In the face of a chronic illness, our friends and family can resort to simple solutions: just try and be positive they might advise. Look on the bright side. Focus on what you can do. It’s not bad advice, but it often comes across as out of place and hurtful for someone with a chronic illness like chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM).
The truth is that you can’t experience real joy or peace on top of misery. You can’t make cotton candy out of pain. Only by acknowledging and accepting the pain, the lost dreams, the embarrassments, the anxieties and fears – large and small – only by allowing all of them to be – is it possible to find peace and real joy in the midst of a chronic illness.
Acknowledging the dark side – which is, after all, there in spades – is what’s wanted and needed. Not to be drowned in it or amplify it but simply to acknowledge it – to give it room – is something our culture isn’t very good at. Instead, we’re saturated with “positiveness” messages, perfect social media pages, beautiful people, and inspirational quotes.
The focus extends all the way to illness. People with disabilities tend to be bathed in a kind of rosy picture in the media – they’re courageous warriors overcoming obstacles and inspiring others.
The messy stuff is always kept well out of sight. The day to day struggles to keep going in the face of a seemingly impossible and unwanted future – they are given little attention.
If only being “positive” was all it took. To process the emotional upheavals that come with a profound disability, significant amounts of anger, fear, and grief need to be allowed to surface, be acknowledged and sometimes expressed. These messy, uncomfortable truths simply can’t be wrapped up with a bow of positivity.
Acknowledging that dark side takes courage, both on our part and on the part of our friends and family. In truth, we are often not good at confronting these dark emotions. We’ve been taught by our culture to persevere, to rise above, to keep the stiff upper lip, and not complain. Instead of allowing the darker emotions to surface so that we can consciously deal with them, we often attempt to shove them down, pretend they don’t exist.
It’s healthy, natural and necessary to feel the negative emotions brought on by disability. It’s okay and even necessary to grieve, be angry, be afraid, to temporarily lose sight of hope, to be frustrated, and so many other things. These feelings are there! The journey to acceptance and transcendence of limitations and hardships requires that we acknowledge them. Our experiences deserve to be heard, known and supported.
If it’s difficult for us to come to term with these emotions how much harder it must be for those around us. Understanding the challenges that chronic illnesses bring requires putting oneself in another’s shoes – something that’s almost unconfrontable for most healthy people.
In place of that – in place of offering a real ear to listen to us – most people offer platitudes that they themselves, if they are honest about it, probably rarely follow.
Instead of being offered a safe space to share, be listened to, and express our uncomfortable truths, we often get easy solutions that serve to even more illuminate how much our friends and family do not get it – often deepening the isolation that is already present. So, what starts as a loving gesture to help us be joyful again can end up as a signal for us to hide our true struggles and feelings and isolate ourselves further from those around us.
When faced with such simple solutions, the sick person ironically often has to become the helper, the mollifier, the one responsible for ensuring that their friends/family don’t suffer too much distress (!). “I’m fine”, we say….”Don’t worry about me”….
Then, hurt by the lack of understanding, we can sometimes get angry and detach ourselves further from our loved ones – further deepening our sense of isolation and making the problem worse.
People who offer simplistic, inadequate solutions may be producing hurt, but they’re generally not doing so intentionally.
Somehow, for our own good (and others) we must find a way for forgive and move on. In Toni Bernhard’s “How to Live Well with Chronic Pain and Illness“, she recommends three practices for dealing with family/friends who just don’t get it:
- Practice equanimity – notice that the upset you’re having is not with what the person did, but with what you think they should have or should not have done. If you’d expected them to act exactly the way they did you likely would not be upset (!) It’s your desire or unfulfilled expectation that they understand you better, or be more considerate, or be more helpful, or whatever it is, that is primarily causing your pain.
- Practice mindfulness – Instead of getting stuck with your upset, anger or frustration – address it mindfully – notice that it’s happening. Notice that it often rises and falls in waves. (Notice you may want to jump on the wave sometimes!) Then reflect on the many different possible reasons your friend or family member could have for behaving the way they did.
- Practice wishing them well –– not an easy thing to do and something that will likely take practice but practicing wishing those who let you down well will make it more difficult for you to feel anger or resentment towards them.
Forgiveness is always a blessing – an undeserved blessing – that comes from grace and in its purest sense does not require a response. It is truly a gift – a gift which works both ways – and potentially leaves both sides in peace.
Of course, it’s also very good and helpful to focus on the blessings we still have, to hold onto hope, to not give into resignation and bitterness and believe in ourselves. Both the appeal to what’s positive and the negative emotions that come with having a chronic illness are part of the package. We are emotionally complex individuals, worthy and valuable just the way we are.
No matter what your experiences with disability have been, remember that you are not alone. We must support each other and those around us. The ME/CFS community is strong and full of people who understand your struggles. If you feel misunderstood and invalidated, it is one place to share that and get relief.
How do you cope with “toxic positivity”?
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