My Dad was recently diagnosed with ankylosing spondylitis. Having to deal with this as a family and accept that there is no cure has brought us closer. At first I thought there would be a huge overwhelming feeling of hopelessness amongst us all, everyone giving each other sympathetic knowing looks. But it’s been the complete opposite.
We’ve become stronger and closer than ever as a family, we’ve had to learn to understand and gain knowledge and strength from one another. Don’t get me wrong, AS is always there; on weddings, birthdays, family holidays, parties, it is the unwelcomed guest to all the best days, a crushing reminder that things are not 100% okay.
Sometimes all my Dad needs is someone to say, “What do you need?” He doesn’t need uninvited advice on what he should and shouldn’t be doing, like everyone has suddenly become an expert on the illness. He’s heard it all before and quite frankly becomes annoyed.
Think about a time when you felt ill or in pain, did you want a load of people talking at you 100 miles an hour? Thought not. It’s okay to leave the person to rest or with their own thoughts for a little while, to collect themselves, to deal with it in their own way.
Pain changes a person, something I never thought I would have to face with a family member, let alone my Dad. He tries so hard to not allow his pain to stop him from doing anything, but I know it kills him and it’s up to family members and loved ones to say “enough is enough”. My Dad is a fighter and has undoubtable pride in himself, something I have always looked up to him for.
He is the stability, and having that being threatened to fall and cave means we have to step up and support him, whether it’s a simple text just checking in or a hug. It’s needed and makes such a huge difference to that person’s mood.
Regardless of the pain he is in, I’ve noticed asking my Dad questions and getting into a deep conversation about anything with him (from The Walking Dead to the meaning of the universe!) it distracts him and lifts his mood, even just for a moment, and it’s worth it. These moments not only save my Dad but they save me, they save me from thinking about becoming ignorant to it all and walking away.
My Dad’s new biologic medication arrived last week, we’re still waiting for a nurse to come and show my Dad how to use them correctly but things are finally moving forward. Maybe this is the answer for him, maybe it will take another couple of trial and errors to get there, but there is treatment out there, although there may not be a cure there is still hope of at least lessening the symptoms which is a step in the right direction.
Who knows, maybe in 10 years’ time there will be a cure, there’s always hope. Every time I open our fridge and see the box of injections I’m reminded of that and it’s something to always keep in mind especially on the particularly bad days.
Sophie is a filmmaker from Manchester currently working on a film about ankylosing spondylitis, you can get involved and follow the progress of this project here, as well as follow Sophie’s blog here.
