Hands up, who’s had the shocked and surprised reaction of ‘but you don’t look sick!?!?’ when first mentioning your PsA to a new friend or acquaintance? We bet most of you have been on the receiving end of this endlessly frustrating response at least once since your diagnosis. It can be an incredibly hard thing to hear (particularly on a bad flare-up day) and especially when you know that the person really is just trying to make you feel better.
But living with an invisible illness like PsA doesn’t just involve combatting symptoms, flares and doctor’s appointments; a big part of it is trying to explain the impact of the condition to people who may not have even heard of it before.
We reveal some of the top misconceptions from people who don’t have first-hand experience of PsA… any of these sound familiar?
- Physical and mental health aren’t related: Did you know that people with PsA are twice as likely to suffer from anxiety?1 Given the stress and emotional burden of the condition, it’s no surprise that it can take a real toll on mental health (you can read more about the link here). People don’t necessarily make the link between physical and mental health, but in order to get the support needed to battle PsA it’s important for friends and family to understand the full impact that it can have. If having these conversations feels overwhelming, then starting with explaining your feelings in an email or a letter could be a good way of communicating how you’re feeling, or you could even start a blog to chart your journey!
- This too shall pass: Sure, it’s a comforting adage that applies to an awful lot of things in life. And as much as we wish we could say it confidently about PsA, at the moment there sadly isn’t a cure to help to wave goodbye to symptoms for good. Its permanency can be one of the hardest things to come to terms with about PsA (especially as you are coming to terms with the diagnosis), and friends and family might struggle with understanding this too. If you find yourself having to say no to specific activities because of your PsA, instead of saying ‘I don’t think my symptoms will let me today’ try ‘generally I think that’s going to be tricky because of my symptoms, but if that changes then I’ll absolutely let you know!’ There’s only a minor difference between the two sentences, but it could really help communicate the ongoing difficulties of living with PsA.
- Resting means you won’t be tired: Out of all the symptoms of PsA, fatigue is seen as the one with the second highest impact on day-to-day life.2 The link between the two isn’t fully understood, but one of the horrible things about fatigue is that it’s tricky to anticipate when it will strike, or how to keep it at bay. If you’re going through a particularly strong flare patch then caveat social plans by explaining that you may need to bail at the last minute if the dreaded f word strikes. It may feel like you’re being overly cautious, but setting the expectation makes it much easier to change plans last minute.
- Smiling means feeling no pain: People who don’t live with chronic pain are unlikely to really be able to understand the complexities and burden that it brings. When you haven’t experienced such consistent and intense discomfort then it’s difficult to see that it eventually stops being a focal point and instead becomes the background to daily life. It’s a near impossible thing to understand so don’t feel too mad at people’s ignorance… unless you’re a PsA Warrior of course!
Although it may sometimes feel like you’re repeating yourself, talking with your family and friends about your condition is the only way they’ll truly be able to empathise and help. To talk to people who just get it remember to chat to other people with PsA as much as possible; try visiting the PsA and Me Facebook, Twitter and Instagram channels.