May awareness days are overwhelming

May is a busy month as far as awareness days are concerned, and for me May awareness days are overwhelming. I have several chronic illnesses and all of the connected days to raise understanding about them have been chosen to fall this month. Lets get into it.

Before we begin, lets talk about why May awareness days are overwhelming for me, I love raising awareness so I should be excited. The problem is that it is all of my illness’ awareness is the same month, so I never know where to begin.

I only write four blog posts a month, so I cannot give them a dedicated post to each or concentrate my social media posts to just one illness. This means they have to share, and then I feel like I am not doing a good enough job, so I end up posting nothing.

This decision always ends up happening because I don’t know how to split things up or what information to share. Also, it kind of feels like there are so many awareness days now that it doesn’t have the same impact that it could have.

Honestly, I must admit I do suspect that a couple of my illnesses are connected in some way, so it makes sense to share the month. Like Long Covid and Myalgic Encephalomyelitis and even Fibromyalgia has some very similar symptoms and people have those illnesses in common.

It is overwhelming, and I rarely know what to do, in the past I have written posts similar to this, and I as always hope that is okay. So, lets take them one at a time…

Mental Health Awareness

This year, the conversation is based around community, and for me talking about mental health, blogging about and sharing my journey on YouTube led me to my community. Social media has always been my community, being in Facebook groups, forums, and all the ways to share gave me a community I couldn’t be a part of in person.

I think in this way, we are so lucky, though of course being so open online does have its downsides. I have learned to be careful over the years, but by being open and honest, good or bad is how I raise awareness every day and how I find my people.

There are of course places and groups where you can meet in person but having an anxiety disorder as well as physical disabilities make that difficult. I love that we have choices now, and that is something that we never had in the past and something I am glad has changed.

Growing up in the 1980’s and 90’s there was no support for children struggling and no understanding. People would constantly say I was just shy, and my parents would try to push me to do more but I couldn’t take it. I had very bad depression as a child too and suicidal thoughts through my late teens into my late 20s.

I have been bullied by so called ‘friends’ for sharing online about my depression and anxiety, and that held me back from sharing for a while. Now, I am just thankful I have found what works for me and that I can show through this blog and my YouTube videos that we are people doing our best.

Fibromyalgia Awareness

Fibromyalgia awareness day is always held on Florence Nightingale’s birthday, this is because so many people think it is a ‘new’ illness. I had one doctor tell me it isn’t real and is just a dumping illness, they tell us that because they don’t know what is wrong or think we are faking… I of course made an official complaint.

But, within the medical community, this illness is disbelieved, and I am not sure why I even had an ambulance crew refuse to take me when I was throwing up blood because of it! It is the one illness I wish I didn’t have because it is so ignored.

The idea of teaching and spreading more information about the history of the illness is wonderful and something I think could make such a difference. But it needs to be taught in medical and nursing schools as well as to medical professionals who are already qualified.

Fibromyalgia is a real illness, causing a lot of pain throughout the body, fatigue and cognition issues as well as sleep issues. I was diagnosed a long time ago and the one thing that I hope is that we would be monitored with a team to look after us as I have had nothing. I was diagnosed and discharged the same day, it was so scary to be left with a new diagnosis and nobody to ask or check in with. I hope that changes.

EDS and HSD Awareness

May is also Ehlers Danlos Syndrome and Hypermobility Spectrum Disorders awareness month. Most people have never heard of these illnesses, or they think it’s just having stretchy skin and joints for party tricks.

However, as the weather gets warmer, I struggle a lot with joints coming out of joint, which impacts sleeping and my ability to walk. Last week my hip was slightly wrong for a few days which then caused stress and pain in my other leg’s knee joint.

I am constantly in pain from my joints, and struggle with my neck in pain most days and struggle to get comfortable in bed as most pillows are not supportive enough. Again, most people think it is just being double jointed, and I struggle to explain how much this affects me more than that.

Problems swallowing and digesting food is a big problem for me as well as issues with my bowels as they are too stretchy and long. I would say this is the illness that causes me the most pain and daily issues that I cannot get people to take seriously.

Raising awareness, again both within the medical community and the population at large could make such a big difference. I hope by sharing my stories and experiences over the years has helped, I do my best.

Myalgic Encephalomyelitis Awareness

Myalgic Encephalomyelitis is known colloquially as chronic fatigue syndrome, and now thanks to the pandemic there is also Long Covid. Many of us hoped the government would look more into both illnesses after it, but no!

Too often we are unseen by society, those of us who can occasionally leave the house do our best to raise awareness. But there are too many people with these illnesses who are in hospitals, mental health facilities and shut away unable to cope with any stimulus at all.

We are the millions missing, our absence from society often feels like it makes it easier for medical professionals and society at large to ignore us. There is very little research and understanding into these neurological illnesses and for me symptom management is just as ignored.

Again, I have no medical team keeping an eye on me, and other than a couple of supplements that I take myself, I have nothing. I think with more awareness and more research that could change, and we would be able to be a part of society again.

Global Accessability Awareness

This year the focus for global accessibility awareness is for digital access and to make the online space more accessible to everyone. This is things like image descriptions and subtitles and making sure there is enough contrast to everyone can read text on websites etc.

I work hard both here on the blog, and on my YouTube channel to make them as accessible as possible. I have added image descriptions; I also manually edit the subtitles on all my videos and do my best to describe the things I am doing.

 These are all small things that honestly do not take much time or effort, and I wish more bigger youtubers would do the same. I have often asked bigger youtubers to just edit the autogenerated subtitles, so the timing is right, and all the words are correct.

But to be completely honest, the autogenerated subtitles on YouTube by now should be much more accurate. Also adding more descriptions to pictures etc should be things AI is used for not creating books to sell or making art.

I really hope that you can understand how May awareness days are overwhelming to me and that this post explains about each of them. I encourage you to not wait for a day or week to raise awareness but to take time to show through being seen that disabled people matter. No matter the propaganda against the disabled community from the government, we are not lazy fakers, we deserve to live and to be included.

Thank You xx

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