The following article has been taken from the current issue of ME Essential magazine. For ME Awareness Week 2018 the ME Association has chosen to highlight the issues faced by people with M.E. in relation to employment and education.
We have received many personal stories in response to our recent appeal on these topics and will be publishing them over the next 10 days or so. We start with Pippa's account of life at university and in work and the importance of accessibility…
Young, vibrant blogger and freelance writer, Pippa Stacey, is pretty, happy and determined. She wrote our leaflet, University & ME, which is hugely helpful to those who desperately want to continue their studies despite being diagnosed with M.E.
Pippa says that people simply don’t understand about living with a disability. It’s all very well providing wheelchair access, but this is not enough to deal with the bigger issue of M.E.
This year she is working with Sheffield Theatre, where there is a big focus on accessibility, and helping to advise on what can be done to make the theatre more accessible.
In addition, Pippa works part time for Scope, who she champions as being an excellent employer for anyone in her situation.
She works from home and is allowed flexibility in her working hours so that she can take rests whenever required.
On bad days she is able to ask for help without the worry of being judged. It’s never a problem, she says.
Disabled does not mean incompetent
Occasionally Pippa needs to go the office, and, on these occasions, her employer ensures there is a quiet room for her to use when she is in need of a rest, and she stays overnight to minimise the impact of the travelling and meetings. They even ensure that the right food is available!
If Scope can help people with disabilities to function in the workplace, then why not all other employers? As Pippa says, disabled does not mean incompetence. People with ME can do a job equally well without physically going to an office. And people with ME most certainly can succeed.
Whilst at university, Pippa had to dramatically change her way of life to cope with her ME and continue her studies. Fortunately, her housemates were great and would spend evenings in with a movie rather than insist on going out partying every night. And, she says of her best friend that her quality of life would be nowhere near what it is without her.
The following text about Pippa’s life as a student was published online in the Huffington Post in an article she wrote about using mobility aids while having an invisible illness. It also gives a real flavour of how to deal with university alongside ME…
“There’s no ideal time to acquire a long-term chronic illness, but becoming disabled halfway through your undergraduate degree has to be up there in the Least Convenient Life Situations list.
“Adapting to the student experience whilst learning to live with a painful and debilitating neurological condition isn’t a walk in the park, especially when your illness is invisible. At times, looking like every other person around me was a blessing but, more often than not, it led to some really problematic encounters.
“Like others in my situation, I’ve experienced all the usual judgments: people telling me I don’t look ill, I’m too young to need a seat on the bus, I shouldn’t be so lazy… the list goes on. Sadly, I was prepared for these comments. Those with invisible conditions have been facing these attitudes for years.
“What I wasn’t prepared for was facing similar situations once I became a wheelchair user. Accepting that I needed a mobility aid at the ripe old age of twenty was difficult, but I naively consoled myself with the thought that at least now, maybe people would take my physical health needs more seriously.
“What didn’t cross my mind at this time, however, was that the girl sat in the wheelchair still didn’t look ‘ill enough’ to satisfy the curiosity of the general public. During my first trips out of the house with George (the wheelchair; you always have to name the wheelchair), I was hyper-aware of the people around me.
“I felt people’s gazes on me as they slowly looked me up and down as if trying to identify my ailment, and I felt their shock and disbelief as I crossed my legs and they realised that no, I wasn’t paralysed.
“The thing that really baffled them the most though, and continues to baffle people today, was when I stood up from my wheelchair to transfer to a seat. The impulse to make light of it and exclaim ‘I’m healed!!! It’s a miracle!!!’ tempts me every single time.
People who are ill aren't supposed to be smiling
“Finding humour in these kinds of instances is my coping mechanism, but often this gives rise to its own problems.
“I recall one situation where I was viewing flats with a letting agent and my parents. I’d stood and talked to the agent for a few moments without my wheelchair and without mentioning my disability, but then climbed in my wheelchair that my dad had brought around, ready to view a property. Afterwards, I found out that the letting agent had been utterly taken by surprise by the wheelchair ‘because I seemed so cheerful’.
“They couldn’t get their head around the fact I was silently suffering, because I talked and laughed and smiled like any other person.
“Another time, my best friend and I were out shopping, and laughing our heads off about something or other as she wheeled me around a gift shop. The shop owner took this moment to approach us and exclaim loudly ‘what happened to you then?!’.
“Now, this is a question I get a lot, and there’s no doubt in my mind that this is because people expect a funny story: I don’t look ill, so people expect a drunken fall on a crazy night out, or maybe some sort of temporary water-skiing accident. The problem is that I still haven’t found a way to answer this question without making the other person feel awkward.
“So, when I replied ‘haha, long-term illness!’ with a polite little laugh, they looked like they wanted the ground to swallow them whole. ‘Well’ they replied, gingerly patting my arm and trying to salvage the situation, ‘at least you’re still smiling!’.
“Because obviously, people who are ill aren’t supposed to be smiling or laughing or having a good time. Unless, of course, they’re one of the inspirational sob stories that healthy people use to make themselves feel better. But that’s another issue for another time.
“The point is that invisible illness is an ongoing issue that there can never be enough awareness of. Even when visible mobility aids are added into the equation, if you don’t appear to be miserable and suffering, or have an obvious physical impairment, people are inclined to doubt your condition.
“I hope with everything in me that one day this won’t be the case, and those with chronic illnesses, including those without mobility aids, will be able to sit in reserved disabled seats, or move their legs in their wheelchair or, God forbid, laugh and enjoy their life, without judgment from others.
“But, for now, we need to do all we can to help the healthy population to understand; just because somebody doesn’t appear to be ill, it doesn’t mean they’re not suffering.”
More information:
- Pippa wrote our leaflet ‘University & M.E.’ which provides some practical tips on survival at university and how best to manage studying with M.E. It’s available now as a free download until the end of ME Awareness Week.
- Pippa’s recent article in the Huffington Post ‘Employing Disabled People Like Me Isn't An Act Of Charity’ doesn’t pull any punches and will strike a chord with many.
- There is such an urgent need for greater accessibility in the workplace for people with disabilities like M.E. and Pippa wrote a similar piece for Scope.
- The ‘Life of Pippa’ is her comprehensive website, featuring very engaging blog posts including a current focus on ME Awareness Week.
- And, to top it all, Pippa manages a social enterprise scheme – Spoonie Survival Kits – which are a brilliant idea and have proved to be a great success. They help bring a little ray of sunshine to people with chronic illnesses including of course M.E.
Help Raise Awareness of M.E.
If you would like to join the ME Association and Go BLUE for ME Awareness Week, if you want to do something that will raise awareness of M.E., then there are several things that might help:
- Visit the Get Involved section our website for ideas, a campaign poster, and details of how you can take part in the campaign
Visit the JustGiving Campaign page which lists other events and activities you might want to support. You can also use this page to start your own fundraising activity, simply click on the orange ‘start fundraising’ button.- Contact our fundraising manager, Helen Hyland, if you require any help or support. She can also help you organise an event or activity. You can reach her by phone (01280 838964) or by email.
- For a list of the events taking place up and down the country before, during, and after ME Awareness Week, take a look at our Events Guide. And get in touch if you'd like us to feature your own event.
- If you are unable to organise something yourself, please show your support with any donation you can spare.
Thank you.
#GoBlue4ME
Text: BLUU47 £5 to 70070
So well written, thank you Pippa, I’ve saved this story for my daughter to see as her experiences are similar to yours.
Always smiley she has constantly had her experiences under-rated because she is a very positive person. If she’s nervous she smiles and laughs if shes in pain she smile’s, what ever is happening she smiles and laughs and it has affected her ability to gain benefits. The very first time a doctor came to the house to assess her for benefits she had already been off school for three years and was mostly bed bound. He wrote that she seemed fine, smiled and looked bright, he asked her is she could cook a meal and she said yes (If he had asked her if she could ski down a mountain she would have still said yes, in her mind she could do anything). He asked her this question and it was used to deny her the benefits even though she was under 16 at the time. We had to fight for several years to overcome that report.