Regardless of the age you get diagnosed, the first few signs of having axial SpA, or the specific ways that the condition affects you, every person with axial SpA has a uniting experience – the awkward, difficult conversation about the disease with a family member who just won’t get it.
So, how do you go about having these conversations – even if the person is loving, caring, and understanding – but just can’t wrap their head around the words – axial spondyloarthritis.
Remember your boundaries – put yourself first
Now, the vast majority of conversations you have about axial SpA are likely to be comfortable, if a little difficult to navigate should you be new to your diagnosis. However, should the conversations you have lead you to a place where you’re not particularly comfortable – maybe the person makes quick assumptions, or wants to know things that you’re not willing to tell them – put your boundaries in place. When talking about something as intimate as your health, you’re more than allowed to be in the driving seat and press the breaks when that works for you.
Questions are good, and they’re a sign of the person you’re telling trying hard to understand your health. On this note, it’s a good idea to be in a question-answering state of mind. Having some energy, not struggling with extreme exhaustion – and if you’re me, not hungry – is a good starting point for a fruitful, healthy discussion about AS.
If you can, avoid the long, long words
If you ask me how my axial SpA affects me, I could tell you that my non-radiographic axial spondyloarthropathy gives me significant chronic fatigue, coupled with costochondritis and frequent tendonitis. Whilst this is true, it’s not a very accessible way of describing my health conditions to anyone that isn’t already knee-deep in a decade of axial SpA research. So, explain things in a way that everyone can understand. It’ll make these new concepts less daunting to your loved ones, and also make it easier on your end.
Balance the positives with the harder news
When I was diagnosed with axial SpA at 18, a lot of my loved ones were concerned about my quality of life, and the ways in which I might be limited. In order to keep conversations about my health smoother, I make sure to stress that, with a great medical team, a good treatment plan, and a few lifestyle changes, I can live exactly the life I want to. It means I can deliver harder news from a happier perspective.
Saying this, this doesn’t mean the conversation has to be all sunshine and rainbows. It might not be, and some things are really hard to say (at 22, I still don’t like explaining I’ll have this condition forever). However, reminding yourself about the balance – and the fact that there are always good things – will help you and your loved ones find a happy medium in the mix of emotions that axial SpA brings.
Give them more resources
The NASS website and ActOnAxialSpA.com have a whole host of accessible, clear information from the axial SpA community and experts within them. Giving loved ones these resources means that they can learn at their own speed and take it upon themselves to support you if you’re not in the right space to teach them yourself. Such resources can empower both you and them in the journey of understanding axial SpA.