But you don’t look disabled??

One of the most common sayings I hear is, “you don’t look disabled??” Which is usually a result of people’s perception of what a disabled person should look like. It is a definitive barrier faced daily by many people who have an invisible disability. Just because we look well on the outside, doesn’t mean we are!

One of the biggest problems I personally face is trying to get friends and people in general to understand EDS and how it impacts my life. No words can truly describe what it is like to live with Ehlers-Danlos Syndrome so it is understandable how people may not comprehend it. However, It can be very frustrating how people think this is a condition whereby you are just “bendy”. What they don’t realise is the constant pain, the fatigue, dizzy spells, vomiting in the night and passing out, along with the continual dislocations. All these can take place behind closed doors, and it is very hard for a healthy person to understand.

In the past, I’ve struggled greatly with talking about my conditions, and still find it hard to be honest about how I am feeling. As soon as someone says “how are you?” My automatic reply seems to be “fine thanks.” It’s just so much easier than saying how I am really feeling.
I am extremely lucky to go from being bed bound, to being able to work. I often still struggle with symptoms, but between the ages of 15-17 it was very hard for me to go from being an energetic, bubbly individual to struggling to just get out of bed. I had my education, social life, friendships and relationships taken away and spent years wondering whether I’ll ever be the same again. I am fortunate to be put on medication to control my heart rate, which has contributed to my getting better, but I still suffer from flare ups, dislocations and live my life constantly under the prospect that I may end up using a wheelchair full time again.


I’d be lying if I said I didn’t have my “wobbles” Or moments where I wish my life was different. There would be many times where I would cry for so long, due to the frustration of not being able to do “normal” things. There have even been times where I have felt guilty over being upset because I know of other people with EDS who are so much worse off than me.
The point I’m trying to make is that disability is a spectrum. It is something that you can’t define by someone’s physical appearance alone. It is not fair to dispute whether someone has a disability by the way they look, every single one of us is battling something the other can’t see.

Sophie
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Working full time with a disability

There seems to be an assumption that if you are disabled that you are incapable of working, when in fact over 3.4 million disabled people are in employment in the year 2017, according to the leading charity Scope. Yet if you were to simply google “working full time and disabled”, there are very few websites that offer support or advice for disabled people that are well enough to work.



So I thought I would do a post on it, offering advice and guidance as well as my own personal experiences of working full time with a disability.
If you are either searching for work, or considering tell your employer your disability if you are newly diagnosed, one of the biggest tips I can give is RESEARCH.



Research your prospective company- What are their views on disability? What is the company like to work for? Do they have a good reputation? Are they apart of the disability confident employer scheme?

Do I have to tell my employer?

Well....that depends.



In some situations, depending on the nature of your job and disability you might be legally required to disclose. However, in most cases, you don’t have to tell your employer. In my own experience, I was quite concerned in telling my employer about my disability, but having been attending the educational institute, I felt comfortable knowing their attitudes towards disabilities and disclosed it from the application to interview and induction. I even attended occupational health for an assessment and left there feeling confident that if I needed reasonable adjustments that they would be provided without hesitation. Disclosing my disability to my employer and colleagues has allowed me to have the confidence to educate others regarding invisible disabilities, and show what I am capable of. For me personally, only positive things have happened as a result of the disclosure.

Reasonable adjustments

It is a legal requirement for your employer to provide any form of reasonable adjustments within the workplace to eradicate any barriers that prevent you from working.



Their duty to make reasonable adjustments aims to make sure that, as far as is reasonable, a disabled worker has the same access to everything that is involved in doing and keeping a job as a non-disabled person. They can be anything from changing departments to a less physically demanding role; access to disabled parking; mentoring/ counselling or allowing rest breaks. This list isn’t exhaustive, and it is worth researching what adjustments can be made.
My reasonable adjustments include; an adjustable foot stool, soft cushions to use when my hip pain gets too much and rest breaks to include a few.



Under the Equality Act 2010 and the Disability Discrimination Act, it is your legal right to ask for any reasonable adjustment.

Access To work

Alternatively, the government-funded service that offers financial support to pay for any equipment you need, which is known as Access to Work
An Access to Work adviser works with you and your employer to see what help you need at work, and how best to meet that need. For more information: https://www.gov.uk/access-to-work

What you can get through Access To Work

Access to Work can help pay for any equipment or support you need in order to be able to do your job. This can include:

• adaptations to the equipment you use
• special equipment
• fares to work if you can’t use public transport or drive
• a support worker or job coach to help you in your workplace
• disability awareness training for your colleagues
• a communicator at a job interview
• the cost of moving your equipment if you change location or job

What you get will depend on your circumstances – there’s no set limit.
And finally, the most important bit of advice I can give to any person young or old looking for work is that it is not worth pushing yourself for anyone or anything. No job is worth sacrificing your health over.

Health♿️ Ehlers Danlos Syndrome- What is it?

*Disclosure- this post is just an overview to raise awareness for Ehlers-Danlos Syndrome and should not be taken as medical advice*
Ehlers-Danlos Syndrome is connective tissue disorder caused by a problem in making or using one of the types of collagen. Collagen provides strength and elasticity to tissue within the body and can affect all different parts the of body.
Symptoms
The most common symptom is joint hypermobility which causes joints to be unstable which are prone to frequent dislocations, subluxations and pain. It can also cause problems with the skin such as hyper-extensibility and  fragile skin that can cause bruising quite easily.
Other symptoms can include debilitating fatigue, brain fog, gastrointestinal dysfunction such as nausea/vomiting. There are also secondary conditions that are very common such as POTS (postural orthostatic tachycardia Syndrome) which causes a fast heart rate, dizziness and fainting.
The symptoms listed above are not the only ones exclusive to the condition. There are many others, but the ones that are highlighted are the symptoms that I suffer with the most.
Diagnosis
Now this is a tricky one...
For some types of EDS, there is a genetic test that can be used to diagnose it. However, with EDS type 3 (hypermobility type) the process of diagnosis is through elimination of other conditions and using the “Beighton Score” to asses the flexibility of the joints. The higher the score, the more hypermobile you are.
Now the score itself doesn’t reflect the how bad the condition can be. For example, someone with a low score such as 1, can be severely disabled. Or someone can score 9/9 and not have EDS!
(Taken from EDS UK)
In my case, I scored 7/9. The only place that isn’t classed as “hypermobile” is my elbows!
Treatment
Unfortunately, there is nothing that can be given to treat or cure this condition, and it is simply a case of learning how to manage the symptoms. Painkillers are usually prescribed, along with physiotherapy and other forms of therapy such as CBT. Many people rely on mobility aids, such as wheelchairs, crutches, braces, sticks. As the condition varies, you may see someone walking fine or with crutches one day, and be in a wheelchair the next. THIS DOES NOT MEAN THEY ARE FAKING.
I am currently working full time, and have done for the last 4 months. But even I have to use a wheelchair when there is a lot of walking involved!
Progression
Although it hasn’t been scientifically confirmed, it is believed that EDS does get worse as you get older. It’s very common to have flare ups, or periods where you can feel particularly unwell.
There is such a lack of knowledge and awareness, it is just a battle to be diagnosed in the first place! Currently there are no specialists in my area, and I’ve now been told there’s no point in me being seen by anyone as there’s nothing that can be done. It’s so awful that our NHS services are so stretched that it has come down to this. However, I am determined to make a difference within the EDS community. I want to continue to raise awareness, and campaign for change. No one should have to suffer in the way that people with EDS do.
And this is only the start....😉
Sophie
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Hello!

I thought the best way to start this blog would be by introducing myself!
My name is Sophie, I'm 22 years old from the UK and as you can guess by the title I suffer with various chronic illnesses, the most serious being Ehlers-Danlos Syndrome (EDS Type 3), Postural Orthostatic Tachycardia Syndrome and depression.
I have been quite poorly for the last 7 years although I was a very active child.  I did swimming, ballet, piano, youth theatre, dance- the list goes on! I wanted to try anything and everything! And despite that, I had always felt I couldn't keep up with other children my age. I was always more tired than everyone else, falling asleep a lot earlier and my legs were always "aching." Obviously without realising, these were the signs of  EDS.
Eventually when i was a teenager, I had to leave school early and was unable to walk far without using a wheelchair for nearly 18 months. I missed the most crucial points of a young persons life, and while I am now coping with my illnesses a lot better, I still struggle with my health issues. I wanted to create this blog as a way of raising awareness of these awful conditions, and what it is like to live the life of a 20-something, with an invisible disability.
I am very keen to get involved with some charity work surrounding these illnesses and would like to possibly use this as a platform for some ideas I have planned. Although nothing is definitively set, I am hoping things will start by late 2018 so keep watch!
Sophie

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