Making Invisible Conditions Visible

Invisible illnesses refer to a group of conditions that are not immediately apparent to others, often because there are not usually visible physical symptoms. Some examples of invisible illnesses include chronic fatigue syndrome (CFS), fibromyalgia, and myalgic encephalomyelitis (ME), as well as various mental health conditions such as depression, anxiety, and post-traumatic stress disorder (PTSD).

Image Credit: FreePik

CFS, also known as myalgic encephalomyelitis (ME), is a complex and debilitating illness characterized by extreme fatigue that does not improve with rest, as well as other symptoms such as pain, cognitive difficulties, and sleep disturbances. The cause of CFS/ME is not fully understood, and there is no cure (allegedly). Treatment is usually focused on managing symptoms and improving quality of life.

Fibromyalgia is a chronic pain condition that is often accompanied by fatigue, sleep disturbances, and cognitive difficulties. It is characterized by widespread pain throughout the body, and is believed to be caused by abnormalities in the way the brain and nervous system process pain signals. Like CFS/ME, there is no cure for fibromyalgia, and treatment typically focuses on managing symptoms.

Myalgic encephalomyelitis (ME) is a term that is sometimes used interchangeably with CFS, although some researchers and patient advocacy groups use the term ME to emphasize the neurological symptoms and abnormalities that have been observed in some patients with the condition.

Mental health conditions are also considered invisible illnesses, as they often do not have physical symptoms that are visible to others. However, they can have a profound impact on a person's well-being and quality of life. Mental health conditions such as depression, anxiety, and PTSD can be caused by a variety of factors, including genetics, environment, and life experiences. Treatment for mental health conditions may include therapy, medication, or a combination of both.

Mental Health Awareness Week

Mental Health Awareness Week is an important opportunity to raise awareness about mental health and the impact it can have on individuals, families, and communities. One aspect of mental health that is often overlooked is invisible illnesses, which can include a range of conditions that are not immediately visible to others, such as depression, anxiety, and other mood disorders.

Image Credit: FreePik by Vecstock

Invisible illnesses can have a significant impact on individuals in the workplace, and it's important for businesses to create a supportive and understanding working environment for those who may be struggling with their mental health. This can include:

1. Raising awareness:

Businesses can take steps to educate their employees about mental health and invisible illnesses, including the signs and symptoms to look out for and how to support colleagues who may be struggling.

2. Providing resources:

Offering access to mental health resources, such as employee assistance programs, can help individuals get the support they need to manage their mental health.

3. Encouraging open communication:

Creating a workplace culture where employees feel comfortable talking openly about their mental health can help to reduce stigma and encourage individuals to seek help when they need it.

4. Offering flexibility:

Providing flexible working arrangements, such as working from home or flexible hours, can help individuals to manage their mental health and reduce stress.

5. Prioritizing mental health:

Making mental health a priority within the workplace can send a powerful message to employees that their well-being is valued and supported.

Overall, creating a supportive and understanding working environment for individuals with invisible illnesses can help to promote positive mental health and well-being for all employees. Mental Health Awareness Week is an important reminder of the need to prioritize mental health and work together to support those who may be struggling.

Comparison and Invisible Conditions

Comparing oneself to others can be a difficult and emotional challenge when facing long-term illnesses.

It's important to remember that everyone's journey is unique and that comparing oneself to others can lead to negative feelings such as jealousy, self-doubt, and low self-esteem. It's important to focus on your own progress and growth, rather than constantly comparing yourself to others. Whether that is making it out of bed, retraining yourself to walk again, or making a meal. I know how much of a challenge it can be especially when you receive reminders of what life was like a few years ago. There were so many hobbies I took for granted, but also the simple things like walking out of my house. My activities became trips to A&E and fighting for treatment from Neurology.

Image Credit: Midjourney 5.2

Instead, now I try to focus on my own personal goals and accomplishments, and celebrate successes no matter how small they may seem.It's no surprise I am a coffee-lover, a simple trip to a nearby coffee shop with a book can do wonders for me. Taking pictures of the moon from my window keeps the dust off my camera.

I even unfollowed a lot of accounts around travelling and fitness as they were reminders of what I was unable to do. Watching people carry out hobbies I once enjoyed became a huge trigger. So instead of fighting that feeling I eventually allowed myself to mourn my identity.

And with all of this, there was a lack of support. So try and surround yourself with supportive people, and consider seeking professional help or joining a support group for individuals facing similar challenges. I know a lot of people didn't get what I was experiencing, it wasn't talked about much.

Remember, everyone has their own journey, and it's important to focus on your own progress rather than comparing yourself to other, as I tell myself every other day.

ChatGPT Apology About Invisible Illnesses

I ask ChatGPT to help me with writing posts about invisible illnesses especially when I am bed-bound. Today it couldn't but wrote this instead.

'As an AI language model, I may not be able to fully empathize with your personal experiences, but I understand that advocating for invisible illnesses can be exhausting and challenging. It is important to prioritize self-care and recognize when you need to take a break from advocating.

Image Credit: FreePik Midjourney 5.2

It is also essential to find a support system and seek out resources to help you advocate effectively. This can include connecting with advocacy groups, finding allies who understand your experiences, and using social media and other platforms to raise awareness about invisible illnesses.

Remember that even small actions can make a big difference, and it is okay to take breaks and prioritize your own well-being. Keep in mind that change takes time, and every effort you make towards advocacy is important and valuable.'

Not everyone has been so kind.

ChatGPT & My Misdiagnosis

I asked ChatGPT why I was misdiagnosed, here is what it said.

The misdiagnosis of illnesses in women of colour as opposed to men around the world can be attributed to various complex factors, including social, cultural, and systemic biases that intersect and contribute to healthcare disparities.

Racial and Gender Bias:

Photo by Martha Dominguez de Gouveia on Unsplash

There is evidence to suggest that racial and gender bias can influence medical decision-making. Women of colour, especially those from marginalized communities, may face stereotypes and biases from healthcare providers, leading to a lack of trust and a reduced quality of care. These biases may include assumptions about pain tolerance, cultural norms, language barriers, and lifestyle choices, which can affect diagnosis and treatment decisions.

Lack of Representation in Medical Research:

Medical research has historically focused on populations that are predominantly white and male. This lack of representation of diverse populations, including women of colour, in clinical trials and research studies can result in gaps in understanding of how diseases manifest and progress in different populations. As a result, diagnostic criteria and treatment guidelines may not adequately account for the unique experiences and manifestations of diseases in women of colour, leading to misdiagnosis or delayed diagnosis.

Socioeconomic Factors:

Socioeconomic factors, such as limited access to healthcare, insurance coverage, and economic disparities, can affect the quality of care received by women of colour. These factors can contribute to delays in seeking medical care, inadequate access to diagnostic tests and screenings, and limited options for treatment, which can impact accurate diagnosis and management of illnesses.

Intersectionality:

The intersectionality of race, gender, and other identities can compound the biases and disparities experienced by women of colour. Discrimination and bias based on both race and gender can result in unique challenges for women of colour in healthcare settings, leading to misdiagnosis or underdiagnosis of illnesses.

Cultural Differences:

Cultural differences in the expression of symptoms and health-seeking behaviours can also play a role in misdiagnosis. Women of colour may come from diverse cultural backgrounds with different norms around health, illness, and healthcare utilization. Language barriers, communication styles, and cultural beliefs about health and illness can impact accurate diagnosis and treatment recommendations.

It's important to note that these factors are complex and interconnected, and addressing them requires a multifaceted approach that includes increasing diversity in healthcare representation, improving cultural competency among healthcare providers, promoting equitable access to healthcare, and addressing systemic biases in medical research and clinical practice. It's crucial to advocate for equitable and inclusive healthcare practices that recognize and address the unique challenges faced by women of colour in the diagnosis and management of illnesses.

Written by: ChatGPT

Starting Again ;

***Trigger Warning*** Mental Health

Being here is enough. But as each day goes by I feel more anxious before going to sleep and then numb throughout the day. I lost my battle 3 years ago; I am grateful to still be here. Having recently undergone treatment for my brain and nervous system, I thought I had accepted it. But there’s still a part of me that lays there and wonders why me, how long will this last, what’s the point. I spent over a year recovering, healing, getting therapy and through a lot of trial and error found what worked for me, at the time. I find myself questioning my existence, again. A place that was painful, numbing and debilitating. I find myself becoming anxious again about hitting rock bottom and losing my mental health battle again.

Image Credit: Fairytail Photography: Sydney Sims

When I first began experiencing symptoms, there was a lot of stigma and virtue signaling, blame and shame. I silenced my pain, I suppressed everything and made my symptoms worse. Over time I learned that no one was coming to save me, I had to do what was right for me. The journey was painful but necessary. As I continue with treatment for my brain, after three years it does not get easier. It's something I have learned to cope with. There are days where my energy increases and other days I am bed-ridden again. I went through what I would now call a phase where my symptoms were significantly reduced, that was short lived.

Be kind they say, I did nothing but that during 2020 when I was experiencing symptoms and eventually diagnosed. However, starting again made me feel like a bit of a failure. I felt like I had let everyone down by becoming sick. I was often blamed and shamed for having ‘something wrong’ with me. I know now it wasn’t my fault, it was going to happen. I also don’t see my illnesses as a holiday nor a time to be enjoying myself. Most of the time I am in pain. It’s pain that is hardly visible, it’s often hidden. I’ve tried to bring my hobbies home, I have a podcast where I share my journey as well as others. But it can feel overwhelming at times and not being able to measure the impact can make me feel hopeless. However, I have had to remind myself constantly that I have had to re-learn a lot. From walking in a straight line, not dropping on the floor randomly, it heals my brain and nervous system and so on. I cut a lot out of my life, I was also cut off but I now know it was for the best. I now focus on what I can control, here and what my future may look like. And it can all change, due to so many factors and it does not have to be a bad life. My ambition was a huge part of me, but sometimes it plays a part in welcoming the demons. Nothing is perfect, my brain and nervous system will tell you that.

Written by: Shehla Ali

Can Chronic Illnesses Ever Get Better?

Trigger Warning: Mental Health, Symptoms of Illnesses.

I know I am capable of love, I know that. But I feel like I am dissolving. I know this too shall pass, I know I have made progress with my health. Yet, I continue to battle everyday and a part of me still believes I will get better. Having spoken with my specialist about my brain activity I was encouraged to think about alternative ways of living. I go on social media and hear about ‘high energy’, ‘masculine energy’, ‘feminine energy’ and I simply lack energy. I look at my four walls when I relapse, I have unwelcome demons on my mind and every minor task to those who are able becomes my Everest.

I suppressed emotions as a child and continued with that method throughout my life. When my body began mimicking brain tumour symptoms my body gave up, and so did my mental health. And the more I think about my future I think is it going to be like this forever? Now I am a person of Faith, and I do believe that what’s meant to be is meant to be. I sit in a crowded room and feel invisible, sometimes the chronic pain is what makes me feel anything at all. And if all I am worth is pain surely that cannot be my purpose. I mean when I first received press coverage there was a Karen within a few minutes telling me publicly on Twitter that I couldn’t and shouldn’t make money from raising awareness. This person I believe sells mental health courses, but anyway. I am not naive enough to ignore how the world works and how it benefits one community more than the other. But this doesn’t exclude the way I feel sometimes, one of my favourite quotes was: “You make money to be seen, I make money to disappear.”-Quote by Unknown.

My voice has helped me and I do my best to amplify my voice, and you have to be careful in a society that is designed to fail you where you share your vulnerabilities. I am at a stage where I just don’t tolerate racism, the part where I am told I look healthy so should be silenced. Not every troll or hater deserves time or energy. And I am still learning to pace but now and again I can’t help thinking about how the old Shehla would have completed certain tasks and where I would be. No one really understands, people fade away, they ghost and sometimes it's easier to stay in mu bubble than venture out because I know it's all temporary. There’s no guarantee that my life would have been any better. I guess I just have to remember that.

I exist, I am here.

Written by: Shehla Ali

Bringing Hobbies Home

Those Damn Old Hobbies

I’m not the most interesting person. Scratch that, I have hobbies, had hobbies, i’m salvaging my old hobbies rebuilding myself, my brain and nervous system. The other version of me, say pre-diagnosis FND, Fibromyalgia and M.E. I had a very active life and it was filled with creativity. Photography, travelling solo, flying drones, writing, producing content and well everything else. I overdid it, and continued to over-work on my green days.

That glimmer of hope I have now and again where I feel less pain than the night before I try to continue with hobbies. I won’t be running 5K-9K like I used to, in fact I can run about 7 minutes in total without falling apart. I do MMA/Traditional Ju-Jitsu, boxing and walking and all these come with a compromise in energy and reduced activity the next few days. I work for myself therefore I have built a schedule around my energy.

However, what I have also tried to do is once I have been in survival mode for so long and my feet touch the ground, I am able to walk in a straight line and my body is behaving and my brain isn’t battling with my nervous system. I can enjoy things again.

Adjusting my Hobbies

I used to love photography, I would travel solo around the world, I would hike across nature and photograph the beauty of this world. When I was bed-ridden my cameras caught dust and I had to move them from my room because I just couldn’t look at them. It was a constant reminder of what I had lost and I wasn’t able to mourn immediately.

I did start to use my camera when I began to leave the house again with a friend and forced myself to take pictures. I went from photographing glaciers, icebergs, sunrises and sunsets to a random duck at the local park. I felt nothing, and I was clearly in a dark place. When I began to recover and rebuild I started to implement my hobbies in my home, predominantly in my room. There were a lot of book purchases, so if I was bed-bound again or relapsed then I could pick up a book. I began using my camera again. I would capture the moon and stars, from early hours in the morning before the morning prayer to sunsets. I missed stargazing so much, but decided to capture the stars from my garden. It wasn’t exactly Machu Picchu, but it was still a moment to photograph. An opportunity to dust off the camera and hone those skills I had once developed.

So even though I have had a lot stripped from me, I have slowly begun to implement my hobbies back in my life. No it’s not the same, but I know my life won’t be.

Written by: Shehla Ali

50 Episodes of A Spoonful of Recovery

I began A Spoonful of Recovery when I was bed-bound and just about accepting my long-term illnesses. I recorded on my phone how I felt being diagnosed, an episode later I mentioned my goals, and now i've hit 50 episodes. https://anchor.fm/about-me-group

One of the common things about having a chronic/invisible illness is how isolating and lonely it can be. Your life can become pain, surviving pain and how to ignore the pain and explain the pain. I felt exhausted and still do at times constantly having to prove how my life has changed and the way I have to plan around my energy. And how one day I may be ok and the next day I may struggle to move.

After a few episodes of me sharing my experience I brought guests on to share their journey. I haven't met most of the people on my podcast but I have found a lot more in common with them. There have been conversations about misdiagnosis, medical gaslighting, relationships and support. A huge thank you to everyone who has featured on the podcast, shared it and listened.

I'll see you when I hit the next milestone.

The Real Me

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.

Mental Health is a big and broad subject with many differing opinions and views. Awareness is spread by many in many different forms. People struggle in their own way, some can express it and some cannot.

But I do believe we all need an outlet. I used to have a mixture of ways that I used to vent to cope when struggling with my mental health. Admittedly some were very toxic and bad for me, and others were quite creative.

The creative ways in which I used to “vent and cope” would be creative writing, this could be in the form of poetry or just expressing my feelings/emotions/thoughts in a written piece. These pieces that I wrote I kept very private. I never showed anyone for a long time. I started to use the creative tools on social media to create posts/videos/reels to express myself. I first started on Instagram, when I first started I would never fully let my guard down. I would hold back and not fully express my authentic self.

I now try to stick to more creative ways of expressing myself, feelings, emotions and thoughts. This is my outlet.

Below is something that I wrote a while ago.

The Real Me.

I been hiding. Truly I been hiding all my life. The real me a few people know. Even they have had a limited version of me.

Fear has ruled my life and acceptance has always been what I have strived for.

Fear of not being enough.

I have tried for so long to be enough for everyone. For my mother, for my brothers, sisters, nieces, nephews, for my friends, for my brothers of different blood.

Enough for my kids and the ones I truly gave my heart to.

At times I have failed. But mostly, in comparison, I have succeeded and am still on a journey of becoming better.

I know Mum is proud of me, I just need to go see her more.

I always was enough for my brothers and sisters, just need to remember which are worthy of me and my time.

The nieces and nephews that are in my life choose to be, I am their uncle and will always love them. That is enough.

I know I'm enough for my friends, I just need to see them more.

For my kids, I got a bit of a way to go yet.

And for the ones I truly gave my heart to, I wanted to be enough for you so much, I changed who I was. I suffocated the person inside of me and like a chameleon I became a version of your vision.

Being accepted by my peers, by my family, by society, by the ones I loved and the ones they loved.

Because I have always known I'm different. I have always seen things differently, always felt things deeply. And you could say highly perceptive and sensitive. Always looked for deeper meaning and had a romanticised view on life. All of these things have always made me feel like bursting, as I wanted to express my interpretations of my life experiences in the most creative ways or express myself with such vigor and eloquence that it gets lost in translation or confused with something else.

I'm still shaking all the remnants of all these chains off. Because ultimately, this "need" to be enough for everyone else is a weight, that need is a chain, it's heavy and I just can't carry it anymore.

So I'm breaking those chains by realising I am enough for all of those who I wanted and more than that. I'm enough for myself and to actually ask myself the question.

Am I doing enough for me?

Because when I'm not, I'm definitely doing more than enough for others.

Written by Yaya Shah

Unseen with an Invisible Illness

The day I was given a diagnosis for FND and a link to a website, my Neurologist said that I should just go figure it out. “It’s not cancer, Miss Ali, it’s up to you how badly you want to get better.” The diagnosis gave me a label, one that wasn’t taken seriously. It left me with more questions than answers. A year later I was also diagnosed with Fibromyalgia and Myalgic Encephalomyelitis also known as M.E. A broken brain and nervous system, a few chronic conditions to the table, what a life.

Photo by Pâmela Lima on Unsplash

There wasn’t a pathway to help with treatment, apart from going round and round in circles with unsolicited advice I did give up. And although it is tough to admit at times, even say out loud. I can hopefully continue to write about it though. Since receiving brain treatment, I have looked into triggers. I won’t go into every single one, there may be a book for that one day, someday. Looking back, tot being seen, feeling voiceless and suppressing emotions had a huge impact. The involuntary movement, the non-epileptic seizures, the drop attacks felt like a part of me wanting to be heard. Maybe it was my brain telling my nervous system that I wasn’t listening to my body. I needed to rest, and I didn’t. I would constantly burn out and when I eventually became bed-ridden no one believed me.

• “Just get up Shehla.”

• “Why are you making this up?”

• “It must be in your head.”

• “Just be more positive.”

• “It’s just anxiety.”

Once I began fighting for treatment, the right to be seen by a medical team, specialists and be put on waiting lists even if they were more than two years. I repeated myself often, and consistently. I began building documents, evidence, videos, photographs and raising awareness. The odd “oh get over it” comment, “it’s not even that serious”. “Maybe you should go and unalive yourself then.” There were times I just thought about what am I fighting for, I spend money, time and all my energy to survive and for what? Constantly compromising the joy of life. A yes to myself, is a no to everyone and everything else in society apart from the days when it’s a green day, and it feels worth it. Those couple of hours the old Shehla visits, the enthusiasm, hopes and dreams. They shut down now and again because of how debilitating these conditions are. A relapse and the bedridden version of me envies the old me but the old me got me here in some respects.

There were times I would just sit and stare at my walls hoping the symptoms would fade away: “They’re your friends Shehla, they’re trying to tell you something. Are you listening.” Said one specialist. Friend? It was a friend that was hurting me physically and mentally. I was trying to escape this, looking for shortcuts and constantly looking for answers whilst being exhausted. The desperation was there to get better. But I was met with awkward silences, ignored by messages, phone calls put down on me and everything else.

Written by: Shehla Ali

Travelling Solo with a Chronic Illness

Travelling solo had become a part of my life, identity and had a huge impact on who I am today. I had a scratching map I would look forward to scratching off and everyday I woke up I would dream about the next country I would tick off.

In my previous life I was often asked where I would be travelling next and what my previous adventure was like. I mean I had been keeping a travel blog and sharing images on Instagram. So I don’t blame people for asking me. But when I became sick, it became a trigger. I didn’t recognise myself in the mirror, nor did I feel like I could relate to the life I had lived. Me? Getting on a plane to visit another timezone, Shehla, who was having trouble walking. I'm the same girl who travelled to Antarctica, the one who was randomly dropping on the floor and had no control over her symptoms. It became a distant dream and a wish in some respects that I would travel again, and not just to A&E.

After my mental health deteriorated I received so much unsolicited advice about how I should remain positive. My life looked perfect granted on social media. A picture of a glacier, an ice-berg, a sunset, a sunrise, you get the picture right. I couldn't look at those images again, especially the reminders my phone kindly showed.

• 2 years ago a picture of a beach

• 5 years ago a hiking summit

• 6 years ago backpacking for 5 months

Whenever someone would say well at least you travelled when you did, my response, I wish I hadn’t. A whole other stuff happened and well I began to accept that my life had changed. I was able to go to local places then I ventured out of the city and worked out how many spoons (energy) it took out of me, and how long it took to recover. I cried after my first trip solo out of the city. I was overwhelmed that I could go out again and there was a glimmer of hope. I still hadn’t ventured to The Peak District solo. The thought of dropping there and no one being able to find me terrified me. I was unsure about how to travel abroad again, I wouldn’t be taking my backpack, my body wouldn’t be able to handle it. Did I still have a passport? I remembered renewing it and it was empty, I guess this was a fresh start. I looked online for flights and thought what could I enjoy, what was doable and where could I be comfortable again. Switzerland it was.

Image Credit: The Australian Photographer I met sorry I didn’t catch your name.

I searched for flights, I chose one that would be early morning, usual airport and then searched for accommodation, check. Now what did I actually want to do whilst I was there, was simply setting foot there enough? I booked a day trip a day after my arrival to visit glaciers and a lake. The remaining days I wanted to keep free for roaming, resting and absorbing where I was. I was still working on being present. Once I made it to Switzerland and to my accommodation I was indeed exhausted from a two hour flight. My journey had begun at 3am and I was yawning and cold. I chose to visit somewhere cold and nearby but I was indeed grateful that I had travelled again. I was exhausted throughout the trip and at times the adrenaline took over. I knew it would also take time to recover when I returned, and it did. But I now know that I can travel again, solo, with long-term conditions.

Written by: Shehla Ali

Running a Business with Invisible Illnesses

I have no future, I am useless, I am worthless.

A few of the words I used to describe myself and my contribution to society. I had been bedridden and diagnosed with a medically unexplained brain condition and a few chronic illnesses. The depression and anxiety were the only visitors I had, and they were unwelcome.

What to do? Well in 2020 I spent a long time having a pity party, I called the crisis helpline and I just wanted the pain and the thought of being a burden to end. When I accepted my life would be different I began advocating and participating in discussions around invisible illnesses.

Photo by Anthony Tran on Unsplash

I thought about all the missing pieces and some of the blocks in getting a diagnosis, working towards raising awareness and looking for what else could be done. I came up with the prospect of what I was going to do and pitched it to a friend.

I then wrote down post it notes and A3 sheets of what my vision looked like. I had already run a business for 5 years at this point. I knew I wanted to continue to work for myself due to the flexibility, the fact that I may not be able to find a company that understood chronic conditions and all the stress that would come with it. I was just about overcoming the people who had given me every suggestion under the sun. Could I possibly put myself through that again? I wanted to raise as much awareness as I could, but that was met with bumps across the road. As someone who was still learning how to pace and battle the old Shehla’s way of working I struggled.

Pacing

I had to work out my baseline, this part was challenging. How do I workout my energy levels when I couldn’t remember who I was and where I was going some days. My symptoms would vary from hour to hour, there would be a seasonal change and then boom a relapse and I was bed-bound again.

I would fight the urge to overwork when I was having a green day, which basically meant the day I was not dropping on the floor or going into some sort of seizure, involuntary movements and brain fog. It took me months to come with a name, it took me longer to build the website and put the components together. It historically took me three weeks sometimes to do this whether for my own projects or clients. But this was new territory for me. I had to monitor and assess what my triggers were and almost force myself to rest. I even had to research how to do that, because a face mask alone is not enough.

Rebuilding

When I began rebuilding there were plenty of barriers to battle, which felt like an extra load I had to deal with. I then prepared myself for launch day, I shared a post after nearly a year of hiatus, and there it was. My truth, for people to know, understand, judge and support. I didn’t want to feel like I was asking for sympathy but sharing how much my life had changed enabled me to reduce my own judgment towards myself. They say you should be your authentic self, and although I try, there are days when I know society will share more harm than good. The unsolicited advice of “just get on with it”, "just be happy”, “smile more and it will go away” when bed-ridden doesn’t help, trust me. The more I continue to survive the more gaps and work I see needs doing. That’s why most of the people who have worked with me on projects and content for ‘About M.E.’ have chronic conditions or invisible illnesses and I hope to continue building a place where people can work but not have their identity stripped from them nor put them on a performance plan. I've learned from others who have featured on my podcast 'A Spoonful of Recovery'.

Thank you to help making it to 40 episodes of A Spoonful of Recovery

And even when my body begins to shut down again, the pain continues to pierce me and my world feels like it's collapsing again I still have my purpose which has kept me going through some tough times.

So here’s to rebuilding, even when it feels impossible, painful and demoralising I hope there is a successful and peaceful journey to share in all of this.

Written by: Shehla Ali

Ableism and Hidden Disabilities

Trigger Warning: Ableism, Disability and Discrimination.

Ableism is a term that I have become familiar with over the years. Since becoming bed-bound and learning more about my broken brain and nervous system it’s been hard to ignore, confront and live with.

I was a go-getter. From a young age all I wanted to do was create things, whether it was images on photoshop, writing poetry or producing photographs with disposable cameras. Introvert granted, but I used my creativity to share my world. When I joined the working world as a teenager I worked non-stop because the idea of going without was a cycle I wanted to end. I continued to work and even though I was burnt out at times I continued to test the signs. I then quit my job and traveled solo around the world and hiked mountains, camped out at airports, traveled from hostel to hostel. The adventurous side of me was alive and it was a world I welcomed, a very privileged one.

Photo by Dev Asangbam on Unsplash

When my body shut down and I could not move that life had ended. I was told my life was not worth living, I would not be a worthy member of society, the part of Shehla that was accepted was no longer of value and goodbye future bucket list and dreams. It took me around a year to accept and re-learn the simple virtues of life. Like walking in a straight line, making it up the stairs, and being able to feed myself again. Those things became luxuries to me. I’d try to take part in activities to see how much it would impact my body. How do you start a conversation about conditions that harm you but the rest of the world cannot always see. I’d often demonstrate to people how my symptoms would occur, but it was draining.

In a world where accessibility is discussed now and again but not always taken seriously it can become demoralising. I spoke to someone about lights flickering heavily at an event and was basically laughed at. I explained that the lights were triggering my spasms and could cause a non-epileptic seizure and was told well not much we can do. There was a dismissive tone, the whole you’re just whining for no reason. It made me think, will it always be like this? Will I raise a concern and be shut down because I didn't look sick enough.

I am still learning everyday and have had to bring my hobbies indoors, like photography, stargazing with my telescope at home, skin care and experimenting with make-up from my bed, reading and just breathing. I hope that I can continue to raise awareness.

Chronic Illnesses and What If's

Trigger Warning: Mental Health

If I had just...

If I could have...

If I didn’t...

Those were the words I repeated to myself when I became bed-bound. I lived in regret and couldn’t see a way out. I believed that if I had made different choices in my life then maybe just maybe I wouldn’t have become so sick. It must have been my own fault because that’s what society had me believe along with specialists and those around me.

To have unexplained symptoms, then fight for a diagnosis and then be given a link to a website and get on with it. Looking back I had no fight left in me, I had already felt like I lost my battle with mental health so how could I fight for my physical health.

The same vicious cycle of ‘what if?’ continued. I say this time and time again that being sick is painful, debilitating and something that has stripped me off a lot. However, without it I would not have been forced to rest, I would not have learned about my emotions and got private therapy. I would not have understood my previous privileges after being stripped off them. And as I grow older and live with these multiple conditions I have realised that those what ifs and scenarios do not necessarily mean my life would have been better off. I may have moved abroad, become sick and been left with a hefty bill. I may have had loads of properties under my belt and then fallen behind on bills.

There are often times where people who have never had the experience of living with invisible illnesses, hidden disabilities or any other diagnosis give unsolicited advice. It would feel like a never ending battle and one I often lost a lot of energy towards.

There are times where I feel like I fully accept who I am, for now. Then a few judgemental comments later I have that reminder of how far we have to go as a society. Can I control every single thought and emotion? No. Can I create content to share my experience and others who have similar battles? Yes. And that's sometimes all we can control I can't control the narrative, but I can share perspective and clarity from a different side and community.

One conversation at a time maybe we can help raise awareness, but I have also learned to accept that sometimes people share their ignorance regardless of how it may make you feel. I’ve had a number of conversations personally and also on my podcast about how isolating it can be, debilitating and exhausting. One minute you have a social life, a career, a status in society, you have a memory, a routine, a choice and then everything feels gone. I have found myself bed-ridden with my thoughts praying for it to all go away. I have found my own words terrorising and harmful, I have allowed those around me to make me feel like to not exist would be a better choice. But sometimes something so life-changing and traumatic could be the one thing that gives you purpose. Although, I have felt isolated, I have felt mute, ignored and all of a sudden uninvited from anything and everything I now don’t really have expectations of people.

There’s a battle to survive constantly, I guess the newer version of me cannot simply just carry all those judgements, the suppression is just not worth it.

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