Access To Work 

Greetings, dear readers. Today I wish to speak to you of Access To Work, not unreasonably known as the DWP’s best-kept secret, and historically underclaimed in Scotland compared to the rest of the UK.

Access To Work is a publically-funded scheme through the DWP that pays for practical help for you to get into or stay in work if you have a disability or long-term health condition (including a mental health condition) that affects your ability to work or travel to work (or reduce absences for an MH problem). It can also be used if you are self-employed or starting a business. It is *not* a loan and does not have to be paid back, nor does it affect any other benefits (such as PIP) that you receive. Unfortunately, it does not apply to voluntary work – though you should *not* be paying out-of-pocket expenses if you are undertaking that, even if you have increased travel costs due to e.g. needing taxis to travel – but it does apply for work placements, job trials and work experience. This does include temp jobs, even if you are on a succession of time-limited contracts – as long as your condition has lasted at least a year (or is expected to last at least that long) you are fully eligible for Access To Work.

I applied for Access To Work because the costs of taxi fares to travel to and from a temp job reasonably local to me were nonetheless proving quite prohibitive for me. I admit that, after my previous experiences with the DWP, (through applying for PIP; see my rant about this from a few weeks ago at “PIPped at the Post”) I was exceedingly nervous about applying for this and did not do so until after I attempted to walk to the nearest train station on my crutches, a distance ol’ Doc Google assured me was only 10 minutes walk away. After it taking me nearly 25 minutes, and leaving me weeping in pain and needing to be collected from the train station – not to mention in severe pain for the next 3-4 days), I finally relented and made the claim.
The process of starting your claim is unusually accessible, for the DWP – unlike PIP, you do not need to sit on the phone for hours until you finally get through to someone who then shouts at you for mumbling due to fatigue. You can make your initial claim through an online form here: and request if you want to be contacted through phone or email. Unless you can guarantee always being able to answer your phone immediately, I would recommend requesting contact through email – unfortunately you will still need to have a phone conversation to finalise the next part of your claim, but this way your assigned advisor will contact you and tell you their direct number, so you can phone them at your leisure. You will also have their email address if you do this. I would recommend following up every phone conversation with an email to them with a short precis of your conversation, just so that you have a record of what was said and when – this is helpful if you suffer from brain fog (or ADD, like myself) but is a simple precaution I would recommend with any contact you have with the DWP if you happen to have an email address for the person you spoke to. If not, I would recommend writing date and time-stamped notes for yourself with the same precis, simply so that you have easy-to-consult records in the (very likely) event of you needing to follow up with them.

During the phone call where you make your claim, your advisor will ask what you need from Access To Work. I would recommend asking for a workplace assessment. Access To Work can pay for ergonomic desks and chairs, bluetooth headphones, transcription software etc – things you may not have thought of that could make a serious difference to your ability to get or keep a job, even if it’s simply by reducing the levels of pain and fatigue you suffer as a result of working and thus reducing your sickness absences to a manageable level. It can also pay for things like a sign language interpreter, scribe, or support worker to help you with transfers or intimate care, or to wake you if you suffer from narcolepsy or another condition that means you have issues with falling asleep or being difficult to wake. The DWP will always contact your employer to ask them to make a contribution to workplace equipment costs, so make sure you tell them that this is generally voluntary – disability adaptation equipment is, sadly, *horrendously* expensive.

If you are making a claim for travel e.g. for taxi fares, you will need to pay a portion of the costs yourself, but only as much as it would cost you if you were able to use standard public transport – your advisor will ask you to get three quotes from taxi firms and to provide the cost of the public transport you would use without your impairments. In my case, this reduced the cost of travel from over £200 to £45 a month, which, as you can imagine, makes a huge financial difference, particularly if you are working part-time and pro-rata due to your disability.

Whatever the nature of your claim, your advisor will ask you to fill in a form along with your GP (or similar healthcare worker). This will ask you what your condition or disability is and why you are in need of these adaptations, and your GP simply has to verify that this is actually the case – it’s only a shame that this is not the system in place for PIP!
I am very lucky that I have just been offered a 29-hour/week permanent position at a company I temped for in the summer, and that they have been so far very supportive of my increased needs due to mobility. I have just emailed to request a workplace assessment of my new workplace from my advisor in addition to taxi fares, as an unsuitable chair could cripple me within a day or two – I am already aware that I may need to use my wheelchair if the seat I am provided with is not suitable. I won’t deny that this is distinctly frightening for me – I have been so conditioned by years of living in an ableist society that I find it very difficult to ask for the adaptations I need and that will allow me to do my job to the best of my ability. My instinct is still to minimise my own needs, manage and “not rock the boat” – which is why I am writing this. Given that we are now living in a time when the DWP is judging that disabled people with quite severe impairments are capable of work, this is the service they provide to bridge that gap, and all of us who are disabled and want and/or need to work – and are capable of it – should be using it. We should not be feeling guilty. We are claiming what we need and have a right to.

Many thanks to Phyl Meyer of Inclusion Scotland for his help and advice, both personal and professional, throughout this process. They are a bunch of truly lovely and incredibly helpful people, who, in their own words, are “a consortium of organisations of disabled people and disabled individuals. Through a process of structured development we aim to draw attention to the physical, social, economic, cultural and attitudinal barriers that affect our everyday lives as disabled people in Scotland. We aim to encourage a wide understanding of those issues throughout mainstream thought in Scotland. In short, we want to reverse the current social exclusion experienced by disabled people through civil dialogue, partnerships, capacity building, education, persuasion, training and advocacy.” If you have concerns about accessibility relating to your workplace, venue or event, these are absolutely the people to call.

If you have found this blog post useful, interesting or valuable, please consider contributing to my Patreon account. This allows me to continue writing these blog posts, work on my short fiction and my novel, and volunteer for the Scottish Green Party’s Disabled Group and the Scottish Huntingdon’s Society.


Say It With Me – Disability is Not Caused by a “Poor Mental Attitude”

Hello, dear readers. Today I would like to share some observations with you regarding some public perceptions of disability that I have been exposed to recently. I would like speak about manifestations of some damaging attitudes – both overt and subtle, and note how statements that are intended as compliments can be deeply hurtful. 

After my condition worsening suddenly following a couple of months of a three-hour daily commute to a temp job in October, I found myself unable to work outside my home. I did the best thing I could under the circumstances and found myself some freelance work through a website. I usually endeavoured to work around 10 hours a week while lying on my couch with a laptop.
After a long period of fighting through my GP for access to some form of appropriate treatment for my EDS, my referral to a rheumatology physiotherapist finally went through and I was finally given appointments. I started working with a wonderful physio, who actually knew what he was talking about. I have been working with him for a little over a month now, and although he warned me that I was unlikely to see significant change for about three months, he has acknowledged that I do seem to be making quite measurable progress already. 
Not long after I began working with him, I received an unexpected phone call from the agency I had worked for previously asking me if I would be interested in 11 hours a week in a receptionist role. After some consideration, I accepted – I was in quite significant financial trouble by that time, and between my new physio routine and the work I had been doing in learning to pace myself, I felt notably better than I had in some time. Despite some significant issues with pain and fatigue, I was pleased to find that I could handle the 11 hours, and even managed to increase it to 22 hours a week after another worker left unexpectedly. 
So – first point. I am already thoroughly sick of the adaptations I have asked for regarding my disability being treated as though they were optional, being unreasonable, or signs of a lack of commitment. This is the agency I was working for when I became very unwell, so they have had awareness of my impairments for some time, and I reminded my contact quite thoroughly when he offered me this contract. I have been nothing but clear about my capacities and how much I am able to take on, and yet I am continually pressured to take on more hours and threatened with the loss of the contract if I do not. I have made it clear that I have issues with chronic fatigue, and need to attend NHS medical appointments which have very limited flexibility, and yet it continues. 
This is a huge issue because it hits so many of the issues that impact anyone living with a condition where chronic fatigue is an issue. It is almost impossible to convey the experience of chronic fatigue to anyone who has not experienced it. In the past, I have been afflicted so severely that at points I was utterly exhausted and needed literal hours of rest to recover from the effort of stumbling from my bed to my couch. Pacing is an incredibly useful way to learn to regain actual human functionality – but it’s not an easy thing to learn. Ours is a society which glamourises “busyness” and “tiredness”. Working ridiculous hours is seen as “high performance” and “commitment to your job”. Before I broke down with my illness, I worked full time and studied for a law degree while continuously doing unpaid volunteer work for a very demanding hobby. It is incredibly difficult for me to pace; all the doubts and fears I have about being “useless” and “lazy” come constantly to the fore. Pacing is a discipline I have to be constantly conscious of, because, if I don’t, I crash and become unable to function for hours or days. Unwillingness to accept this and putting pressure on me to ignore it is incredibly dangerous for me – particularly as I very much doubt there will be any understanding of the consequences if I do overdo it, crash, and then become unable to work for days or longer. 
Secondly – and undoubtedly a linked issue – there is the fact that every time I go out and attempt to live my life as a disabled person, I keep being praised for my “fantastic positive mental attitude”. I have had this repeatedly from taxi drivers – whom I obviously see a lot of due to my limited mobility – and it is no doubt in part because I do make an effort to answer all of the – rather intrusive – questions I am repeatedly asked about my condition quite fully and comprehensively. I am aware that there is very little public awareness or knowledge of EDS out there, so I try to put my feelings that I deserve privacy aside and speak about it quite frankly and fully in the hope that I am educating at least one person about it. Recently, however, I have also noticed the same kind of comments from friends, family members and others, including healthcare professionals and an advisor from my bank. 
I like to think that some of this is deserved – despite suffering from depression, I am, frankly, a bit of a stubborn bitch. I don’t like feeling dependant, and I really don’t like to be beaten. So I am determined not to let my life end with my diagnosis, or let it stop me doing pretty much anything I really want to do. YOLO is a stupid battle cry, so I’ve borrowed the better one of “One Life – make it count.”. 
But plenty of the associated conversations around these compliments have left me feeling distinctly uncomfortable. Frankly, a great many of them have implied that this “great mental attitude” is better than a cure, and is what the rest of those disabled people need to get back to work and stop being a drag on the rest of us.
You may recognise this attitude from pretty much any piece of literature coming out of the DWP. 
Frankly, based on my own personal experiences and those of friends and acquaintances, attitudes are indeed a huge barrier to employment for disabled people. But not the attitudes *of* disabled people. The problematic attitudes are those of employers, institutions, and the public at large. 
Throughout my own process of returning to work, I have been deluged with comments along the lines of “but you’re on tons of benefits, right?”, “but the government gives you people jobs whenever you want them, right?” and “but yours is a real disability, so you’ll not have any problems, right?” and utterly dumbfounded looks when I explain that disability benefits are extremely difficult to access and very little more than JSA anyway, that *public sector organisations* claim to guarantee an *interview* to any disabled applicant who meets certain requirements, not a job, and that the PIP assessment process is not decided by a diagnosis, but has repeatedly ruled that people who could push a single button were capable of work and thus due nothing. If general understanding of the situation faced by disabled workers is so lacking, perhaps it makes a little more sense how people continue to perpetuate so many damaging attitudes and myths. 
I would never claim that a person’s mental state does not affect either how they feel, or their capacities – I had a very recent experience of how transformative actual hope can be after my first session with my rheumatology physio, the first healthcare worker I had met in nearly three years who had actually heard of my condition and had a coherent plan for actually managing it. It took me nearly two and a half years to get the correct diagnosis for the condition that was destroying my life, and afterwards I was essentially cut loose without any onward referrals or context for services I could access that might help me manage my condition. My GP was willing to help, but – understandably – had no knowledge about the condition. The NHS – and, from what I hear from friends across the pond, the US health system is often worse – has a serious issue with lack of organisation and pathways from diagnosis to accessing treatment. When I was trying to get a diagnosis, the existing pathway that my GP was aware of through NHS literature was out of date and broken, as the rheumatology consultant with the special interest in EDS had retired and his replacement had no interest, and thus had discontinued the service. The wonderful physio I have now been able to access trained with this consultant’s team and is using the results of his work – but I had to find him literally by trawling through the system, finding specific names of specific consultants and departments from Facebook support groups, and then begging my GP to refer me. And I am very lucky to have a cooperative and helpful GP. I know numerous other people whose GPs are far less helpful, and who are thus unable to access services that might concretely improve their condition and their life. 
Before I saw this physio, I was desperate, being given increasingly strong painkillers and beginning to despair of ever improving at all. I can speak with very real knowledge of how this could affect your attitudes and your motivation. Endless waiting lists to access services, seeing person after person who has no knowledge of your condition and a only list of cheap suggestions that don’t help you to offer, and the prospect of dealing with employers who treat adaptations that would allow you to access – or to continue to – work as frivolities? These hugely compound the huge barriers that many impairments already put in place. 

Frankly – I can understand why extended experience of this could affect anyone’s willingness to keep trying. But – and say it with me now – that attitude is not the barrier in itself, and nor is it formed in a vacuum. It is formed by experience with the systems put in place to help, and with society at large, and thus continual willingness to treat the attitude – not to mention the impairments themselves – as individual problems that the individual alone is responsible for overcoming – is horrendously damaging to all of us, and only continues to fix those barriers ever-more-solidly in place. 

If you have found this blog useful, interesting or valuable, please consider donating to my Patreon. This allows me continue my work on this blog, work on my short fiction and my novel, and continue my volunteer work for the Scottish Green Party’s Disabled group and the Scottish Huntingdon’s Society. 

PIPped at the Post

It has been a busy few months for me since I had last had the spoons and time to blog. 
I was very fortunate in that I not only received a wheelchair from the NHS/Westmark quite a bit more swiftly than I had feared, but was actually able to receive a much better, self-propellable one from a lovely friend who no longer needed it in England. It was transported up to me through the good offices of two other equally lovely friends who were visiting family in the area. It reminded me once again the amazing resource that a friend network is, and how much I have to fight to keep mine. I am now in the process of returning the original chair to the NHS.
During those months, I made the decision not to pursue my PIP claim, and not fill in my evidence form before the deadline. 
There were a number of different reasons for this – I have been told by professionals that documentary evidence is usually needed, and the thought of having to chase my GP for a report, and quite possibly pay, and to pay what might have needed to be quite a substantial amount to my lovely private pain management physio for a report, was not particularly helpful. I was also doing freelance copywriting, copy editing and proofing through an online agency called Upwork to try to make ends meet, and the time and spoons necessary to pursue the PIP claim properly were badly impacting on the time and spoons I had available for working. 
These were the reasons I was happy to give to my family and friends, and even hold to myself, for why I was not pursuing it. Beyond that, however, and probably ultimately having more influence on my decision, there were other factors which were harder to talk about.
The first of all is that, in addition to the physical disabilities from my EDS, I also suffer from MH problems – namely Major Depressive Disorder, General Anxiety Disorder, and ADD. The GAD is usually under pretty good control with Venlafaxine, but the experience of the DWP texting and phoning me about the PIP claim was already setting it off badly. Put bluntly – I had lived with serious anxiety over a long sustained period before, while my work were responding badly to my disabilities, and it frankly scares the shit out of me. When it is bad, it takes over my life. It stops me sleeping, it stops me eating, it stops me enjoying anything, it robs me of my ability to work, or even think straight, and it makes me a terrible person to live with. It makes my husband’s life as well as mine a living hell. 
The thought of being beholden to the DWP – actually dependent on them – scared the shit out of me. I have too many disabled friends who are dependent on them for their ability to live, and their lives are not their own. They are, at any moment, subject to payments being cut for utterly ridiculous reasons that often take a long, long time to sort out, and sometimes cannot be sorted out at all, for utterly arbitrary reasons. Basically I knew that being dependent on them would mean that I would be giving Anxiety – that harrying, needle-toothed monster – a key to my door again, and I would not be able to shut it away. My life would not be my own, or under my own control, and that hit my pride too. That may sound ridiculous, but personal dignity should not be counted as a luxury. It was bad enough being dependent on my parents or my husband, but at least they not only love me, but are my own people. Our lives are deeply interconnected in webs of love and debt and caring that mean that we rescue each other, take care of each other and hold each other all the time – even me, even now. It did not feel the same as being dependent on an external agency that has given ample reason to believe that it wants all disabled people dead in a ditch somewhere, and it did not take my dignity from me in the way that I feared being dependant on the DWP might. 
Another rather serious factor was the fact that my brain sabotages me on a regular basis by failing to believe that I am actually ill. No matter that I have a letter of diagnosis from an esteemed geneticist certifying that I have EDS (HV) and the Fragile X Premutation (in addition to my diagnoses from my psychiatrist of MDD, GAD and ADD), my brain is fond of telling me that those are worth nothing. That I am in fact making up all the pain, exhaustion, nausea and dizziness, milking the diagnoses, just too lazy to walk places using my crutches, and taking the excuse to spend most of my day on the couch with hot water bottles at my back and neck. Thus, of course, that I would go for the PIP medical, and they would immediately refuse me. 
I would like to reassure the reader that I am aware of the things my brain does that are harmful to me, and that I do have some coping mechanisms in place to try to limit the damage it can cause. These have been cobbled together from my experiences of Being Me, and thus they work better at some times than others. The other night, for example, when my brain insisted that I was just being lazy in waiting for a taxi home and could walk perfectly well to the nearby station with my crutches, they did not kick in, and therefore I was picked up, dizzy with fatigue and close to weeping in pain, from the station by my husband, and had to spend the rest of the evening horizontal, feeling nauseous and shuddering with pain even on my heaviest painkillers. I am still in quite severe pain in my knees, shoulders, upper back, lower back and wrists from having done this, three days later. On that particular occasion, they did not work very well. But I do now have that experience to learn from going forward, which will hopefully allow me to improve those coping mechanisms in future. 
To an extent, my decision not to pursue my application for PIP falls under these coping mechanisms. I was aware of how badly I would react psychologically if I am turned down for PIP – which, looking at the statistics, is more likely than not. I have the guidance of my experience of the time it took me to get a diagnosis of EDS, which was nearly two years of my GP telling me that I in fact was suffering somatic pain as a symptom of depression. I had to change GP and do a significant amount of personal research before I even knew where I could request an onward referral to to eventually access the correct diagnosis, and more still to be able to access the correct services for help. I know the psychological effect it had on me every time I went to seek help and was told essentially that I was lying, overreacting and making things up. It also echoed my experiences of decades of teachers and bosses regarding what I now know are symptoms of my ADD – it is unfortunate, but such things leave scars. I knew from experience how much it would devastate me, how much self-doubt it would cause, and how much that would enable symptoms of my anxiety and depression to start bothering me again – which in turn would sap my energy and ability to work and recover!
Thus, not applying was a psychological defence mechanism of a kind. Perhaps not a great one, but it was one with a certain inorexable utility. Altogether, along with all the other reasons, it did add up to enough to prevent me from making the application. Instead, I pushed myself to take on more freelance work that I could do from my couch and bed to try to make up enough money to manage on. 
And of course I am very angry at myself about this fact. Primarily because I know it is a DWP tactic. They make it very difficult to apply for any form of social security. The public logic of this is that that difficulty will discourage “timewasters” and “fakers”. This, of course, does not apply terribly well when the benefit in question is designed for vulnerable people, including people with MH issues, and of course the DWP have been made aware of this by multiple charities and advocacy groups, but choose to ignore it. It works well for them if we are too ill and too afraid to apply for and achieve payment of benefit. I am angry at myself for giving in to that form of pressure. Some days I hate myself for it. But in strict terms of cost-benefit analysis – how much time and energy it would have taken to even put the application, including the psychological fallout from the impact of filling out the form – versus the time I could and did put into my freelance work, getting myself referred to the rheumatology physiotherapy service, and into simple recovery – I honestly cannot say it was the wrong one.
And this angers me more than I can say. How can it ever be correct that the simple process of applying for a benefit designed for the most vulnerable people is so taxing – and so expensive – that it actively damages someone’s health more than (admittedly flexible and part-time) working does and costs them money they do not have? 

Rolling With It

I’ve just done a fairly difficult thing – or rather, the first step in a string of significant things that was very difficult for me to even start. I’ve phoned my GP and made an appointment, where I’m going to ask her about referring me for a wheelchair assessment. 
This particular decision has been building for a while. I’ve been using a stick on and off for the past couple of years due to issues that I now know were part of my EDS and related conditions (though at the time I was told were everything from anaemia to anxiety attacks to somatic depressive symptoms). In the past couple of months I’ve progressed to two sticks, then saw a musculoskeletal physio and got given a proper pair of elbow crutches. I use one much of the time because not having a free hand is so deeply irritating, only using the two for any walk of any significant distance – and, honestly, one proper crutch is so deeply superior in design and stability to two normal sticks that I wish I’d got one years ago! 

And now I’m progressing to a wheelchair. And that’s scary as all hell. 

The two things that have specifically set me on this particular course are 1) my recent deeply awful experience at Birmingham New Street Station, and 2) my experience fundraising yesterday at Glasgow Airport. 

My experience at New Street – where, despite being given an early lift to the station by an awesome friend, I was forced to walk with my crutch and a heavy backpack, a long distance through a pedestrian area with no public seating, where I was refused seats at various “open air” cafes because they did not open til 9am, where every lift and escalator I encountered seemed to be blocked off for repair and staff, when asked, vaguely waved in possible directions for replacements, and where due to all this chaos I missed my train and had to pay £113 I could ill-afford for a replacement ticket to get home – convinced me that I had reached the level of disability where I couldn’t expect public spaces to be adequately accessible for me any more, and would now need to investigate ahead and double check or book aid in advance. It also left me nearly sobbing undignifiedly in a heady mix of pain, anger and frustration in public behind my book in a Pret A Manger. 

My experience at Glasgow Airport, luckily, was much nicer. I joined another awesome pair of friends in shake-a-bucket fundraising for the Scottish Huntington’s Association and my friend who works there asked a colleague on their Community Team to sort a seat for me, as clearly standing for 3 hours would be utterly impossible. That lovely person found the simplest option was to borrow a wheelchair for me from their accessibility service. It was unexpectedly magical. 

Part of my condition is POTS – like many people with EDS, I suffer issues with my autonomic nervous system, meaning I often get suddenly dizzy and faint on standing and even find sitting in an ordinary chair with my feet on the floor for any period of time very difficult as my blood pressure plunges. In this simple manual wheelchair, I was able to sit for three hours with the bucket in my lap, thanking the many kind people who made donations, without any of the issues that have made going out so difficult in recent months – no pain, no fatigue, no dizziness, no numbing feet or plunging blood pressure and no being forced into the odd postures putting pressure on various joints that “normal” chairs so frequently force me into. I was euphoric (even before my friend kindly treated us to Chai lattes, which nearly sent me into the stratosphere!). 

As soon as I got home, I was googling wheelchair hire and consulting with my various online support groups, who kindly let me know about the NHS assessment service. So I made the appointment, and then lay awake all night alternating between excitement and anxiety (and good old-fashioned pain, of course). 

The two main themes of the anxious thoughts chasing each other around my head were on one hand related to other people’s reactions, and on the other related to my own.  

Wheelchairs are a strangely persistent symbol of disability in a way that almost no other form of aid is, and thus elicit particular reactions that others do not. Sadly, I am expecting some relatives and friends will make this decision to improve my mobility and quality of life difficult for me. The people who have been asking if I “really *need*” my crutch(es) will very likely go up a huge notch with a wheelchair, and I expect to end up explaining to them – probably repeatedly, at times when I really don’t have the resources to do so – that yes, while I can walk short distances using my crutch without it, it will enable me to get out and about and enjoy activities that I would not otherwise be able to do. So it depends on your definition of “need”, but I will certainly *benefit* from it. I will almost certainly receive abuse from a member of the public who sees me get out of the chair to, say, transfer to a seat on public transport or go into a toilet cubicle with my crutch. 

There is a strange perception that wheelchair usage is a binary thing – essentially, that wheelchairs are solely for the use of those who cannot even move their legs, and anyone else using one is “faking”. It is reflected in the common use of the term “wheelchair-bound” as opposed to “wheelchair user” – the idea that a wheelchair could be an instrument of liberation, allowing someone to live a fuller life, never quite seems to compute. Apparently a wheelchair, much like disability itself, is a life sentence into which one is chained for the edification and opprobrium of the public. 

Even more irritatingly, the same internalised ableism that has allowed this subject to remain in this false binary so long in public perception kept me awake too. This felt – and feels still – like a crystallisation of the fact that this disability is something that is not going to get better, that my life is now incredibly limited, and that the hopes I have for parenthood, a fulfilling career, feeling like a “useful” human being, and even for the simple dream of not living my every waking moment in pain are increasingly shrinking away. I try and fight them, to remain positive and pragmatic, but having to fight on every front possible – from medical to personal to financial to the inside of one’s own head – wears away at such resolve like unpleasantly scummy, razor-tipped waves on a British beach. 

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The December Spoonie Challenge, parts 1 and 2

I’ve decided to do these little bitesize challenges here, as they lead into a lot of interesting things I may write more about later on. 
1) and 2) to correlate challenge better with days of the month.

1) What is your chronic health issue/disability?

Ehlers-Danlos Syndrome (hypermobility variant) 

A list of common symptoms of EDS (HV) from the Ehlers-Danlos Support UK website (well worth a look for fuller information).
Joint hypermobility with the joints having a wider range of movement than usual
Loose, unstable joints that can lead to dislocations and subluxations.

Joint pain and fatigue.

Easy bruising.

Gastrointestinal dysfunction.

POTS (postural orthostatic tachycardia syndrome) causing fast heart rate, dizziness and fainting.

Mitral valve prolapse, a heart valve abnormality which is usually only mild in EDS-HT.

Uterine, rectal or bladder prolapse.

Urinary dysfunction

Varicose veins.

I have all of these except the penultimate two (at least yet, thank God). 

It’s pretty disabling, and why I need to use mobility aids now to get around – not only for the fact that my knees, elbows, shoulders and wrists regularly sublux and are usually painful, but for the fatigue and POTS-related issues that can mean I need to sit down or lie down suddenly without much warning. 

My crutches not only take a lot of the pressure off my knees (putting it onto my shoulders and elbows, but nothing’s perfect) but usually at least stop me falling over suddenly before I can get to a seat. I’m looking forward to getting a wheelchair from a wonderful friend in Leicestershire in a couple of weeks time via another wonderful couple of friends visiting family in Harrogate. This will increase my ability to go out and do things like shopping and visiting museums and country parks a huge amount. 
– Fragile X Premutation – a genetic disorder responsible for my fertility issues, and my various MH problems – MDD, GAD and ADD. 

Basically, it’s the reason why I have potentially disabling issues with concentration, anxiety, sensory processing and fertility above and beyond my chronic pain and fatigue symptoms from EDS. It literally means I don’t produce the neurotransmitters which allow neurotypical people to inhibit the “anxiety pathway” in their brains, and why my venlafaxine is so utterly necessary. 

It could potentially give me FXS ataxia in later life, though if anyone will be able to tell above and beyond the EDS symptoms by that point I don’t know 
2) What’s the weirdest advice you’ve been given to “cure” your condition?

 I’ve had all the classics – every vitamin and mineral under the Sun, mindfulness, CBT, exercise (I do it, and try to improve my muscle tone to try to improve my joint stability, but it’s really not easy, and far from a miracle cure), “just not using my mobility aids”, “just not taking my antidepressant/anti-anxiety medication”, meditation, acupuncture, going gluten-free/lactose-free/vegan/my very expensive diet, electric shocks, and “my husband should beat me more” (that’s an online one, in case you haven’t guessed).

A particular one that really sticks with me was actually fertility related rather than EDS-related (perhaps the physical issue of joints coming out of sockets is a bit too tangible for the real woo-merchants). 

It was from a woman who claimed that she had been told she was irrevocably infertile due to Premature Ovarian Insufficiency, but that she now had three children after going completely gluten-free, eating clean, and taking her own expensive proprietary blend of nutritional supplements. 

This was a bad schtick to use on someone who knows that POI occasionally reverses completely, usually near the traditional age for menopause, but it filled me with completely helpless rage. I try to remind myself that this women may simply have had the reversal (happens in 5-20% of cases for reasons not well understood) and credited her personal diet fad, and may not have been deliberately preying on others, but the tone was incredibly predatory and the price truly extortionate. 

I may have written her a long email, heavy with links to medical journals. I haven’t had the spoons to check her blog again, but I doubt she has taken much of it onboard.