FND Awareness Day 2026

What is FND Awareness Day?

FND stands for Functional Neurological Disorder which is a neurological disorder often misunderstood in society and the medical world. It is often described as the brain sending the wrong signals to the body. Symptoms vary and can include:

• Drop attacks

• Functional seizures

• Migraines

• Loss of feeling in legs

• Memory loss

According to The National Library of medicine there are likely a minimum of 50-100 000 people with FND in the UK.

FND Awareness Day hopes to raise awareness due to the stigma in society and the medical world. The condition is misunderstood and underfunded meaning people can be misdiagnosed and told: “Just stay positive.”

Resources: https://pubmed.ncbi.nlm.nih.gov/39663114/#:~:text=The%20incidence%20of%20FND%20was,1%20and%2018%2F100%20000.

No Palantir in the NHS

Medact have been lobbying against US spy-tech firm Palantir becoming a partner to create a Federation Data Platform for the NHS. 

NHS England was awarded a £330 million contract to US spy-tech Palantir to create a platform. There has been a lack of transparency with patients and medical professionals on where and how the data will be used. The contracts have been heavily redacted leaving people out of the loop. 

In 2025 Palantir CEO, Alex Karp said: “Palantir is here to disrupt…and, when it’s necessary, to scare our enemies and, on occasion, kill them.” 

Human rights organizations like Amnesty International in 202 stated: “there is a high risk that Palantir is contributing to serious human rights violations of migrants and asylum seekers by the US government” and that Palantir was failing in its responsibility to “avoid causing or contributing to human rights abuses”

Palantir are not new, they have provided software to the US military for wartime operations in Iraq and Afghanistan (a 2006 Lancet study estimated over 600,000 Iraqi deaths)

Medact’s mission is to support health professionals from all disciplines to work together towards a world in which everyone can truly achieve and exercise their human right to health. 

https://www.medact.org/2026/resources/briefings/briefing-palantir-fdp/

Editorial Decisions Tourettes/Racial Slur

The BBC made an editorial decision to include a racial slur towards two black men, Michael B Jordan and Delory Lindo at the BAFTA’s by John Davidson who has tourettes.

There was a two hour delay where ‘Free Palestine’ and an alleged homophobic slur were both censored. There was a microphone placed in front of John Davidson who was sat 40 seats away from the stage. There was no care provided for anyone involved. A prime example of organizations claiming diversity and promoting unheard voices do better!

Ramadan & Chronic Illnesses

Ramadan Mubarak to everyone who is observing, this is just a gentle reminder that some people are exempt from fasting. We are not scholars or medical professionals so please seek advice from both. 

What is Ramadan? 

Ramadan is one of the pillars of Islam where people refrain from eating and drinking from sunrise to sunset. 

The Guilt

People who have various reasons are exempt, most importantly those who are sick. There are different rulings, but we wanted to let you know that if you are unable to fast you are not alone. 

What You Can Do Instead

Depending on your reasons for not being able to fast, you will need to pay Fidya which is usually £5 a day to feed a poor person for every fast missed (so 30 days=£150). The figure is based on the year 2025/2026. Many charities offer Fidya campaigns, please research them as unfortunately it is easy to fall for charities that unfortunately don’t fulfill what they say. You can also just pay £5 to a person in need if you can’t find a charity that is eligible. 

Good Deeds:

• Listen to podcasts about increasing your knowledge

• Provide meals for people 

• Volunteering your time to a good cause

• Setting a personal goal for yourself

We hope you all have a blessed Ramadan. 

Invisible Disabilities Week

Invisible Disabilities Week is to help educate people that most disabilities are not obvious. Around 80% of people diagnosed with disabilities don’t have visible symptoms. The stigma we come across includes society, medical professionals, friends and family. There is still not enough funding to ensure these illnesses have treatment, a pathway and the right awareness.

Just a few Invisible Disabilities include:

• Endometriosis

• Functional Neurological Disorder

• Myalgic Encephalitis

• Fibromyalgia

• Lupus

• Multiple Sclerosis

• Migraines

• ADHD

  You can find out more about the Sunflower lanyard and more information about invisible disabilities here: https://hdsunflower.com/uk/insights/category/invisible-disabilities

The Cost of Being Heard: Chronic Illness, Academia, and Black Women's Labour

A note from the author: What follows is both personal reflection and research  insight—my experience of completing a PhD exploring Black undergraduate  students' experiences in UK higher education whilst managing chronic illness, and  what this dual reality revealed about institutional labour and care. 

Sarah Gordon

As I approached the end of my PhD journey, I was often met with platitudes of  strength, bravery, and resilience. As wonderful as it is to be recognised and  appreciated, this also highlighted an uncomfortable shadow overpowering my  experience. I began to understand why these words fell short, as this was not a show  of individual resilience and strength. This was about systemic extraction of labour.

Throughout this period of my life, I was caught in a double bind. Experiencing major  health complications and lifelong chronic illness diagnoses, whilst simultaneously  trying to bring light to the injustices that academia perpetuates. But this is not unique  to my experience. It is the reality for countless Black women navigating institutions  that demand our labour whilst undermining our wellbeing. 

The weight of invisible labour  

This labour has a specific texture to it. It is the extra meeting where you explain  (again) why being the only Black person in the room affects your participation. It is  the emotional management required when academia dismisses your perspective. It is  drafting and redrafting emails, editing your speech, calculating how much truth you  can tell without being labelled "aggressive" or "difficult". It is having to justify why a  racist incident was “actually” racist, whilst the person who caused harm remains comfortable. 

It is not only my research that highlights student’s fatigue from repeatedly explaining  racism and racialised experiences to uncomprehending staff (Arday 2018; Gordon,  2025). This is not an occasional frustration. It is an ongoing tax on their existence  within the university. A communication gap between students and institutional  representatives creating an additional psychological burden (Gordon, 2025). A  burden that compounded the very struggles students were trying to articulate.

When your body says no: Chronic illness as  consequence and complication

This work is often unpaid, unrecognised, and actively harms the people performing it.  But here is what institutions refuse to acknowledge: this labour does not just exhaust  us emotionally; it contributes deleteriously to our physical health. So, what happens  when your body says no? 

Audre Lorde knew this intimately. Writing whilst navigating cancer, she asked: "I don't  feel like being strong, but do I have a choice?" (Lorde, 2020, p. 5). It is a question I  found myself resonating with as my own health declined during my PhD. Our bodies are reverent archivists, unselective and not driven to please. The  chronic stress of this labour, the constant vigilance, the emotional regulation, the  exhaustion of being unheard, does not simply disappear. I felt this stress accumulate,  lodging itself in my body. Research indicates the cumulative impact of navigating  racist environments creates ongoing psychological burdens (Gordon, 2025). My  experience taught me the harm extends far beyond the psychological.  But having chronic illness does not exempt you from this labour, it compounds it.  Now you are explaining racism and justifying accommodation needs. Now you are  managing your symptoms and managing others' discomfort with your limitations. And  through it all, you are expected to be strong. 

The strength myth and its cost 

The expectation of strength, often placed on Black women in academia, at times felt  like an oppressive force rather than a source of empowerment (Gordon, 2025). This  myth serves institutions, not us. It means our pain is minimised, our needs are  questioned, and our exhaustion is reframed as inspiration. "You are so strong!"  becomes another extraction. We are not allowed to be vulnerable, unwell, or tired. Both my research participants and I knew this trap well (Gordon, 2025). The worry  was not just about being seen as weak, it was about confirming stereotypes, about  giving institutions ammunition to dismiss their legitimate concerns about racism.  This is what the strength myth costs us. We become palatable through our pain,  inspirational through our endurance, valuable only as far as we can continue  producing despite impossible conditions. We are expected to mentor junior students,  educate resistant colleagues, sit on EDI committees, and perform "resilience" whilst  our bodies are breaking down. 

For many Black women in academia, strength is not a choice. It is a survival strategy  in institutions that mistake our endurance for consent.

What institutions owe us - beyond Black History Month. 

Black History Month often asks us to reflect on these concepts of resilience and  strength. But this annual recognition rings hollow when institutions still expect us to  perform that same resilience daily, without addressing the systems causing harm.  So, what do institutions owe us? Not workshops we must run. Not committees where  we are the only ones naming racism. Not praise for our strength. Institutions owe us  environments where Black women do not have to choose between our health and  our work. Culturally responsive mental health support that acknowledges race-based  trauma as real and damaging (Gordon, 2025). Genuine accommodations for chronic  illness that do not require us to perform worthiness. Time and space to rest without  justification. Lorde wrote about living beyond fear and turning fury into creative  energy (Lorde, 2020, p. 8).

But that transformation should not be mandatory or  rushed. Sometimes we need to simply be unwell, be tired, be done - without  institutions extracting that as a teaching moment. Black History Month is not about  celebrating our survival. It is about demanding the conditions where we can thrive. 

References 

Arday, J. 2018. Understanding mental health: What are the issues for Black and  ethnic minority students at University? Social Sciences. 7(10). 

Gordon, S.R. (2025). From design to dialogue: a design-informed study on the  experiences of Black undergraduates in Higher Education. PhD thesis. University of  Nottingham. * 

Lorde, A. (2020). The Cancer Journals. 004 ed. London: Penguin Classics. 

*Dr Sarah Gordon's thesis will be available open access 10th December 2025, via the  University of Nottingham E-prints. 

Black History Month 2025

Black History Month 2025 is being celebrated this October (1st-31st) and this year's theme is Standing Firm in Power and Pride. We’re looking at the significant role people have played in medicine. 

There is a long list of names and some we may never hear about, their contributions include life-changing medication and procedures:

Daniel Hale Williams- Performed the first successful open-heart surgery. 

Rebecca Lee Crumpler- First African-American woman to become a medical doctor in the U.S

James McCune Smith- First African-American to earn a medical degree in the U.S

Charles Drew- Revolutionized blood storage techniques 

Henrietta Lacks- African-American woman whose cancer cells are the source of the HeLa cell line, the first immortalized human cell line and one of the most important cell lines in medical research.

Marilyn Gaston- Leading researcher on sickle cell disease and the first African-American woman to head a major federal agency when she was appointed Director of the Health Resources and Services Administration (HRSA) in 1990. 

Solomon Fuller, MD- made significant contributions to the study of Alzheimer’s disease. 

Kizzmekia Corbett: A viral immunologist who led the NIH team that developed the Moderna COVID-19 vaccine

There are many more names we will never get to celebrate due to inequality and anti-blackness, we still have a long way to go. Happy Black History Month. 

Resources: https://medicine.uky.edu/news/black-figures-medical-history-2022-02-09t18-20-25

South Asian Women: Medical Bias

We are researching South Asian women's healthcare experiences and would appreciate it if you can fill in the survey or share please. Unfortunately it is a topic that is overlooked and we would like to share these stories as challenging as they might be.

Link to survey: https://bit.ly/HealthcareForSouthAsianWomen

Thank you.

Welfare Cuts are Deadly

The government have proposed that everyone already claiming PIP (Personal Independence Payment) will remain on the existing plan. Any new claimants will face a tougher criteria. Scope report that on an average households with a disabled person cost an additional £1,095 a month. Universal Credit is being cut and potentially frozen in certain areas. It said an estimated 150,000 people may be pushed into relative poverty by 2030 as a result of the welfare cuts. We believe these cuts will have a detrimental impact on people. We do not want to hear about well wishes and how the government think a forcing people into work will make people feel positive.

Please write to your MP asking them to say no to welfare cuts:

https://campaigns.scope.org.uk/page/172856/action/1?ea.tracking.id=website

Resources: https://assets.publishing.service.gov.uk/media/67e667fe4a226ab6c41b1fe2/spring-statement-2025-health-and-disability-benefit-reforms-impacts.pdf

Boundaries & Chronic Illnesses

Setting and maintaining boundaries when living with a chronic illness is essential for both your physical health and mental well-being. These boundaries help protect your spoons and can help create realistic expectations in relationships, work, and daily life. So let’s explore a few of these together.

1. Physical Boundaries

These are about managing your spoons, pain, and overall health.

• Rest and Recovery: Say no to activities when your body needs rest—even if it's inconvenient for others.

• Pacing: Break tasks into manageable parts and avoid overcommitting.

• Diet and Medication: Stick to what your body needs even if others encourage otherwise, it is your body. There is also a lot of misinformation out there.

2. Emotional Boundaries

Protecting your emotional space is vital when others may not understand your illness.

• Educate selectively: You don’t owe everyone a detailed explanation of your condition.

• Limit toxic interactions: Avoid people who minimize or invalidate your experience (“But you were ok the other day”).

• Permission to feel: Give yourself space to grieve, be angry, or rest without guilt.

3. Social Boundaries

Balance connection with self-preservation.

• Decline without guilt: It’s okay to skip events or leave early if needed.

• Flexible communication: Let friends know you might not always respond quickly or be available.

• Selective sharing: Choose who you open up to and how much you disclose.

4. Work/Professional Boundaries

Navigating work with a chronic illness requires honest limits.

• Disclosure (if appropriate): You can choose to inform your employer or HR for accommodations.

• Reasonable accommodations: Ask for modified hours, remote work, or task adjustments.

• Know your rights: In many places, disability protections exist i.e the UK.

5. Mental Health Boundaries

Living with chronic illness often impacts mental health, so set boundaries for psychological safety.

• Therapy or support groups: A space where your experience is understood and validated.

• Mental rest: Say no to emotionally taxing conversations or media that drain you.

• Avoid over-researching: Protect yourself from overwhelm and misinformation online.

6. Internal Boundaries

Sometimes, the hardest person to set boundaries with is yourself.

• Release unrealistic expectations: You don’t have to “push through” every time.

• Self-talk check: Replace guilt or shame with compassion and acknowledgment.

• Celebrate small wins: Honor what you can do, not just what you can’t.