When your "invisible" disability becomes "visible"

I thought that this weeks blog post would be based on using a mobility aid in work, my experiences and how I tackle unintentional ableist comments. So just to give you a little bit of background info, I have been working for over a year and only a select few know of my disability. This is not because I have tried to hide it in any way, but when there are few hundred people working at your organisation and you have an invisible disability it is kind of hard to make it visible for everyone.....unless you start using a mobility aid.


A few of weeks ago, I had subluxed my left hip and it has caused me a lot of problems. Since then the joint itself continually moves when very little pressure is applied to it, and at random times too. So sometimes I could be doing something and it could be fine, the next time i try to do that it subluxes again. Not only is this causing me a lot of pain but it is also causing me nerve pain in my left leg, sciatica, ankle instability and difficulty walking. After a lot of deliberation and seeking advice from people with EDS on Instagram I decided to give a mobility aid a try. I sent my parents up the attic to get my crutches as I haven't used them in a few years to see if that would help and safe to say it made a huge difference. After a few weeks of struggling I could finally walk around work with little pain in comparison to what I had before and felt more stable in my walking! I could come home from work and found that I had more energy than what I had in the previous weeks, and didn't feel like I was going to fall over all the time.

On the plus side, I definitely have some amazing colleagues who weren't afraid to joke here and there with me, or as I am now known as "Hop-a-long" (which I absolutely love!)Although some people may be sensitive to this, I actually love it! I have explained my condition in great detail and they are aware of what I have to deal with, they are not afraid to see the funny side or have a sense of humour. 

Overall, it has been such a positive experience for me and it helped my condition so much! I definitely wont be resisting using a mobility aid in work in the future-whatever that may be. 
However, what I don't particularly like is when complete strangers come up to me and start asking questions. Even though I work in the same place as them, I still find it slightly intrusive when people ask personal questions when in fact I don't even know their name! I try to remember that it is usually out of curiosity rather than rudeness, but I find it so hard to explain what is wrong with me as they are usually expecting me to say something like "I've sprained my ankle." How do I explain I have a debilitating genetic condition that causes my joints to dislocate at random times with someone you have never even met before? The response I usually have is an awkward "awhhhh.."


I struggled for weeks before finally using one and it was the best decision I made. It made my life so much easier, the pain and fatigue eased and it also made people realised that I am disabled. When you have an invisible disability, I think it's very easy for people to forget that you are "chronically ill" and it's so easy for it to feel like they don't understand. For anyone who is struggling and is considering using a mobility aid- just go for it!


Sophie

xx 

Hospital Appointment

I thought I might do a little bit of an update as I have been so busy these last few weeks. I have sat exams, moved out, got a new job and started my degree. Safe to say, I haven't had much time to blog. So a few weeks ago, I had a hospital appointment with the chronic pain team in my local area, and safe to say I was so nervous! I had waited well over a year for this appointment, and it definitely felt like it was one of the last chances for me to get some proper help with my EDS.

The first part of my appointment was spent sitting with a lovely nurse analysing my chronic pain form, and we spent much of our time talking about our lovely dogs and puppies. After which, I had an appointment with a different specialist nurse who has decided a plan of action for managing my EDS. (About flippin' time!)

So over the next few months I will be trialled on a different type of medication to treat not only my chronic pain, but the nerve pain and issues in my left which seems to be there constantly! Shes also decided for me to have specialist physiotherapy with someone that actually knows what Ehlers Danlos Syndrome is and how to best treat it.

It was such a change to talk to someone and actually have them listen to me! After years of going back and forth from different doctors it was definitely a change.
I will also be going on a chronic pain management programme for about 6 weeks which will consist of a team of physiotherapists, occupational therapists, psychologists and other health professionals. The waiting list is currently a year but I am so excited to start this programme. I am feeling really optimistic about the outcome. Although nothing can cure Ehlers-Danlos Syndrome and at the moment nothing can take away the pain it brings, but at least i'll finally have support from medical professionals on how to deal with it for the future.

-Sophie
xxx

Dating With a Disability- Part Two

So I thought it might be a good idea to write a blog post on my experience of dating with a disability, especially as my boyfriend Rhys post was really well received.

I asked him to write a blog post for me on what his perspective is on dating someone with a disability, and any advice he would give. Safe to say, he wrote a really amazing piece and he explained exactly the point I was trying to make.

IT IS NO DIFFERENT TO DATING A HEALTHY PERSON.

People seem to think there is some advice to give for this, but it is literally just that. If you love someone, you love them no matter what. If they are the right person they will love you and embrace and love your disability too. Don't get me wrong, it has been hard on times, especially as I sometimes feel guilty if we have to go about things a different way.
It can be hard to show when I’m having a bad day, or flare up as it means that I am showing an incredibly vulnerable side but after having a long talk with Rhys I’ve realised that it is important to show my limits. One of my biggest worries was disclosing that I used to use wheelchair, and it is always in the back of my mind that some day it will be a possibility again since i've had my EDS diagnosis.

For the past couple of weeks, I have been having an awful pain flare. I am still managing to get by in work, but between the pain in my hips and legs and managing full time employment it has just left completely exhausted. I always feel guilty if I have to cancel any plans, or rearrange especially when those plans are with Rhys. Over time I have learnt that it doesn't matter that we aren't going on long walks or out clubbing every weekend, but just the fact that we are spending time together.

So here are my tip tips on dating with a disability!

Honesty

My advice for anyone who has a disability and is dating- Just be honest!
Be completely upfront and honest about your conditions as soon as you can, but don't disclose anything you aren't comfortable with. The sooner the other person knows, the sooner you will know if they are worth sticking around!

Communication

Explain what you can and can't do. Don't push yourself for anyone. If they are the right person they will do what it takes to make sure that you are comfortable, if they are annoyed at you for not being able to do something because you are in pain- they are not a nice person!

Patience

Give the other person time to come to terms with your disability. This doesn't mean that this gives them the right to treat you any less, but it can be different experience for someone if they are not familiar with your disability or chronic illness.

Time

The only way you will truly know if they are the right person is by giving the relationship time, and that goes for whether you are chronically ill, disabled or completely healthy. Life is unpredictable and full of surprises, but the most important thing is to not give up.


-Sophie

xx

My thoughts on "Afflicted"

After seeing all the controversy surrounding the new Netflix original series “Afflicted” I thought it was only right I should watch it for myself before making any sort of comment. After watching it is safe to say, I was disappointed. Netflix, you have let us down!

For those of you that don’t know, “Afflicted” is a small documentary series set in America and is focused around the lives of a number of people with various rare chronic illnesses. Including conditions such as M.E, sensitivity disorders and lupus. All of which are seriously debilitating and painful conditions! The series contained interviews from medical professionals (primarily psychiatrists) and researchers with interviews from the sufferers and their relatives. So you would think it would at least be factually correct? No! The series manages to provided no factual evidence at all and from the start the programme puts doubt in the viewers mind as to whether these PHYSICAL conditions are actually real, or whether they are all in the patients mind.....

What made it even worse was seeing the interviews with the relatives and especially the parents who seemed to focus on their own doubts of their validity of their love ones conditions! Now, clearly this was edited, and I am sure that they spoke greatly about the conditions itself but it seems that it clearly wasn't interesting enough to make the final cut. In order to make the series more interesting and watchable they decided to play a guessing game with the viewer whether the conditions are real or all just in their heads.

Now some of you know, I have depression and I am in no way suggesting that a mental illness is any better or worse than a physical condition. They are both awful to deal with in their own ways. However, I believe that it is totally wrong for physical illnesses to be portrayed as "all in our heads" and that we are "making it up."

It was heart breaking to see the extreme suffering that these people had to go through for them to only be stigmatised and mocked in front of a global audience. I later found out that the participants of this series were initially told that they were would be a part of a “compassionate" documentary of what it is like to live with a chronic illness.

Our illnesses should not be used for your entertainment!

Netflix, you had an amazing opportunity here to spread awareness of a variety of conditions and the lack of resources that are available to treat them, yet you have turned it into a mockery. With such a widespread number of viewers, you have to take responsibility of the programmes you release and the impact that they have on the viewers. As a person with an invisible disability, it was extremely hard to watch. We are already a marginalised community but programmes like this only isolates us further. Shame on you.

Sophie

xx

The negative side of results day!

So it is nearly that time of year again- GCSE and A level results!

This time of year is always particularly stressful for young students, but it is even more stressful if you are chronically ill and disabled. Believe me I have had my fair share of "highs" and "lows" when it comes to achieving my results, so here are 5 tips to go by.


Firstly...

1. It is not the end of the world.

Many students and teachers seem to believe that if you don't have your life figured  out by 18, then you are somehow are not going to achieve great things. If you don't go to university, you are a failure, you are stupid, incompetent, you will never get a job. But the reality of the world outside education is far from this. There are so many alternatives that are under looked, but are so beneficial for young people today.

2. Alternatives to university?

One of the biggest alternatives to university, is an apprenticeship. I am currently coming towards the end of my business administration apprenticeship, and I can honestly say it has been the best thing for me. It has allowed me to complete a qualification at my own pace and being paid to do it as well! What is even better about this is that while being employed as an apprentice, we still have the same rights as regular workers. It is highly important to find a supportive employer, especially if full time is something you might struggle with.

3. Clearing

So, you didn't get the results you were expecting but still want to go to university? Why not try clearing? This may be a bit daunting if you are chronically ill, but there are still many ways that you can access support at university after you have started. It doesn't mean that you will miss out on any help because you have asked a little bit later.

Also, a big thing to note: Do not go to university for the sake of it.

If you are unsure what to do, apply next year!


4. College instead of sixth form

So points 2 and 3 mainly focus on A Level results, but what about GCSE? Didn't get the grades that you expected? That is totally fine, chances are there is someone else in the same position as you.
If you were hoping to do A levels but are worrying about the difficulty, why not try college instead?
Although there are some controversy over this, BTECs are a great way to get into university.

5. Resits

Lastly, the most obvious point to make- you can always resit! It is never to late to resit, and there are so many places that take on private candidates, that it is possible for you to study from home at your own pace.


Hopefully this will help anyone going through the stress of results day! If anyone needs any advice on anything else then feel free to contact me.

Instagram: https://www.instagram.com/bendyblogs/?hl=en
Twitter: https://twitter.com/Bendyblogs?lang=en
Facebook: https://www.facebook.com/bendyblogs/


Sophie
x

Scope for Change 2018- Residential Weekend

So the day had finally arrived! It was time for me to begin my journey for the Scope for Change 2018 residential training weekend.


I travelled up to Loughborough and spent 3 days there to begin training for my campaign with Scope. After feeling a little unwell on Friday, it was touch and go whether I would actually make it but I am so glad I did!

Day one

I left at roughly 7:30 in the morning, and after a long 4 hour journey we managed to reach the Burleigh Court in Loughborough at 11:30. The hotel we stayed in was amazing, and I later found out that Team GB Paralympians had previously stayed there! It was so accessible and all staff were really friendly.


We started the weekend off with a meet up with everyone, getting to know each other and then had some lunch in the restaurant. Afterwards, we had our first session which was "Planning a Campaign." This was really useful and a great way for us to get started! It focused on our objectives and aims, different tactics and how to target our audience. It was so useful to hear from other disabled campaigners and all our ideas just seemed to bounce off each other.

Later on, we  had a 1-1 with a member of the Scope team to talk about our campaign and what they could do to help. I found this particularly useful as it meant that we weren't on our own through this.


The day ended with a fabulous meal at the restaurant hotel and an early night in bed. Safe to say by around half past 8, I was knackered and in quite a bit of pain. I only wished I could have stayed a little bit longer!

Day Two

So this is where the training really stepped up! We had 4 training sessions which where spread out over the day, including a guest speaker. It included training like "Using Social Media" and how to spread our message across a variety of platforms, and how we can utilise the use of social media to our audience. Another speech, that was particularly useful was the "Making a change with your story and video." This was definitely one of my favourite session as it focused not only on our story as a disability campaigner, but also from the perspective of the interviewer. It meant that we were able to use these skills to be a competent and good interviewer when gathering testimonies for our campaign.

After a little lunch break, we then had two more sessions which included using persuasive techniques and how to influence people. My all time favourite session had to be from the external speaker- Bal Deol. After hearing her story and her journey of campaigning, she is officially my new idol! So Bal had discovered that she was being over charged by taxi firms, for simply being a wheelchair user. This led to her being involved in an investigating with the BBC whereby they were able to provide evidence to prove that she was right!

Over the course of a few years, she was able to propose a new legislation which meant that it is now illegal for taxi drivers to refuse to take wheelchair users which has been passed. Her story was so inspiring to prospective campaigners, and she has achieved so much at just 25 years old.

Towards the end of the day, my pain levels started to increase. I was so exhausted but so excited for all the good things to come. Unfortunately, I had to leave dinner a little bit earlier than I had hoped as I was just in too much pain in my hips and spine. 

Day Three

So this was our final day, and the weekend definitely flew by. Our first session of the day was "People, Power and Parliament" with another guest speaker called Skye Yarlett. She was brilliant and really engaging! This session was particularly useful if your campaign involves changing any legislation, and how to get the most out of your MP.

At this point, it had now been official that I was going to collaborate my campaign with Chloe, a fellow Scope participant who lives just down the road from me. We both have similar ideas in what we want to achieve, and for us to share the work load around our conditions we have decided to join forces. After all, two heads are better than one!

By mid day, it was safe to say I was really starting to struggle. It had been such a long weekend and I was battling all sorts of symptoms, but I'm so glad I managed to be a part of it. After feeling a little bit demotivated, I was beginning to feel that there was so much in the world that needed to be changed, would it ever be possible to achieve full accessibility and equality for disabled people? But after hearing Bal's speech, this was definitely the turning point for me in the training.  I would definitely recommend anyone with a disability to join Scope for Change! I am so grateful to be given the opportunity and I now feel like anything is possible.

It isn't about changing everything in society, it is about making a difference no matter how small.

-Sophie xx

(Photo Credit: Scope Team)

Dating with a disability- Part one

Hi, I'm Rhys, Sophies boyfriend of 8 months. I'm writing this as Sophie asked me to share my experience of dating someone with a chronic illness.



I met Sophie on a dating app in October and she blew me away. We really hit it off and decided to meet up. The first few dates went really well and I looked her up on facebook so that I could add her on there.

This was when I first found out about the illnesses Sophie had. At first, the prospect of this was really scary and became even more so after a bit of time spent googling everything. This all came as a bit of a shock to me, as seeing Sophie you would never be able to tell.

Shortly after, Sophie actually brought this up and was able to explain a bit better. I could tell this was something that was difficult for her, and knew that her telling me all of this could leaving her thinking that she might've scared me away.

But would finding any of this out change anything about the amazing person that I had met?

Since I am here writing this its probably quite obvious that the answer was ‘no'. She is still beautiful, kind, funny and smart. None of that was going to change and why would it?

The time we have spent together has been perfect and I wouldn’t change it for the world. Even though we sometimes have to approach things a different way and take a bit more time doing them. I think this can sometimes be a bit frustrating for Sophie as we can't do things ‘normal' and have to take life a little slower on occasions.

One of the most important thing about our relationship would have to be honesty and being able to talk to each other about anything. I think this has really helped the two of us. I now have a better understanding of some of the limits to what we can do and I think Sophie is more comfortable being able to talk openly about how she is feeling.

Sophie asked if I would add a bit at the end with some tips for dating someone with a chronic illness, but I don't think there is anything special that you shouldn't be doing already for someone you are in a relationship with.

--Rhys 

Disabled and going to university?

So the summer is here! Exams are over! And you may be wondering what to do next. Do you do A Levels? Go to college? Go to university?!

These decisions are completely life-changing and are even more stressful when you have a disability or a chronic illness.

For me personally, I have had a wide range of experience when it comes to education. I have tried EVERYTHING. I have taken a year out, done part-time education, full-time education, self-studying and distance learning. I have had to change my career path and the way I study as a result of my EDS, and I have even left a brick university because of it.

However, that was my experience, and I have spoken to many people who have successfully completed university with their disability and in their own way. My biggest downfall was my complete stubbornness. I hate asking for help and felt that because I wasn't “disabled enough” during my time at university, I therefore, was not entitled to the help. 

So here are some tips on how to survive university with a disability.

1. Inform the university as soon as you can.


The best way to do this is to disclose it on your UCAS application! By doing it this way, the university can get in contact with you about the support you need before you even start your course.

2. Speak to your tutor and let them know of your condition.


Now you may think there isn't much point in doing this, especially if your course has quite a lot of students. For example, my university course had 100+ students. It's better to speak to your tutor so they can put a name to a face, but they can also see that you are trying. If you are completely honest with them, explain how your condition affects you, they are less likely to think that you haven't turned up to a lecture because you are hungover.

3. Apply for DSA if needed


This is a big must! This can help you so much, whether it is just a bit of extra income to having a helper attend lectures with you.
 
4. Speak to your disability officer


Make yourself known to your disability officer, they may be able to provide support for you that you didn't think was possible! 


5. Sort out support in lectures and exams


This is something that your disability officer can help with. You can get access to all sort of support that you should have had in secondary school, such as extra time in exams, a reader or a scribe. You can even get access to equipment to help you with your lectures that can come out of your DSA like recording equipment! Every little bit of support you get can go a long way!

6. Ask for help


Please whatever you do, don't do what I did. I was so stubborn that at times I refused help, which looking back is quite silly. If some offers you help, take it! If you need help, ask for it! You are not being a pain or a nuisance. You are paying a lot of money, giving up your time and energy to get your degree, you deserve the help.

7. Do not give up.


If attending mainstream university is not for you, then there are other ways. How about attending a college instead? Classes tend to be smaller so more likely to get support. Or how about Open University, or other means of distance learning?
University was ultimately the best and worst time of my life. I met so many wonderful people and had the experience of living on my own with complete strangers who turned out to be the most amazing people! That is something that money can’t buy, but it wasn't an easy decision for me to leave either!

The point I'm trying to make is that it doesn't matter if you don't graduate at 21 or if you can't get your degree in the way that society or schools say you should. It doesn't matter when you get there in your life, as long as you don't give up.


Sophie xxx

Scope for Change 2018 Launch Event- London

 (photo credits: Scope Charity Twitter)

As some of you know I have been offered an amazing opportunity to be apart of a campaign programme with the disability charity Scope. As a result of this, I was invited to attend their launch event in London where I have met some fantastic disabled campaigners.

To say I was nervous at the start of the event would be an understatement. For me personally, I felt that I would not "fit in" at event like this, as from the outside I can look completely healthy. I am a complete advocate for invisible disabilities, but my own self acceptance to "becoming disabled" was definitely a long one, and so it was natural to feel like this. I can honestly say that attending this event was an incredible opportunity and one that I will definitely wont forget. From the moment I walked in, I felt comfortable and that I belonged.

The afternoon started with some introductions and icebreakers. It primarily focused on our background, our conditions and what we would like to campaign about, as well as what we want to get from the residential training in Lough borough in August. The hours just flew by, and after a half an hour break, we heard from some guest speakers.

 (photo credits: Scope Charity Twitter)

Firstly, to talk about his experiences was Robin Hindle Fisher, one of the trustees of Scope. What resonated with me most about Robins speech, was his attitude and determination to succeed despite growing up in a time where disability was not accepted to the extent that it is today. And while being able to comment on his childhood and adolescence, admitted that while society has progressed so much since then, we still have a long way to go. 

To quote Robin "Encourage to see society as our friends and not as our enemy, if non disabled people feel uncomfortable see that as something that we can change"

The other guest speaker was a woman called Esther Foreman, who is the CEO of The Social Change Agency, and a professional campaigner. She talked about her experiences of being diagnosed with MS at 15, and the knock on effect that this had on her life and what spurred her on to begin campaigning. Her most recent campaign is the "ScrapPIP20m" which involves people showing how far 20m will get them, to show that people with disabilities still require full support if they can walk a few steps more than 20 metres, something which the UK government disagrees with. Hearing how Esther had coped with her disability and her journey to self acceptance, was definitely something I needed. Especially after feeling like I didn't deserve to be at the event as I didn't class myself as "disabled enough". 

After to speaking to other disabled young people, it made me realise that things will be okay. We can all achieve anything we set our mind on to, whether its a career or just doing something you are passionate about. It was wonderful to hear from so many people who are in a similar position and going forward in achieving equality together, regardless on what our disability is.

Love Sophie.

xxx

Campaign Launch!

Hey everyone👋🏼
I know some of you already know what I’m going to say, as I was too excited to wait to announce it on my blog but....
I have been selected to take part in the “Scope for Change” involving the leading disability charity Scope!
It is a programme whereby 15 disabled applicants were chosen to have training on how to campaign for something you are really passionate about, with the support of Scope!
The campaign I have decided to create is #Education4allUK
It’s primary focus is to ensure that all disabled children have an equal access to education in mainstream schools. I hope for this to start off in my local community of South Wales, and then branch it out to the rest of Wales and the UK. I am truly passionate about accessibility in education, and based on my own experiences as well as speaking to other disabled and chronically ill people, more work definitely needs to be done in this area!
We are one of the richest, and successful countries in the world, there is no excuse for barriers to be in place for a child to access education.
I am so thankful for Scope for giving me this opportunity, and to hopefully create a platform where we can introduce a more equal and diverse community within our mainstream schools. I am incredibly grateful that my employer wants to get involved in helping rolling this throughout our local community.
6 months into BendyBlogs, and so much has changed for the better. I want to thank you all for your support and hopefully this will continue to grow.
Much love,
Sophie xxx

Fundraising

Hey everyone👋🏼

I have been super busy this past month (hence the lack of posts!) but it has been totally worth it!

Last month, I decided I wanted to do something to raise month for EDS Support UK. I struggled greatly to find something that I could participate in as I definitely can’t run or even walk long distances, so I decided to do a Zipwire! It may not be a marathon but it’s something😂 

I had set a target of £200, which I thought was quite ambitious but I have managed to raise....

£458.75!!

There are still some more donations still due to come in and its still not too late for you to donate: 


https://www.justgiving.com/fundraising/sophie-thomas29


I completed the zipwire over the weekend and I can't believe how supportive everyone has been! It was such a fantastic experience, and definitely one I will never forget. EDS Support UK is a fantastic charity that supports people like me with Ehlers-Danlos Syndrome and is completely funded through donations alone! It is so lovely to see the donations continuing to go up and hopefully I can continue to fundraise and support this fabulous charity!

Much love,

Sophie xxx

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
Xx

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
Xxx

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

Xxx