Lifestyle

You Don’t Look Sick: ‘I worry about telling people at work about my brain tumour’


Welcome to You Don’t Look Sick – our new weekly series about invisible illness and disabilities.

There are 13.9 million disabled people in the UK, but for many of them, you would have no idea anything is wrong.

Lots of people suffer from debilitating symptoms and daily struggles but when they are out in public, they are challenged when they use priority seats or disabled parking.

They’re told ‘but you don’t look sick’ because they don’t use a wheelchair or something people associate with disability.

This series is a look at what it’s really like to live with a disability or illness that no one can see, discussing the symptoms that affect their lives every day and how they are treated when they are out in public.

(Picture: James Clarke for Metro.co.uk)

Grace Latter, 25, from East Sussex, has a type of brain tumour – a low grade pilocytic astrocytoma, lodged unusually deep in her left temporal lobe.

She also has mild IBS, sensitivity, pain and PTSD following bowel problems (an infection, then obstruction), which led to her having major surgeries on her intestines.

For Grace, a lack of understanding around what it is like to live with a condition like hers can be very frustrating.

She explains: ‘I really struggle with the friends who say, with complete innocence and good intentions, ‘you look fine to me!’ after I’ve had surgery.

‘I am currently still healing after a reconstruction operation I had back in September to correct a misplaced muscle on the left side of my head, which had given me a noticeable (to me, anyway) dent and bulge on one side of my face.

‘I am still slightly swollen, and one eyebrow is not quite working. I’ve been told to wait six to nine months, but deep down I truly fear it will never go back to ‘normal’.

‘Having friends who cheerily say ‘I wouldn’t have noticed!’ and ‘what are you worrying about?!’ just makes me feel like I’m unjustified in my feelings of intense self-consciousness.

‘I also had friends who’d call it a ‘silver lining’ when I lost two stone after two major bowel surgeries in 2017… that actually made me a little angry, as I was so uncomfortable in my own skin, not feeling like me, and they had somehow decided that the weight loss was a perk.

Grace Latter (Picture: Erin Veness )

‘With strangers, I often feel guilty when I’m offered a seat on a busy underground train, but then I really can’t handle the stuffiness or pain of standing and swaying in the carriage for too long.

‘I supported the recent campaign to get the ‘please offer me a seat’ badges into circulation on public transport, because then hopefully less people would feel awkward or selfish asking for a seat and feeling pressured to explain they have an invisible illness.

In 2014, she started to experience a sudden loss of motor skills, increased clumsiness and balance issues.

After months of scans, the tumour was found at the end of May 2014.

She explains: ‘I was relieved when I was diagnosed. Finding out that I had an unusual, unnamed mass in my brain, actually felt like the best reassurance that I wasn’t crazy.

‘I definitely did have something wrong! I genuinely smiled through tears as my dad told me, at a cafe in Waterloo station. He had to do it because for some reason my GP didn’t think to call me.’



What is a pilocytic astrocytoma?

Grade 1 astrocytomas are called ‘pilocytic astrocytomas’.

Pilocytic means the cells are elongated and hair like.

They are slow growing, relatively contained and unlikely to spread to other parts of the brain.

They are also unlikely to return after being surgically removed.

The are most often found in children and young adults under the age of 20 and are equally common in males and females.

They are very rare in adults over 50 years.

They tend to grow in the cerebellum, which controls balance.

They can also occur in the optic pathways, which are involved in sight.

Pilocytic astrocytomas occur in around 10% of people who have ‘neurofibromatosis type 1’ (NF1).

This is a genetic condition you are born with that causes tumours to grow along your nerves.

The Brain Tumour Charity

Since then, Grace has had two craniotomies (operations to remove most of the tumour) in 2014 and 2015.

She had radiotherapy at the end of 2015 and a face reconstruction operation in 2018.

After the second craniotomy, she suffered a CS fluid leak through a hole in her skill into her forehead, causing a water balloon trapped under her skin.

She has now stopped long-term medication but needs regular check ups and is still recovering from her facial reconstruction.

Grace works in retail and as a freelance writer but admits that her condition can still have an effect on her every day.

She said: ‘I am almost constantly aware of my weaknesses.

‘I get frustrated by how little I can do, work-wise – I only work part-time, just a few hours each week, and even then I get easily overwhelmed and exhausted.

Grace after her facial reconstruction ((Picture: Tim Wilcocks)

‘It’s been a long process, recovering from my (many) surgeries and treatments; as they say, it’s not linear, and while you might feel strong and 100% capable one day, you might be slow and stumbling a little the next.

‘One thing is consistent; I am slow to start in the mornings. I wake up and get up just fine, but it takes me a while to get going from there.

‘I’m very fortunate in that I’m not on any long-term medication, and my check ups are now only every six months; I have a scan at my neurological centre, then there’s about a week of scanxiety, then I’ll see my neurosurgeon for the results and a general catch up.

‘I often worry, going into a new job contract, that I’ll be a nuisance for having to book two days off, a week apart, every six months… which I know is hardly going to stress out the managers or affect the rotas, but I still panic about being a high maintenance employee.

‘Maybe because I know how judgmental and marginalising some managers and companies can be, when they find out they have an employee with a chronic illness.

‘In fact, I’ve tried to hide my medical history from colleagues and management in some jobs I’ve had since my first diagnosis in 2014 – which is very stressful for me, and in the end has led to unpleasantness in the workplace.

A scan of Grace’s brain in July 2017, the tumour is the white glimmer in the middle right (Picture: Grace Latter)

‘It’s truly shocking how living with a condition, a pesky thing that is completely out of your control can be so limiting in work; it can stop you being promoted, it can give them reason to dismiss you without warning, it can even prevent you getting jobs in the first place. This needs to change, and soon.’

Grace decided to shave her head in March 2018 and raised money for The Brain Tumour charity and Counselling Plus.

Since then, as she has a visible scar, she has found that people make more assumptions about her health.

She explains: ‘I get so many double takes and stares – sometimes gormless, other times incredulous – when I walk down the street these days.

‘My craniotomy scar is very noticeable, meaning people stop to look at the woman with a buzzcut (which for some reason is seen as a crazy thing) then continue gawping at the long, hairless and slightly pink line shaped like a question mark across one side of my head.

(Picture: James Clarke for Metro.co.uk)

‘Usually, in all honesty, I relish the astonishment and make a point of smiling at every person I catch staring – and usually, they quickly shut their mouth and smile back – and stick my chin out a little more as I walk tall and proud. Shaving my head was the ultimate confidence boost, because really, when you look like this, you have to own it.

‘The only issue I have with the staring, is when little children loudly ask their parents ‘why has that lady got no hair!?’ and before I can swoop in and happily tell them I shaved it deliberately, the parents shush their kids and explain urgently that ‘she’s been very ill’.

‘It happens more than you’d think, and I am always desperate to correct the parents and thank the kids for taking notice, rather than shut them up and shame them for asking the most inoffensive question.

Throughout her illness, Grace has been supported by her family, some friends and some charities but she has also found a lot of help and reassurance through people she met on social media.

Grace’s brain scan in September 2018. The tumour had reduced (Picture: Grace Latter)

She adds: ‘I am extremely lucky to have the support of not only a loving and very close family, some amazing friends who check in with me regularly and are always primed to boost me up when I need it most, but also I have received endless support from The Brain Tumour Charity for the whole five years since my diagnosis, and more recently charities such as Clic Sargent and Maggie’s Centres.

‘My hospitals have also all been brilliant – and bear in mind, I have been in many hospitals, maybe six or so by my count – and my consultants are just incredible.

‘My support nurses offered me the utmost reassurance and kindness throughout my ‘journey’ with my tumour, and I really felt they were on my side.

‘If I’m feeling low, or worried about something, I can always call one of them, or even a friend at The Brain Tumour Charity, on the Young Adults Team.

‘Social media may have many faults, and the many platforms be very toxic places at times, but I have found so many friends and so much support through some of those mediums.

‘I also get a lot of young people come to me via Twitter or Instagram for help with their conditions or even their friends’ illnesses, as well as advice on being more comfortable in their bodies and living with their health issues.’

You Don’t Look Sick is a weekly series telling the stories of people with invisible illness and disabilities. Next week, we speak to Vickie who has severe asthma.





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