Lena Dunham has opened up about living with chronic pain.

“When I think about the hardest part of chronic illness, it’s actually not physical pain, or sitting in too many doctors’ waiting rooms or even being in isolation for long stretches – it’s actually having to shift gears,” the 35-year-old wrote on Instagram. “Sometimes, more than I’d like tbh, I have to change it up at the last minute because my body isn’t participating.”

Dunham wrote that she had to remind herself it’s OK to shift gears by later wearing the dress she planned for an event she couldn’t attend. “Let’s call it a ‘better late than never’ party. Or a ‘control is an illusion’ festival. Or just a gorgeous night in, exactly like I planned it…” she wrote.

The actor, writer and director has Ehlers-Danlos syndrome (EDS), a rare condition affecting connective tissue. Anyone who struggles with persistent physical pain will likely relate to Dunham’s post – this idea of having to “shift gears” last minute and change plans because you’re just not feeling up to it.

Chartered psychologist and author of The Leader’s Guide To Resilience, Dr Audrey Tang, describes how one of the most difficult things about living with chronic pain is its invisibility. “Without it, we can’t understand how it must feel to somebody,” she suggests. “It’s going to keep you awake, it’s going to keep you feeling anxious because you don’t know what your body’s going to do. If you’re not sleeping, that has a lot of knock-on effects because that, in turn, can produce more of the stress hormone cortisol – it makes us irritable, it affects our relationships and all of that.

“Because no one else can see it, no one else really understands just how awful living with that can really be.”

The psychological impacts end up culminating on top of actually living with chronic pain, and being “worried about whether your body’s going to want to stop or not going to play ball with you”, she adds.

“We don’t like to be a burden on other people,” says Tang, so cancelling plans last minute or having to go home early – potentially breaking up the evening for everyone else – can be psychologically draining. “I can see why people then say, ‘You know what, I won’t bother’,” she adds. “And then people stop asking you, because you say no all the time – it’s this cycle we get into, and it’s really sad.”

While chronic pain and how your body feels on a certain day can’t always be managed, Tang does have tips for coming to terms with having to regularly shift gears.

“The first thing is to tell people that you love, really try and get them to understand what it’s like,” she advises. You might find it’s then easier to change plans last minute if your friends and family know the reason why.

Tang’s next tip is all about negotiation – perhaps offering to host at yours, particularly if you don’t think you’re able to leave the house. She recommends saying something like, “Could we maybe start at mine and then take it from there?” – giving you the option to do as much or as little as you feel able to. Alternatively, Tang says: “Having short bursts of seeing people can be really good as well… Does it have to be a whole long evening out? Could it not be a half hour? Then we choose to go on to something else, or end the evening there – and that way the person doesn’t feel like they’re ruining an evening.”

Finally, Tang recommends putting together a ‘crisis kit’ for when you do go out. “Something where you can write down: these are the painkillers I take, this is what I need, this is who to ring if I’ve got a problem, this is how I need you to help me if I’m feeling down or whatever it might be,” she says. “In a way, that gives you ownership of the symptoms you’re trying to manage. And by telling other people in a more instructive, cognitive way, they don’t even need to understand it – they can just see it and be able to respond in that particular way.”

Tang praises Dunham for being open about her experiences because, “It makes us hear about it,” she says, “and what will happen – hopefully – is people will say, ‘Oh my goodness, I feel that'” – making chronic pain more visible.