Tuesday, 21 May 2019

Time To Diagnosis - EDS Awareness Month

This month is EDS Awareness Month and although I like to raise awareness of EDS throughout the year on my blog and YouTube channel, May is particularly important when it comes to talking about Ehlers-Danlos Syndrome (EDS). Over the years I’ve posted a range of things on my blog about my health, including writing about my Invisible Illness Story, how I got my EDS diagnosis and about Week One, Week Two and Week Three on the Stanmore Rehabilitation Programme. It can sometimes be a challenge to think of something different to do each year to help raise awareness, but this year I’m taking the lead of EDS UK and am going to talk about the time it took for me to get a diagnosis.


Getting a diagnosis of EDS is rarely easy, and after speaking to friends and those in support groups I’ve realised I’m far from alone in waiting years to receive the correct diagnosis. As well as feeling comforted that I’m not alone in my experiences, I also feel massively sad that so many people have to go through the damaging journey that I’ve been on. As I’ve already spoken in a previous post about the logistics of how I got my diagnosis, I want to use this post to talk about why EDS isn’t being diagnosed more quickly, the affect this length of time has on people and what we can be doing to improve this situation.

So, why are patients waiting so long for a diagnosis?

Ehlers-Danlos Syndrome is classified as a rare disease, although it’s thought that the Hypermobility type is most common and affects more people than are documented. I’m obviously no expert when it comes to the training doctors receive and what happens when they qualify, so I can only comment on this from my perspective, after discussing the issue with medical professionals I’ve seen. 



Very early on in my diagnosis journey, I heard people with EDS being referred to as (medical) zebras. I didn’t really understand why and for a while I assumed it had something to do with their stripes. But then I was made aware of a saying that doctors are generally taught in medical school:

“When you hear hoof beats in the hallway, think horses, not zebras.”

This probably sounds like a bit of a random saying, but it’s an analogy that tells doctors that when presented with a symptom/set of symptoms, they should use their common sense and look for a simple or more expected cause first, rather than searching for something unusual. This probably works fine in the majority of medical cases, with a lot of people finding that their symptoms are caused by something fairly straightforward or at least something expected. However, this isn’t the case for everyone, and this is where doctors need to start looking for the zebras (i.e. rarer causes) instead of horses.



Now this would be fine if medical intervention always worked in this way. But unfortunately it doesn’t seem to happen. I’ve lost count of the number of people with EDS I have spoken to who had their symptoms misdiagnosed as conditions such as M.E/CFS, Fibromyalgia, Depression, Anxiety, Psychosomatic Disorders…despite the symptoms not actually fitting with that diagnosis. I know for me, I received an M.E. diagnosis at the age of 15, and was told by the doctor that diagnosed me that she didn’t really think it was the right diagnosis but she didn’t know what else it could be, so we would just call it M.E. for ease. It still surprises me to this day that this kind of attitude is encountered so often by patients who are then found to have a rare disease. 

What this doctor should have done, if she had reached the ends of her expertise, was to refer me on to a higher specialist who could look in to more rare (zebra) causes for my symptoms. But this didn’t happen for me, and it doesn’t happen for so many other people with EDS too. Instead, you get stuck with a diagnosis that is, at best, incorrect, but also more often than not, hugely damaging in that it stops you being listened to, taken seriously and from receiving any kind of treatment or support. 

So how does waiting all this time for a diagnosis affect someone with EDS?

I can’t speak for every single person with Ehlers-Danlos Syndrome because everyone will have their own journey to diagnosis and will be affected by this in different ways. But I can tell you how waiting 25 years to receive an EDS diagnosis affected me. Throughout my childhood, even though my symptoms weren’t too bad, I still had various issues that I needed to see a doctor for. At that point, I just tended to be labelled as clumsy or as an anxious child. But at the age of 15, when everything started to spiral, the reality of fighting for a diagnosis became more and more clear. 

To begin with, when you’re going back and forward to the doctor and having various tests, you feel like things are at least moving forward towards a diagnosis. But with every test that comes back negative, things start to get harder. Soon, you’re at a point where your doctor doesn’t know what else to do – you may have had a couple of referrals and an array of tests, but they’ve reached a point where they can’t do any more. This was when I was incorrectly diagnosed, and because of the complete lack of serious research into M.E., it was an ‘easy’ diagnosis to give me because it basically meant they could stop trying to offer any kind of treatment, answers or support because there were none. 



Having that wrong diagnosis and coupled with my mental health problems, I had got to a point where no one would listen to mine or my family’s concerns any more. Any new or different symptom was just put down to the M.E. or I was accused of being a hypochondriac/attention seeker/making it up. Just imagine being really quite unwell – having your body fail on you time and time again – and simply being told to go away and get on with it. Every time I questioned my diagnosis I was shot down and no matter how hard I tried, I just couldn’t get someone to take me seriously and understand that they should be looking at more unusual causes for my symptoms.

As the years go past and you’re in this continual state of being chronically ill, not listened to, dismissed and using every last ounce of energy you have to try and fight to be heard, your body and mind continue to break. For me, things went on for so long, and got so bad, that I ended up in a psychiatric hospital twice, once under section. And, of course, as soon as anything like that happens, you immediately get stigmatised and anything you say or do is put down to mental illness. I was (and still am) mentally ill and I’m not ashamed to admit that. But one of the biggest contributors to my mental ill health was the fact I did not receive the correct physical diagnosis for 25 years. The constant fight with medical professionals, hours of tears over failed appointments and unhelpful test results, the never-ending pain and fatigue plus the fact my life was passing me by while I was stuck in this permanent hole of despair all just got too much for me. Going through that for 25 long years and facing constant stigma, comments and judgements is enough to make anyone break.


I’m just so thankful that, after 25 years, I somehow managed to find a brilliant GP who made the right referrals and spotted what was going on. If my GP hadn’t made that first referral to my local Rheumatology service, I honestly don’t know where I would be now. I was so close to giving up on life back then, that I’m not even sure I would still be alive. 

I remember a comment I received from a locum gastroenterologist at my local hospital before I was diagnosed, and every time I think of that comment, it just completely floors me. As we spoke about the fact there was a possibility that I might have EDS and that this could be affecting my digestive system, he simply said:

“Well, you can’t possibly have EDS because I’ve seen another patient with it and they have (these) symptoms. And you don’t. And even if you did have EDS, there’s no point in getting a diagnosis for you because no one will be able to do anything about it. You should just go away and get on with your life.”

This, to me, just demonstrates the naivety of this doctor, and I know it’s not just this person that thinks these things. Firstly, just because EDS patient one has certain symptoms, it doesn’t mean that EDS patient two will have exactly the same type and severity of those symptoms. Yes, we may have the same diagnosis, but we are also all individuals and the same condition can affect people in many different ways. And secondly, thinking that there is no point in giving someone a diagnosis because there’s no cure is ludicrous. I believe, certainly for me; that knowing what is wrong and what I am dealing with is massively important for my mental and physical wellbeing. I know there is no cure for EDS. But I also know there are things I can do to try and help myself. If a symptom flares up, I generally know why and know when to start worrying about it. And when I’m referred to a new specialist for a certain problem, they know I have EDS and so have a better understanding of what the problem could be caused by. I know some people don’t like labels, but I cannot comprehend how withholding a diagnosis like EDS would ever be helpful to someone. 

So, how can we improve the time it takes to get a diagnosis?

I guess this is the million-dollar question we’re all asking! And I don’t think there’s an easy answer or a quick fix. One of the biggest things that we can do is to raise awareness, which is where EDS Awareness Month comes in. The more we talk about EDS – whether that’s to our doctors, to friends and family or more widely on social media and beyond – the more people will start to understand. They will know some of the signs and symptoms to look out for. They will feel empowered by knowledge when they go to their doctor, knowing that an EDS diagnosis is a possibility. And with the help of EDS UK, medical professionals will also learn more about Ehlers-Danlos Syndrome and the signs and symptoms to look out for in their patients. They will know that, although they should usually look out for horses, sometimes they need to look a little further in case there’s a zebra instead. 


If you want to help raise awareness this EDS Awareness Month, you can join in with EDS UK’s 'Time To Diagnosis' initiative. They are looking for people with EDS to tell them, through a video or photo, how long it took them to receive a diagnosis. You can either do this by submitting your contribution here or by posting a photo on social media using the hashtag #timetodiagnosis and also tagging @ehlersdanlosuk



How long have you waited for a diagnosis? Will you be sharing your photo on social media too?

Wednesday, 15 May 2019

Mental Health Awareness Week - Body Image #BeBodyKind

If you’ve followed my blog for a while, watch my YouTube videos or follow me on Instagram, then you will probably be aware that I’ve struggled with mental health problems since my teenage years. I like to try and raise awareness of mental illness whenever I can, so when Mental Health Awareness Week comes around, it’s the perfect opportunity for me to create some content to help people understand mental illness that little bit more. 

The Mental Health Foundation started Mental Health Awareness Week in 2001 and for one week each May, they campaign around a specific theme. Since 2001, they have raised awareness of topics like stress, relationships, loneliness, sleep, alcohol and friendship. Hundreds of schools, businesses and communities have come together to start conversations around mental health that can change and even save lives. And this year, with our support, they want to reach more people than ever.


Last year, The Mental Health Foundation found that 30% of all adults have felt so stressed by body image and appearance that they felt overwhelmed or unable to cope. 

So, from 13th-19th May 2019, the focus for Mental Health Awareness Week is Body image – how we feel and think about our bodies. 

It’s pretty common to have body image concerns as you go through life, and a lot of the time this doesn’t lead to a mental health problem. However, it’s important to realise that worries about body image can be a risk factor for mental illnesses and research has found that higher body dissatisfaction is associated with poorer quality of life, psychological distress and the risk of unhealthy eating behaviours and eating disorders. It’s also important to know that body image concerns can affect anyone – men and women, children and adults.


In preparation for Mental Health Awareness Week, the Mental Health Foundation conducted some new online surveys with YouGov in March 2019. They found that:
·     One in five adults (20%) felt shame, just over one third (34%) felt down or low, and 19% felt disgusted because of their body image in the last year
·     Among teenagers, 37% felt upset, and 31% felt ashamed in relation to their body image
·     Just over one third of adults said they have ever felt anxious (34%) or depressed (35%) because of their body image
·     One in eight (13%) adults experienced suicidal thoughts or feelings because of concerns about their body image
·     Just over one in five adults (21%) said images used in advertising had caused them to worry about their body image
·     Just over one in five adults (22%) and 40% of teenagers said images on social media caused them to worry about their body image

With these figures in mind, I wanted to use this post to share some of my experiences of body image concerns and how they have affected my own mental health over the years. 




I don’t really remember ever being particularly aware of my body image until I reached Junior School at the age of seven or eight. Up until then, I had been fairly happy and carefree, and the only thing about my body that occurred to me was making sure it did all the things I wanted to do (playing, sleeping, eating etc.) But when I got to Junior School, I started being bullied. I vividly remember the first time someone made a comment about my body. We were walking back to our classroom after a P.E. lesson, and the boy in the line behind me gave me a kick and called me fat. I don’t recall ever being referred to as fat before then, and I think it must have set my mind whirring. All of a sudden, I became very self-conscious about my body. I was worried about what clothes I wore in case they showed off too much of my body. I hated doing any kind of sport at school because I suddenly just felt like some sort of elephant next to everyone else. I just didn’t want anyone to see me.

The bullying continued throughout Junior School and into Senior School. I wouldn’t say I was an unhappy child – I had a lovely group of friends and I think having them around me took some of the impact away from the bullies. But their comments and actions still hurt and they still affected me. I was always conscious about my body, no matter what I was doing. Even if I was just sat in lessons, I seemed to be hyper-aware of where my body was placed, how I was moving and what everyone else thought of me. Looking back, I don’t think I was a fat child. Sure, I wasn’t really skinny, but I definitely wasn’t overweight. But at the time, those comments just stuck in my mind and I couldn’t let them go.





I think body concerns are often amplified as you go through your teenage years. Your body is changing in ways you may not like or understand, and you have very little control over it. And at the same time, fitting in with your peers seems more important than ever. By the time I reached around the age of 14 or 15, I was starting to find my own way a bit. Fitting in with everyone else wasn’t quite so important, and I had a group of friends who were all different and had their own individual styles and paths they were following. Although I still had body image worries, I was starting to feel more secure in myself. And then I became unwell.

There’s never a good time to get ill, but right at the start of your GCSE years seemed particularly bad timing. All of a sudden, everything was being flipped on its head. I wasn’t able to go to school, I lost contact with a lot of my friends and I was spending a lot of my time either at medical appointments or at home, isolated, feeling really unwell. It’s really hard to have a positive body image when your body isn’t working properly. My illness (which at the time we had no idea what it was – now we know it was my Ehlers-Danlos Syndrome and related conditions) was doing all sorts of things to my body. I lost a lot of weight; I was in terrible pain, felt exhausted all the time and was getting all sorts of strange symptoms. 

It was the weight loss that seemed to attract the majority of comments and attention. Some comments were positive to begin with – saying that I looked good/well etc. But even when I started getting more concerned comments about my weight and my health, my mind was already fixed on losing weight. I’d only ever heard people telling me I was fat before (I’m sure those that loved me dismissed those ideas, but I think I probably only focused on the negative stuff), so to have people now telling me I was thin or too skinny felt kind of good in a weird way. I guess perhaps because I had been called fat for so long and it had made me so upset, that hearing the opposite from people felt like a huge positive. 





I’m not saying it was just these comments that caused me to slip into the depths of an eating disorder because that would be too simplistic, but the long-term bullying and the quick turn-around definitely contributed to it. And before I (and a lot of the people around me) realised, as well as having complex physical health problems, I was also drowning in mental illness. I was clinically depressed and had an eating disorder. 

Eating disorders (whichever type you have) really screw with your body image. No matter how much weight I lost, it was never enough, and I still believed I was too fat. I hated looking at my reflection in the mirror, but at the same time I had this compulsion to check myself to look at which parts of my body I needed to change. Eating disorders are addictive. I would weigh myself several times a day and became obsessed with the numbers on the scales. If they went up, it was the end of the world and I would need to reduce my intake even more or get rid of what I had already eaten. If the number went down, I would get this moment of elation that I had done something right, but that would soon turn to anxiety and the need to make it go down even further. You just get completely lost in this eating disorder bubble of numbers, reflections, food, weight and constant anxiety. 

I look back at photos from my worst times with my eating disorder now, and can see how terribly thin and frail I was; even just a few years ago when I had another relapse. It scares me that I just couldn’t see it then. But that’s what mental illness can do to your perception of body image. And what scares me even more is that, sometimes, when I’m feeling particularly low or the eating disorder thoughts are becoming stronger again, I can look at those pictures, look in the mirror or look at the number on the scales and want to go back to being that thin again. Even now, when I’m in a much more stable place, I know that it only needs something small to tip me back into the clutches of my eating disorder. Every day I have to find the strength to fight with my eating disorder to make sure I win and it doesn’t. Every day, even when I look in the mirror or see a photo of myself and the first thing that comes to my head is ‘I look fat,’ I have to somehow convince myself that my mind is playing tricks on me and that it’s my eating disorder speaking.




I remember being in eating disorder treatment (several times!) and one of the things we were told to do was to look at our bodies in a different way. Instead of looking just at the outside, like you do when you look in a mirror, we should look at what’s going on inside. What our body is doing inside to allow us to do all the things we want to do. Looking at our body in a much more practical and almost mechanical way, being grateful to it for working so we could do things like go shopping, go to the gym, hang out with friends, have children or anything else that meant something to us. And being kind to our body because of these things.

Now, I can see how this can work in a generally healthy individual. But it’s a technique I really struggle with because of my physical health problems. My body isn’t working properly. It isn’t allowing me to do all the things I want to do. It keeps breaking and malfunctioning; making me feel unwell and terrible. Don’t get me wrong – I do try to be grateful for what my body can do and I know others have it far worse than me. But when you’re already fighting with your body image, it’s really hard to feel any love for a body that just won’t work properly. And I know this is quite common amongst people with long-term illnesses. 

It’s really hard to feel good about your body when you’re trying to get your head around everything an illness is doing to it: 
·     Taking medications that change the way you look 
·     Having embarrassing medical situations (i.e. fainting, seizures, sickness, losing control of your bladder or bowels) in front of people you don’t know
·     Having to rely on others and lose your independence at a time when you should be making your own way in life
·     Having invasive tests that feel like they take away your dignity 
·     Feeling like you are losing your identity
·     Having to use mobility aids like sticks and wheelchairs, which completely change the way other people look at you




There are so many ways that having a long-term illness can affect a person’s body image, especially if you are also struggling with mental health problems already. As a young woman, I find it really difficult to feel attractive and to form relationships when I struggle to find the energy to get dressed, put on make-up and go out to meet people. Despite loving my wheelchair and mobility aids for what they allow me to do, they still affect my body image massively and make me almost feel invisible at times. For me, and for many others, it can be so hard to love your body when actually, a lot of the time, you really do hate it. 

Even now, at the age of 30, I still find myself comparing myself to images of other people on social media. Now, I love social media when it’s used in a healthy way or for doing good. But I also realise just how hard it makes it for young and old alike to feel positive about themselves. There are so many ‘beautiful’ people out there posting photos of themselves and their lives, and because social media is always there, it can be hard to get away from perceived perfection. In reality, I know that no one is perfect and beauty is simply one person’s perception. But if you’re already struggling with a mental illness, body image worries or are vulnerable to things like this, it can be so easy to get pulled in to comparing yourself with others on places like Instagram, Facebook and YouTube. When I was in the depths of my eating disorder, I would almost punish myself by following accounts that I knew made me feel inadequate, ugly or fat. These days, although I can still feel bad about my own body when I see someone I feel looks nicer than me, I’m much more in tune with my thoughts and can usually tell if I need to take a break from looking at social media. And I also try to follow a range of accounts with people of all different body shapes and sizes – it’s helping me to see that you don’t have to look a certain way to be beautiful or to be loved.




The Mental Health Foundation are hoping that their report and the awareness raised during Mental Health Awareness Week will help us all to feel better about our bodies and to reach out for help when we don’t. They have a series of tips to help us improve how we feel about our bodies and to help us to protect, promote and maintain a positive body image throughout our lives:

1.   If your body image is a significant cause of stress, or if you’re being bullied about how your body looks, consider talking to a friend, a trusted adult or a health professional
2.   Spring-clean your apps on your smartphone – be aware of how you feel when using them
3.   Look at the people in the accounts you’re following on social media and be mindful of how you feel about your own body and appearance when you look at them
4.   If you see an advert in a magazine, on television, or online that you think presents an unhealthy body image as aspirational, you can complain to the Advertising Standards Authority
5.   At home, parents and carers can lead by example by modelling positive behaviour around body image, eating healthily and staying active
6.   Our language is important. In our daily lives, we can all be more aware of the ways in which we speak about our own and other people’s bodies in casual conversation with friends and family
7.   Find the best way that works for you to stay active – make sure it’s suitable for you and your health though

They are also running a body image challenge – it’s easy to take part and they would love to have as much support as possible. Simply post on social media a picture of a time or a place when you have felt comfortable in your own skin – this could be now, five years ago or at the age of five. It can be a photo of yourself or something else that reminds you of that moment. Use the hashtags #BeBodyKind and #MentalHealthAwarenessWeek and tag @mentalhealthfoundation



I really hope that this post has helped to raise awareness of body image and mental illness, and that hearing some of my story has helped someone else feel less alone in their struggles. If you have any questions or comments, please do let me know, and if you want to share this post on social media or with anyone you know, please do tag me so I can follow where it goes.

For any help and support with mental illness, you can contact a number of places including:

·     Samaritans - on 116 123 for free, 24/7
·     Mind - on 0300 123 3393, Monday-Friday 9am-6pm
·     Beat - on 0808 801 0711, 365 days a year, 12pm-6pm Monday-Friday and 4pm-8pm weekends and bank holidays
·     CALM - on 0800 58 58 58, 365 days a year, 5pm-midnight
·     Maytree - on 0207 263 7070



Can you relate to anything I’ve spoken about with regards to body image and mental health?