This lovely lady is Steph (you'll find her on Twitter here), someone I met online several years ago now, when I was first diagnosed with Coeliac Disease. When I first became ill with CFS/ME in 2014 she told me about her own experience with this condition, and she's been a great online support ever since! So when she asked is she could share her story for M.E Awareness week this week I had to agree - Over to you Steph!
'Are you just tired all the time?' A question asked by so many who mean well but don't understand the impact this question has on a person with M.E.
Simply by the use of the word 'just' you get that instant feeling of inadequacy. That you shouldn't complain or even bother to mention the condition because it's primary symptom is so nondescript and, here's the humdinger, 'everyone gets tired'! Six years on from diagnosis it's only now that I can comfortably talk about the emotional impact this God-damn condition has had on me.
Let's start the ball rolling with anxiety. At the lowest point the fear of having a day out somewhere could be crippling. Not because there was a concern about collapsing (although it was a concern) but because of the resulting malaise that would follow a few days later and potentially last for weeks. Then of course there's the weather. If it's too cold then joints will be in agony and if it's too hot you could expect blood pressure to plummet. But yeah, I'm just feeling tired all the time!
Now let's take a right turn onto self confidence avenue. Do I look sick? Can people tell I'm in a s*@t load of pain? Are my shaking hands visible? Do my clothes really look awful on me now? Imagine this every time you even think about leaving the house. Even those categorised as having Mild M.E (https://www.nice.org.uk/guidance/cg53/ifp/chapter/what-is-cfsme face daily challenges), and this adds another emotional dimension because those with Moderate or Severe ME can't leave their own house at all and can be bed bound for years.
This moves us neatly on to guilt. Social media allows you to build a community of fellow spoonies who truly understand what everyday life is like with a chronic illness. It's not difficult to express just how important an emotional lifeline this community is! However, with that you sometimes feel a pang of guilt creep over you. Imagine you're having a meltdown at the prospect of leaving the house i.e. being able to do something others with moderate-severe ME don't even have as an option. Do you have a right to complain? Of course you do. M.E is a cruel condition that affects each sufferer in a myriad of ways and it's perfectly acceptable to feel like you've been dealt a bad hand. It personally took me a long time to realise how ridiculous this emotion is and taught me to be thankful for my own small victories; anything from washing your hair to completing a yoga class is a victory.
Guilt very quickly becomes anger. Seething anger that some Dr's and medical professionals still dismiss that ME even exists, with some still spouting the drivel that it's a psychological condition! Anger at those who need the help of the state the very most being let down and having to prove their illness. NOBODY WOULD CHOOSE TO HAVE M.E. Anger that a number of people have reached a dead end and have had to fundraise and spend every penny their family has on private treatment here in the UK and abroad. Yes, seriously.
From anger we stumble synthetically drunk into depression. Many people with longstanding health conditions battle depression. In the really dark periods you think this will be your life forever. Get up, go to work, come home, eat, bed by 7pm. Impossible to see a light at the end of the tunnel, right? Well you do. You accept it for what it is, learn so many coping techniques that eventually allow you to lead some form of life again. This gives you back that feeling of control, it might only be for a while until you have another setback but that's ok. The point is mentally you deal with it in a healthy way.
Our final pitstop on the emotional rollercoaster of M.E is gratitude. This will sound strange to so many, both with and without long term health conditions. When you have options taken away from you or restrictions placed in your life it makes the little things seem much more like something to take notice of and be thankful for. Some examples? A bunch of flowers from a friend to brighten up your day 'just because'. A good book someone recommended to you because it's not a million pages long but is a good story to dip in and out of when your energy levels are up to it. A walk round a National Trust country home taking in the smells, sights and sounds without feeling nauseous or dizzy. I wouldn't wish ME on my worst enemy, even in its mildest form, but I will say it's made me look at life in a completely different way and believe it or not a more positive way. I wouldn't have said that when first diagnosed but I say it now as someone who, with lots of help, has navigated the journey in the right way for me.