It can’t be easy being with someone who has ankylosing spondylitis, to love every part of them, including the disease. We all feel sorry for the AS patient sure, but what’s it like for their partner? The person who lives with them day in-day out, sleeps beside them every night, the partner who knows each and every way the disease affects the person they love most in the world.
It can’t be easy can it?
Well I wanted to know what it’s really like for them, so I asked my rock, my light, my love, my partner Mark. And this is what he said…
Jas: What were your first thoughts when I was diagnosed with ankylosing spondylitis?
Mark: Oh I don’t know darling, it was a long time ago.
(At this stage, I should point out that Mark is clearly not in the mood for this “interview.”😂)
M: I guess I was upset for you. I was angry that no one had worked it out before then, that it took so long.
(He’s referring to my nightmare year of diagnosis. You can read more about that here.)
M: And I guess a bit pitying for you.
(He notices my rather shocked, unimpressed expression before realising his mistake.)
M: Is that bad?
J: Yes Mark, that’s bad…I don’t wanna be pitied.
M: Okay sympathetic then, is that better?
J: Marginally. Does my illness impact our relationship in any way?
M: I mean, I have to hear you moaning about it. (He’s not wrong there, I do moan a lot when I’m flaring!😂) But no, I don’t think it really affects us as a couple, apart from when it puts you in grumpy moods, which is completely understandable. I don’t think we’ve ever let get in the way of our relationship. It doesn’t define you, so it shouldn’t define us.
J: Does my ankylosing spondylitis impact your daily life at all?
M: No, not really. Apart from having to find hiding places for the codiene that is!
(I should clarify here – I’ve had issues with codiene dependence in the past. I’m doing really well with it at the moment, but I still have the odd moment. So Mark becomes the guardian of the meds until I really need them.)
M: Other than that and rubbing deep heat into your back at various times of day, and making up hot water bottles every now and then, my day-to-day is the same as it’s always been. We’re quite lucky I suppose that your AS is under control at the moment, so we don’t need to go to the doctor’s every day, or go to hospital appointments every week. It could be a lot worse couldn’t it?
J: Do you ever get annoyed with me, because of the AS?
M: No of course not, that would really make me an ******** wouldn’t it! No, I mean I get a bit annoyed when you do things you shouldn’t do, like when you’re having a flare up and you still go to the gym and push yourself. Or if you lift something too heavy. But it’s up to you isn’t it? It’s your body and it’s your life, I can’t tell you not to do things, I can only say “I don’t think that’s a good idea, ’cause you’ll be hurting later”, and let you decide for yourself.
J: What’s the worst part about my ankylosing spondylitis?
M: When I can see you’re in pain, but I can’t do anything about it, I can’t make you better. That’s pretty hard to see.
J: How do you think my AS has changed me?
M: Um…I don’t know. It’s made you grumpier at times.
(Okay, so he keeps saying I’m grumpy, but I’ve got good reason for that sometimes you know? Especially when I’m having a really bad day with the AS like this.)
M: It’s made you a bit skeptical of the medical profession, but that’s okay, I can see why. But I’d say it mostly makes you wanna go out and do loads of stuff.
J: Do you think it’s changed you at all? Like your outlook or anything?
M: No, not really, I try not to think about it to be honest. We’ve just gotta get things done quicker than if we were younger and healthier I suppose. We’ve gotta see the world before I die and you end up in a wheelchair, don’t we?
J: Wow.
M: You wanted me to be honest!
J: Yeah, but ***** ‘ell mate! Okay, do you think you do too much around the house? Do you ever think I don’t do enough?
M: No I honestly don’t at all. I think we both share out the housework well, neither of us does more than the other. Like when you’re having a flare up, I’ll take on more ’cause physically it’s a struggle for you to do certain things. But then the week after, when you’re feeling better, you’ll do more. So it all balances out really. But I won’t lie, I’d always want you to do more, ’cause I don’t wanna do it! But I’m lazy ain’t I?
J: Yeah you are – joking! So mate, have you ever thought “**** this mate! I didn’t sign up for this!”?
M: No darling, I’ve never thought that. I’m not saying it’s easy at times by any means, like you’re a nightmare as it is without your AS added to the mix!
J: Rude.
M: Let me finish. But with all that, I’m so proud of you and the way you tackle whatever’s thrown at you. You don’t let the AS stop you from doing anything, so I never feel like I’m missing out on stuff. If anything, the AS makes you more determined to do things that prove you can do everything you want to. So no, I’ve never thought “**** this” and I can’t imagine I ever will. There’s more chance of you thinking it about me!
J: True dat! What would you say to someone who’s partner, long-term or short-term, has recently been diagnosed with AS?
M: Oh God. Well obviously it depends on how bad their condition is. You manage yours well, but that doesn’t mean others do, so they could be in a completely different situation to us. If their AS was the same level as yours, I’d say “No problem mate, you just gotta put up with some grumpiness and rub deep heat into her back at times!”
J: So you wouldn’t tell him to run a mile?
M: No, not at all. If you really want something to work, it’ll work.
J: Are you worried about what might happen in the future?
M: Nahhhh, I’ll probably be dead by the time your AS gets worse, IF it gets worse…Or at the very least, I’ll be too old to push your wheelchair, so you better get a battery powered one!
J: Nice!
M: Well you know me. I try not to worry about anything. What happens, happens. There’s no point in worrying about what hasn’t happened yet.
The wise words of Mr Mark there folks. Have I mentioned today what a good egg he is? I feel bad for him sometimes, of course I do, but in truth we’ve got it easier than most. My ankylosing spondylitis is thankfully very manageable at the moment, so there’s not a lot I can’t or won’t do. I might not be the same girl he met nearly 10 years ago, but we can blame that on life and time, not just the AS. Will my disease become a burden to both of us in years to come? Who knows, only time will tell. But right now, we’re just enjoying our life and time together as much as we can, doing all the things we want to do together! It’s often easy to forget the partner behind the patient, so let’s not! Love them and tell them that just by them being there makes everything that little bit more bearable. Laters Taters x
Laters Taters is a blog written by Jas and Mark to share their adventures and their journey with axial SpA (AS), check them out here!
