Are You OK?
Current research is showing that people with persistent pain and chronic illness are as much as four times more likely to experience anxiety and depression than your average Joe. With an estimated 50% of Australian’s experiencing a mental health condition at some point in life, it’s almost assured that we spoonies will be locked into a battle with our minds at some stage. When illness and disability are measured in years or lifetimes, it’s often the mental and emotional toll, the most invisible of all the invisible ailments (and we know just how well hidden they can be), that causes the most damage. The road to an eventual diagnosis can be long and all-consuming, but the soul-crushing complexities really sink in when the lack of knowledge, information and treatment pathways start to become glaringly obvious. Friendships and relationships often fall away over time, and the social isolation gradually begins to co-exist with the physical disablements. The financial burdens are high, and unemployment is far from infrequent, leaving the door wide open for a complete loss of confidence and identity. Throw in a disorder (or three) that’s notorious for its unpredictability and fluctuating symptoms, and stress and anxiety are only human.
"The support for those suffering chronic illness is greatly lacking. Care fatigue ensues amongst friends and family as time passes and a patient either doesn't get better or, gets worse. Chronic illness doesn't fit into the normal sick paradigm associated with acute illness. There is no easily identifiable illness or injury, no clear and distinct treatment path and frequently no identifiable resolution after which the patient can resume their regular role in society. This leaves chronic illness patients vulnerable both medically and more importantly psychologically." Living with Bob (Dysautonomia)
You may have seen that today is R U OK? Day in our neck of the woods. It’s by no means a day for the complexities of chronic illness, and we certainly shouldn’t be relying on this one day of the year to roll around, but it’s a heartfelt reminder that we need to start and keep up the conversation. When illnesses drag on, and particularly when there is no definite endpoint in sight, it’s so easy for us to stop asking that vital question. Chronic illnesses demand that we find ways to cope. When we can’t afford to break down and punch the walls on the daily, when we put on a smile, and we have a laugh, and we decide that we don’t necessarily want to look how we feel, and we keep moving forward despite often wanting to just curl up in bed, it’s easy for people to fall into the trap of thinking we’ve got it all under control. But underneath that outer layer or two, I know so many are using all their might just to hold it together. Keeping it together for years on end is hard, folks! So many are frequently forgotten until a full-blown crisis occurs, but it doesn’t always take a health flare for things to start unravelling. When are our spirits ever immune to the toll that suffering takes?
There’s a considerable focus on the benefit of a multi-disciplinary approach to chronic pain, and I’ve always been the first to sing my counselling psychologist’s praises from the rooftops (ever so loudly). Bringing her and her counterparts into the mix was more or less a prerequisite in the lead up to and following the surgery for my spinal cord stim, and it didn’t take long for me to name her as a crucial piece of the jumbo-sized puzzle that is pain. Even on the days where I’m feeling a-ok, she has a knack for pulling me up on the most minute details, foreseeing storms so far off in the distance they’re but a mere cloud, and preventing so many of them from ever getting the chance to form. It goes to show just how important the mental health aspect of chronic illness is, but all too often, my fellow spoonies are not only forced to weather those storms, but to endure them without the able forecasters like Sam to reassure them that the sunny skies are never too far away.
So what to do when there’s a lack of Sams in one’s life? The gorgeous Sarah from Stronger than POTS wrote a neat little blog post a while back, with all the nitty-gritty about how you can best show up for a loved one with a chronic illness, and the most effective ways of keeping that dialogue open. You can have a mosey through her wise words below.
"When someone tells you they’re tired, sometimes you need to look beyond their answer. Are they tired? Are they physically tired and need some sleep? Or do they in fact need you?" @PJ_Palits