We have a routine that no one knows about, asks about, or understands.
My sick child looks and acts well the majority of the day because I work hard as hell during the night and early morning to manage her pain, administer medication and force feed her so she can endure the drain that comes with getting through the day.
One of the biggest disappointments of care-taking for my child with a rare, progressive disease has been how infrequently her care team listens to her voice when she says she’s in pain. It’s become critical as her Mum, to give voice every time she declares it. I investigate, advocate and consistently communicate her experiences as best as I can without living them myself. I do this alone. Very few people are hearing her or taking her lived experience seriously and so, I document and push until her voice is heard.
My daughter’s pain is real and yet I have to validate its legitimacy not only to specialists but to family who are skeptical, chalking it up to my over-sensationalization of her experience because ‘she looks just fine when I see her’.
She looks just fine because I’m up every 2 hours honoring her pain and coaching her through it. Her pain cycle is this:
- early morning nausea and heaving over the toilet;
- early evening ‘crash’ and inability to walk or move;
- leg, knee and hip pain every night that wake’s her up every few hours;
- upper back pain indicative of polycystic kidney disease.
She is, effectively, an elderly 5 year old.
I’m trying hard not to get frustrated by the cycle no one see’s or understands — but the sharp contrast from our experience to others’ perception of her wellness, is exhausting.
She is not well. She is not OK. It is getting worse.
Her pain is real and I have to fight to validate its realness, an obstacle I should not have to hurdle at every medical appointment and every update with family.
I’ve learned that I am on my own when it comes to managing the pain associated with her disease. I’ve also learned that specialists and family closest to her are often wrong and that I alone am advocating against skeptics who road blocking my ability to alleviate the absolute horror of pediatric pain.
So she and I press on, alone. We manage each wave of pain, alone. It’s unseen, invalidated and unappreciated. The pain cycle is such an enormous part of our day/night but the invisibility of it all has bred a resentment and isolation that’s caused sever social withdrawal because: as I sit her on a Sunday morning researching the aetiology and pathophysiology of pre-end stage renal disease patients, you’re telling the world that everything is ‘just fine’.
Denying her voice, her lived experience is an unexpected betrayal I’m working to reconcile has her Mum and care-taker.