The Invisible Man- Shining a light on the extraordinary caregivers behind the chronically ill
THE INVISIBLE MAN
“100 out of 100 relationships that involve caregiving fail.”
It’s very rare these days that I see something which makes me irritated enough to write a blog post about it. But here we are. I came across this little pearl of wisdom from Dr Phil via my friend @Queenof_thebookworms who is also a fellow chronic pain sufferer on Instagram. (Side note- she’s really cool- you should definitely go follow her if health related positivity and book love is your thing.) And I was stunned. Not only because this is blatantly UNTRUE, but also because a well-known public figure who is renowned for their psychological opinion is basically sending the message to future caregivers that their relationships are doomed.
It made me think about my own relationship, and how things between us have changed since my diagnosis.
People don’t see it, but it’s constant, the way in which Mark cares. For every page of words you read from me, there is the bottle of water he made sure was on the bedside table, for every selfie there’s the shower he supervised so I didn’t collapse, for every flare I talk about he’s the one doing the running around and making sure I have what I need. He’s the one getting up at 5:30 and working fourteen-hour days so we can afford to live, he’s the one who makes me laugh when I’d rather cry, the one who holds me when even my hair hurts, and I want to give up on life entirely. If it wasn’t for Mark, wasn’t for the love he has for me and his phenomenal stamina and selflessness, there would be no books with my name on the cover, no Moosings of Moo, no blog posts, no graphics, none of it. He is the behind the scenes worker that never gets the attention they’re due, and who does the job not for recognition, but out of unconditional love.
So… What I guess I’m trying to say is, FUCK YOU DR PHIL.
The thing that’s remarkable about Mark (pun intended) is that he never really signed up for this. When we met, I was a perfectly normal university student with big dreams and a crazy ass work ethic that made me feel unstoppable. He fell in love with that girl, with the Kristy who existed before my diagnoses. And yet at only 22, when it all went tits, he didn’t give up, and thank God he didn’t listen or take note of quotes like the one stated above. He rallied, he fought to make us a life, and he stood by me despite the fact he had to take over a whole new role in our relationship, a role that required more of him that it did of me.
It’s true. Our relationship after I was diagnosed shifted dramatically, the balance of power changed, the amount of work that fell on his shoulders became a hell of a lot more. Yet, he rose to the challenge, he never complained, and he let me grieve in the way I needed to for what I had lost.
Being with someone who is always sick sucks, but it’s also brought us a kind of intimacy that we would not have had otherwise. He knows what I need just by looking at me now, knows how I’m feeling without me saying a word. We make the best of the bad days, and appreciate the good days, and we always, always laugh.
Do I wish I wasn’t sick? Of course, I do.
But at the same time the entire experience has proved to me just how much love can change and motivate a person, can cause them to adapt. If I’d never got sick, I never would have discovered how deep the love between me and my partner went, and I also never would have realised how having a caregiver makes the person who needs care inclined to keep striving forward, not just for them, but for both of us.
It makes us feel invulnerable in a way, knowing that if we’ve been through this together, and can laugh and love through it all, that we can handle anything.
So maybe, maybe not ALL relationships where one partner becomes a primary caregiver survive, but the ones that do are often, and certainly in my case, a hell of a lot stronger than when they started out. Just as we need to make the invisible illnesses that affect us so much visible to the public, we also need to commend the men and women in our lives who make things easier, less depressing, and more enjoyable.
We need to shine a light on the invisible caretakers in our lives, so the world knows that becoming responsible for someone with chronic illness doesn’t have to kill the romance, or the love in your relationship, and it certainly doesn’t mean that your future together is doomed.
Do you have an incredible partner who deserves recognition? Write a shout out to them in the comments and I’ll post your responses on my Facebook page throughout the week!
Let’s make those invisible partners in our lives visible!