Claiming my disabled identity

For Disability Pride Month I wanted to write about how I came to identify as disabled…

When I became chronically ill in 2012 I didn’t instantly see myself as “disabled”, I didn’t even initially see myself as chronically ill. I think this was maybe because at the time I initially hoped that my health situation would be temporary and I’d soon get well and regain my old life back, but over time as it sunk it that I was in it for the long haul I began to identify myself as “chronically ill”.

As the months and years went by on the word disability and disabled crept into my life more. For example I needed to use disabled toilets, I had a disability parking badge, I received disability benefits and and among other examples I sometimes had to refer to myself as disabled instead of chronically ill as it was more understandable to able-bodied people in certain situations. My health in public also became more public as I had to start using mobility aids too, from a walking stick to crutches to now an a wheelchair but I still sometimes wear a Sunflower Lanyard to highlight that I have invisible disabilities too beyond my access needs for my wheelchair. 

As time went on I also began to be more ‘dis-abled’ too - by the limits put upon me by my illnesses such as bad symptom days, by the barriers in society such as lack of accessibility in a building or by ableist attitudes and lots more things.

I slowly began to identify with the idea that maybe as well as being chronically ill I could also disabled too. More and more I felt more comfortable with the idea of being disabled and confident to present myself as a disabled person and being part of the disabled community. I didn’t know what the qualifications were to meet the criteria to be disabled but I felt within me that yes I was disabled too.

Under the UK Equality Act 2010 you are disabled “If you have a physical or mental impairment that has a ‘substantial’ and ’long-term’ negative effect on your ability to do normal daily activities.”

With the above two definitions yep I definitely do meet the definition of disability, but even if you do meet the criteria and would rather not identify as disabled that’s completely fine. Be who you feel comfortable being!

I now embrace being disabled and I’m happy to identify myself as disabled. feel proud to be part of the disabled community and I use my lived experience to help raise awareness: I have this blog, and also the opportunities I’ve done with Scope various M.E. charities plus some other random things.

Finding your identity isn’t easy; it was a bit of a grieving process when I accepted I was disabled as it felt almost a permanency to my chronic health conditions, like they were here to stay and this is who I am now. It was also joining a world of access issues especially now I’m a wheelchair user whenever I go out and the nightmare that can be and the exclusion so many people like myself and other disabled people face because the world isn’t designed for us especially when there are places that could so easily be made accessible if the venue wanted to. Or access issues with transport: taxis, buses, trains, planes even ambulances (yep in the UK a lot of NHS emergency ambulances don’t take wheelchairs on board!) Then there’s issues with work and getting assistance with work, disabled children getting the support they need in schools, lack of access in healthcare, the whole challenge with benefits and the stigma that some with that plus the paperwork and assessments, lack of disability representation and misrepresentation, ableism and so so so much more.

Disabled people are the largest minority any yet we are still fighting for equality and equity even in the most privileged of countries. 

It’s nice to feel part of something, especially during Disability Pride Month seeing different disabled people coming together to celebrate their disabled identity and share our pride in having disabilities of all forms breaking down stigma and showing what needs to change in society to make it a better place for disabled people.

Hopefully the more we celebrate Disability Pride Month the more attention it will get to everyone.

The Disability Pride Flag

This is the current Disability Pride flag. Within the flag each colour represents a different type of disability:

• Red = physical disabilities
• Yellow = Neurodiverse (such as ASD aka Autism, ADHD, dyslexia etc.)
• White = invisible or hidden disabilities as well as those who are undiagnosed 
• Blue = emotional and mental health disorders 
• Green = sensory disabilities (visual impairment, d/Deaf and Deafblind etc.)

The original flag:

The original flag was created in 2019 and had much more vivid colours and zig-zagged to represent the barriers disabled people face. However when viewed on digital screens it affected some people with photosensitivity and seizures and other visually triggered symptoms.

In response to this the flag was changed to the flag we have today; the lines were made diagonal and the colours were dulled. The red and the green were also separated to accommodate for those with red-green colour blindness.

It’s time to celebrate

When the clock stuck midnight it marked the start of July, for the disabled community this marks our Disability Pride month. 

A month to celebrate our disabled identity but unlike other pride months there won’t be merchandise, companies won’t change their logo to our flag - they probably don’t even know what our flag looks like. There won’t be any huge carnivals or parades in the streets with everyone disabled or able bodied joining in to celebrating disabled identity and achievements for disabled people. 

Even in the most privileged countries disabled people will still be struggling for equality, their rights, equality, dignity and equity. 

Posts on Disability Pride this month will probably only reach our own community the algorithms probably don’t think our posts worth a share to the world to boost our celebration or even an explanation as to why we even have a Disability Pride Month. 

I know this post won’t go far but at least you now know it’s the disabled communities time to celebrate this month.

My joints go out more than I do!

This is an EDS joke and I mean it quite literally. Having EDS (Ehlers-Danlos Syndrome) means that among other symptoms my joints easily sublux and dislocate. Even the slightest wrong move or hyperextention that wouldn’t be too disastrous to most people, for those like me with EDS can really be a bad move too much. We’re mostly used to just popping our joints back in which would make most people scream and cringe simultaneously but occasionally a trip to the ED is required if the dislocation is stubborn, severe, or there is damage. 

EDS is a hereditary condition that affects the connective tissue - basically the glue of the body so it affects the joints, organs, skin, ligaments - pretty much everything. There are 13 different types of EDS each have a different characteristics as well as a genetic marker apart from hypermobile EDS which researchers are still looking the genetic marker for. I had genetic testing as it was originally suspected that I may have vascular EDS but that came back negative so I was diagnosed with hypermobile EDS (hEDS) but I still have some features of vEDS.

Zebras represent the condition as EDS is classed as a rare illness. The reason behind the zebra is because doctors are taught “when you hear hoof beats think horses not zebras” meaning look for the most common cause first but of course like zebras rare things exist too.

Fact: did you know a group of zebras are called a dazzle!

It often takes those with the condition many years to get a diagnosis. Once I was diagnosed I could see all the signs of my EDS being there in my life way back to childhood when my hypermobility made me a great ballet dancer but I had to give up dancing because of my hyperlordosis (an acute inward curvature of the lower spine) which I now see was a sign of my EDS back them. As well as how all my complaints of joint pain were put down to just simple ‘growing pain’ and other little signs and symptoms of my EDS being there all along. I think now though however EDS is getting a little more recognition so hopefully my collective missed opportunities wouldn’t happen again today if I had seen at least one professional who knew about EDS.

My skin is alsomore fragile so I’m more susceptible to injury so I’m always covered in marks and bruises. Activity in terms of movements have to be done carefully due to the high risk of injury including causing a joint to sublux (partly dislocate) or dislocate. EDS also affects the organs; for me it’s left me in bladder failure so I have a surgically placed catheter, which has greatly improved my quality of life even though it is difficult having a catheter to manage. EDS also affects my heart and gastrointestinal system (which can develop into secondary conditions). Another co-morbidity/symptom of EDS is dysautonomia which can lead to developing conditions like POTS - Postural Orthostatic Tachycardia Syndrome (this is also linked to my M.E. too).

To brace or not to brace is the question. Braces can be useful but the joint can get reliant and lose ability if a brace is over used. Generally it’s what’s been prescribed. For me I generally wear my splints and braces post dislocation or if a joint is feeling a bit unstable and in need of support, especially my thumb so my most commonly worn brace is my CMC thumb brace. Some parts of the body are harder or impossible to brace; you can get tape but it’s something I’ve not tried. My shoulders are the worst for this as they frequently dislocate/sublux but you can’t brace a shoulder and wearing a sling isn’t practical.

Living with EDS can be really difficult, and tricky. It takes careful management to pace your day to help reduce fatigue and pain. Aids/gadgets help to make life easier. According to my best friend I’m the gadget queen! I find aids so helpful from hands free can openers, adapted knives and scissors, perching stool, PopSockets and phone holders to body pillows (and everything in between) which all help to reduce dislocations/subluxations, make things easier to handle or reduce fatigue, reduce aches and more. I also find other equipment helps me too like my profiling bed, and because my EDS makes me more susceptible to pressure sores I have an airflow mattress; I also have a bath lift. Learning to pace is important too. I also find staying mobile helps even if it is difficult but at the same time accepting and embracing the use of mobility aids I use both crutches or a wheelchair - these help me immensely; I can only manage short distances and weight bearing with my EDS causes me a lot of pain especially in my hips so mobility aids help a lot.

Pain is a big aspect of having EDS. The pain covers your whole body; you get the muscular-skeletal pain but then I also have my bladder pain and my gastrointestinal pain too. The pain can feel pretty relentless; there are no days off from it. Some days are better than others but it’s always there. Meds and other things help, I’ve tried lots of things, some things help better than others. Mindfulness, heat, distraction, movement, massage, TENS machines/pens. I also find that my symptoms like my pain have a domino effect upon my other illnesses and they bounce off one another. Like if my hip pain is bad my M.E. leg pain might flare up. Pain relief medication only does so much too; like in the name it only gives you relief and takes the edge off the pain but it doesn’t take it away it just makes the pain just about tolerable and manageable so I can just about function and have some sort of quality of life.

I wish my EDS had been pick up sooner when I was a child. It’s slowly getting more recognition but more is needed. It often depends upon where you live, locally very few professional's here know much about EDS but in London where my care is so much more is known about the condition. Hopefully as more research is done more is understood about EDS and therefore treatments and the diagnosing of EDS will improve.

It’s okay not to feel okay

Mental health is a topic I’ve recently realised I need to write more about. If I feel okay writing about physical health then why shouldn’t I feel okay writing about mental health. (Maybe it’s because mental health holds more stigma?) Our mental wellbeing is just as important to see to as our physical wellbeing. The same goes for medication: medication for or bodies and for our minds - they’re both just as important to take to be well and to not to feel ashamed of taking or admitting that we take.

Recently I’ve been struggling more with my mental health, to the point where I’ve needed help to manage things to be safe and well - Again there’s there shouldn’t be any shame in admitting that we’re getting support for our mental health; we freely talk about seeing a doctor or nurse or physiotherapist so it should be okay to say that we’re seeing a therapist or psychiatrist or community mental health nurse. 

Anyway, as well as the professionals supporting me my Dad and best friend have been amazing throughout this blip that I’ve been going through and I can’t thank everyone for their support. I’ve also got back in touch with my old therapist and I’m seeing her again which means a lot and it will be good to just have a space to simply be and just let out.

This blip just came on though a mixture of social stressors and my physical health being a bit worse than usual. I do find that the my physical and mental health impact upon one other so when I’m having a bad day physically my mood gets lower. On top of that when I haven’t slept well that affects me both physically and emotionally too, and also when I’m not well physically and especially emotionally I don’t sleep well making things worse. 

I’ve struggled with my mental health most of my life but for quite a while now I’ve been managing really well and I’ve not needed much support apart from a recent medication increase to help with my anxiety (I’d been waiting for the appointment for nearly a year) I’d also had a couple of sessions with my therapist again in the new year because I was struggling to cope due to anxiety but a few sessions was all I needed compared to the year and half of therapy I’d had the previous time I’d had therapy with the same therapist. It’s good to know that she’s [the therapist] always there for a ‘top-up’ of therapy and it’s always with the same therapist plus the last time and this time when I’ve needed a top-up I’ve gotten a session within a week - the perks of private therapy. It does cost me but it’s discounted as I’m on PIP but it is a medical expense just like a physical health expense but I get what I need which I wouldn’t get with mental health services (MHS) locally plus my sessions aren’t time limited and I get the type of therapy that suits me which is creative therapy which again MHS all don’t offer.

Whilst I’ve been going through this mental health blip I’ve been doing a lot of diamond art which I’ve found helpful to do. My concentration hasn’t been great and sometimes I struggle to distract myself and just listening or watching something wasn’t enough so when I called for support someone suggested doing colouring or diamond art with the television or my audiobook/podcast on in the background. I found her suggestion really helpful initially I did some colouring and ordered a diamond art kit and now I’m on my third kit! I’ve found mini projects easier as they seem more doable compared to a giant picture; I now need to find what to do with all the key rings and bookmarks I’ve made! - I’ve just bought some setting glue so I can fix down the gems and I’m thinking of selling them and putting the sale towards my fundraising? I’ve gifted some of the things I’ve made to friends and a bookmark to my Dad for Father’s Day.

I find engaging my senses helpful for grounding me too. So I’ve had my aromatherapy diffuser on, my Mathmos protector on (it projects like a lava lamp onto my ceiling - I’d love a galaxy protector) and I used to use lollies but I’ve discovered vegan fruit pastels. I also have my fidget ring that I wear or I’ll have a tangle toy. I have other things in my self-care box too like a calm jar, colouring bits, a micro Lego block type kit to built and other things - most of my self-care box is based upon the contents Megan put in my Recovery Shoebox* and my self-care box is the one Megan made for me. My therapist and I also made a self-care jar with little self-care notes in there to remind me of things to do or things that make me smile and feel positive.

Trigger Warning:

*The Recovery Shoe-box Project was started by Megan who has now sadly passed away by suicide. The project was personal to Megan as she struggled with her own mental health but she helped so many people through the project. In her memory Megan's friends and family continue the project to reach out to more people with mental illnesses to help them with their recovery.

Personally recovery for me is learning to live with my mental illnesses. I rather them not be there but depression and anxiety will always be there but it’s about me learning to be the one in charge, that’s what recovery looks like to me and inevitably I’ll have good and bad days and blips and wobbles but that’s okay. It’s okay to not be okay all of the time.

Product review: Fidget rings

As someone who deals with anxiety I really love my fidget rings. I prefer the design I’m wearing in the photo personally but there are other designs of fidget rings out there as well as fidget necklaces. 

What I love about fidget rings is that they’re a lot more discreet to use compared to other fidget items I’ve used in the past such as tangle toys; they’re also a bit more ‘grown up’ compared to fidget toys too. I can easily fidget with my ring and you’d hardly notice what I’m doing. Fiddling with my ring really does help as I find it helps to keep my hands occupied when I’m anxious and with my OCD I find it helps calm my compulsions which get worse when I’m anxious.

You can get many designs of fidget rings, I have this daisy one and another silver rainbow one and a gold one so I can pair them with my outfit of the day. The main places I’ve bought fidget rings from are Etsy and Calm Collective - If you buy from Calm Collective a portion of their sales goes towards supporting UK mental health charities too so good for you and good for the charities.

As well as fidget rings being good for anxiety disorders, they can help with other conditions such as ASD and ADHD as well as stopping habits like nail picking and biting.

I’d highly recommend fidget rings; if you’re looking around to buy them you can also search for anxiety rings as another name for them. They help in so many ways and there are so many different designs and styles out there including necklaces like I mentioned and you can buy them in many different sizes including some styles and sizes for men. They are hugely beneficial and look lovely at the same time.