To be young, wild and free… Often a person is diagnosed with chronic illness when they are young, such as teens or twenties, aka in the “prime” of their life. This not only means you tend to be the youngest person in the doctor’s waiting room by a generation or two, but it also means your life dramatically alters when you are expected to be full of energy, plans, and ideas of how to save the economy and planet.
No, behind the social media smiles and dreams for the future: someone with chronic illness is getting out of bed each morning with extreme difficulty; popping multiple pills alongside avocado toast and charcoal activated* soy lattes also served in avocados; getting through the day, sometimes with a trip to the doctors instead of happy hour; and being able to compare experiences of meds and blood tests with our grandparents rather than comparing work and tinder stories with our friends.
We can feel cut off from our healthy friends, who may not understand that their suggestions of yoga or the latest health food trend is not going to perform any miracles on our aching, despairing bodies. Sometimes we feel left out, as our lives take a separate path. And when social media is used to celebrate wins, we worry we are divulging too much info by sharing our chronic illness journeys instead. But we are still living our best lives, even if it means more early nights than the average twenty-something.
*Apparently charcoal activated food/drink can block some medication from working (including the contraceptive pill) so maybe we don’t drink them…
You are assumed to go out partying every weekend
Sometimes, you sleep all weekend
I love late nights and lots of drinking – but I know I can’t handle it every weekend. Sometimes, you can’t even get changed out of your pyjamas. These days/weekends are totally okay and even recommended – you can still be a fun person, but you also have to know when to say no. Sure, your peers might find it a little odd when asking how your weekend was you reply with “Great! I did nothing!”, but you don’t have to prove your wild self to anyone. Save it for the times that matter.
You’re expected to have a degree (or two) and be on the career ladder by age 25
Not everyone needs to take the same path, and it’s okay to go at your own pace
Illness can make you feel like your life is put on hold. You have to delay studies, or quit work, and your days are spent at the doctor’s. When watching your friends’ and classmates’ lives play out on social media in full glory, feeling stuck in a rut is not uncommon. But, even the healthiest of young people aren’t always jumping head first into a glamorous career after graduating. Truth is, this expectation is placed on everyone, but everyone should only go at a pace right for them. To be happy is the most important thing, and what is right for others is not necessarily right for you.
You should travel the world
Sometimes, going to the local shop is a wild adventure
You’re not tied down to a career, or kids, so the only sensible option is to spend money you don’t have on amazing adventures to mix with locals and integrate yourself into other cultures. There is no reason chronic illness should prevent you from travelling, as long as you carefully plan your trip, but you can also be excused if you take full opportunity of home comforts for self care.
You should get excited when you encounter a new love interest
You get excited when you encounter a great, understanding doctor
When you’re young, your life should not all be about dating, but there are plenty of (questionable) options to entertain you. When you’re chronically ill, however, the dating scene can be rough and unsympathetic. So those butterflies of excitement? You might find them more common when you begrudgingly have to meet a new doctor, but lo and behold: they listen, they care, they understand, and they know what they are on about.
You’re supposed to be spontaneous
You can’t make plans unless you can schedule a rest day (or few) after
Last minute plans are often the best memories – but when you know a day or evening of fun can leave you in bed for a few days after, or you need to rest up before exerting yourself by being social, sometimes you have to say no to the last minute invites. Instead 3-5 days notice ahead is much more welcome. It never feels good saying no to people, but if you’re already in your pyjamas you’re not going anywhere.
You should be thinking about settling down and starting a family
Children just might not be for you
If your chronic illness still permits you to have kids, it doesn’t necessarily mean you’re gonna. When I think about the extra pressure pregnancy and then raising children will put on my body and myself, well, I feel my ovaries shrivel up. I get exhausted just by watching the British TV show Outnumbered, a show about a family with energetic kids (energetic putting it mildly). When young, even though you’re supposed to be travelling and having a career and also buying a house and winning the Nobel Peace Prize – the talk of children is also there, and many of your classmates may already have their own family. If you don’t want kids, you shouldn’t have to explain yourself to anyone.
You should have a flawless body
You have battle scars
And you’re proud of them! Even invisible illnesses are not 100% invisible – chances are your chronic illness has left subtle or not so subtle traces on your body. For me, I have a really fun scar running around one side of my torso – which I used to be very self conscious about – and I have plenty of little scars from blood tests and catheters. Not to mention the weight gains and losses, rashes and bruises, hair loss and spots that come either from the illness or the medication. Of course I can never rival models, but that’s okay because my damaged, unreliable, unpredictable body is mine and mine alone.
Shout out to every chronic illness warrior rocking their broken, beautiful bodies – keeping doing you! ❤