I don't know about you, but sometimes I feel that a chronic illness can be a bit overlooked by people around me. I'm not saying they don't care, but it's either no surprise or a big surprise when I get sick(er), because the chronic illness is present all the time. It's not like breaking a leg or getting diagnosed with something. Those are unexpected things, often met with a lot of shock and rallying. (And in no way am I trying to compete in the Oppression Olympics when I write this.)
Because I'm not "well" all the time, it might be a bit run of the mill for others when I get sick. But for me, it feels like the wheels have fallen off - I'm made to relinquish the life that's been going so well, for a short time at least.
I've not been well for a while now, and I've been a bit miserable. I've had time in hospital, and time at home alone recovering. It can be lonely. What has cheered me up is the thoughtfulness of friends. I don't know whether it's been because I've been more vocal about being unwell this time, or if I've surrounded myself with kinder people, or if I'm more popular (ha!), but gosh people have been lovely. So lovely, and I'm very thankful to have them in my life.
Here are some nice things to do for your friend whose chronic illness has exacerbated. I've appreciatively been on the receiving end of all of these and so I can highly recommend doing these!
Cook your friend a meal.
Sandra did this for me a few years ago and it was so lovely! She brought different courses into hospital, and I had some to take home with me. Most meals were healthy, and there were some treats in there too! Better than hospital food!
Talya from Feeling Ostomistic suggested:
"Make them a dish/meal that could take a couple of nights cooking off of their minds. You don't have to see them if you know they are wanting privacy, but can leave it on the doorstep and send a message saying "I've left something on the porch for you, when you're ready for visitors let me know"."
Tell your friend you're thinking of them.
A phonecall, text or Skype chat is often welcome. I've had people text me asking me to call them when I'm up to it - this has been nice, because it means I can call them back when I'm up to it.
"I genuinely appreciate a card/letter- snail mail. It picks me up so much to think that someone has taken the time to write, put a stamp on and mail it. I've been blessed to have this happen when I've been struggling hard, but have been trying to keep up a good front."
A visit is also nice, if your friend is up to it - Jarrod came to visit me in hospital and it waa a nice way to break up naps.
Buy/bring your friend groceries.
Camille bought me a heap of soft foods to eat when I had my wisdom teeth out, and it was seriously a lifesaver. I had gourmet packaged soups, sweet potato, avocado and icecream! She said she chose things she enjoyed when she was unwell.
Even carrying shopping bags is a help - I've had a hard time holding things, and so if someone else carries the bags, it's a huge help.
Put together a care package.
One night, I got a lovely surprise when Clem Ford came into my hospital room with a giant bag of gifts from the Lady Star Dream Team (Clem, Karen Pickering, Catherine Deveny, Amy Gray, Pip Lincolne, Jamila Rizvi, Van Badham and Chrissie Swan!). I had mentioned to Adam that I'd like some green tea the previous night, and he smiled at me and said "someone will bring you some tea tomorrow". He sneakily coordinated her visit.
I didn't expect to receive such a bounty of gifts - 10 types of green tea, plus a beautiful cup, a dressing gown, a book, and things for when I'm better - tea towels, an apron and a candle. Oh my heart! Plus we had a lovely chat and laugh. Now I'm home, every time I look at the cup and the tea towels, I think of how lucky I am to have these lovely friends.
Love, Emma sells premade luxury care packages - I bought one for Michelle and she loved it - see below. Michelle told me she has hung the dressing gown up behind her door to look at and remember the gesture.
Lend out your TV subscription service.
My uni friend Jane gave me her login to Stan TV. It changed my life. I binge watched two seasons of UnReal in three days - what a clever, intriguing show. While I've wanted to catch up on a little writing and admin, my body says no, so TV series on my laptop or iPad it is.
I'm signing up to Stan myself now.
Ask what you can do to help.
I've had a lot of people ask me if they can get me anything - and I asked for some soft socks which a friend delivered.
I do need help doing things. I've asked Adam for help of course, and he's been wonderful. He lets me sleep, cooks dinner, brings me meals in bed. Last Saturday morning, he made me chocolate pancakes for breakfast, and served a hot chocolate in a flask because he knew a cup would be too hot for my sore hands to hold. It's the little things ❤️
"If they (like me) don't get out much and if they're using a wheelchair that needs pushing offer to go for a drive somewhere and go for a walk and you'll push them."
Don't try to compare or give advice.
One thing I've noticed is when I write about the pain aspects of my condition online, people give me advice.
Have a cold/hot/salt/bleach bath. Take an antihistamine. Do wet wraps. I'm doing all these already.
I've tried so many things to help me over the years. And a lot of this advice is given by people who don't have Ichthyosis. It's so hard to write about this because it's all been well intentioned, but I'd rather just well wishes than advice.
The same goes for trying to compare. Sure, empathy is welcome, but the pain I feel doesn't really equate to the pain from a gym session.
Respect your friend's boundaries.
Respecting our boundaries might be not asking too many questions about specific illness type symptoms, or it could be around not making our loads heavy with your stuff.
On the day I went to hospital, Daily Life published a very serious article I wrote the day prior. It was about the Japanese disability murders. My editor told me it was the top story on the site for two days. So many people were sharing it, tagging me in, and trying to engage me on the discussion on Twitter. It was great to see people finally talking about but I didn't feel up to talking about it while I was so unwell.
While I was in hospital, I also had people asking me to share their crowdfunding cause, read their articles, tell them my opinion on a disability issue, and received a callous email from a parent of two disabled adults. No.
Social media is my lifeline when I'm unwell. I didn't want to stop talking to people, I just didn't want to get into heated debates about the worth of disabled people's lives. So I called for that. People respected it. They sent me funny pictures. My editor even removed my Twitter handle from the article. And I was so grateful.
I'm still not taking on any writing and activism stuff until I feel up to it.
Empathise that this really sucks.
I am lucky enough to know a few others with chronic illnesses and disabilities. Without burdening them, I've been able to rant about the pain or the delay in my essential creams coming from the hospital pharmacy, or the damaging perception of the "healthy disabled" (when, for me, that's not the case at all).
And when I've not been as unwell as now, I've been there to listen to their rants too.
Surprisingly, a text from a friend saying "this really sucks" is as comforting as "get well soon". Acknowledging our reality is nice.
Pip Lincolne also wrote a great piece suggesting things to say to someone who isn't having such a great time.
Have you got any tips to make a difference to a friend with a chronic illness?
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