IS IT OK TO NOT BE OK?
As someone who is both a transplant recipient and a chronic illness sufferer, I’m confident talking about many topics which affect our unique group. The hospital visits, medical appointments, the medications, the insomnia, the pain, the poking and prodding – and the loneliness.
Being chronically unwell, whether you’re a transplant recipient or not, is lonely. Sometimes it can feel as though no-one understands just how hard these cards that we’ve been dealt really are. Being told to “just stay positive” can grate when you’ve heard it for the 300,000th time and sometimes even more so when it comes from someone who hasn’t had to deal with anything anywhere near what you do.
Then, when your friends seem to disappear and the invites to go shopping or just to hang out, the loneliness clutches tighter around you – to the point where you just don’t want to leave the house that day. That day becomes two, then three, and before you know it, you’ve stayed in your pyjamas for a week and no longer care – because no-one else seems to either.
Is it ok to NOT be ok?
Yes. Yes it is. You’re completely entitled to feel like it’s you against the world and that nothing and no-one will understand or be able to help. However, (and I say this as someone who has been there and still goes there) don’t let this feeling rule your existence. There are definitely people who understand what you’ve been through and what you’re going through.
For me personally, I’ve met some huge health challenges, some of which I rarely speak of, and hearing that a test result hasn’t come back as expected, or breaking yet ANOTHER bone has always been part of my existence, both pre and post-transplant, and I cry, I scream and I hate every fibre of my broken, imperfect mess of a body. And I hide. I go home and I spend the rest of my day feeling miserable and sorry for myself, because IT’S NOT FAIR. I’m not ok, and no-one can do anything to make me feel better, because I know, NO-ONE understands.
It’s ok to not be ok. But the thing about this is – it shouldn’t become your whole life. It shouldn’t consume you, even when it feels like it will. I want to say to just let it go, but that’s not being authentic to you, or to me – I wouldn’t take that advice, and nor should you.
I know it’s not easy to take on another diagnosis, or something else going wrong, and you’re entitled to hate the world, but give your brain time to process the information that you’ve received, sleep on it if you have to, and find that part of you that ALL chronic illness sufferers possess – that incredible inner strength that we dig deep for on a regular basis at times – and focus on that.
Then talk to someone, be it a friend, a family member or a health professional – talk to someone, because two heads are better than one, and a problem shared is a problem halved, and I could go on with clichéd reasons for why talking is so important, but I’ll stop there.
And whilst The Sweetest Gift isn’t somewhere where you’ll be able to scream and cry and throw things (not all the time anyway), it will be a place where there will be a group of people who DO understand, who HAVE been there and face similar challenges to you every day. Our restaurant will be a place where sharing ideas, feelings and experiences will be the norm. It will be a place to face the problem of social isolation amongst transplant recipients and people with chronic illnesses and turn it on its head.
No-one else has seen this problem, or tried to solve it, but we have and we will, because we live it. We understand. That’s where our #sweetnesswithsubstance hashtag came from. We’re not just creating sweet treats for others to enjoy, we’re also creating a sweeter life for those that we’re supporting.
Now, RU Ok?
If you or someone that you know needs help, please call Lifeline on 13 11 14, BeyondBlue on 1300 22 4636 or Kids Helpline on 1800 55 1800.
