M.E. myself and I

It is never not baffling that there are people who still imply, even unintentionally, that I am choosing to live my life restricted by illness.

I cannot tell you how insulting it is that some people still assume I have a choice over the severity of my illness.

If I am too upbeat, my reality is disbelieved. Too maudlin and my physical health gets attributed to a low mood, or it’s suggested I’m focusing too much on my symptoms and manifesting them.

I can’t win.

And so, because I can’t win, I’m learning to care less about trying to get others to see the truth of my reality.

It IS insulting for people to imply I have any choice over my M.E. Incredibly so. In-fact their comments do damage. But I have no control over how others perceive me. It’s been freeing to realise that.

If they decide that the version of me that was able to hold a 10 minute conversation with them, is the version I am all the time, so be it. Similarly, if someone wants to make assumptions based on a photo on social media, so be it.

I have spent years and countless amounts of time and energy trying to add a disclaimer to social interactions or activity. It’s time for me to stop with the internal battle, and the constant desire to make sure others understand that behind the scenes there is a very different story.

I’m learning that it’s so often a pointless exercise. No-one without lived experience of my chronic illness (and my particular case) can ever truly understand. That’s the way it is. The only way for them to truly comprehend this life is for them to live it, and I wouldn’t wish this on them, even if it’d save me from ignorant comments and constant misinterpretation.

I know the truth. That has to be enough. I can’t battle with the misinterpretations indefinitely. I have to try to find some peace.

Of course it gets trickier when applying this to medical professionals. We do have something to prove to them. I personally avoid seeing a doctor as much as possible. Their neglect has helped heaps with me being able to do that!

No amount of willpower or positive thinking will rectify the faulty ATP production within your body. No amount of wishful thinking will suddenly see your likely-mitochondria-failure reversed.

Please don’t let flippant remarks by others, or by articles written by those outside this community, about how they don’t let M.E. beat them, or how they don’t let it stop them from doing x, y, or z make you feel like you’re not doing enough. Please.

Because my goodness you are outstanding.

Don’t you know how gutsy you are to be trying to mould a life for yourself around your all-consuming health?

How brave it is to try new and different hobbies and interests to see if they’ll ‘fit’ better with the version of yourself you have to be now?

How much inner strength it takes to say “No” to an invitation you could possibly manage, because you already have a commitment for next week and doing both isn’t sensible or what’s best for your poorly body?

How courageous it is to get to a point where you decide the supplements and diets that could possibly help you aren’t the direction you’re able to go in right now?

How making your peace (even when it wavers) with the fact that this illness will likely always have an impact on your life in some way is one of the most incredibly valiant things you’ll ever do?

You’re doing far more than enough. And I’m happy to remind you of that if you ever forget again.

By other people’s standards my health is never Good. So it can be hard to convince them what I mean when I say things are Bad.

There are no symptom free days. Not a single one. Nothing even close to it. But it does take a lot for me to brand a day as Bad. Monday was Bad. This week is Bad. And it perhaps feels worse because there is no identifiable trigger. Only 5 days in and I know the course of things well enough by now to know that there is cause for concern right now.

It’s simply not possible to describe the worst of this illness. I do think it would help, even a little, for people to see it in a video or a photo; to see it all.

But the last thing on his mind when the going gets tough is to capture my suffering on camera. When he’s trying to help me up to get me to the toilet, neither of us are thinking “Hang on, set the camera up, so people can see what it’s really like for us.”

No photo can ever portray how bad my M.E. can get. And I know from experience that even those who’ve had to witness it for themselves forget the brutality of it.

Monday was horrific. No other word will do. This whole week has been the closest to how severe things can get for me.

This is not my normal ‘crash’. There’s been no paralysis. What a weird silver lining that is! Of course I am too sore/exhausted/heavy to move but it’s quite different from the paralysis I can get. So the signs aren’t all that reassuring if I’m honest. Because this is like Old School M.E. Debilitation. So weird and sad to be back in this place. Although I have never been well or been anywhere near to even working, I haven’t had solid bed bound days back-to-back for some time. (Mostly, I take to my bed for preventative rest these days; to save up energy or avoid the worst of the Post Exertional Malaise after a certain activity.)

The symptoms are crushing and for him it’s been heartbreaking. In sickness and in heath hey. We know of no other way. It’s a sorry state of affairs when the white noise produced by your noise cancelling headphones is too much to bear.

And yet there’s happiness and there’s been laughter when my personality pokes through the fog of exhaustion and malaise. He’s been exceptional, as he always is. All good relationships have an element of care or caregiving in them. For us, there’s a little more than in most relationships. And right now, even more so.

I never wanted him to be my carer but that’s essentially part of the package when entering into a relationship with me. And it’s where we find ourselves, particularly this week. He’s been incredible. Lifting my legs and swinging them back into bed. Holding my elbows to steady me as I ‘walk’ to the toilet. Or acting as some kind of outer skeleton to help me walk – hard to explain is that one! Holding my drink when my arms won’t move – thank goodness for flexible plastic straws. Checking my temperature. Choosing foods I might be strong enough to chew and swallow. Holding a bowl so I can spit my toothpaste into it while I’m stuck in bed. Arranging for others to Anna-sit when he cannot miss work. He deserves better than what my health offers, but so do I. Covid-risk or no Covid-risk we’ve had my mum come in this week.

All we can ever hope for, any of us in this boat, is that tomorrow may be a little bit easier.

Sending support and solidarity to you all.

It’s an honour to share the words of ‘Our Pippa’ on M.E. myself and I today. While I have no experience of the education system or employment whilst chronically ill, Our Pippa does and she has worked incredibly hard to share those experiences with us. For anyone about to start Higher Education or contemplating that next chapter, Pippa’s your Go-To-Gal.

Pursuing Education and Employment with a Chronic Illness

My name is Pippa, and I’m a writer and a blogger. I’m originally from Sheffield and now live in York, where I also work in communications consultancy in the charity sector. You can find more from me at Life Of Pippa, and on Instagram at @lifeofpippa. You can also shop my books and eBooks here!

During my first year of university, I was your typical student: studying hard, partying harder, travelling the country with various sports teams and for dance competitions, volunteering, working towards an honours degree and generally living my best life. By the same time the following year, I was struggling to stand up on my own.

I’d been battling for answers to my mystery symptoms since the age of 15, but it was only when my health significantly relapsed and I was struck down by an onslaught of debilitating pain and fatigue, that I was finally diagnosed with Myalgic Encephalomyelitis (ME/CFS).  Naturally, all this took place during my very first year of university, just as my young adult life was beginning.

With plenty of support and adjustments, I managed to continue my studies and graduate, but heaven knows it wasn’t without its challenges. Adapting to life as a newly disabled student, especially one with an invisible illness,I often felt lonely, isolated, and like nobody else in the world could possibly understand what I was going through. I distinctly remember being shocked at what little support was available and how much I had to advocate for myself, how hard I had to fight for what I was entitled to, and how exhausting the whole situation seemed. Being a student can be a tough time for any young person, but dealing with a fluctuating health condition adds an entirely new dimension of difficulty.

Despite all this, however, it’s safe to say that my time at university genuinely formed some of the best, most rewarding years of my life. Therefore, I decided to compile everything I’d learned into what went on to become my debut non-fiction book – University and Chronic Illness: A Survival Guide.

Before now, there was no comprehensive guide that chronically ill people in the UK could pick up if they were considering becoming, or preparing to become, students themselves, much less one written by somebody who’s experienced the process first-hand: somebody who knows that your reasons for going to university often stretch far beyond only the lectures and textbooks. 

Therefore, University and Chronic Illness: A Survival Guide is a chatty and relaxed, yet balanced and informative resource: one that’s sincere and realistic about the challenges of studying with a fluctuating health condition, yet one which will hopefully empower future students to make informed decisions and to really get the most out of their time at university. I’ve sharedmy own personal experiences and struggles that many others are likely to relate to, as well as universal tips and tricks that will hopefully make life a little easier for future students. Essentially, this book is made up of all the things I wish I’d had somebody to tell me back then.

It was also during my final years of being a student that my thoughts began to turn to what would happen after university life: how I would find employment opportunities that I could manage alongside my fluctuating health condition. I knew I was ‘well enough’to work in some capacity, but far from able to pursue a typical 9am-5pm occupation that involved leaving the house and being around other people every day.

Still adapting to the constraints that my health had imposed on my day-to-day life, back then I didn’t think I would have the luxury of choice over what job I went into; I thought I’d simply have to take whatever I could secure. By then, my self-worth had taken a serious battering. Everything had been overshadowed by my condition and the struggles of navigating an inaccessible society, and I was yet to fully realise that I still had all these valuable skills to offer.

Entering the world of work, and my experiences over the last few years, have been varied… to say the least! You can read about my personal employment journey in more depth in this blog post, but four years on since graduating, we’ve almost come full circle. I’m proud to say that I work freelance as a writer and blogger, and that I work for Astriid: a charity that matches talented chronically ill people with inclusive employment opportunities and supports them with their career development. In a way, we’ve almost come full circle. 

I sacrifice so much in order to pursue my career, and there’s so much I’m yet to learn. I’m constantly paranoid that people look at my social media and think that I have it easy, that everything gets handed to me, when that’s far from the case. The simple fact is that I’m a hard worker who’s learned to get a little creative in finding and pursuing opportunities. When amazing things happen, I want to feel that I’ve earned them.

All of that said, I really do love my work. I’m excited to check my emails and delve into new projects, and being able to do so in a way that works for me and my health is more than I ever could have hoped for. Given the current climate in particular, I’m not naïve to what a privilege that is. I only hope more chronically ill and marginalised people are able to pursue similar paths in the future, and rest assured, I’m doing what I can to help make that happen. If you’re currently seeking work, you may find my blog post on finding accessible work with a chronic illness a helpful starting point.

Above all else, I want to have an impact. I want to help other people get their foot in the door. I want to make sure that other chronically ill individuals also have a fair shot at chasing their dreams. It’s about time the world realises just how much we have to offer.

Thanks so much for reading! You can find more from me on my blog, Life Of Pippa, and on Instagram at @lifeofpippa. You can also shop my books and eBooks here!