World Suicide Prevention Day
T/W Suicide and Mental Health.
Today collectively we are marking World Suicide Prevention Day. The conversation around mental health has become even more crucial since the pandemic as resources became more digital and remote, people were left in isolation and feeling cut off from the rest of the world.
Photo by Pablo Varela on Unsplash
Speaking about suicide does not make you weak or an attention seeker. Your feelings are valid and should not be crucified regardless of which community you are from.
Having external support can help break the stigma and help with alternative thinking and healthier coping mechanism.
Resources that can help provide support:
Samaritans: 116 123
jo@samaritans.org
SMS: Text SHOUT to 85258
How to Write Content for Spoonies
Spoonies, unless you are one, might not be a term you’ve heard of before. But that’s part of the problem. This guide aims to show you who spoonies are, what they need from your content, and how you can make your website a better experience for them.
Photo by John Schnobrich on Unsplash
It’s not forking hard to do. It’s just a few little things that make spoonies’ lives easier, and ultimately, make your products more likely to sell.
What does spoony mean?
A spoony is someone who suffers from a chronic condition that can’t be seen. The term was first coined by the blogger Christine Miserandino, who was trying to explain to a friend what it was like living with lupus. She described it like this:
You start the day with a series of spoons. Every time you do something that requires any effort, even seemingly insignificant stuff like watching the TV or scrolling on your phone, you lose one of your spoons. If you use up all your spoons, you have no spoons in reserve, so you have to go into your next day’s supply of spoons. That means the next day you’ll be bedridden, all out of spoons with which to perform even the most basic activities.
Spoonies have to make a decision: which tasks are worth using spoons for, and which ones can be left?
When it comes to your content, this matters.
How can content impact spoonies?
As a general rule, all web content should do three things: entice, inform and engage. That’s the ideal journey you want any potential customer to go on, getting them excited, showing them what you can do, and getting them through the purchase journey as quickly as possible.
For spoonies, this is even more important.
Long content can cause fatigue
Fatigue can quickly set in when reading long content. We’ve all found recipes online that require us to read the author’s life story before getting to the ingredients, but imagine doing this if your body is feeling tired already.
You’re never going to bake that cake, and the world is a better place with more cake in it.
Complex forms can take too long
It’s never fun filling in a form. Your name, your address, your favourite colour, your dog’s last dream, it can all seem to take too long when all you really want to do is order a product or sign up for a service.
Complex forms can easily trigger fatigue, preventing users from ever completing their action.
Heavy text can cause headaches or blurred vision
Big headlines, overuse of bold, or densely written content without the right spacing can bring on headaches or blurred vision. This on its own could be enough to make someone leave your website, costing you any money they might have spent.
A lack of paragraphs can become overwhelming
Paragraphs and line spacing makes text more readable for everyone, but if you have a chronic illness, they’re essential. Big blocks of text that aren’t broken up just look too much, and that’s before you even start reading them.
70% of the internet doesn’t cater for impaired user
Spoonies aren’t alone in their struggle for accessible content. A shocking 70% of all internet content is inaccessible for impaired users, meaning over 1.2 billion people across the world might be unable to access, read or engage with websites.
In the UK alone, this costs businesses around £17.1 billion every year in what’s called ‘the click-away pound’. This is the amount lost by people clicking off a website when it doesn’t meet their accessibility needs.
There are a few repeat offenders when it comes to inaccessible content, such as:
Colour contrast
Whenever you put text on a coloured background, the contrast needs to be high enough for the text to be readable. Too low and the words will go missing, or at best cause a severe headache.
Undescriptive links and buttons
A descriptive link or button tells you what clicking it will achieve. It makes sense out of context, meaning anyone using a screen reader won’t need to read all the content around it to understand it.
Undescriptive links and buttons often say things like ‘read more’ or ‘click here’. Without the context, these mean nothing.
No alt text on images
If you can’t see an image, alt text will tell your screen reader what the image depicts. Images without this may as well not be there at all as fair as impaired users are concerned.
Complex navigation
Have you ever looked at a menu in a restaurant and been overwhelmed by the amount of choice? Website navigation can do the same thing. If you have too many options to click on, you won’t know which one is the most important, and you might click on nothing at all.
Empty form labels
A form label, or box, should tell you what information to put in it. If this is missing, assistive technology won’t tell you how to fill it in, which could make ordering a product impossible.
Fast timeouts
Many websites will time you out of an order after a certain amount of time, making you start from the very beginning. If it naturally takes you longer to perform actions online, timeouts could become your worst enemy.
Pictured: Ash Billinghay
How to make your content spoony friendly
You don’t have to make any complicated technical changes to make your content work for spoonies - you just need to write nice. Good content that works for non-spoonies will also work for spoonies, so follow the same tips to ensure you’re ruling no-one out.
Use clear headings
Spoonies will get fatigued by reading too much content, so make things easier for them. Clear headings and subheadings mean people can scroll to the content they need without having to read the rest.
Break content up
Big, lengthy paragraphs aren’t easy to read. Instead, use bullet points, lists or short sections of texts. Break content up into smaller chunks, and people will be much more likely to read to the end.
Make actions clear
What do you want your audience to do? Make it obvious. If you want them to buy a hat, make your button say ‘buy a hat’. If you want them to read a blog, make your link say ‘read our blog about buying hats’. Options that aren’t about hats are available.
Make buttons bigger
As fatigue sets in, muscles will weaken and it might become harder to keep your cursor in one place. Make your buttons and navigation menus big enough for shaky hands to click.
Look at your tab order
For people who can’t use a mouse, they might use the tab key to navigate a site. This should take them from left to right, top to bottom, just like we’re taught to read as children. Anything that is clickable by a mouse should also be clickable by the tab key.
Use clear language
Voice recognition software uses plain English to help a user get around. Complicated language or industry jargon might not be picked up by it, which could lead to a lost customer.
Want more helpful support for spoony living?
We offer a range of helpful blogs for chronic fatigue, full of advice on how to talk about your condition and live with it. We also provide some great wellness products to ease any muscle fatigue.
Spoony life has its challenges, but there are ways we can make it easier.
Words: Ash Billinghay
What is FND?
***Disclaimer*** I am not a medical specialist nor am I an expert in FND I just happen to experience it. Please always seek medical attention.
You may have never heard of FND also known as Functional Neurological Disorder. It is a diagnosis given to people who have a problem with how their brain and nervous system send out signals.
The neurological condition mimics the symptoms of the following diseases:
Parkinson’s’ Disease
Chronic Fatigue
Brain Tumour
Epilepsy
MS
Photo by Robina Weermeijer on Unsplash
However, as tests don’t appear positive on MRI scans or any other brain imaging patients are often dismissed and told to go home with a link to a website. And historically patients were referred to CBT and graded therapy exercises.
As the condition is medically unexplained it can leave people feeling ‘abandoned’ and left to figure it out for themselves.
I managed to make a 70% recovery through research and lots of trial and error. We have compiled a resources page you can use for more information. Please always seek medical attention with your symptoms and seek advice from medical specialists.
A painful post to write 'Are you making it up?'
Before we begin I just want to share a disclaimer, I am by no means a medical specialist, neurologist, physiotherapist, or neurophysicist. I have however had the painful process of living through Functional Neurological Disorder/Fibromyalgia.
I experience pain every day and navigate my way through an invisible illness. I've tried not to let it overcome me but some days are better than others.
I’ve had comments like “But how can you still be ill, it’s been a long time”, “why not sleep earlier than if you are tired”, “Are you making it up.”
It has been a tough time and even though About M.E. gives me the purpose I do have to look at the traumatic experiences I faced. I don’t always switch off but I am so grateful for the support I have faced from strangers.
The inspiration came through the day I began recovering. I no longer experienced involuntary movements, NEAD, and started to advocate for others who were diagnosed with FND. The fact that some ‘specialists’ become excited by the term functional because it won’t technically cause any structural damage can be disheartening. You experience the same pain but are made to feel like you should be grateful.
So where do you go for support? I joined groups that know what it’s like to have FND and Fibromyalgia. You can see more resources here. But please do always seek medical attention.
There’s not enough information about FND across the internet or enough support. However, I have found people to talk to in the US, Australia and also started a group in England (predominantly Sheffield) for support. Sometimes it’s just a case of “Yes me too” when you talk about how you’ve been treated.
Graded exercises and CBT to be scrapped for M.E patients
We welcomed the news that M.E/Chronic Fatigue patients will no longer be referred to CBT or asked to take on graded exercises. This has been the 'go-to' cure and treatment but has been scrapped as campaigned by M.E Action. We welcome the news that although CBT can help and some forms of exercise it can also have detrimental consequences.
The full article can be found here:
https://www.theguardian.com/society/2021/oct/29/health-watchdog-nice-publishes-delayed-me-guidance
"No one believes me..." Why a diagnosis is important
If you’ve traveled to this post you’ll probably have some sort of interest in chronic/invisible illnesses. It’s been a rollercoaster for me from experiencing symptoms, having people, believe me, to actually getting a diagnosis. So why is it important?
When I first began experiencing symptoms of fatigue, I had my blood taken and the results were to take medication, to have my iron and vitamin d levels increase.
I then continued experiencing low moods and was referred to CBT and when the first National Lockdown began I was discharged because apparently, I would be fine as I had a new contract.
I did not have a routine during the lockdown. Some days I would be awake for 22hours and then experience drop attacks for several days. I experienced NEAD, brain fog, experienced fatigue, involuntary movements as well as anxiety, depression, and then I just simply felt my heart go numb.
I have had back pain for over 18-months and when my MRI scan was ‘clear’, I was told to go home and be more positive with a website link.
This obviously has not worked for me, or anyone else I know who has FND or Fibromyalgia. I’ve lived off savings and haven’t been taken seriously by most medical specialists. Once I fought for my diagnosis and also a diagnosis closest to my FND symptoms I have been able to have more referrals.
Once you gain a diagnosis, it’s easier for most people and I say this lightly as I know there are still many people who are awaiting treatment, there is a better chance of getting referrals/treatments if there is a diagnosis.
However, I know from personal experience and hearing from others that having the FND diagnosis has almost made people think any visit they have to A&E is not serious.
I guess what I'm trying to say is, having a clear diagnosis rather than “it’s all in your head”, “it’s psychological”, “it’s not that bad.”
As there is limited information worldwide about FND and most chronic conditions, people can only go with the lack of information they have. I am learning to accept that there are people who can only do their best.
Please note if you are unhappy with your diagnosis, you are entitled to a second opinion, change your medical practice, and can complain via PALs.
Written by: Shehla Ali
Everything You Need to Know about The Spoon Theory
Most people don’t think twice about the energy it takes to shower, clean, get dressed, or drive to work. Most people can go to the gym in the morning and still have the energy to make dinner in the evening. Most people can make plans and keep them.
However, when you have a chronic illness, you’re not most people.
What is The Spoon Theory?
In a blog titled “The Spoon Theory,” Christine Miserandino narrates how she demonstrated to her friend what it’s like to have lupus. While chatting at a diner, Miserandino handed her friend 12 spoons. She told her the spoons represented units of energy and asked her to describe her daily activities.
Photo by Anna Kumpan on Unsplash
As her friend went through her tasks, she took away a spoon for activities like showering, getting dressed with painful joints, standing on public transportation. Skipping lunch, she explained, would cost a spoon, too. When the spoons were gone, it meant she expended all the energy for the day.
Spoonies Unite
Miserandino’s blog took fire over social media, empowering other people with chronic illnesses with a new way to quantify their fatigue. Now there are legions of “spoonies” creating communities all over the internet to discuss how best to plan their days around the number of spoons they have available.
Counting Your Spoons
How many spoons does a person wake up with, and how many does it take to perform basic tasks? That depends on the person, the day, and the disease. When a disease is flaring, a shower might take ten spoons; if a person is on medication and having a good day, it may not even take a full spoon.
Most people with chronic conditions plan how to spend their spoons in advance. “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared,” Miserandino shares.
Written by: Kiki Dyemi
"I continue to build my writing business even when my hands refuse to move..."
It all begins with an idea.
I cringed when I wrote this click-bait title, but I knew I must write it the way it is. Just so that you know there is a way to continue working even when your illness renders you immobile or at least difficult to drag yourself through even the basic chores of the day.
Getting on medication has to be the first step
I have had rheumatoid arthritis (RA) since I was 26. This August I turned 44.
I went for a clinical diagnosis and started medication in 2016 when getting up from the chair without crying out in pain became impossible. By that time I also had a frozen shoulder (my writing arm) and spondylitis. I couldn’t sit and type on my writing desk for more than an hour a day.
Getting on medication to manage my pain changed my life, but that’s a story for another day. Today I want to talk about how I managed to build my freelance writing business with a chronic illness that renders my arms too painful and frozen at least three months of the year.
Understand how your body works
I have managed to work the only way I know – using time management techniques. First of all, I decided to find out my working rhythm. For this, I meticulously tracked my time for almost a year. And this is the information I collected:
Total number of hours I could write every day
Total time I could devote to non-writing work that was essential to building the business
I am most productive on hot sunny dry days
Cold winter months are the least productive for me
Schedule your day meticulously
Armed with information about my working capacity, here is how I schedule my day:
Divide my day into client work and non-paying work.
I have identified the hours of the day when I can focus completely on my work and devote those to writing.
I have these 5 non-negotiables for each working day - exercise, journal, client work, marketing, and pitching.
Keep your momentum going and skills sharpened
After so many years of illness, I know the pattern of most of my days and schedule myself accordingly. If the day is going to be hot and sunny, I schedule a couple of hours extra. Winter months from November to January are my worst months, my aim is to just reach the minimum income level.
But this does not mean I stop writing or learning. Otherwise, I will not be able to pick up speed after the lean period is over.
I devote those leisurely hours spent under the sun to nourish my health by writing books. Or take up other writing projects so that I don’t fall out of the habit of writing. For instance, this year I have launched a newsletter which will continue till February. Then I’ll take a break and start season 2 sometime in September or October when the weather changes again.
Final thoughts
When you suffer from an illness that renders you immobile, you need to get smart about when you get done what. What I have shared about my journey applies not only to writers but to other creatives as well. Of course, I do realise that your severity of symptoms or condition may be different from mine. But that does not mean you cannot start trying out the strategy I have used. Maybe start with deciding how much time you can devote to working and take it from there.
"I went through a whole year of not drawing because my hands shook too much"
It all begins with an idea.
When I began About M.E. I was very determined to hire and work with more people with chronic/invisible illnesses and disabilities. It’s been a learning curve, to say the least, but I am so proud to have found Sirius O'Reilly. Sirius was recommended to me and diagnosed with FND as well as Autism and is behind the About M.E. logo.
How long have you been a graphic designer?
I have branched more into Graphic Design since my Foundation Diploma in Art and Design 2016, where I focused more on digital art. I have been illustrating as a hobbyist since I was 6, and have had the pleasure in the past few years to produce Graphical Designs for commercial businesses.
What inspired you to do it?
Graphic Design is a wonderful combination of artistic expression and practical function. I was first given the opportunity to design a logo by a childhood friend, who needed someone who was 'good at art'. They remembered my passion for art, so they got in touch, and I was happy to use my skills to help.
How do you overcome a creative block?
I switch up my medium. I give a new crochet project a go or spend time writing, I channel my creativity in a different way to think about ideas differently, eventually, I'll get back on track!
What advice would you give to someone who has an illness/disability and how to follow their passion?
Be you, do what makes you happy. No one can put a limit on your capabilities, only you can decide that for yourself. The only person you should compare yourself to is your past self, and always your past self will be proud of how far you have come.
I went through a whole year of not drawing because my hands shook too much with an Essential Tremor to draw lines straight, so I watched videos, brushed up on new ideas and skills, and spent my creativity writing/typing. But always keeping those new ideas in my head. When I felt ready to pick up the pen again I had material to focus on, I started small, but most importantly I enjoyed what I was doing.
Written by: Sirius O’Reilly
Work With US
It all begins with an idea.
Hello,
Thank you for stopping by to About M.E. I wanted to share my goals and vision with you.
I want to be able to hire and work with people with disabilities, invisible illnesses, chronic warriors as well as awesome freelancers.
So if you have any of the following skills please share your portfolio, your hourly/day rate, and availability to: careers@aboutme.group
Copywriters write monthly blog posts regarding About M.E. progress and internal news.
Guest writers to share their experiences about living with an invisible/chronic illness and disability.
Social Media Manager
App Developer (Android and iOS)
Work Experience - we will match projects to where you want to be in your future role
Anything you think we are missing? If you are selling products or trying to navigate through an invisible illness we are interested in hearing from you, just let us know what your skillset is or where you would like to be.
Introduction
It all begins with an idea.
***Disclaimer*** I am not a medical professional or a pain management specialist.
What is About M.E.
Hello, and welcome to About M.E. you may have seen a LinkedIn post, TikTok video or Instagram story related to this new adventure. I’m here to introduce you to raising awareness about invisible illnesses. In 2020 during the pandemic I was diagnosed with something called FND (Functional Neurological Disorder).
It was a diagnosis and a link to a website and I was told I would be fine within a few weeks and to just simply get on with it. My Neurologist said I just needed to be more positive along with other “specialists”.
Accepting a long-term condition
Fast forward to January 2021, I realised no one was coming to save me, nor giving me a magical cure, and I was sick of feeling sorry for myself. At this point I wanted to find what worked for me and how I could best manage my symptoms and pain.
I found support within communities who were facing similar experiences, and had been exploring different methods of coping with pain. It was a challenging experience and I faced many personal and professional battles but here we are today.
Managing Pain
I wanted to create something that could help fellow chronic pain sufferers and to what has helped me make a 70% recovery.
So About M.E. is a one-stop-shop to help fellow chronic warriors with pain management, a clothing line to support with daily prejudice we may face, monthly self-care boxes, an app to manage/track your pain.
So thank you for your support so far, whether I know you or not.
Thank you,