Society vs Invisible Illness

“You’re still unmarried?”

“I wouldn’t want to become a parent late.”

“No one will want you.”

“Just settle, because there’s no time left.”

Settling. A term I have seen thrown around all my life, I never wanted to “settle” from a young age. In fact I may just have been the biggest dreamer I know. I would zone out and think about what it would be like to travel abroad, what it would be like skydiving, an adventure and to love my life. I was always creative, photographing with old cameras and writing poems. For the majority of my teens all I knew and felt was instability. I began pursuing a career, dreams, goals and ended up tying myself down to a corporate trap. The hunger to travel was there and so I traveled solo. I was backpacking around the world, I began working for myself and pursuing my dreams, working on my hobbies and so much more. I traveled to all 7 continents. I learned so much about myself, I conquered my fear of public speaking and battled anxiety and depression along the way, but nothing the gym couldn’t fix.

The day I began to feel my body deteriorate was the day I felt my dreams and aspirations died. I was alive, but not present. I was being advised but not listened to, my world collapsed, I lost my voice and lost out on what my peers appeared to be getting on with their lives.

After nearly a year I accepted my life had changed and I would need better coping mechanisms. There was a lot of self-discovery but also a feeling of solitude. Hey, I already mentioned that I traveled solo around the world, I take myself out to cafe’s all the time, I have no problem eating out alone, and I go to a lot of sporting events. Life is for living right? But every now and then there’s a feeling of will I ever meet the one.

When I first became sick I didn’t cope well with it, then I began to accept parts of it and started to read books and watch films/documentaries around illnesses. Some gave me hope, others gave me anxiety. I already felt a loss of independence, and even though I managed to begin rebuilding there was always the thought of being a burden. And as I grow older I feel like I lose hope in people in general. Don’t get me wrong there are some gems out there but there are some that have drained me and question my existence because of cultural and social norms. So as a person of faith, I believe that what’s written is written by The Best Planner. And if it means I continue solo in life then so be it, I just pray those who make sly comments can see the harm they do.

Mourning My Old Life

One morning, i'm waking up to pink skies at Antarctica, then i'm bed-ridden staring at my four walls feeling like a prisoner in my own body.

I grew up feeling like in order to be loved I needed to achieve, and if I wasn't then there was no value to my life. When I became sick my symptoms would mimic those of a Brain Tumour, Parkinson's Disease, MS and Epilepsy. You'd think with such severe symptoms that I would be taken seriously, no! A clear MRI scan and blood tests mean that you're going to have to fend for yourself. If you are part of the 1% that has a diagnosis given straight away then well done, but the majority of us will feel unheard.

I felt a lot of guilt for not feeling like myself, the go-getter, risk-taker and ambitious Shehla. I became the one who fell on the floor randomly, who was bed-ridden and could not see the light.

I was told to smile, ignore the pain and simply get on with life. A life I no longer felt I had. Some days I would hope I would no longer be on the planet because there was nothing left in me. For months I felt like I lived the same pain, day, conversations and hurt. I fell into self-piety, depression and experienced daily panic attacks. Living with a debilitating condition like FND (Functional Neurological Disorder) and chronic conditions such as M.E. & Fibromyalgia felt like they stripped me off my independence. My hobbies involved, travelling, hiking mountains, walking everywhere, flying my drone, photography and exercising.

I tried to fight these illnesses by ignoring them as every 'specialist' I came across had told me to. It was the wrong thing to do and made me worse. To this day I can't watch people run, especially marathons, because it was something I haven't managed to achieve again. I would travel every year, my longest trip was for 5 months and for a while all I did was travel to A&E and appointments. Nearly a year after diagnosis I accepted my life had changed. I began to explore and discover new ways of living, pacing and accepting no one was coming to save me.

What can I say, is my life perfect? No. Will it ever be? Most likely, no. But I have learned to accept that my life is different. I may have to lead this path solo, but it doesn't mean I can't be content with what I have and what I am working towards. I would spend the majority of my time outdoors, now I have to find new hobbies that keep me going. It's also the reason why I choose to work for myself, as I know explaining being 'ill' to others just drains me.

I hope one day I can make it to where I was before, but if not then I guess there is still a bit of acceptance to go.

Written by: Shehla

Trauma, Hope, Healing

Disclaimer:

I am no expert, all I can speak about are my experiences, my insights and my coping mechanisms. I’m sharing what I have found helpful along my own healing journey. I hope you can take something from this, even if it's only something small. So here goes.

Photo by Nik Shuliahin on Unsplash

Time

In life, we encounter many different situations and experiences, some happy, some sad and then some traumatic. When we experience something negative I believe we need time to heal ourselves. Sure, we can heal from the minor negative experiences quickly. The deeper and more traumatic experiences need to be given a proportionate amount of time of healing to the severity of the trauma.

So I'm sure the saying “Time is a healer” has been heard many times, but I have my own take on this and it's something that I have come to learn on my healing journey. I believe that just letting time pass and you will heal, is not the true meaning of that familiar saying. I believe that time alone does not heal, you must spend the time doing the things that are in line with your recovery, which at times can be very difficult. The level of difficulty does depend on the individual as we are all different, we all have our own coping mechanisms and life experiences that make us who we are.

Accountability

I also believe to heal we need to be real, honest and accountable, to ourselves and for ourselves. If we are in pain, we need to be real enough to see it, honest enough to accept it and accountable enough to change it. And accountability is very key, because when we are in pain sometimes we can not see how we came to this point. but once we are accountable for our actions and accountable for what we allow to happen to us, we can then make the change in ourselves to ensure we do not experience the same pain again.

But there are some of us in this world that have never been taught or given the tools to deal with sadness, depression, anxiety, low self esteem, low self worth and many negative emotions. Some do not have the ability to just let go. Childhood trauma and bad parenting can lead to issues in regulating and understanding one's emotions.

Forgiveness

When I started my healing journey I was told about healing, about forgiving yourself and self love. These terms seemed to be very empty, because I didn't look deeper into what these words meant, I was confused. I thought “Of course I forgive myself and I have love for myself”. But saying and thinking these things was not what is meant, I realised. Now I understand this as putting my emotional, physical and mental well being a priority, before anything else, setting clear and healthy boundaries without guilt or fear of being labelled selfish. Also by understanding the reasons why I never put myself first it actually helped forgive myself. I didn't realise that I was holding onto blame and shame, only when I spent time asking the right questions to myself. There are many other ways and coping mechanisms that I have tried, some have worked and some not. My advice is to find what works for you.

Creativity

I have always been a creative person so I have found any form of creativity helpful, that could be poetry, creating social media posts and other forms of writing have helped

I am still on this journey, I am still learning and if I am honest I do not believe anyone will be completely 100% healed. but i do believe that with the correct work on yourself and using the correct healthy coping mechanisms that work for you, life can be relatively pain free. I do also believe that you can still feel pain and upset when thinking about something you have healed and move on from. But the pain is a reminder of the lessons learned.

There is no set pattern, no set time, no perfect way or scientific formula to how you heal. I have not found this and should anyone find it, please let me know. Everyone's healing is different and what may work for one may not work for another. So do not compare yourself to anyone else.

Written by: Yaya Shah

Response to Daily Mail Article

It is a challenge to say the least having an invisible condition and disability. The worst thing is when society, medical teams and people around you don't believe you. The media have a role to play in this and it is deeply concerning that someone would go out of their way to call them liars.

Photo by Louis Galvez on Unsplash

To the person who wrote this article, all you have done is incite more hatred and imply people make their symptoms up. So here are some things you got wrong in your article.

Spoonies- This is a term for people who use the spoon theory, to identify how many spoons (energy) they have in a day. For example someone could have 12 spoons or 24, and it could take 3 spoons to have a shower, or 5 spoons to walk to a friends house or the supermarket. The term spoonies has nothing to do with making it up.

Recording yourself- This is often a method used to build evidence of how bad the symptoms are especially for those who don't understand, need extra proof and to help raise awareness to those who may lack knowledge. Hence why there may be a few people on TikTok who share their experiences.

There were minors used in that article and they are clearly ill and have symptoms, but the unfortunate thing is they were not approached for the article it was just something put together. Just because you can't see an illness nor understand the symptom doesn't give you the right to take away the pain of others.

I hope one day society can be kinder to one another, but those divisive articles do the very opposite.

Written by: Shehla Ali

***Views my own***

Grief, Fatherhood and Mental Health

My name is Yaya, I am 42 and I have struggled most of my life with my Mental Health. Feelings of low self esteem, low self worth, low confidence, fear, inadequacy have all played their parts in different times of my life. Depression and Anxiety have been frequent visitors, but I never broke as hard as I have in the last few years. My life has been filled with what “experts” would say are traumatic events, from a young age leading into adulthood. However, these last few years have held some deeper, more severely traumatic moments, which ultimately broke me.

These recent traumatic events have still not been healed fully and if I am honest, it has become apparent that there are still some unhealed traumas from younger years. I will not and can not tell you everything in this piece, it's just too much, but this is just some of it.

I am a father of two beautiful children, a boy and a girl. They are so precious and dear to me, I love them with every fibre of my being, they are my world, my purpose. I split with their mother at the beginning of 2020. The breakdown of my family unit and the change in the relationship with my children caused me such unimaginable pain that is only ever read about. I have struggled so badly and still am struggling.

Image credit: Yaya Shah

I was raised by a single mother. My mum raised 8 of us on her own in the 70’s, when racism was really bad, which has its own story that could be written about. I never knew my father and my father never had an active role in my upbringing. All I know is that he left my mum, lived 20 minutes away, remarried and had three kids. My mother tried her best to raise us Muslim, so we would be at the Mosque in London during all the particular times, and my father used to attend the same mosque, he used to walk straight passed me and my brothers, he never once spoke or stopped or showed love. This caused me to feel certain ways, which as a kid i never really quite understood and thinking about it, those feelings were never spoken about or discussed, in fact i can remember the feeling now. Anxious and scared to talk about my father and those feelings, so I must have buried them so deep. There is a reason for this, but again it's a story for another time.

Throughout life I had very bad coping mechanisms and not that many male role models to look up to. The ones I did have, had their own demons to deal with and were not the best role models if i am being honest. There were many issues and events that made me the way I was, parts were attributed to my “Daddy Issues” and I have spent many years looking into this.

I have spent hours on the internet researching, I have followed particular accounts on social media platforms, i have paid for talking therapy (Counselling), completed courses (e.g CBT) and much more. I had, what I realise now to be, a small understanding of the impact things from my childhood/youth have on me as an adult.

Photo by Matthew Henry on Unsplash

So I swore to myself (it was even a belief i held from a young age) if I had kids with someone I would never leave, no matter what. Because I never want anyone, let alone my own children to ever feel how I have done at times in my life. A fear of mine was passing down my issues down to my kids.

I wanted to have what I thought was a perfectly comfortable life: nice car, nice house, good job, wife, 2.4 kids, a couple of holidays a year and so on. That was something that I dreamed of for years as it was such a far reality to what I had growing up.

Well I achieved a lot over the years, made a lot of mistakes, learned a lot and had all that i dreamed of……. apart from being married.

2020 comes and I split with my partner, the woman that I loved, the mother of my children, the woman I intended to marry and spend the rest of my life with. After a few months small changes started to occur, small manipulations and games. As time went on, manipulations and games became worse, eventually triggering my mental health to spiral and there was more pressure applied by the person that once said they loved me. This along with certain other factors made the situation ideal for the relationship to change between me and my children.There have been too many instances of me trying to be an active father in their lives and has been stopped. I have been restricted to access and basic information. Decisions to do with my children have been taken from me and I have no say. There have been many things that have been stripped from me as a father. Most recently I was not even permitted the knowledge that my children had returned from a holiday overseas safely. I had to drive to my old house 2 days after they were supposed to have landed, only then did I find out that they had landed safely and were ok.

All of this and much more made me fall hard into a depression and was struggling so very badly, I was surviving on half a sandwich and 3 hours of sleep a night. Waking up in tears, spending all day in a low mood and more tears. Finally crying myself to sleep. I think one of the worst memories i have is waking up and my dying mother upset, telling me i was crying very loudly and badly in my sleep.

It all got too much, I recognised that something needed to change and this was not normal. So I started looking into depression in fathers after the breakdown of a family unit. I found many websites and studies that helped me understand what I was going through. I wish I noted all the sources of information that I found, so that I could now share it. However, tucked away in my notes on my phone an excerpt that I copied and pasted with a Web Link, the link takes you to an error page now. But the copied excerpt summed up alot,

We, as a society, need to understand that an involved fathers role as a parent is central to his physical and mental wellbeing. The loss of that role is devastating.

As Robert Fay, M.D. put it:

The typical non-custodial “father is also buffeted with feelings of grief, loss, anger and failure, he experiences increasing desperation as he now begins to appreciate the depth of the gulf (physical and psychological) that now exists and is widening between him and his children”

(“The Disenfranchised Father,” Advanced Paediatrics, 1989;36:407-29).

After spending that time looking at that particular area, I then started to research coping mechanisms and strategies. I suppose the start of my evolution and healing process.

Time has passed, it's now 2022. The mother of my children now has a boyfriend, which I am fine about and am actually happy for her. The kids have met him and he is good to them, again which is fine because my kids love me to pieces and I am always going to be their dad. But when I found out that my kids were spending time with her new boyfriend as a family unit, when I found out that the boyfriend is allowed to attend my daughter's birthday party but I am not and a few other things. I broke quite badly and had a really bad emotional episode. Depression felt at its worst, felt low, worthless, irrelevant, non-existent, not needed, not wanted. Felt like I was losing everything.

BUT something happened, i'm not quite sure how, but once i had calmed myself and my mind, I realised i'm not actually upset about what has happened, yes it's difficult but looking at the facts i stated above. Everything is as it should be. So all that happened was that event triggered the similar if not same emotions i felt when i was a kid………….about my father. Those feelings and that I was going through were unhealed emotions and traumas.

Once I realised this, I have had a better handle on the pain and the situation. So now I'm still trying to heal those traumas, it's something that will take time, patience and hard work.

It's a “Process” and a “Journey”...... I know they are cliched terms, I don't like using them, but it's true. lol. So I now have some strategies and processes that are helping me understand myself and my emotions. Slowly I know I will get there and I know that I'm doing the work to ensure my issues are not passed down to my kids.

Written by: Yaya Shah

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