Disabilities in Palestine
Gaza Sunbirds
Palestine has been facing atrocities for 76 years and have been displaced with no right of return. We have witnessed through citizenship journalism what it’s like to make do with very little. But what about those who are asked to leave but unable to, there are many Palestinians who live with disabilities. They will struggle with basic necessities.
According to Palestine Central Bureau of Statistics one fifth of persons with disabilities are children under the age of 18. We have witnessed internet cut off which means those who rely on social media like people with hearing impairments were unable to evacuate. Palestinians especially in Gaza rely on foreign aid but have been restricted for 70+ days.
Wars, conflict and genocide create more disabilities. We have witnessed through journalists like Moataz, Bisan, Wael and Hind on how hospitals have been targeted and harming people further. Those who have been told to evacuate on multiple occasions weren’t all able to due to disabilities including chronic illnesses. Muwa’imah Beach was the first beach in 2019 for people with disabilities in Gaza. From playing basketball in wheelchairs to enjoying sunsets, the Palestinians now have to constantly worry about daily bombing.
Image: Gaza Sunbirds credit Mohamed Soleimane
Gaza Sun Birds are a grassroots organization who help people in Palestine unite through sports. They are para athletes who cycle, provide nutrition and coaching for others impacted by the atrocities. Alaa al-Dali founder of Gaza Sun Birds in 2018 was a top pro-cyclist in Palestine. Whilst attending a peaceful Palestinian rally along the Gaza-Israel border - he was shot by an Israeli sniper in the leg leading to it being surgically removed and, what he calls, the amputation of his dream. The following year, he rewrote his personal goal of competing individually in overseas races into a collective project using sport to empower others after trauma.
Assembling 19 team mates who had sustained similar life-altering injuries from Israeli attacks, he launched the Gaza Sunbirds around the ambition of representing their country at the 2024 Paralympics.
“We want everybody to see us cycling on one leg and feel the power we have: we are not a burden to our society. We will make Palestine proud. We ride for freedom.” Alaa al-Dali, Gaza Sunbirds founder and captain
You can support Gaza Sun Birds here: https://bit.ly/GazaSunbirdsFundraiser
Image: GazaSunbirds - Credit Flavia Cappellini
Festival of Debate: Making Invisible Illnesses Visible
In partnership with About M.E. & Festival of Debate we kicked off a conversation.
Trigger warnings: mental health, racism, discrimination and symptoms of illnesses.
In order to help make invisible illnesses visible there needs to be conversations around why so many people are misdiagnosed, dismissed and experience gaslighting for having medically unexplained symptoms.
At this years Festival of Debate we looked at the stigma and racism within society and the medical field. Having first hand experience like many others on assuming going to A&E will give you answers to symptoms you’ve never experienced, changed my life forever. There have been issues around getting a diagnosis. There are a lot of issues in getting an appointment and once that has been obtained, a pathways for diagnosis and treatment. There have been a few documentaries and films we would like to recommend to learn more about medical neglect: Take Care of Maya & Unrest
Picture credit: Ben from Festival of Debate
Thank you to all who attended,
Shehla.
ACU Seeds
The cure for M.E. has been found, according to a Dragon’s Den episode aired:
Giselle Boxer, founder of Acu Seeds, said in her pitch that she was diagnosed with M.E. by using Acu Seeds. Her pitch ended with an impressive response and Dragon’s investing. So what’s the problem?
Well for one, there isn’t an official cure M.E. which stands for Myalgic Encephalomyelitis. Patients are often dismissed as people with psychological stress. We support the statements made by M.E. Association regarding the concerns:
“These sort of expensive commercial products and devices should not be promoted to very vulnerable sick people until they have been properly assessed for safety and efficacy in clinical trials – in exactly the same way that drug treatments are.”
We would like the media to be more responsible with their reporting and portrayal of invisible illnesses. The BBC have now added a disclaimer to the episode.
Full statement: https://meassociation.org.uk/2024/02/bbc-dragons-den-controversy-acu-seeds
The Journey of Invisible Illnesses
***Trigger Warning*** Mental Health
“Just try harder.” Harder to hide it or harder to get better? Something I would never have questioned during my personal and professional life is becoming bed-ridden. I don’t mean becoming so tired that I needed a nap, I mean not being able to move and questioning whether or not I had a future.
I had the tendency like most millennials to work non-stop and then monetize every hobby and side hustle I could think of. Add living in an immigrant household working harder than everyone else was not a question but a way of life. I had been trying to break barriers, discipline myself into a corporate career and then traveling around the world solo. I was very active and if you ever asked me what my hobbies were this is what came to mind: the gym, hiking mountains, flying drones and traveling. This was all great, I felt like I had a lot going on for me. Until one day I began blacking out and dropping on the floor. The symptoms gradually became worse and eventually taken to A&E.
As someone who was fairly healthy growing up, I assumed I would get better. I left A&E after several hours of waiting, with more questions than answers.
“Just pray more?”
“Maybe you’re being punished?”
“What did you do to yourself?”
As a person of faith I know this happened for a reason, but to have illnesses weaponized against you can be problematic, I say can be it is. After awaiting an MRI scan during the National Lockdown I was eventually diagnosed with FND (Functional Neurological Disorder). Which is often described by Neurologist Professor Jon Stone as a “software” issue of the brain, not the hardware (as in stroke or MS).” It is often medically unexplained and unfortunately due to lack of funding. I gave up, I wasn’t able to physically get up for my prayers and felt hopeless. I tried to continue to work, I could barely stand and when I walked up and down the stairs I began to drop and that was it.
Some days it would be 22 hours of me being unable to move. The days became weeks, and weeks eventually turned into months. I gave up, I couldn’t see a way out apart from one. Everyone and their TikTok medical degrees were telling me to just be happy, positive, keep pushing, drink turmeric lattes and a bit of yoga should cover it. When I tried all these things, all I did was make myself worse.
After months of dark thoughts, I got to my worst night. I didn’t want to continue what felt like an unbearable life. I took it hour by hour, and when my head hit the pillow I felt a moment of relief. Because for several hours I would not have to deal with my symptoms. My world was ending whilst everyone else was living. When I woke up during what we call a New Year, I learned the meaning of surviving. And I was doing just that, I began to look into ways of alternative living. Over the years I have had to seek medical treatment from different medical practices like somatic therapy, acupuncture, neuropsychotherapy and physio. I found talking therapy was a starting point to me accepting becoming sick. I know I know we are not meant to “talk” about personal stuff. Well it’s too late. Knowing that having a good therapist saved my life and with building coping strategies. I could continue to speak about invisible illnesses as it is now my life but I know how isolated I was and continue to be. There will be people who leave, others who don’t get it and new bonds will be formed. One thing I know is my previous business didn’t always give me joy and fulfillment. I don’t enjoy being sick, nor do I enjoy the painful symptoms. However, I have learned how to be patient (Sabr) and genuinely learn that we won’t always have the things we once but so much emphasis on. I’ll leave you with a few practical tips that may help.
Top tips:
Get a second opinion
Write to your MP
Document symptoms
Join communities/groups who can support you
Don’t be afraid to pick up the phone to Samaritans 116 123
Set boundaries
Becoming Bed-Ridden
Experiencing symptoms of invisible illnesses like Fibromyalgia, M.E. (Myalgic Encephalomyelitis), and FND (Functional Neurological Disorder) can be a challenging and overwhelming experience. It is not uncommon for individuals with these conditions to become bed-ridden when they are experiencing symptoms. I slept in the living room for months.
The fact that I was hiking mountains and travelling solo around the world a year prior to becoming sick broke me.
Fibromyalgia is a chronic pain disorder that is characterized by widespread musculoskeletal pain, fatigue, sleep disturbances, and tenderness in localized areas. M.E. is a complex neurological condition that can cause symptoms such as extreme fatigue, cognitive impairment, and pain.
FND is a condition in which there is a problem with the functioning of the nervous system, which can result in symptoms such as weakness, tremors, and seizures.
When experiencing symptoms of these conditions, it is important to listen to your body and rest when necessary.
If you find yourself becoming bed-ridden due to symptoms, it may be helpful to develop a self-care routine that includes activities that can be done while lying down, such as meditation, breathing exercises, or gentle stretching. When i'm able to I reach for my books that are placed next to my bed. There were days where all I could do was stare at my four walls.
It is also important to seek medical treatment and work with healthcare professionals to develop a treatment plan that is tailored to your individual needs. This may include medication, physical therapy. Additionally, joining a support group or working with a therapist can provide emotional support and help you cope with the challenges of living with an invisible illness.
Remember, it is okay to take breaks and prioritize self-care when you are experiencing symptoms. Taking care of your physical and mental health is essential for managing these conditions and improving your quality of life.
Making Invisible Conditions Visible
Image credit: FreePik
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.
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