Trying to feel proud for Disability Pride Month

July is Disability Pride Month – a month for Disabled people to share our lived experiences and also raise awareness of the obstacles our community faces. Disability Pride Month was born in 1990 as a day of celebration when the Americans with Disabilities Act (ADA) was signed into law. That year, Boston held the very first Disability Pride Day, and the first official celebration of Disability Pride Month was held in July 2015, marking the 25^th anniversary of the ADA. This has gradually spread, and now many countries across the world celebrate Disability Pride Month by holding parades and other festivities. We even have our own flag, which was designed by Ann Magill – it has a grey background and then different stripes in different colours to recognise different types of Disability and the solidarity between us.

 

But you’ll be forgiven for not knowing much about Disability Pride Month. I only found out about it a few years ago, and sadly it’s still very underrepresented. Very few brands and companies do anything to mark it, and the only real reason I found out about it was because I follow other Disabled creators on social media. There’s so much I could write about Disability Pride Month, but today I wanted to explore what feeling pride in my Disability means to me in the hope it might help others in a similar situation.

Ever since I found out about Disability Pride Month, I’ve been keen to join in with the awareness raising. I’ve posted on social media for the last few years about it, contacted numerous companies to ask them what they’re doing to mark it (and make their company more accessible) and spoken about it in general conversation with friends and family. But one thing that’s always troubled me is that I’ve never really been able to fully identify with feeling proud to be Disabled, and that felt like a pretty big issue!

 

I’m Disabled through chronic illness, and the illnesses that I have can be extremely debilitating. They leave me feeling, often, incredibly unwell, mean I spend a lot of time in hospital having invasive tests and treatments, have resulted in me missing out on huge parts of my life and stop me being able to do a lot of the ‘normal’ things that my peers are able to do. So, I think it’s understandable that I don’t feel particularly proud about being Disabled. I often feel angry, upset, frustrated – I spend so much time grieving the things I’ve lost – and most of the time, I find myself wishing I wasn’t Disabled. So, I’ve often felt like a bit of a hypocrite when I’ve spoken about Disability Pride and have worried that it’s yet another space that I don’t belong in.

 

But the more I’ve read about Disability Pride Month, and the more I’ve listened to other Disabled people talking about their experiences, the more I’ve realised that I do belong in this community and that my experiences are valid. Disability is such a complex thing, and no two Disabled people are going to have the same experiences or feelings. I think it’s so important to remember this and to make space for the stories of Disabled people from all backgrounds. I’ve gradually come to learn that it’s absolutely OK to have mixed feelings on your Disability, and that actually it’s pretty normal! I don’t think I follow one Disabled person that hasn’t, at some point, been frustrated by some element of their Disability. 

 

So, I’ve been trying to look at my place in Disability Pride Month a bit differently this year. I’m reassuring myself that I don’t have to be overwhelmingly positive about being Disabled if that’s not how I feel now. But there are still plenty of things related to my Disability that I can feel proud about. I can feel proud about taking up space wherever I am and remind myself that, as a Disabled person, I deserve to be able to access the world just as non-Disabled people can. I can stop apologising every time I ask for my needs to be met. I can stop feeling embarrassed every time I have to ask a shop to clear furniture and cleaning equipment out of their Disabled toilet or changing room just so I can use it. I can stop saying sorry for ‘getting in the way’ in my wheelchair. I can just be unapologetically me – Disability and all. 

 

This month is going to bring up a lot of different feelings for Disabled people and that’s OK. The whole point of this month is to amplify Disabled voices from all backgrounds so we can share our experiences, the struggles we face, our triumphs and what the world can do to make life more accessible for us. So please don’t feel like I felt, that if you’re not completely positive about being Disabled that you don’t belong in this community. Because every single Disabled person has a place in the Disabled community, and your thoughts and feelings around Disability Pride Month matter just as much as the next Disabled persons’ do. So, whether you use this month to shout about Disabled joy, talk about the struggles you face as a Disabled person or just sit quietly with your Disability and show yourself some TLC – there’s no right or wrong way to mark Disability Pride Month.

 

Have you heard of Disability Pride Month before? How do you like to mark it?

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I'm glad to say your test results are normal...

“I’m glad to say your test results are normal – I hope that reassures you.” This is a phrase that I’ve heard quite often recently, and I guess that most people would expect me to be happy to hear these words. After all, who wants their test results to come back showing an abnormality? Well, actually, I do. And I want to explain why.

 

Unless you’ve been ill with something that you’re struggling to get a diagnosis for, it probably seems like quite a strange concept to hope and pray for an abnormal test result. Most of the time people are wishing for the exact opposite – that their tests come back clear and show that nothing worrying is going on. But for a lot of people, particularly those with chronic illnesses, we are desperate to just get something back that points towards an answer.

 

For the last eighteen months, I’ve been having more problems with my health. I already have Ehlers-Danlos Syndrome and various associated conditions, so I’m no stranger to struggling to get a diagnosis (it took me twenty five years to finally get that diagnosis). I’d hoped that I was past that period of my life when I finally got my EDS diagnosis and started finding out what else was wrong with me. But unfortunately, that doesn’t seem to be the case, and for the last year and a half I’ve developed a whole array of new and interesting symptoms. Recurrent fevers, significant unintentional weight loss, severe night sweats, debilitating fatigue, strange rashes and skin lesions that will stay on my body for weeks at a time, joints that swell, turn red and feel burning hot, bleeding under my skin and changes to my nails to name but a few. This also seemed to coincide with my asthma getting worse. As you can probably tell, it hasn’t been much fun!

 

My GP has done various blood tests and my Rheumatologist has also sent me for tests like an ultrasound of my hands and a Nuclear Medicine Full Body Bone Scan. They suspected I might have something like Rheumatoid Arthritis, Lupus or even cancer. But most of my results have come back completely normal (and the ones that haven’t don’t seem to point to any particular diagnosis). Now, don’t get me wrong, it’s great that I don’t have these things. I keep being told that I don’t have this wrong with me and I don’t have that wrong with me. But what no-one is doing is telling me what is wrong with me!

 

I’ve lost count of how many times I’ve prayed and wished that a test would come back just showing something – anything! And how many times I’ve cried when I’ve had that letter telling me ‘I’m glad to say your test results were all normal. I hope that reassures you.’ Because to be blunt – no, it doesn’t reassure me anymore! For the last eighteen months, my body seems to have been slowly falling apart. I’ve spent more time in bed and on the sofa than I have up and about. I’ve lost so much of my independence – I can’t drive at the moment, I need help to have a shower, I can barely lift my nieces and nephews to give them a cuddle. I’m rarely able to leave the house, and when I manage to push myself to do something (because I need to try and look after my mental health as well) it takes me weeks to recover from it. Most of my time is spent sleeping, resting or feeling too unwell to do either of those things so just attempting to get comfortable. Something isn’t right – no healthy person gets these symptoms and spends their days like this. So to keep being told that there’s nothing wrong doesn’t make me feel reassured at all. It just makes me more frustrated.

 

It's not that I want something to be wrong with me when I hope for an abnormal test result. It’s that I already know something isn’t right with my body because of all of the things I’ve shared above – I just want to know what it is. I want a test to tell me that I’m not going completely mad and that there is something going on inside my body that’s giving me all these symptoms. I want a test to point us towards a diagnosis so that I actually have a name for what’s making me ill. Because, without a diagnosis, I’m currently not able to access any support, any treatment, any management for my symptoms or even any acknowledgement that I’m not well. And without a diagnosis, I have no hope of things getting better.

 

I felt a bit nervous about writing this post, because even after explaining why I want an abnormal test result, I still worry that people won’t understand and will think I’m just strange. But I wanted to share it because I know I’m not the only one to be going through this. So many people are in (or have been in) a similar boat, and it can be a really lonely boat to be in. Most medical professionals don’t seem to understand that getting normal tests back isn’t making us feel any better, so there’s no support from them to help us deal with not having a diagnosis. And healthy people don’t tend to understand either, so we can’t really talk to friends and family. So I wanted to share my experiences in the hope it will help others to feel less alone in what they’re going through, and to reassure you that it’s perfectly normal to want those answers. I can’t imagine anyone going through this would not want to know why. So please don’t beat yourself up for getting sad and frustrated about normal test results, even if no-one around you understands you. You’re not alone in this journey, and all I can say is keep fighting. I know from experience how important it is to listen to your gut, and if your body is trying to show you that something isn’t right, then chances are something isn’t right. I just hope that, one day soon, we will all get to those answers so we can get on with treating or managing our conditions and start living our lives again.

Is this something you can relate to? Are you currently trying to get a diagnosis and just keep getting normal test results back?

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Getting back to blogging after a long break

It’s hard to know how to start this post, as it’s been so long since I last shared anything on my blog! But one of my goals this year was to get back to blogging again, so that’s what I’m trying to do!

 

Blogging is where it all started for me. It’s been almost ten years since I shared my first post – I remember how nervous I felt pressing that publish button and putting myself out there. But, for some reason, I think I feel even more nervous now than I did back then! Perhaps it’s because I now already have an established blog, which I’ve taken so much time away from. Back then, I had an empty slate with no expectations of what I might share. Whereas now, I’ve got ten years behind me of posts – some good and some not so great. I’ve got a degree in Journalism. And I’m obviously a lot older too. It feels like I should be producing amazing content right from the get-go, which is probably just an expectation that I’ve put on myself to be honest! And it’s scary wondering if anyone will actually read my blog posts now. I never had a huge following before, but I was happy with the views and comments I was getting, and they seemed to be heading in the right direction. I feel like I’m starting from scratch again, but maybe that’s not a bad thing.

 

Don’t get me wrong, I’m really proud of my past blog. I put so much time and energy into developing it, curating posts, sharing photos, and building up my audience. But I think it’s also important to acknowledge that, with time and increasing age, I’m going to change and potentially become a different person to the person I was ten years ago. And with that change is going to come a different outlook, different ideas, and different life circumstances. So, it makes sense that my posts are probably going to look quite different to the ones in the past. And that’s OK. There’s nothing wrong with change. 

 

Speaking of change, if you have followed my blog for a while, you’ll probably notice some pretty big changes over here. Firstly, I’ve changed my blog name. I remember trying to come up with a name for my blog ten years ago – experimenting with words, names and attempting to come up with something unique that described what and who I was. I ended up naming it after my cat, Jaffa, who is sadly no longer with me. The name Ramblings of a Jaffa Cat never really made sense. I’d always get questions about what it meant and who was Jaffa - I guess at least it was a talking point! But when I came back to blogging this year, I decided I was finally ready for a rebrand. Again, I spent ages experimenting with words and names, trying to come up with something that would explain who I am and what I’m writing about. But nothing really stuck and everything I came up with just felt a bit gimmicky. So, in the end, I decided to just go with my name – after all, this blog is going to be about me and my life, so what better name to use than my own! Hopefully it’s not something I’ll grow out of either – it feels professional enough that I can use it in my journalistic work, but informal enough to fit with my personal blog too. I’ve included the tag line ‘Disability. Disney. Daily Life,’ just to give a brief explanation of what you might find on my blog, but hopefully it also leaves space for me to write posts about anything that feels important to me at the time. 

 

You may also notice that, because of this name change, that I have a new blog header! Once I decided that I no longer wanted to be Ramblings of a Jaffa Cat, I knew that I would obviously need a new header to match my new blog name. Thankfully, the lovely Helen, who did my last header, was only too happy to help me with this new one, and I’m so pleased with the result. I think it encapsulates everything I hope to talk about – Disability and chronic illness, Disney, and my daily life as a Disabled person. It’s also now possible to use it as a header across all my social media, such as my YouTube channel and Facebook page, giving me a bit more of a cohesive presence. I really like the fact that everything will now be linked together, rather than before, where every outlet was a bit different. 

 

So, what can you expect from my blog in the future? In all honesty, I’m still working that out in my head! I’m hoping to focus on life as a Disabled person, so posts about accessible days out, what to expect from certain hospital tests and appointments, sharing tips, hacks, and products that I’ve picked up to make life a bit easier and just generally what it’s like to live with a Disability and chronic illness. But I also want to talk about things that I love, so you’ll also see posts about one of my biggest loves – Disney! As well as things like beauty, fashion, travel, theatre, and so much more. I can’t really fit myself into a particular niche – there’s just too many different things I want to write about! But I think that’s OK – I guess you’d call it a lifestyle blog and that suits me just fine. 

 

I’m really looking forward to getting back to blogging again. I’ve missed writing so much and have felt really sad about abandoning the blog that started it all. I won’t be able to promise a specific schedule for my posts or say I’ll be sharing, say, two posts a week, as it’s going to completely depend on my health (which hasn’t been good over the last few years – maybe I’ll expand on what’s been going on in another post!) But I do want to make the commitment to just share on here as regularly as possible, so hopefully some of you will stick around to read it! I’m excited to get started!

What posts would you like to see from me now that I'm back to blogging?

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