As Lockdown eases, please remember those of us who continue to live in Lockdown

The last few weeks have seen pretty huge changes in the UK as lockdown measures have started to ease. More children are back at school, more people are going into work, non-essential shops are re-opening, you can enjoy a drink at the pub or go to get your hair cut and people are now allowed to visit zoos, the seaside, their family. You could be forgiven for thinking life is going back to ‘normal’ (although we are far from normal yet with the virus still spreading). But not everyone is escaping the lockdown restrictions. There are a group of people for whom lockdown will continue long after we get on top of this virus – those who live with disabilities and/or chronic illnesses. 

For us, lockdown didn’t start on the 23^rd March 2020. Some of us have been living in lockdown for months or even years already. My ‘lockdown’ began at the age of 15, when I became really unwell with what we originally thought was ‘just’ M.E. Over the years though, the M.E. diagnosis has been added to and I now know that I also have a whole collection of chronic illnesses including Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Gastroparesis, Bladder Dysfunction, Mast Cell Activation Syndrome and a few more problems thrown in for good measure. I’ve spent much of my life unable to leave the house (and sometimes even unable to leave my bed). I’m ‘lucky’ at the moment – if I need to, I can leave the house for a medical appointment or the odd ‘nice’ thing. But I’ve been through many a period where even getting to an essential medical appointment has been impossible. And I have friends who have spent years trapped in their homes because they’re simply too unwell to even get down the stairs. 

 

When lockdown was first implemented, there were a lot of conversations on social media about how awful it was going to be to have to stay at home for the majority of the time, or to even have to self-isolate completely for two weeks if there was a possibility of having the virus. People spoke about how upset they were that their plans had been cancelled, they were worried about their jobs, holidays weren’t going to happen and people were concerned that there was no end date in sight. These are all completely valid concerns for anyone to have. But I know to begin with, a lot people in the chronic illness and disability communities (myself included), found these conversations really hard to hear. We have spent large chunks of our lives being hidden away from the world, forgotten because we are behind closed doors. We have had to grieve for the lives we have lost, the careers that have been abruptly ended, the plans that may never be able to happen. This is our reality. So to hear everyone suddenly discussing how awful it was going to be, when we have been dealing with it alone for so many years, was really hard to get your head around. 

But as time went on, things changed a bit. The world started to become a bit more accessible. Working from home and in a flexible way became the norm. People started utilising facilities for virtual meetings. Friends used video calls to keep in touch. Suddenly virtual parties and quizzes became the way people chose to socialise. Attractions quickly started to provide online content so they could still be experienced without having to go there in person. It was soon possible to watch a West End musical or play from the comfort of your own home. Medical appointments were offered via video call, rather than having to travel miles to be seen in person. Communities came together to ensure those who couldn’t leave the house were given food deliveries, medication and phone calls to check they were OK. Articles were written and videos were made about how to support each other while we had to stay at home. 

 

The world actually started to care about people who couldn’t leave the house because it was something that was affecting healthy, non-disabled people. Accessibility options and adaptations that the disabled and chronic illness communities have been fighting for for years were brought in overnight. After spending years being told we couldn’t work from home or that we would have to miss out if we couldn’t get somewhere in person, these things quickly became possible when the rest of the world realised they didn’t want to lose out. And to be totally honest, it really hurt to see how easily these measures could be put in place if people just tried. 

It’s hard to talk about positives related to the Coronavirus, because so much pain and suffering has come from it. But one positive thing the virus and the resulting lockdown have brought is that they have opened peoples’ eyes to the lives of those with disabilities and chronic illnesses. It’s something that Miranda Hart has spoken so eloquently about recently, both on Twitter and on Instagram. The last few months have given non-disabled people a rare insight into what it’s like to have a disability or chronic illness. Of course, it’s not the same. Although there’s uncertainty, there is the prospect of an end date one day with lockdown/the virus, which those with chronic illnesses and disabilities don’t have. But non-disabled people have, often for the first time, experienced how an illness can bring your whole world crashing down around you. They’ve experienced the grief of looked-forward-to plans being cancelled. The fear of seeing an illness, which is out of your control, impact on your ability to earn money and have a career. They’ve seen how hard it is to have to stay at home for most of the time, not able to go to work, to the shops, to socialise with friends or to even get medical care.

Of course, I wouldn’t wish these things on anyone and I certainly wouldn’t have wished for a global pandemic to make these things a reality for everyone. But that’s what’s happened, and I think it’s important that we as a society learn things from our experiences so we can make the world a better place for everyone. Over the course of lockdown, I’ve had people tell me that they had no idea being housebound was so hard. People have said that they didn’t realise until recently the grief that comes when an illness destroys every single part of your life. There have been conversations on social media about what it must be like to be housebound all the time. People have expressed how great all these new accessible measures are. But those conversations are already dwindling. 

 

Life is getting back to some sort of normality and people are already forgetting their experiences of being housebound. Working from home is becoming less straightforward and the expectation to be back there in person has returned. People aren’t so interested in video calls and virtual groups because they can meet people in person again. Attractions have stopped making virtual content accessible. Those who can’t leave the house are now expected to try and fight for online food deliveries and the phone has stopped ringing with people checking you’re coping OK at home. Most people are getting back to ‘normal’ and are leaving those with disabilities and chronic illnesses behind again. Now that the problem of being housebound isn’t affecting the majority, the drive for non-disabled people to fight for accessibility just isn’t there any more. And we desperately need healthy, non-disabled people to be fighting our corner and being an ally too. 

There is so much that the world could learn from the last few months that would really help those with disabilities and chronic illnesses. So if you’re reading this and wondering what you can do to help us and make the world more accessible, I thought I would list just a few things that you can do to become an ally to disabled and chronically ill people:

 

·      If you own a company or work in any kind of management role, look into ways that you can help to make working flexible. Obviously some roles don’t lend themselves to working from home, but you could also look at flexible hours or the option to work part-time. And there are many jobs that can be done from home, as the lockdown has shown us. Don’t automatically dismiss job candidates with disabilities or those who ask about adaptations. Talk to them and find out what would make it easier for them to work with you. We are disabled/chronically ill, but we also have so much to give if we are just given the right adaptations for our needs

·       If you have a friend or family member with a disability or chronic illness, please just remember them. I’ve lost count of the number of times someone has said to me, “Oh I didn’t invite you because I didn’t think you’d be able to come.” Please don’t make decisions for us. Invite us to social events and let us decide if we are well enough or if adaptations need to be made

·      If someone with a disability or chronic illness isn’t able to come out in person, look at ways you can adapt to still include them. Ask them if they’d like to chat on the phone or by video call. Is there a way they could get involved with something virtually? Could you perhaps organise some events, such as virtual quizzes or group video chats, that are accessible to them from the beginning? I think the biggest thing is just not to forget them just because they’re not there in person

·      If you work for an attraction (whether that’s a theme park, museum, zoo, gardens or anything else), try to continue with virtual content. Virtual tours or videos have allowed some disabled people to experience ‘going out’ for the first time, when ordinarily they would have no hope of being able to enjoy that attraction

·      Also look at ways the attraction can be made more accessible to those with disabilities/chronic illnesses that might be able to visit in person. Are there enough accessible toilets? Is information in an accessible format? Please actually speak to disabled people and get our views on accessibility measures, as we know what adaptations we need

·      If you work in the live entertainment industry (i.e. putting on musicals, plays, concerts and other live events) consider whether you can continue to provide video content that people can watch from home. During lockdown, some disabled people have been able to watch a West End Musical or enjoy a concert by their favourite musician/singer for the first time, and it’s been great! Accessibility can be a huge problem when it comes to live events and entertainment, so having the option to watch something from home, at a time that suits the individual, is invaluable. There’s no reason you can’t charge for this service either – I don’t think disabled people would expect to get this sort of content for free. So it’s another possible avenue for much-needed revenue, especially at the moment when entertainment venues are struggling so much, and makes live events inclusive for all

·      Although some disabled people may not be able to visit places like theatres or arenas, there are also a lot who can as long as the correct adaptations are in place. So please help disabled people to feel welcome by ensuring access is suitable for a whole range of needs (and again, please talk to us to find out what we actually need). For example, make sure the booking process is accessible, that there is enough accessible seating (both for those in wheelchairs and those who may not be able to walk far/climb stairs), that there are accessible toilets and that programmes are available in different formats

·      It would help a lot of people with disabilities and chronic illnesses if the NHS could continue to make greater use of virtual medical appointments. Obviously these aren’t suitable for all appointments – we will still need to visit hospitals for tests, treatments and appointments that require us to be examined or seen in person. And sometimes I quite appreciate being able to see a Doctor in person. But for a lot of appointments, talking on the phone or by video call would be absolutely fine. Virtual appointments would save us having to use limited energy to travel long distances, would mean we could save money on travel costs and parking and would also mean that those who are too unwell to leave the house can still access the medical care they so desperately need

·      I think it would be great if we continued to be more aware of those in our local community who might be housebound or who find it difficult to leave the house. In our community a series of Facebook groups have been set up so that those shielding could ask for help if they needed it. I would love to see these groups continue to be used once lockdown has eased, to try and continue to help those who might need it. But more than that, we need to be checking on our neighbours because not everyone will have social media. If everyone checked on the neighbours around them, then no one would have to face the world alone. So why not drop a note through your neighbours’ doors to let them know your details if they need anything. Get to know the people who live around you – sometimes disabled and chronically ill people may not need any practical help, but would just love some social contact

·      And in the wider society, it would be great to see a bit more focus on those with disabilities and chronic illnesses. I’ve seen a lot more articles written by disabled and chronically ill people during the pandemic because the media realised we have something to contribute on this particular issue. But this inclusion needs to continue – our experiences matter. And we don’t just have to contribute to disability and health related topics – we have other talents and views on a whole range of other things too!

 

I think the biggest thing society can do to be an ally to people with disabilities and chronic illnesses though, is to listen to us, include us and remember we exist. Please, if you take one thing away from lockdown, let it be an increased awareness of what it is like to live with a disability or chronic illness. This period of time has given everyone a unique insight, albeit only a brief glimpse, of what it is like to have restrictions placed on your life by uncontrollable health circumstances. You have experienced the fear and anxiety that comes from a medical condition, the grief that comes from having your plans cancelled and having no control over when you might be able to do things again and the overwhelming loneliness and isolation that comes from staying in your home for months on end.

So please, don’t forget how these experiences made you feel because that is just a tiny taster of what it can be like living with a disability or chronic illness. Use your increased knowledge to reach out to family and friends with disabilities and chronic illnesses. Find ways to do what you can to make the world more inclusive and accessible. Join disabled people in fighting for equality and respect. And above all, please, just don’t forget that there will still be many people living in lockdown when you go back to your normal life. 

Has lockdown helped you to understand a bit more of what it can be like living with a disability or chronic illness? Or as a disabled/chronically ill person, have you noticed any positive or negative changes as lockdown restrictions are being eased?

 

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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?

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