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.
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.
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.
[ This is a collaborative post ]