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.