This is a photo that my husband took me of this afternoon. Lying in a darkened room, wearing an eye mask because even the light coming through the curtains was intolerable. I’m wearing headphones and listening to wave sounds because my wee neighbour is bouncing outside on her trampoline and the noise of it is painful. I was nauseous, experiencing muscle spasms, pain and feeling too weak to sit up or hold up my head.
I wanted to share this photo in the interest of honesty and openness. We’re all very guilty of carefully curating the image we present on social media, me included. I started my blog because I wanted to share the realities of living with M.E, to help raise awareness. I must admit, I still don’t like being too negative so I often try to downplay things or sugar coat them, which kind of goes against my reasons for starting this whole thing in the first place. I want people to truly understand what this illness is.
So, today I wanted to share this little dose of reality with everyone. Yesterday I went to yoga. It’s a class that is specifically for people with mild - moderate M.E. It’s all very gentle, done either lying down or sitting. Then I rested all afternoon, before watching Eurovision in the evening. That’s it. Didn’t run a 10k, didn’t do any heavy lifting, didn’t go out drinking til 3am. Just gentle yoga and Eurovision.
I know that lots of the people following me on social media also suffer with M.E or other chronic illnesses themselves, so they will know exactly what I mean when I say I crashed. This afternoon I crashed hard. It’s actually the first time in a while that this has happened to this extreme, and the worst of it passed quite quickly. That didn’t really make it any less unpleasant at the time unfortunately.
The truth is, we never really feel well. I honestly don’t actually remember what it’s like to feel 100% well anymore, it’s been that long. We have days that are better than others and days that are worse. When you do see us, it’s because we’re having a better than usual day and we’ve more than likely spent days carefully resting, in anticipation of spending time with you. When we do see you we, like everyone, like to put our best foot forward. We do our hair and make up, we smile and laugh and enjoy feeling normal for an hour or two. But we’re smiling through fatigue and pain, and all the while trying to keep a check on how much energy we’re expending so that we can try to temper the payback later. The horrible bit that no one else sees.
To my healthy friends and family, I know it’s sometimes hard to truly get what we mean when we talk about payback, or what a ‘crash’ looks like.
This is it.
In the build up to M.E Awareness Week, the advocacy group ME Action Network have asked the online community post on a new topic every day this week, to raise awareness of the ways in which the disease affects every day life. The topic for today is how M.E affects marginalised groups. Turns out I had too much to say for an instagram caption, so I decided to do a quick blog post about it.
I recognise that as a white cis woman I occupy a position of privilege. I have no trouble accessing healthcare and I don’t face prejudice (beyond the usual doubt that surrounds M.E). I previously earned a good wage but since I’m now unable to work, I’m completely financially dependent on my husband. Our financial situation has certainly changed since I became ill, but ultimately, we are comfortable and secure. I know that many are not so lucky.
In the arguments and debates that surround M.E, something I think gets forgotten about is just how easily this illness can drive people into poverty.
It’s true that some people with M.E are still able to work (although I know from experience that it comes with a huge physical sacrifice), some are really not well enough to work but sadly do not have the luxury of taking time off or even going part-time. Then there are the many who are too sick to even leave their beds, let alone maintain any kind of employment.
If you are too sick to work, then reasonably you would expect to be able to access support from the government, and yet I know from my own experience and from my discussions with other M.E sufferers that it is extremely difficult, if not impossible to qualify for any kind of benefits. You are met with doubt and suspicion at every step of the way. Too sick to work, and yet apparently not sick enough to qualify for financial support.
What happens then to the people who don’t have a partner to support them? Who don’t have parents on hand to help out with the cost of the food shopping, or the people who are parents themselves and have children to provide for? Who do they lean on when their disease makes it impossible for them to maintain full time employment, but the government refuses to support them? Where do they turn? Living with a chronic illness is stressful enough without the added worry of how you’re going to pay the rent each month.
To make matters worse, there is little to no treatment or support available on the NHS. Many people are forced to go private for treatment or tests, with many spending a fortune on supplements just to try to maintain the tiniest sliver of health or function. I really think people underestimate just how desperate people with M.E are to get well, and how much money they are willing to spend trying anything and everything just to get back to their lives.
Unfortunately, there are always those who are willing to exploit this desperation for their own gain. Enter the snake oil salesmen. You’d be amazed how many private ‘treatments’ there are available for M.E - usually involving some kind of therapy or ‘retraining’ of the mind in exchange for a large payment. Maybe it’s worked for some people, but honestly the ways in which these treatments are marketed to prey on seriously ill people who are at their wit’s end and out of all other options just doesn’t sit right with me.
That’s why I believe it’s so important to make noise and advocate for change. I know it probably gets tiresome for some of my friends to see me constantly banging on about this all over social media, but it’s the only kind of activism I can partake in and I truly believe that if the M.E community continues to bang our collective drum loud enough, then someone has to listen eventually and perhaps things will finally change for the better.