from use in both medical and social situations.

Written informal
Personal letters explaining how you are affected. 
Adapting a 'dear loved one' template letter from a relevant charity (such as this one on the HMSA website http://hypermobility.org/a-letter-to-a-loved-one/) can be very helpful in creating a background level of understanding.
This means you can explain how you personally are affected in a way that gives the reader time to process the information at their own speed.

Flashcards can also be a great way of communicating a key point about how you are or what you need - a way to make an 'invisible' aspect of your condition 'visible'. Our experience is that they work best if they are light-hearted, not too stroppy, and get straight to the point. At Stickman Communications we love flashcards (or keyring cards as we call them) - we have over 150 designs so far covering everything from autism to diabetes, from tourettes to fatigue and pain, from go away, to please help me. But you can also create your own.

Analogies
One reason hidden symptoms like fatigue are so hard to communicate about is that unless you've experienced it, it's an alien concept. So explaining it in terms of something familiar can be very useful.
I use this 'shopping on a budget' analogy quite often.
Another popular one is the spoon theory (where a spoon is a unit of energy, you only have a few spoons, and each action you do uses up spoons)


Code Words
These are fabulous ways of communicating without sounding negative. "I'm out of spoons" or "Whose stolen my spoons!" are great ways of saying fatigue levels are high - if everyone listening knows the spoon theory! Code words are therefore best used within groups that know you a bit, or where people are familiar with the code word. In the online community of people with hidden disabilities and fatigue, the 'spoon theory' is so well known that most people will understand spoon references. but use it with family or colleagues and you are likely to need to give a full explanation.)

When I worked in an office, we had the 'Vodka Standard'. When my symptoms escalate, I get symptoms similar to being drunk (due to POTS). And if I get really bad, I need to lie down and cool down - but the symptoms mean I often don't realise how 'drunk' I am, so it was essential that people around me could notice and point it out. Instead of laboriously describing symptoms, things like "Hey, you aren't drunk today!" or "keep an eye on her, she's 2 vodkas already" were common place, amusing, and helpful.

However....

A new colleague started in our section. Halfway through the day "You're drunk, Hannah. 2 vodkas?"
Horrified, my new colleague sat thinking that I was literally drunk at 11:00am, at work, and everyone was treating it like it was normal! - The code was explained and all was well, but it shows how important it is to use code words with care!

Visual analogies/illustrations
These can be graphic or descriptive. I love them. Because they communicate accurately, but with a slight chuckle which, as Terry Pratchett wrote, "helps things slide into the thinking".

 So when fatigue is so bad I can scarcely lift a finger, and I feel tetchy, grumpy and grey, it's a rhinoceros.

Or when brain fog has stolen my short term memory, word recall and general ability to function at the required level, the zombie references creep in.


The possibilities are endless and you can invent any that work for you.

Similarly Internet memes can be useful.  For example for those days when I feel a bit better than a recent hideous patch, but am still very symptomatic I might use phrases like 'fragile-ly fabulous' from this image:

But remember: 50 memes in one day trying to explain your entire condition will be overload and ineffective. One or two showing the key points relevant to that day is much more effective.

Visual cues
These are another one I love.  Flash cards can come into this category, but so do 'traffic lights' type concepts.

Like our 'traffic lights' wristbands, or wearing coloured badges with red meaning 'bad day' green meaning 'good day' etc. Things which communicate instantly with those who need to know, without any conversation having taken place. these can make life so much easier and remove the need for a lot of talking about symptoms while still letting people know how you are so they can adjust expectations accordingly. Even things like having a 'bad day' T-shirt that family knows if you are wearing it, it means you are having a bad day can really help.

Actions
It's important to remember that actions speak louder than words - so if you hide the symptoms that your actions cause, the people around you will never understand. How can we expect them to understand what we don't allow them to see? This is covered in a previous blog: 'when actions speak louder than words'

Decision making
In my experience, one of the hardest things is when I say 'I can't do that' for good reason, and the response from friends or family is to try and persuade me that I should do it. Sometimes I might be underestimating myself, but often it's a communication problem: they are unaware of the thought process behind the statement. Perhaps I know I'm really busy the day before and so will need recovery time. Perhaps there is something really important the day after which I need to pace to be able to manage. So by involving that person in the decision making process they can gain a lot of insight. And can also start to understand the barriers and even start helping think up things that will make things easier to do.

I might start off by saying "I'd love to join in, can you help me see if it's doable?" and then I effectively follow this process:

So in summary: 

There are lots of ways to communicate. If one isn't working, try another technique.

Creating understanding is like building a house, it's best done one brick at a time, with careful planning - each brick in place is a little bit of progress. Dumping a whole heap of bricks in one go just makes a mess. 

Tuesday, 9 May 2017

"The things we do for disabled people"

This blog is me trying to process a conversation I had earlier.

Today a chap from a UK company called me, trying to solve a communication issue that they weren't familiar with for a young girl living half way round the world.

It wasn't an issue that our products are designed for, but I could point him in the right direction. It was nice to be able to help.

I was thinking to myself how nice it was to randomly help someone to help a random stranger who was struggling with an issue 1000's of miles away.

And just before we ended the call he commented:

"The things we do for disabled people!"

I could practically hear the eye-roll. And the 'aren't we nice for doing this for them'.

Now I totally get that this was a really random chain of people trying to find help for a total stranger when the solutions weren't in our spheres of expertise.

"The things we do for total strangers!" - Oh yep, definitely. It is very random the things we sometimes do for strangers. Or even "The times we go way beyond our job description!" Definitely.

But it wasn't. It was "The things we do for disabled people!"

I didn't respond because I was blindsided. And that was the end of the conversation.

I am a disabled person. Am I such a burden that anyone trying to help me solve the multiple accessibility issues I face can be expected to eye-roll?

Helping a disabled person get access to basic communication is not eye-roll worthy, it's an obviously necessary and important thing. Sure, it can take effort. And it might not be my job. But trust me: the effort of the 'helper' rarely exceeds the effort and frustration of the disabled person trying to cope with the lack of access they have. I spent 2 minutes on the phone helping that child. Perhaps that chap on the phone had spent a couple of hours researching. But the girl who had no effective communication - she's having to try and resolve this 24/7, trying to find a way to make herself understood.

By all means remark on the extraordinary links the internet has enabled. And the random enquiries that businesses can get that mean we end up going way outside our roles to investigate.

By all means say 'I'm sorry, I can't help with that' when you get an enquiry you can't help with.

But don't make the mistake of thinking that helping create access for a disabled person is a tedious task you are heroic for doing. Because that, quite frankly, is insulting.

Sunday, 23 April 2017

Pacing: Swap, don't stop.

My motto for today is 'swap, don't stop'.

It's from our 'Pacing, handy hints' poster, and it's been just what I needed today.

Both my pain and fatigue levels are pretty high. What I feel like doing is curling up on the sofa and not doing anything.

And it's totally right that I do need more rest today, but actually, today, for me, good pacing isn't about stopping everything. It's about swapping.

So I got up, and then rested and watched some TV. But I keep swapping between watching TV and doing little tasks. Or more correctly: sections of tasks.

Here are some of my accomplishments so far:

  • tidying my bed
  • stretching
  • sorting the washing
  • putting a wash on
  • tidying my bedroom floor
  • stretching
  • sitting on a stool to empty the dishwasher and put everything onto the side
  • hanging up the washing
  • writing this blog


I think my next 'swap' break will be putting the clean dishes away into cupboards. You see, I find pacing for when I'm this fragile much easier if I split the task into it's small sections before I start. So when I emptied the dishwasher - I had already decided that I would phase one (empty dishwasher) separately from phase 2 (put clean dishes away.) This way I'm much less likely to get caught up in the task and overdo it.

And in between each task I have down time. I'm currently watching Ellie Downie's gymnastic amazingness at the European championships on BBC iplayer.

But I'm also being careful to make sure that my down time isn't flopping into positions which aggravate my conditions - but is well supported. (i.e. lots of cushions!)

So while some days my 'swap don't stop' is about switching between tasks, today's 'swap don't stop' is about switching between rest and gentle movement rather than spending the whole day flopped.

And so far it's been a success. Pain and fatigue aren't escalating, but at the same time I feel a great sense of achievement because despite the symptom level, I am achieving lots of little things that become bigger things. I just have to keep remembering to stick to very short tasks/sections rather than trying to complete larger tasks in one go and then crashing out - and having to stop entirely.

I've already achieved far more than I thought I'd manage all day with this symptom level. But the best bit is that I've done so without worsening my symptoms.

Thursday, 20 April 2017

Pain self management: First choice or last resort?

As regular readers will realise, I love self-management and it's really helped me live well with my conditions. Along the way I've met many others on a similar journey, and one of those is Pete Moore of the 'pain toolkit'. I'd highly recommend popping across to see his toolkit resources. Here's a few comments from Pete about his experience and the work he does.

  

Who is Pete Moore?

You can read all about me and what I do here (hyperlink https://www.paintoolkit.org/pete)

The Pain Toolkit
I started to develop the Pain Toolkit (hyperlink www.paintoolkit.org) in 2002 and over the years it’s become a go-to website for information about pain management. Please come and visit and say hello. On the site there is lots of up-to-date news, as well as pain self-management information for healthcare professionals and people with pain.

Is pain self-management your first choice, or last resort?

With the ever-increasing problem of persistent pain in here in the UK and around the world, educational pain self-management has to be the first choice for both people with pain and also healthcare professional.

According to the Chronic Pain Policy Coalition ( http://www.policyconnect.org.uk/cppc/about-chronic-pain) there are now 28 million people here in the UK living with persistent pain. This figure seems to keep doubling every four years.

What is the answer to solve this problem?

It’s quite simple really. Educational pain self-management needs to be taught to all healthcare professionals while they are in their medical schools when in training and not learnt on-the-job as it is now.
Chronic Pain Policy Coalition

One other problem for healthcare professionals is lack of time to promote educational pain self-management within a timed based appointment. I have addressed this and why I now provide 1/2day Pain Toolkit workshops ( https://www.paintoolkit.org/workshops) for healthcare professionals to give them some extra skills to promote educational pain self-management within timed based appointments.

The Pain Toolkit

I started to develop the Pain Toolkit (www.paintoolkit.org) in 2002 and over the years it’s become a go-to website for information about pain management. Please come and visit and say hello. On the site there is lots of up-to-date news, as well as pain self-management information for healthcare professionals and people with pain.


Wednesday, 19 April 2017

New product: consultation. 'Token' communication units.

For much of the past year we've been working with Bowman Additive Production to create a wearable alternative to our popular wristbands, but which have greater flexibility of fit and use.

The unique unit now taking shape is sturdy, lightweight, washable, durable, latex free and made of non-toxic, medical grade plastic, with a slightly textured, tactile finish.

This is the latest prototype - it's nearly ready to pilot!


(copyright (c) Hannah Ensor 2017)

The unit itself is just under 4cm square and less than 1 cm deep, and allows tokens to be easily slotted in and out.

The unit can be clipped onto a lanyard, keyring, or used on the badge-reel shown.

There will be various tokens available - each one double sided allowing tokens to be changed quickly and easily. Longer term we plan tokens for can speak/can't speak, need help/can do this myself, recharging/recharged - and more.

But we have to start somewhere: the first token set will be 'traffic lights' - the equivalent to the wristbands, with red, amber, and green - and a 'condition management in progress'.

These are the current drafts of the 'traffic lights' tokens.


Prices aren't finalised yet, but the unit is likely to cost around £10, and the tokens £2.50 each (although we are working to reduce these costs, and buying them as a 'pack' will be cheaper.)

We'd love your feedback or thoughts on this 'traffic lights' sets - and on the unit.

Feel free to send feedback as a comment one here, or via twitter (to @stickmancrips) on facebook (to Stickman Communications by Hannah Ensor) or via email (admin @ stickmancommunications.co.uk - without the spaces) But be quick! Production isn't far away......


Saturday, 15 April 2017

Hidden disabilities/symptoms - when actions speak louder than words.

The trouble with 'hidden' or 'invisible' disabilities and symptoms is that they can't be seen.

But this also applies to 'visible' disabilities where there are symptoms that aren't visible. Effects that are hidden to the casual observer.

Like pain or fatigue.

They can't be seen.

"Ah," my thoughts say "but it is visible on my face - you can see from my expression that I'm in pain."

Really? How does an observer know whether it's physical pain, mental distress, stress, feeling down, angry or even just concentrating?

These things can be so obvious to the person experiencing them that it's hard to remember that they aren't so obvious to others.

But there's something that makes it even worse.

And that is 'Actions speak louder than words' - trite but true.

Who else has done this:

You are asked/invited to do something. You say no. They pressure you. You cave in and do it. Then once you are alone in the safety of your own home you crumple - the symptoms you've been struggling to hide and ignore all day overwhelm you as your defences come down and the energy required to 'pretend' runs out. It then takes days to get back to your normal level of symptoms.

When this happens to me, not only am I left struggling to recover and unable to go about my daily life because I pushed too far, but the other person then seems to get even more pushy, ignores my symptoms, insists I can do more if I push myself, and even hints that if I changed my attitude I wouldn't be disabled.






The trouble is that actions speak louder than words. The 'foggly eyes' of a stickman aren't visible in humans. What I communicated was that I could do what I said I couldn't. They didn't get to see the effects. They saw me coping when I said I couldn't. They didn't see me crumple - they saw me upright and functioning. I might have tried to explain my symptoms - but I also hid them. So because actions speak louder than words, without meaning to, I 'told' them I had done it, and was OK.

I can't expect people to understand my normal if I don't let them see them my normal.

I don't mean I think I should go round trying to make every symptom constantly visible - that would just be weird and kinda depressing.

But I do mean I pace and take breaks when I'm with friends - go and sit in a quiet corner, I lie down randomly. I tell visitors it's time to leave when my symptoms are escalating. And it's very rare that I say 'I'm fine' to someone if I want them to understand my normal. I can't blame them for not understanding things that I've hidden from them.

Yes, this can be tough to start with - as the people around us have to go through a learning process. There might be awkward questions. There will be 'being different in public'. But my experience is that this 'allowing people to see my normal' has over time enabled me to do SO much more with fewer symptoms - because the people around me make allowances for my normal and don't pressure me into doing things that won't help me.

This is why I started to draw stickmen.

To show my normal in a way that wasn't negative or complaining, so that others could learn my normal, and my quirks that help me to live well with my conditions.

And now it's why I run Stickman Communications.

Because stickmen can make the invisible symptoms visible. They help me explain my normal in ways that are understood and are not seen as being 'negative'- and as a result also help me to stand my ground when something will be too much, and when I choose to do something that I know will push my limits, I'm not afraid to let people see bits of exhaustion, or pain coping techniques.

True, they don't magically solve all issues, but for me they've been a great help.

  
     


     





Thursday, 6 April 2017

An afternoon stroll

Yesterday afternoon I realised I needed to charge my powerchair for a trip on Saturday.

I reached the garage, standing in the warm sun, with the fresh coolness of a spring breeze on my face, and then decided it would be a much better idea to take it for a stroll and test out the local footpaths.





Bliss.

My X8 is now charging, and my OS map of this local area has it's first 'confirmed stile free & offroader accessible' footpaths drawn on :)




Tuesday, 4 April 2017

The importance of sitting properly...

Yesterday evening I was making the most of the mild April weather: Sitting with my legs curled up, on a beanbag, out on my patio, leaning back against the house, wrapped in a blanket, reading and enjoying the cool, fresh air of spring while listening to birdsong.

Bliss.


Until I moved. My sacro illiac joints (SIJ's) (a bit below the dimples at the top of each buttock) had quietly and gently gone on strike. Giving the feeling of being bitten mid buttock at the slightest change in pressure on my tailbone.

Experience says: straighten out, and take the pressure off. But I couldn't stand up from that position, and every move was stabbing! The best option would be to have someone pick me up bodily off the floor - so I could straighten without any pressure on the offensive, butt-biting joints. But I live alone.

I sprawled and attempted to inch my limbs into the right positions, the beanbag complicating matters further.

Inch, wince.

I was struck by the inelegance of my position.

Wry smile, inch, wince.

This could take a while. My legs are getting cold.

What if I have to call a sibling to pick me up? How would that conversation go?
"Hi....you got 10 minutes to spare?....I sat on the floor and my butt fell off, and now I'm stuck!"
"Any chance you can pop round?....I'm sat on the patio with a mis-aligned butt and can't get up!"

The mere thought gave me the giggles. Not helped by imagining the laughter such a call would generate.

Laugh, wince, inch, wince, laugh, wince....breathe!

Did you know that when you laugh your pelvic floor tenses and pulls on your SI joints? I was now being stabbed by each attempt to move, and bitten by each laugh.

Laugh-inch, wince

Hallelujah!

I made it! Legs out in front of me - practically lying down, gently lifting the pelvis - and sure enough my SIJ's returned to normal-ish.

Gonna make sure I sit properly for a bit as the butt's a bit grumpy today, but hey, at least I didn't have to call for back-up!



Thursday, 16 March 2017

Hypermobility spectrum disorder: what it means to me.



[This interview was published yesterday by the HMSA. Copied here in full]

Our volunteer team took the opportunity to ask HMSA HSD Ambassador and Patron Hannah Ensor a few questions about how the changes to the classification of hypermobility syndromes might affect her.

What is your diagnosis?

My official diagnosis is "Joint hypermobility syndrome". (JHS)

Over the years it has flickered between JHS, HMS and EDS hypermobility type, depending on who was writing the letter, and what I'd told them.

So although EDS is listed on some letters, I've only ever been formally diagnosed with JHS.

What do you think you would be classified as under the new system? (see here for an overview of hEDS, and a basic update for clinicians)

From what I've seen, although my Beighton score is low (1/9) the system allows for 'generalised joint hypermobility' regardless of score, which is definitely true of me.

But I only have mild skin issues so I don't score enough points in that section to qualify as hEDS.

So I think I'd be generalised hypermobility syndrome (G-HSD.)

How does your hypermobility affect you?

I have generalised bendiness with instability in practically every joint - and yet my beighton score is low because my knees and elbows don't bend backwards. They bend sideways, and rotate in ways they really shouldn't.

I have POTS - quite severely.

I have reflux and mild issues with a slow gut and a bendy bladder.

And plenty of pain and fatigue (which I almost forgot to mention because it's become so normal for me.)

It affects me every day, every minute. Looking at my life objectively, there is very little I do in the same way as an 'average' young woman - I have had to adapt every aspect of my life, using a wheelchair, being conscious about posture, daily physio to enable me to function, pacing, lying down and moving about to manage POTS, avoiding heat - all sorts of things. It even affects what and when I eat and what I wear.

Does it annoy you that POTS and gastro-intestinal issues are not included in the diagnostic criteria?
It's a bit frustrating, but actually there's not yet enough information on how they are linked. Both POTS and gastro-intestinal issues can have lots of different causes so they can't be part of the diagnostic criteria until they are better understood. Thankfully the new information is very clear that doctors should be aware of, and look out for these linked conditions in someone who has an HSD or hEDS - and there's some really useful management guidance on them too. I really hope more research happens soon, but until then I think I'm in a better position for accessing help with POTS and GI issues because there is now clear, concise, up-to-date information I can refer my doctors to - regardless of whether I'm HSD or hEDS.

Do the changes scare you?

Of course. Change is scary, and as it took me 20 years to get my current diagnosis, the thought of possibly 'losing' the respect that saying 'I have EDS' can get from medical professionals is very unsettling.

What would you say to others who are in a similar position?

I've found it helps to focus on the fact that it said that HSD is not necessarily milder than hEDS - both can vary in severity. And the HMSA 'clinicians guide' (which I've heard a little about) is explicitly for both hEDS and HSD - making it clear that us HSDers can experience the same debilitating symptoms and even the same associated conditions - POTS, gastro, MCAD etc. (once it's published we'll put a link to it here.)

This has never been officially, scientifically acknowledged before, and this fills me with hope that more and more doctors will take HSD seriously. Far more seriously than 'hypermobility' ever was.

And don't forget that charities like the HMSA are on our side - helping to ensure that all of us are taken seriously. They not only support patients but educate medical professionals too. Being Patron, volunteer and HMSA HSD Ambassador, I've seen first hand how hard they are working to ensure that people with HSD are not seen as 'just a bit bendy'. I'm actually doing a talk as part of an HMSA Hypermobility Masterclass on living with HSD for medical professionals that the HMSA is helping to run in a few weeks time. I will be fighting the corner for everyone else with an HSD too.

What will you be doing next about your own diagnosis?

Carrying on as normal.

Treatment for both hEDS and HSD is symptom-based in the UK. I don't need to see someone to officially get 're-classified'. Re-classification is something that will happen along the way if I need to access services/support/advice through someone who thinks it would be helpful to re-assess me. And actually I can expect to be reclassified at various times during my life as my symptoms change - because it is a spectrum condition which can change over time.

And until I'm reassessed I will either use HSD or JHS - not assessed under the new system yet.

And on a reassessment note, I like that this new system recognises that it is a spectrum that people can move about on. Being G-HSD doesn't mean 'definitely not hEDS' - it means 'currently not showing specific symptoms of hEDS - symptoms may emerge later so keep an eye out'. If I become less symptomatic it might change to Asymptomatic-HSD - or if I get more skin related issues it might change to hEDS. If I get less flexible with age, but haven't developed symptoms that class me as hEDS I can slide along to H-HSD (historic HSD) - whatever my symptoms are, I can have a diagnosis that accurately reflects how I am affected and flags up the potentially linked conditions to look out for. It's so different from the previous system that it's a lot to get my head around and will take me some time to get used to! (We'll link to a summary of the HSD criteria as soon as we can.)

How would you summarise how you feel about the new classification and associated information?

Well...

...a bit of "oh help, it's changing" is going on in my head....actually, maybe quite a lot!

But underneath that, having read a lot of the new medical articles in the journals, the new criteria and all the linked information that has been published along side them means that although I don't think a positive effect will be instantly visible, but I think the future is looking up.

So I am taking a deep breath, ready to ride out any initial period of uncertainty, but full of hope for the future.



Thursday, 23 February 2017

Customer consultation: Keyring card dividers and folders

For some time I've noticed that many of my customers (including me!) have quite a few stickman cards. Sometimes having lots of cards can mean that finding the right card quickly is tricky.

Over the past 5 months I've been looking into various possible solutions and have come up with the following:

A set of 4 polypropylene dividers that is the same size as a card, with a tab - so they will be durable, waterproof, wipe clean, and wont fray or disintergrate at the corners.

The sample ones I made are clear, but the actual dividers will be opaque, and in 4 different colours so it's easier to see them (blue, green, yellow and red). The dividers can also be written on with marker pen.


 And I have also found some sticky 'tabs' which can convert the cards and dividers so they fit into any standard 2 ring ringbinder, and also pocket filofaxes! (If you later want to remove the sticky tabs, and don't want sticky patches on the back of the cards, nail polish remover works well.)

So I now have my set of 20 cards plus the prototype dividers in my old pocket filofax (150 x 130 x 30mm) and I love them!
Photo of my pink pocket filofax with some cards in it, and to the left are a set of 2 tabs and a 'cuppa needed' card.

Photo showing a tab being looped onto the first ring of the pocket filofax. - one is already looped onto the 5th ring. (Make sure the tab is sticky-side up!)

A photo of the 'cuppa needed' card being placed onto the sticky tabs, and stuck down.

A photo of the finished filofax of cards and dividers.

Another photo of the finished filofax of cards and dividers, with the section of cards being flipped over.
Creating the overall effect of having a totally customisable and durable book explaining my normal, which can be used to answer 'whats wrong with you?' questions in both social and medical contexts, and as a way of clearly explaining needs and symptoms.

(Cards not included. Neither is the the file so you would need to get one from elsewhere - there are some really lovely pocket filofaxes around.)

So, would you be interested in a pack of dividers for around £3.50?

And would you be interested in a 'conversion pack' of 50 sticky tabs (enough for 4 dividers and 20 cards) and the 4 dividers for around £8?

Please let us know by commenting on our FB post, on here, or on twitter.

- We won't stock them if no-one wants them, but if lots of people want them, then we will!

Wednesday, 22 February 2017

Coping with the guilt of hidden disability

I was recently asked how I fight the guilt that comes with disability and medical conditions. The guilt from not doing tasks you feel you 'should' have, for not being able to help out or socialise with friends and family in the same way that others can. For not being able to work as much etc.

I think perhaps over time I have learnt not to fight it.

It's more that I let it fade away. I can't control how I feel - but I can control what I do with the feeling.

I recognise that yes, I feel that way sometimes. But I also don't have to believe it, or act as if it were true. And over time, although guilt still floats through my brain sometimes, it does so less and less. And affects me less and less.

You see, if I can't do something without unacceptable side-effects, then I shouldn't be doing it.

And once I've made that decision, instead of looking at what I can't do, I look at what I can do. I can't help set the tables for a party - but I can fold the napkins. I can't run around with the nephews, but I can play monopoly.

I also measure my achievements by what I found hard but managed anyway. Putting something that is challenging for me, today, on my 'To Do' list each day. Not challenging for someone else, not challenging for me on a good day, but challenging for me. Today.

 Having a schedule also helps because then I feel I have more of a purpose to my day, and it makes pacing easier too. Then instead of feeling guilty about what I can't or haven't done, I can see what I have done and celebrate it.

A win-win situation!

No guilt needed.

Tuesday, 21 February 2017

HMSA's Hypermobility Spectrum Disorders Ambassador

I'm really looking forward to getting going with my new role at the HSMA: Hypermobility Spectrum Disorder Ambassador.

Below is the article from the HMSA on my appointment (reproduced from the HMSA website, with permission.)

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HMSA Youth Patron, Hannah Ensor, is to become the HMSA’s Hypermobility Spectrum Disorder* Ambassador.

Hannah has worked closely with the Hypermobility Syndromes Association for a number of years and assists with raising the profile and awareness of Hypermobility Spectrum Disorder; the new name for hypermobility syndromes which are not covered by EDS, OI, Marfan, Stickler and PXE.

Hannah takes part in the HMSA’s self-management programmes and participates in our work with professional members as the ‘patient voice’. She is also well known for promoting the rights and needs of people with disabilities and is spending a second year as one of Britain’s 100 most influential people with a disability.

Hannah regularly fundraises for the charity and has a hugely successful business which has enjoyed global recognition, called Stickman Communications. You can view Hannah’s work on her website, stickmancommunications.co.uk

“I’m honoured to have been offered this exciting opportunity and am looking forward to helping further raise the profile of hypermobility spectrum disorders* – particularly highlighting the fact that the whole spectrum of conditions can range from mild to severe depending on how each individual is affected.

 Over the past few years, as a Patron of the HMSA, I have seen an increased number of people taking hypermobility syndromes of all types more seriously -and I’m excited by the prospect of being able to help build further on this important work, among the general public as well as in the medical and patient communities.”

*Please see our HMSA statement of position on the 2017 International Criteria for Ehlers-Danlos syndromes which explains how our use of terminology has been, is and will be changing.