For those who don't already know, I have Cystic Fibrosis - a genetic lung disease which I was born with. The gene in my DNA affected by CF controls the movement of salt and water in and out of cells. Because of this, people with CF experience a build-up of thick, sticky and somewhat disgusting mucus in the lungs, digestive system and sinuses. It can also affect other organs in the body, leading to obstacles to overcome. So, as you can imagine, I need all the support I can get! Not just from medications and treatments, but emotional support and strength from family and friends.
As I spoke about earlier, supporting someone with a chronic illness may seem hard to some, but it doesn't need to be. It's just about being supportive, empathetic and most importantly, positive. All of those things put together, you can't go wrong!
Here are some ways to support someone with a chronic illness:
1) Be a good listener
Sometimes, someone with a chronic illness needs to vent. We could vent about having to have more blood tests, receiving bad news about our condition or moaning about the parking at the hospital. It may seem trivial or insignificant to you, but it's a big deal to us. A listening ear is what we need sometimes. I know it makes me feel better to have a rant and a rave when CF decides to be a naughty so-and-so.
2) Learn about the illness
Unless you're a healthcare professional, it's understandable that you won't know the ins and outs of someone's chronic illness. Over the years, I've tried to educate people about CF as much as possible, especially through my blog and social media channels. As they say, it's better coming from the horse's mouth. If you're too afraid to ask someone more about their illness, then do your research. Look at the specific illness's charity website as they can offer stories from people living with it.
I want people to ask me questions. However, I can understand those who fear putting their foot in it. But I would rather people ask me the right questions than make the wrong assumptions.
P.S. - don't rely on hospital dramas to know about an illness. Purely because 1) it's overdramatised to keep viewers entertained and 2) more often than not, they depict it wrong.
3) Offer practical help
Whilst listening and learning about someone's illness is good, offering practical help is a good way to support someone. Obviously, we all have a lot going on in our lives, but lending that helping hand can mean everything to someone with a chronic illness. A simple act of accompanying them to GP/hospital appointments, picking up prescriptions on their behalf or helping with household chores if they're struggling.
However, as much as it's great to help someone, don't be too pushy in the amount of help you're offering. You don't want to come across as overbearing, allow that person to have some sort of independence. Just assure the person with the chronic illness that they can call on you if they need you.
4) Don't engage in toxic positivity
There's nothing worse than someone saying to you "Well, it could be worse" when you get bad results from a medical appointment. It's an easy mistake to make. It's like you're trying to summarise things through an optimistic lens, but that doesn't help me. Another one I hate is "Look on the bright side!" no I won't thank you, Sandra.
Instead of saying phrases like that, try "I can't imagine how this feels, but I'm here for you" or "I want to support you" or "I'm listening".
These are some of the ways to support someone like myself with a chronic illness.
I know it's difficult knowing the right things to say to someone with a chronic illness, especially when they have a flare-up or they're unwell. But as long as you listen, support and generate positivity to that person, there's no reason to worry. I know that laughter and positivity help me through the toughest of times.
Hello Lucy, this is my first time visiting your blog. This post about Chronic Illness is something everyone should read. I am not aware about CF and I am glad to see that you are strong enough. I promise you to be a good listener and will learn more about the illness of other people. Let's be kind and generous. Thank you for putting this out.
ReplyDeleteFirstly, thank you so much for taking the time to read this post and comment lovely!
DeleteI hope this post has educated you more about my illness, Cystic Fibrosis. It's a learning curve for anyone who has never heard of it!
I agree lovely, let's be kind and generous!
Thank you for sharing your thoughts on this! I've often worried that I don't know the right thing to say but reading this is quite comforting.The idea of someone saying 'well it could be worse' seems mind blowing to me. I've learnt so much about CF through you! Continue to share your story girlie!
ReplyDeleteClaire.X
www.clairemac.co.uk
I'm glad you've found this post comforting in knowing what to say to those with a chronic illness or disability Claire. It's surprising how many people have said 'Well, it could be worse' to me in the past!
DeleteI'm glad to hear you've learned a lot about CF from me already lovely! I'm still aiming to educate as always! x
It's great you shared this, especially mentioning avoiding toxic positivity. I think it's so important to listen to people and be aware of how best to support them, and to take the time to find out. Being considerate is a great first step—much needed!
ReplyDeleteAbsolutely Molly, it's so important for people to listen and know how best to support that person with the chronic illness or disability!
DeleteConsideration is always needed for someone with a chronic illness! x
I love the tips you've shared in this article! I never understand why so many people want to tell other people how to feel about something they're not going through themselves, so I totally understand the toxic positivity tip!
ReplyDeleteThank you Angie!
DeleteIt's quite baffling why people want to tell others with a chronic illness how they should be feeling!
I loved learning about the many ways we can show support. Sometimes just being there to listen and educating ourselves can make a huge difference. Thank you for sharing Lucy!
ReplyDeleteAbsolutely, just listening and educating yourself is a great way to show support!
DeleteGreat tips as we're not usually aware of other people's trials so need to listen between the lines...
ReplyDeleteIt's so important to be aware and read in-between the lines x
DeleteYesss thank you for talking about toxic positivity!
ReplyDeleteRosie
https://www.loverosiee.co.uk
It's important to raise awareness of toxic positivity and how to be on the look out for it when speaking to others!
DeleteLucy, thank you so much for sharing this. As someone who has been living with a chronic illness for over 10 years now, it can get quite lonely to feel like you’re not understood enough. What I wish everyone did was to become more of a good listener and don’t pretend that the illness doesn’t exist and if I eat something specific, it won’t “make it worse," when in fact, some foods have the capability of making me sick in a few hours after eating! Thanks once again for sharing. I’ll definitely share this with my family and friends. - Penny | whatdidshetype.com
ReplyDeleteI completely understand what you mean Penny, sometimes I feel that sense of loneliness. Some people need to listen and empathise with what we're going through!
DeleteIt is the toxic positivity I cannot deal with. I just hate when people go “some people have it worse, better be thankful” phrase, it is so annoying. I live with a chronic illness myself and I just want people to listen and learn about the illness because it’s lonely. Thanks for sharing Lucy
ReplyDeleteAbsolutely Rayo, it's so important for people to listen and learn about our own illnesses as we need more understanding and empathy from others
DeleteSome great tips! Although everyone with a chronic illness experiences it differently, it's still important to get a basic understanding of and then listen to them personally x
ReplyDeleteIt's so important for others to get a basic and better understanding of your chronic illness and listen x
DeleteThank you so much for these tips! I don't have have the same illness as yours, but I do have bipolar disorder II. I hate toxic positivity the most because I feel like it invalidates my feelings and sufferings. Sometimes, I just want someone to listen.
ReplyDeleteToxic positivity is a horrible thing and like you said, it invalidates your feelings and how you're suffering.
DeleteI have a different chronic illness, Fibromyalgia, and I also have ADHD. Obviously my struggles will be different to your struggles but I think most of what you've said here is universal. Having people who will listen when I need to vent is invaluable. Having people who will run the vac round when I'm struggling is even more invaluable
ReplyDeleteI agree Laura, having people listen is invaluable to people like us with chronic illnesses. As you say, even doing things like putting the hoover around the house can be just as invaluable, maybe even more so.
DeleteThank you for sharing this Lucy. Someone in my life has a terminal illness and sometimes it's so hard to know what to do or say x
ReplyDeleteI'm so sorry that you're living with someone who has a terminal illness, sending you and them so much love x
DeleteI totally agree Lucy! I don't have CF, but do have endometriosis and having someone to vent to is so useful, as well as help during flare-ups. Thank you for sharing and spreading awareness x
ReplyDeleteIt's so useful to have someone to vent to when needed Caroline!
DeleteI’m new to your blog, so I didn’t know you have cystic fibrosis. These are great practical tips for anyone who may know someone with a chronic illness. Quite often people want to help but don’t know how to. And other times they end up saying or doing things that are not helpful and maybe even be (unknowingly) hurtful. This post is a good guide for them. Thank you for being a guide!
ReplyDeleteEven though I have a chronic illness, I sometimes struggle with what to say if someone else has a chronic illness too! You don't want to end up saying the wrong thing!
DeleteLiving with a chronic illness is tough, but having supportive friends and family makes all the difference! I totally relate to the need for a good venting session now and then. And yes, toxic positivity is definitely a no-go! Thanks for sharing these helpful tips, they're spot on! Sending you so much love, Lucy! xx
ReplyDeleteLenne | lennezulkiflly.com
It definitely does make the difference having supportive friends and family around you! A good venting session is always needed when things get too much! xx
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