How well do YOU function?

If you were to meet me, you might utter the words ‘I’d never know you were autistic, you must be very high-functioning’. These exact words were said to me last week, but speaking about my kids, so replacing ‘you’ with ‘they’.

And today, I’ve been filling out forms, applying for Domiciliary Carer’s Allowance for my kids. If you were to base your opinion of them on what I’ve written, you might say ‘wow, they are so low-functioning, definitely disabled.’ (Though the Medical Assessor might disagree – they’re known for turning people down.) If I were applying for Disability Allowance for myself, I’d get a similar reaction. In fact, when I’ve made clear the extent of my issues, I’ve had people say ‘I don’t know how you function at all.’

So, which is it? Are we high-functioning or low-functioning? It really is a ridiculous question, isn’t it.

Why don’t we ever talk about Neurotypical people based on their functioning level? Is it because, we can understand that the high-flying business executive functioning well at work, is going through a divorce due to his low-functioning marriage? We understand that the unemployed person, who can’t function enough to get out of bed some mornings, has a close group of friends and functions well socially at weekends. We understand that people have good days and bad days. Strengths and weaknesses. And we would not ask ‘are you high-functioning or low-functioning?’ when we meet them. That would be rude!

So, why do people think it’s ok to ask that of autistic people?

Goes back to one of my life mottos: if you would not treat a neurotypical person that way, don’t treat a neurodivergent person that way either.
[image of a pile of forms, for Domiciliary Carer’s Allowance, waiting to be filled in, with a pen on top. ]

A to Z of EDS: Z is for Zebra

One of my pet peeves about the use of the Zebra to represent EDS is that people often think that the Zebra stands for only EDS. But,  technically, ‘Medical Zebras’ are any rare diseases that are commonly overlooked by doctors looking for ‘horses’. And, obviously, there are thousands of diseases that fall into this category. I feel that the Zebra has somehow been appropriated by EDSers, spurred on by major EDS charities, who fail to understand the historical background of the phrase and think all ‘zebras’ have EDS. 

However, as can be seen in this list of Awareness Ribbons, diseases associated with Zebra pattern awareness ribbons, and zebra motif in general, are:

Carcinoid & Neuroendocrine tumor awarenessEhlers-Danlos Syndrome awareness

Endocrine Cancer

Primary Immunodeficiency

Rare Disease awareness

Vaccine Awareness

You wil notice from that list, the zebra motif is used for Rare Disease Awareness. The Rare Disease Awareness Network uses the zebra symbol to raise awareness of 6000+ rare diseases. Because EDS is not the only rare disease out there! 

And so, along with raising awareness for EDS, I would urge us all to learn about and raise awareness of other rare diseases too. There are so many more zebras than just those with EDS. Hopefully by raising awareness of them, it will help people get diagnosed more quickly, as doctors learn to ‘think beyond the horse’! 
And so ends my A to Z of EDS. I could easily have picked a different topic for each letter and still have some left over. I plan on doing it all again next year, hopefully without repeating too many of this year’s subjects. I hope you enjoyed reading them, and maybe they were even helpful. 

Back to regular blogging tomorrow! And probably no mention of EDS for at least a few days!! 

[ image of a white background, with the words ‘Z is for Zebra’ in black. Below the writing is an graphic of a zebra-print awareness ribbon. ]

A to Z of EDS: Y is for Youthful Looking

I’ve written at length about a lot of the negatives associated with EDS. Today, I want to write about something generally seen as a positive: those with EDS tend to look younger than they are. Though that can be negative too, as I found last week when I was asked for ID when buying a bottle of wine. I’m 39! Or when I answer the door, to be asked if my parents are in. 

While ‘youthful looking’ is not on any diagnostic citeria, it did find this sentence in a study on Cutaneous Signs in Ehlers Danlos Syndrome: “Patients with a clinical history consistent with the hypermobile form were found to have a youthful appearance, a non-quantifiable finding.” Anecdotally, having a youthful appearance is mentioned again and again, in support groups and blogs. Rose Guedes,in her blog Girl Outside for example says: ” I find the HEDS types especially may look young and pleasant (credit the soft, smooth skin of an HMS/EDSer.) We may have subtle facial features that can be described as elfin/faerie-like.” I agree with her. While there is no ‘EDS look’, there are some facial  features ( more common with vascular EDS, but I do think subtle features can be found in all forms), such as small earlobes, prominent eyes, small chin, narrow nose and thin lips, as shown in this photo from Annabelle’s Challenge, that can lead to an elfin look. 

So, while EDS can have many challenges, at least we can be happy about some aspects of it!
[image of a pink background, with the words “Y is for Youthful Looking” in black.]

A to Z of EDS: X is for X-Ray 

Ok, this is a bit of a trick entry (because, in fairness, how many words start with the letter X?) X-rays are pretty meaningless for most of us. Unless you are being checked for vertebral degeneration or early onset osteoarthritis, which may be more common in those with EDS. But for most of us, X-rays don’t show anything. Even when we dislocate a joint, it may go back into place before we even get seen. I have had countless X-rays (and MRIs) and nothing unusual has ever shown up in them. Which was then used by doctors to claim there wasn’t anything wrong with my joints. 

So, X-rays can be useful for looking for joint damage, such as that caused by various forms of arthritis. But, for EDS, I wouldn’t dismiss joint issues just because nothing shows up in an X-Ray. 
[image of a grey background with the words “X is for X-Ray in black.]

A to Z of EDS: W is for Weight

Weight is often an emotive subject, with many EDSers worried that their weight is too high or two low. 

Like any other part of the population, there are EDSers who weigh more than the average. A proportion of these are naturally this weight. They may have weighed more than average since birth, and have similar weight family members. This is to be expected, given the genetic component of human weight. 

Some weigh more than their natural weight due to what’s known as weight cycling or yo-yo dieting. Again, this is in line with the general population. Weight cycling occurs as the body’s natural response to calorie deprivation followed by renewed access to food. This most commonly takes the form of weight re-gain after dieting. In fact, most dieters regain the weight they lost within two years of starting their diet, and a large proportion re-gain to a higher weight than they started. Again, EDSers are no different to the rest of the population in this regard. 

EDSers may end up weighing more than their natural weight due to other factors more in common to those with other chronic conditions. The first of these is where weight gain is a side effect of medication. Lack of adequate sleep, quite common in EDS, can also lead to weight gain. As can undiagnosed and untreated sleep apnoea. Chronic stress is also a huge factor in weight gain. Chronic stress can have physical causes such as chronic pain and injuries. It can also have mental causes, such as a lack of support or depression.  

All of these factors can lead those with EDS, or indeed anyone, to weigh more than the national average. This is mistakenly thought to be a bad thing. In fact, many doctors show weight bias in how they treat patients. Which perpetuates the chronic stress these patients experience. They may prescribe weight loss as a solution to many issues the patient is having. But seeing as long term weight loss is impossible for more than a tiny minority of people, this advice is very outdated. 

It is better in these cases to ensure that rather than focus on your weight, you focus more on getting enough sleep, and taking time to try and reduce pain and stress as much as you can. Also, while you may wish to exercise to improve your muscle mass and hopefully lessen issues such as dislocations, this has nothing to do with your weight. 

On the other end of the scale, many with EDS struggle to gain enough weight or to slow down harmful weight loss. Many of us suffer from gastrointestinal issues such as hiatal hernias, GERD, constipation and, especially hard when trying to gain weight, gastroparesis. Some suffer from complete intestinal failure. Dystautonomia also causes symptoms, such as dizziness and nausea, which make it hard to eat. 

A lot of EDSers come up with workarounds, such as small but frequent meals, liquid meals, nutritional supplement shakes and various medications. Sometimes, however, this is not enough and we have to rely on measures such as gastro-nasal tubes, g-tubes and j-tubes. I won’t go into detail on these as I don’t know enough about them, but I do know a lot of people who has to have them as a direct result of EDS and/or Dysautonomia eg POTS. 

Another point to make is that people with EDS probably have a higher calorific need than we think. We are constantly injuring ourselves, whether through bumps and falls or dislocations. And the body needs calories to fascilitate healing. 

For those who have both EDS and ASD (or similar, such as Sensory Processing Disorder), there can be the added issue of picky eating due to sensory issues. It is important to ensure that this does not lead to weight loss (or failure to gain weight, in children). It’s just one more layer of complication, as if life weren’t complicated enough. 

A fact that’s not well known enough is that weighing less than average is much more harmful than weighing more. Not only does it lead to a sorter life, but outcomes for diseases such as diabetes are worse. I’d recommend this article for more information on this. 

I think the main point I want to make, regardless of whether you have EDS or not, is that it is very important to make sure you eat enough. And that you get enough sleep. And try to reduce pain and stress as much as you can. Take care of these, and weight will be much less of an issue. 
[image of a yellow background, with the words ‘ W is for Weight’ in black. ]

A to Z of EDS: V is for Vagus Nerve

I had never heard of the Vagus Nerve, until I started getting symptoms of SupraVentricularTachycardia (SVT) – which you can read about here. And as I Googled, I kept coming across the Vagus Nerve (though there are two nerves, they’re always referred to in the singular for some reason.) These are cranial nerves that start in the brain and extend down into the stomach and beyond. They send branches into the heart (which explains the link with SVT), and various other organs, such as the lungs, along the way. They seem to be very important nerves, controlling a lot of the parasympathetic nervous system. 

Dysfunction of the vagus nerve can lead to things such as gastroparesis, very low or very fast heart rates, blood pressure issues, fainting (vasovagal syncope – another contender for ‘V’ which I suffer from a lot!) and other issues linked to dysautonomia.  And, as these conditions are often common in EDS, vagus nerve dysfunction may be an important feature in EDS, especially seeing as we’re prone to nerve damage due to weakness in supportive connective tissue. 

This page explains the importance of the vagus nerve better than I can. It also mentions how vagus nerve stimulation is being explored as a treatment for epilepsy and depression, and how some feel it could also help with other illnesses such as migraines and fibromyalgia. While there has not been enough research on this yet, it is an exciting field of study. 
So, there you have it. The Vagus Nerve. A very under appreciated nerve indeed!
[image of a purple background, with the words ‘V is for Vagus Nerve’ in white.]

A to Z of EDS: U is for Urinary Tract

Urinary tract problems can be common in those with EDS, particularly women. In fact, if a nulliparous (woman who hasn’t had kids) woman presents with urinary incontinence, doctors are advised to check for EDS. Urinary incontinence usually only becomes a problem when the pelvic floor suffers trauma during childbirth. So, for women who have never experienced childbirth to get it, is rare. But with EDS, the connective tissue supporting the pelvic floor are loose and that can lead to urinary incontinence. Anecdotally, it’s also a little unusual to suffer from urinary incontinance after your first child. But that’s exactly what happens to most women with EDS. Our poor pelvic floors are just a little more fragile than most. 

Other issues can arise due to our bladders being too stretchy. For example, that can stretch to hold in more liquid than usual. I used to think this was something to be proud of! But holding in urine for too long can lead to infections, so now I make sure to go at regular intervals, whether it feels urgent or not. 

We are also prone to things like bladder pain and cystitis, often without any signs of infection. Plus something called ‘over-active bladder’. I do need to throw in a word of caution however. Often pelvic pain can be from a very different cause. I had intense pain, which was diagnosed as over-active bladder by my GP after kidney X-rays were clear. It turned out, however, that my pain was actually caused by ovarian torsion, where the loose ligaments holding my ovary in place caused it to twist, cutting off blood supply from the vein that was supposed to fulfill this function. So, it eventually necrolised (turned black , ‘died’) and could have led to serious sepsis. So, if you have pain in your bladder/abdominal area, please make sure you get it thoroughly checked out. 
[image of a light green background, with the words ‘U is for Urinary Tract’ in black.]