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Supporting A Loved One Living With Chronic Illness

by InvisiblyMe
A photo of two men, both wearing glasses, one in a blush mauve coloured shirt and one in a dark jumper, are hugging. Underneath is the post title: Supporting a loved one living with chronic illness.
A photo of two men, both wearing glasses, one in a blush mauve coloured shirt and one in a dark jumper, are hugging. Underneath is the post title: Supporting a loved one living with chronic illness.

Living with a chronic illness isn’t easy, but the journey often isn’t easy for the loved ones or carers involved, either. It can be incredibly difficult if you don’t know how to help someone else or if you’re scared of saying the wrong thing. The one thing you really want to be able to do when supporting a loved one – to make them feel better physically – isn’t something you’re going to be able to do at all. It’s hard for those with a condition to even know what to ask for sometimes; when we don’t know what we want or whether to ask for support, the gap can widen.

So how do you support a friend, partner, family member or other loved one living with a chronic condition or disability? This post takes a little look at the subject.

Supporting A Loved One Living With A Chronic Condition

If you have a loved one with a chronic condition – be that any kind of illness or physical disability – then although you can have an idea of what they’re contending with, neither you nor anyone else will ever really know what they’re going through unless you’ve experienced it for yourself. When someone has a chronic condition, getting good support from loved ones can make a considerable difference.

If you don’t know much about their condition, then how can you best know how to help? If you are reading this and are someone living with a chronic illness, then it is kind of preaching to the choir. Anyone not experiencing similar to what you’re going through won’t be able to really empathise or ‘get’ what you’re dealing with. But loved ones can be open to learning more, getting a feel for what helps and what doesn’t, and generally just get more involved if that other person is comfortable with it. There’s help and advice for caregivers available via local charities, GP practices and various sites online, such as this website here among others.

Those with chronic conditions likewise need to be aware of the position their loves ones are in so the two can meet mid-way; by learning and sharing and open communication, it should make life just a tiny bit easier for everyone involved.

Do Your Research

If you’re not sure about the condition your loved one has, it might be an idea to read up on it. If they’re comfortable to talk about it, you could see if they’re happy to answer your questions. Getting a feel for what the condition is, what symptoms people might deal with and so on can give you a better idea of the bigger picture. You’ll never know exactly how they’re feeling but having some knowledge of the condition will bring you a step closer to understanding them and being able to better support them.

Be Wary Of Making Suggestions

Many with chronic illness could probably reel off a list of the worst things you could say to them, and they’ll have been told too many times about the things people think they should do, should try, should eat, in order to alleviate their health condition.

They know their bodies better than you. Their experience is uniquely their own and they know their condition in a way nobody else can unless they’ve experienced it for themselves.

Suggestions are typically not wanted. It’s worse than that because they can actually be quite offensive, belittling and insulting, even when they weren’t intended to be. Unless suggestions are specifically asked for, you might want to stick to making suggestions about a Netflix show to watch or good cake recipe to try.

Be Their Biggest Believer

Many with chronic illnesses and ‘invisible’ disabilities will have had a hard enough time feeling like medical professionals, bosses or society at large don’t believe them, so they certainly don’t want to feel their loved ones doubt them, too. When someone is living with a very real condition, a little more belief, validation and encouragement from those around us can be welcome. Take note of what they’re saying when they talk about their condition or how they’re feeling, and ask for clarification if you’re unsure of what they mean. Have faith and trust in their abilities and encourage them if they’re excited about doing something new. Show that you’re always behind them and have their back, no matter what.

A photo of two women on a grey sofa hugging and smiling. One looks to be in her 30s or early 40s, and the other is perhaps her 70s, so they could be a mother and daughter or a woman with her carer.

There’s No Rush

Everyone is different; some may talk openly about their health issues and the symptoms, while others may have spent years trying to keep them all a secret. Not everyone wants to open up, and that’s okay. There’s no rush. Try not to back someone into a corner or make them feel guilted into telling you something they don’t want to, such as by suggesting that they don’t trust you just because they won’t tell you all about their illness. These things can be very personal and private, not to mention how someone may find talking about certain problems embarrassing. Opening up and letters others in can be an emotionally draining, nerve-wracking experience.

Easy does it. Even a little patience can go a long way. Let them know you’re there and non-judgemental if and when they want to tell you anything. Let them know that it’s okay if they don’t.

It’s Okay Not To Be Okay

There seems to be an unspoken pressure in society to be constantly busy, to push through the tough times, and to portray yourself as a bundle of positivity around others. It’s true that some individuals may find negativity to be something they can’t deal with because they don’t want to be dragged down by a friend telling them that they’re struggling once in a while, and that’s their problem. Nobody is okay all of the time. The genuine friends and loved ones will be there for the bad times and the tough days.

Let your loved one know that it’s okay if they’re not feeling okay. Living with chronic illness or disability can be a mess of emotions; just when you think you’ve got your head around acceptance, a tidal wave of regret and frustration will hit you in the face. Some days are just too much. You don’t have to push through it or pretend every time that you’re chipper. Sometimes we need that down time so we can take some time out, rest, recuperate, feel awful and start working our way back to baseline. There’s no time limit for this, you don’t have to suddenly bounce back. Let your loved one know that it’s okay to not be okay, and that you’re there for them however they’re feeling.

Understand Ableism & Disablism

The difference between ableism and disablism is one that’s important to recognise. Ableism is about discrimination in favour of the able-bodied, with dominant attitudes that devalue or limit the potential of people who have a chronic illness or disability. The able-bodied are favoured above the disabled, who’re seen to be inferior in their worth. Disablism is when there are a set of assumptions or practices that can promote the unequal treatment of people just because of an actual or a presumed disability, leading to the stereotyping, prejudice and “institutional discrimination” worldwide against those with any form of illness/disability.

Negative stereotypes and discrimination can be reinforced in subtle ways, even with throwaway comments like “everyone feels tired” or “you’ll be fine” or “just think more positively”. Such things undermine and deny the experience of the chronically ill or disabled individual and can be very hurtful. In turn this leads to more stress, in a negative knock-on cycle with symptom flare-ups, potentially social isolation, feelings of not being worthy and so on.

It’s good to be aware of the language used when talking to someone with a chronic condition. As a loved one, you’re unlikely to use anything like “dumb”, “lazy” or a range of other insulting terms, but the less obvious, unintentional word choices could still be harmful.

If they tell you about a comment they’ve received from somewhere else, it may sound like an overreaction to you, but consider what it’s like from their perspective. This may be one comment in a long line over the years. They’re not overly sensitive and they don’t need to ‘toughen up’. They need to be understood, viewed equally and without judgement, and taken seriously.

A photo of a man wearing pyjamas and women on a bed. The woman is trying to talk to the man and has her arms around him. The man looks frustrated or sad, with one hand up to the side of his face. In front of him is his wheelchair.

Show Compassion & Empathy

Showing compassion to someone isn’t about giving them suggestions for things to try to help their condition or minimising their feelings. Showing compassion is about just being there, showing kindness and being non-judgemental. You can also show compassion through actions and helping with their needs, whether they need help with an ice pack or some painkillers, or just being with them when they’re having a flare up and sitting with them so they’re not alone. Being empathetic in such an instance will mean acknowledging that you don’t necessarily know exactly how they’re feeling. It’s about showing that you appreciate how rough it must be for them, validating their feelings, and letting them know that you’re there for them.

♥ ♥ ♥

The world of chronic conditions complex, where each experience is unique. The symptoms, how people cope, how they feel, what management techniques work for them, whether they want to talk about what they’re going through and the type of support they might need will all vary, not just between people but even over different days.

There’s only so much you can do for a loved one with a chronic illness or disability; you can’t make them all better physically, no matter how much you wish you could. But your support will be priceless for them.

Learn, keep an open mind, be non-judgemental, show compassion, act with kindness, and it will make the space with your loved one a warmer, more supportive place to be.

A black scroll divider.

Caz  ♥

[ This is a collaborative post ]

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44 comments

Julia Tannenbaum April 16, 2021 - 4:32 pm

This is such an important post and really excellent advice. Thank you for sharing and continuing to educate!

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InvisiblyMe April 16, 2021 - 10:44 pm

Aw I really appreciate that, Julia. I’m glad you liked the post. Thank you ???? Have a lovely weekend! x

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Frank&Tina Lyon Jr. April 22, 2021 - 11:13 am

Invisibly me, thank you for your words of advice and empathy for others. My wife, bless her beautiful heart, has a chronic illness. I can only hope and pray that the Dr’s her in S.C. will get her well enough to play with the kids as that is her wish. I try so hard to help and I just go and breakdown sometimes, cause I do love her so much. It’s just hard to see her go through this. We need awareness like this. Thank you.

Much Respect…Frank Lyon Jr.

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Sandee April 16, 2021 - 4:57 pm

Well done and many just don’t get this at all. If you do all these things the person with the illness and you will do far better. You’re most wise.

Have a fabulous day and weekend, Caz. ♥

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InvisiblyMe April 16, 2021 - 10:45 pm

Absolutely. I think it’s a two way street built on patience, compassion & trying to see the situation from the other person’s perspective. Thanks, Sandee. I’m glad you liked it! Have yourself a lovely weekend ???? x

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johnrieber April 16, 2021 - 5:16 pm

Very well done.

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Anjali April 16, 2021 - 6:08 pm

This article play so importance at this point of crucial times. I agree with all these points. Thank you so much Caz.

Love and hugs ???? Anjali

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InvisiblyMe April 16, 2021 - 10:48 pm

I hope it can be useful, even as a reminder. It’s not easy for those with conditions or those that care about them. I’m really pleased you liked the post, thank you, Anjali. Sending my very best wishes to you & your family as I know this has been a very tough time lately for you all ????

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InvisiblyMe April 16, 2021 - 10:47 pm

Thanks, John! ????

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Masha April 16, 2021 - 7:22 pm

This is so helpful, I know someone, I still don’t know what exactly she has, sometime I think she doesn’t want to talk about it, so I’ve tried to be supportive without asking too much. Thank you for this important information. xoxo

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InvisiblyMe April 16, 2021 - 10:52 pm

With your consideration for others, patience & kindness, I think you would be a wonderful friend to anyone, this person you know included. It’s not always easy to tell if someone wants to talk about it but is hesitant to, or simply doesn’t want to at all. I think all you can really do is let them know you’re there, you care and that if ever she does want to talk then she can. Just being there is what’ll make all the difference in the world.

Have a lovely weekend, Masha ???? x

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deepanilamani April 16, 2021 - 8:22 pm

Hello from me Caz. Excellent article and “So Very True” of all what you have said. I am very well aware too of Mental Health as “I too know what it is to have Gone Down” But somehow I have worked hard in overcoming and getting to become positive. This is because somehow it is not a physical problem and This is exactly why I have got into Prayers to Receive “The Gift of Healing” in order to Give out Healing Energies much as possible. I do Hope at these times of Health issues, Your are keeping Ok? I sincerely Hope so. In the meantime Thank you for visiting My Blog and always encouraging by Appreciating what I write and post. Many Blessings of Love, Light and Healing Energies coming Your way. Lots of Loving Hugs. Take Care. Love Me <3 <3 <3

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InvisiblyMe April 18, 2021 - 4:24 pm

Thank you for the sweet comment, Deepa, I really appreciate that. I think your Healing Energies work is a wonderful thing to be able to do, helping our minds and souls even if it can’t heal the physical body and our health conditions. It’s also encouraging that you’ve overcome much to become more positive in your outlook and in your life, and I think that can give many of us hope when we feel far from positivity. Sending my best wishes, I hope you have a lovely week ahead ???? x

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Laura Beth April 16, 2021 - 10:23 pm

Excellent post!

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InvisiblyMe April 18, 2021 - 4:25 pm

Thank you, Laura, I’m glad you liked it! ???? x

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Kritika Panase April 17, 2021 - 5:19 am

Happy to read this post, really humanity behavior. At the time of illness really need a someone support to get out of from stress also.

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InvisiblyMe April 18, 2021 - 4:26 pm

You’re right, stress can become a considerable issue for many when dealing with illness, and a little support from those around us can make a world of difference ????

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B April 17, 2021 - 7:47 am

BE there. And learn.
I agree with all.

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InvisiblyMe April 18, 2021 - 4:50 pm

Absolutely ????

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Jo April 17, 2021 - 8:05 am

Great post, especially the bit about suggestions. I wrote one about supporting people with mental illness. It’s tough to be a carer but one of the kindest things you’ll ever do.

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InvisiblyMe April 18, 2021 - 4:51 pm

Supporting those with mental health issues will have crossovers for sure, and those important parts – being there, patience, compassion – will make all the difference. You’re right, tough but kind and worth every moment ????

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doublegenealogytheadoptionwitness April 17, 2021 - 12:08 pm

Your post is both very helpful and helpfully humbling.

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InvisiblyMe April 18, 2021 - 4:52 pm

Aw thank you very much, I’m glad you like it ???? x

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The Oceanside Animals April 17, 2021 - 7:03 pm

Charlee: “Also, sit in their lap and purr and make muffins at least once or twice a day.”
Chaplin: “Yeah, that is always a big help to people. We highly recommend doing it for your loved ones.”

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James Viscosi April 17, 2021 - 7:36 pm

You guys might want to specify that this only works if you’re a cat.

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The Oceanside Animals April 17, 2021 - 7:40 pm

Charlee: “How do you know? Have you tried doing it?”

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InvisiblyMe April 18, 2021 - 4:53 pm

Charlee’s right. I hooman purring in my lap & making me muffins wouldn’t be that bad a thing. I could put up with it ????

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annieasksyou April 17, 2021 - 10:56 pm

So many valuable and thoughtful points here, Caz. I have learned from this post, and I’m grateful that you took the time— and energy—to pull it all together.

Annie xoxo

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InvisiblyMe April 18, 2021 - 4:54 pm

Aw, that’s very kind of you to say, Annie. I’m really glad you liked the post and found it useful in some way. I hope the week ahead treats you kindly ????

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Gemma April 20, 2021 - 12:03 am

Such an insightful and well executed post Caz. Thanks for sharing these valuable points.

Gemma x

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InvisiblyMe April 20, 2021 - 4:21 pm

I’m glad you liked it – thanks, Gemma! x

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Despite Pain April 20, 2021 - 3:50 pm

“Be their biggest believer” – it sounds like it should come naturally but many people find that their nearest and dearest don’t believe them. That must be so hard to cope with.

This whole post is fantastic, Caz. Well done.

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InvisiblyMe April 20, 2021 - 4:22 pm

You’re right, that must be so, so difficult on top of an already challenging time when living with illness/pain/disability. It’s bad enough to face specialists that don’t believe you let alone loved ones. I’m glad you like the post, Liz. It’s great to see you back – hope your internet is sorted & that little Kip is keeping you out of trouble!  ♥ x

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Frank&Tina Lyon Jr. April 22, 2021 - 11:17 am

Again. Caz. Thank you. Pray for my beautiful wife and family.

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InvisiblyMe April 22, 2021 - 2:36 pm

It must be incredibly difficult for you – you love her, you want to help, but you can only do so much. Just being there by her side will be the most precious thing you can do. I’ll keep you all in my thoughts and I hope your wife gets the care and treatment she needs.????

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nickdaws April 22, 2021 - 11:44 am

Excellent article. Thankfully I don’t have a chronic condition myself but I have a close friend who does. These points certainly correspond with what she has told me, especially the advice to be wary about making suggestions.

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InvisiblyMe April 22, 2021 - 2:42 pm

I do think the advice thing can be quite a big one, even if the person giving it unrequested doesn’t realise it. It can be done with the best of intentions (not always, but often if it’s from loved ones) so I think it’s good to have honest discussions about how suggestions can be irritating at best and offensive at worst. Thanks for the comment, Nick, I’m glad you like the post! I hope you’ve got a bit of sunshine in your neck of the woods this week ????

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mentalhealth360.uk April 22, 2021 - 2:23 pm

Thank you for this excellent information. I couldn’t have written it better myself (the other Caz). Sometimes I think people don’t realise that just because you’ve had a chronic illness for many years, it doesn’t get any easier, it doesn’t get any better or any less painful. And don’t get me started on the amount of suggestions I get, even after all this time because you name it, I’ve tried it! Rant over 😉

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InvisiblyMe April 22, 2021 - 2:44 pm

You’re right, it doesn’t get easier or any less painful. I’ve certainly been made to feel, even inadvertently, that I’ve been sick long enough now that I should have the hang of things, I should be able to get back to normal life again and I should be dealing better with it all. That’s not the case. A chronic condition is just that – chronic, ongoing. Pain doesn’t go away either. You might find managing things a little easier, but you might not. And the mental health toll can be considerable, even after years of living with a condition(s). And yep, I’ll second that on the suggestions – no thanks! I hope the week’s treating you kindly, other Caz ???? x

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Shell-Shell's????tipsandtricks August 2, 2021 - 7:17 am

Thank you for this post! I am a caregiver, and my parents are getting older,

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InvisiblyMe August 8, 2021 - 6:32 pm

My parents are getting older too & I personally find that hard to come to terms with. I’m glad you liked the post, thanks lovely ???? xx

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SS December 2, 2021 - 11:09 am

Absolutely loved reading your post. I’ve had so many things said to me. “Don’t you think you’re exaggerating your symptoms?” “You should be in a happier mood.” It’s laughable really but very aggravating also. Support would have been nice but *shrugs*

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InvisiblyMe December 2, 2021 - 2:18 pm

I’m glad you like the post but I’m sorry you know all too well what ignorant comments are like. They’re really hard to deal with and respond to, aren’t they? You just want to scream or explain or cry or walk away, but the hurt that you aren’t getting the support you want and need will remain whatever you do. I’m always around if ever you want to talk by the way, just drop me an email. What I will say is that at least you will be a better friend and a better stranger to anyone in need because of your experiences, and whatever is said to you that smacks of ignorance is never a reflection on you either. xx

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SS December 2, 2021 - 6:28 pm

Thanks for your kind words that are very much appreciated. I know for myself at first I believed what they were saying and figured I should be able to deal better but I know different now and writing ranty things helps ha. I might just take you up on your offer, take care 🙂

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