Sarah L's story

Hi, my name is Sarah, and here is my story…

I would describe myself as being caring, driven and fun to be around. I always want to make sure no one is left out as I know that feeling all too well.

My neurological condition journey started when I was 17 when I went into hospital with an ‘unexplained’ medical episode and was later diagnosed as having Chronic Migraines. Chronic Migraines is defined as having a headache at least 15 days of the month with migraine related symptoms for at least 3 months. Since I was 17, I have never had a headache or migraine-free day, which is not only painful but exhausting and frustrating beyond belief. Despite the severity of the migraine attacks, I was able to work full-time in a creative role at an inflight entertainment company and was then diagnosed further with M.E. (also known as Chronic Fatigue Syndrome). Personally, dealing with my M.E. makes me feel like I’ve been running a marathon every single day, carrying around weights that seem impossible to shake off. Back when I was working, I used to downplay and doubt myself, convincing myself that I just wanted to fit in like everyone else. However, deep down, I knew that my health conditions meant that this wasn’t always possible.

During the COVID pandemic, I decided to go back to university to do a PGCE in Primary Education so I could train for my dream role as a Primary School Teacher. In January 2022, four months into my job as a Key Stage 1 teacher, I came down with COVID and viral meningitis at the same time so was off work. One month later, I ended up collapsing and I lost the feeling in my left side after suffering a hemiplegic migraine. After nearly 2 weeks in hospital, I had test after test and was finally diagnosed with a rare neurological condition called Idiopathic Intracranial Hypertension (or IIH for short). IIH is a condition where there is too much cerebral fluid putting too much pressure around the brain, which causes me to have issues with my vision, further headaches, and tinnitus.

Later in my outpatient appointment, which followed five months after my admission to hospital, I was given an additional diagnosis called FND (Functional Neurological Disorder). FND is a condition where there is a problem with the function of the nervous system and how the brain and body sends and receives signals around the body. This was the medical explanation for why my left leg from the bottom on the knee downwards has no feeling in it, temporary nerves & joint pain and issues with my speech.

Following these, I have additionally been diagnosed with ADHD in summer 2022 & Autism late 2023.

Unfortunately, I was not able to return to working as a Primary School Teacher due to the aftereffects of my hemiplegic migraine and FND diagnosis. I now have to use mobility aids every day including walking sticks and a wheelchair to get around my home and outdoors and deemed not able to drive due to my health conditions.

Because of my health conditions, I can’t venture out on my own, resulting in a significant loss of my independence. Due to not being able to work and being solely reliant on benefits, I am not able to afford my old lifestyle where I would be able to go to any concert, holiday or improve my home anyway I wanted. I now have a P.A., which really helps me with being able to sort things out around my house, go to the shops & medical appointments and do fun things like going to the zoo! Before having her, I was in a state of chronic overwhelm and ended up in hospital multiple times due to my health deteriorating with pushing myself too much. She literally is a saving grace & helps me when I am in situations, which can trigger stress or worry for me.

With my M.E. & FND, I have tried to adopt the pacing ethos which I was directed to use by my occupational therapist, but I do find this tricky being someone who naturally wants to do things and keep busy. Along with this, I see a chiropractor & osteopath, have physio sporadically with my neuro physio & go on walks with my friends & family.

To manage my ADHD, I incorporate mindfulness practices, engage in creative activities like colouring, and make a conscious effort to stay hydrated, as I tend to forget to do so.

Being involved with the Brain & Spine Foundation has motivated me to continue discussing neurological conditions and ensure that people are informed about their impact. My association with the foundation has been a valuable learning experience, exposing me to conditions I hadn’t encountered before or had limited knowledge about. Being able to speak to the team and being authentically myself has really helped me because at times, I don’t feel that my authentic self is enough but through conversations I have had with the team I feel really supported and appreciated for what I do and for who I am.

I wish my friends knew that despite appearing happy and bubbly, it doesn’t mean I’m not experiencing pain or having a challenging day. I frequently mask my true feelings as a defence mechanism related to being neurodivergent. I fear that people might get bored of hearing me discuss my health conditions and their impact, so I often default to saying, “I’m fine,” even though I’m someone who consistently tells people not to do this!

I would say to someone at the beginning of an experience like my own is that it’s ok not to be ok and to make sure to talk to your support around you. Having my close circle around me really helped me through some of the darkest times of my life during the diagnosis to outpatient time. If there is no one that you feel that you can talk to, write down your feelings in a diary. This helped me when I felt I couldn’t reach out to my friends and family. I would also say to you that going to social media to find others out there that have the same condition as you, a built-up community, is such an amazing experience but be careful of those that are there for the wrong reasons and for trolls. I started doing TikTok’s about my health story at the end of 2022 and had multiple trolls tell me that my conditions don’t exist; back at the start of my journey, those comments would have caused me to spiral but after feeling more comfortable in my own skin, I had the ability to ignore them. I would never have had that at the beginning of my health journey.

There are a few people that have inspired me including disability advocate & model Grace True, actress Ellie Henry & my best friend Tanya.

The reason Grace inspired me is the fact that despite having FND like myself, she has been able to create a career modelling & creating mobility aid accessories for dolls whilst raising awareness of FND and for ambulatory wheelchair users like me.

Ellie has inspired me because she is not only representing an underrepresented minority on TV through her role in Hollyoaks of her character being a wheelchair user, but she is also showing that young ambulatory wheelchair users and creative people with disabilities (visible or invisible) are important and need to be represented more on stage & screen.

My best friend Tanya inspires me every day because despite being neurodivergent and struggling with constant burn out, fatigue and with feeling she is less than, she has done such incredible things throughout her life despite her struggles. Among the achievements, she has created her own successful cake business where she has taken part in markets & made custom cakes for customers across the Northeast, taught herself how to code and lived in Finland by herself!

Fun facts for you:

I can play seven different musical instruments (including singing).

I have auditioned for TV shows including The Voice, Mastermind & Bake Off.

I recorded a song when I was at the Ryman Auditorium, Nashville, which is the original home of American country music.

I am a massive Taylor Swift fan and have seen her 7 times!

I love going to concerts, seeing plays & musicals as well as drag shows.

My favourite TV series are Friends, Drag Race, Queer Eye, Dragula & Killing Eve.

I am a big Manchester United Women’s Football fan and my favourite Women’s Super League player is Hannah Blundell.

I collect anything Stitch, thimbles, pin badges & stim toys including Tangles!