Living with debilitating daily pain is one of those things that’s difficult to fully grasp if you or a person you love hasn’t experienced it. That’s not to say that ‘no one understands’; I know people who are sufficiently empathetic that they’re able to put themselves in my position and gain some insight into what Chronic Daily Migraine & Fibromyalgia have done to my life. However, for me personally I have to draw the line at being told how I should feel about my current situation; I resent it, especially I must admit, when coming from people who have never experienced anything like what I’m going through.
Being told to ‘think positive’ is irritating for me; what does it even mean?? I have a genetic neurological disease that won’t go away just because I think happy thoughts. I appreciate that how we think about our world has a big impact on how we feel about it. But such phrases as ‘you need to think positive!’ or ‘don’t be so negative!’ are unhelpful and sometimes offensive. For one thing, unless you’re my husband, one of my parents or my best friend, you really don’t know the current version of me well enough to comment on my thought processes. Furthermore, the abovementioned phrases imply that I am somehow responsible for my disability and that I’ve brought the massive challenges and difficulties it involves upon myself by not being cheerful enough. That’s an irritation I could well do without. It also makes me wonder – if my disability were visible from the outside, would I still be on the receiving end of ‘think positive’ lectures? Perhaps I would. Aggravating banality and ill-thought-through words probably find their way to all chronically ill or disabled people at some point.
Both hope and gratitude are vital elements in my way of coping with the Chronic Life I’m forced to lead at the moment. I try each new treatment hoping that it will have an impact. I try to make sure that there are dates on the calendar for me to look forward to and hope that I get lucky and the date/event in question coincides with a few of my rare functional hours. I make a conscious effort to find the little moments of joy that make this life bearable. I remind myself to feel gratitude, despite the pain, for all the love and support around me.
I’m also entitled to feel low, exhausted or hopeless sometimes. This is a reasonable response to debilitating pain, not me being ‘negative’. I could of course pretend to feel positive 24/7 and fall silent when I’m struggling emotionally but really, why should I? My silence spares other people the awkward experience of listening to me without really being able to help much, but does me no good at all. Saying something sucks when it does, does not a ‘negative person’ make! I feel strongly that Spoonies should be able to discuss the realities of their lives without being labelled as negative. I don’t dump my emotional baggage onto anyone who’ll listen; I am considerate of other people’s needs and situations. I just wish that people IRL and especially on social media would show the same consideration and stop to think before hurling ‘be positive!’ at people who are doing the best they can with a really difficult situation.
Are you a Spoonie who has been told to ‘think positive’? How did you feel about it?
Wishing you good luck and happy days,
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