Ever had your loved ones diagnosed with a chronic disease?
One of the most overlooked facts when dealing with chronic illness is that as difficult as it is for the person diagnosed, it is also difficult for their loved ones.
Offering chronic illness support is easier when you know what to do for the person involved, but in the case of someone newly diagnosed, they are still learning and often don’t know what they need.
People diagnosed with chronic illness go through different stages of guilt before accepting the new reality. Afterward, they must make the difficult decision of informing their loved ones—romantic partners, parents, siblings, and friends. This is because being diagnosed with a chronic illness can feel like a death sentence since, in most cases, there is no cure and few treatment options.
So, how do you offer them chronic illness support and make them feel constantly good?
Here’s the thing, the best way to offer chronic illness support to your loved one is to learn. I’ll share more tips in this post, so keep reading.
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What is a chronic illness?
According to the Centers for Disease Control and Prevention, chronic illnesses are illnesses that last one (1) year or more, require ongoing medical attention, have limitations on the patient’s daily life, or both.
Most people with chronic illnesses must manage them almost throughout life. Some people can be diagnosed with more than one (1) chronic illness, which is called Multiple Chronic Conditions.
Some chronic conditions are influenced by lifestyle and genetics. Most genetic dispositions are often triggered by lifestyle and are otherwise just recessive.
Types of chronic illnesses.
There are several diseases you might not know are classified as chronic. Some of these diseases are commonly mentioned today but are actually chronic conditions.
Here are some diseases that are classified as chronic:
- Heart disease
- Chronic obstructive pulmonary disease (COPD)
- Cystic fibrosis
- Ulcerative colitis
- Irritable bowel syndrome
- Chronic fatigue syndrome
- Epilepsy & Seizures
- Oral health disorders
How to offer chronic illness support to your loved one
You can support your loved ones dealing with a chronic illness in different ways; you can be there for them physically and emotionally.
Here are some best ways to offer chronic illness support:
This is one of the most appreciated ways to offer chronic illness support to your loved ones. It’s not just pretending to listen but actively listening to them.
People dealing with chronic illness appreciate it when you listen. You might not understand what they’re going through, but seeing you try and be there for them offers healing in different ways.
When they share how difficult it is, their pains and struggle, rather than giving advice, it is best to be a listening ear, show interest, and remind them of your support.
Empathy is necessary for offering chronic illness support to your loved ones.
It involves actively listening to their complaints, struggles, and emotions and letting them know that whatever they feel is valid and shouldn’t be dismissed.
For example, when your loved one complains of pain, you can reply, “it seems like you’re really frustrated with the pain. That’s okay,” or “you shouldn’t beat yourself up because of your unfinished tasks. You can always do it after resting.”
Showing empathy can go a long way in making them feel better.
3. Discard toxic positivity.
Can positivity be toxic?
Yes, and this is one of the major mistakes to avoid when offering chronic illness support to your friend or partner.
Toxic positivity involves using common comfort phrases for people who are going through something. These phrases can include “everything will be alright,” “you can’t kill yourself,” “it is what it is,” or “stay positive.”
Although they might be well-intentioned, the receiver might feel you’re mocking them or don’t understand what they’re going through.
4. Avoid ableism and disablism.
Ableism occurs when you refuse to validate a person’s diagnosis and make it something everyone faces—for example, telling someone with endometriosis that they are magnifying their symptoms or that everyone feels pain during their menstrual cycle.
Disablism, on the other hand, involves assumptions that result in unequal treatment of people with disabilities—assuming that they’re unable to do some tasks or the magnitude of their limitations.
5. Learn, learn, learn!
This doesn’t mean you need to get a degree or be certified as a healthcare giver. Still, you can learn about the basics of your loved one’s diagnosis to understand what they’re going through and the limitations and get an insight into how they might feel.
For example, if you’re staying with a friend with a chronic illness, read up on their limitations, like dietary restrictions, so they don’t constantly remind you when you make a meal or order takeouts.
This will make your friend feel less burdened or frustrated with their new life.
6. Be supportive.
Dealing with a chronic disease means there are unpredictable days. Being supportive on the good and not-so-good days is the best way to help out your friend. Your ability to be flexible, understand their mood changes, and forgive is the best way to show up.
7. Be a distraction.
Find ways to make them shift focus from their diagnosis. It could be a fun activity that they love and aren’t limited by their diagnosis. This helps them to see themselves outside of their diagnosis and gives them some form of relief.
8. Check-in constantly but not invasively.
You don’t want to show your support in an imposing or invasive way.
For example, you can check in once or twice a week when you don’t hear from them rather than a straightforward question like “how is your [diagnosis] going?” You want to leave the choice of communication up to them and go, “how are you doing? I just want to check up on you.”
It shows that you not only care but also respect their boundaries.
9. Don’t question their needs.
This stems from a lack of understanding of their situation. When someone with a chronic condition expresses their needs, don’t question it because it makes them feel isolated and misunderstood. It can even lead to imposter syndrome.
You cannot fully understand what they are dealing with because you’re not in the same shoes, and questioning their needs is the same as disrespecting them.
10. Remove expectations.
Never expect things from people with chronic diseases. It’s not even a matter of expecting too much or too little, don’t expect at all.
Accept and appreciate whatever they can bring to the table as their best effort. Do not underscore them or give vain compliments.
11. Be ready to give way.
Chronic illnesses come with their limitations, so when your loved one expresses their limitations, be ready to accept them and allow them to do it in a way that’s comfortable for them. You can also offer alternative solutions.
12. Don’t impose.
Nobody should tell you personal details. Don’t impose that pressure on them.
13. Avoid weight compliments.
A chronic illness can result in weight changes; the last thing needed is a comment on weight gain or loss.
Avoid compliments or questions about their weight.
14. Avoid unsolicited advice.
Don’t get me wrong, advising someone with a chronic illness isn’t bad, but is it needed? Sometimes, all the support they need at that moment is a listening ear or some company; offering advice might ruin it.
Also, if your loved one asks for your advice or opinion, offer it with understanding and knowledge. Never advise someone with a chronic illness in ignorance, and don’t try to teach them about their diagnosis.
What they need is a friend and not a teacher.
15. Offer emotional support.
Anyone with a chronic disease needs all the emotional support they can get. Chronic illness affects mental health and provokes feelings of guilt, anxiety, low self-esteem, and depression.
Be ready to be an emotional outlet for your friend; as much as you offer physical comfort, ensure their emotional needs are met.
Let them know it’s okay to be sick and out of it and that nothing they go through is their fault.
16. Don’t devalue their efforts.
No matter how little their efforts may seem to you, never devalue them because that ‘little’ effort may be the best they could give. Create a habit of celebrating their wins even if they’re not big. It might be as easy as finishing their daily tasks or even amplifying their achievements.
“Don’t feel bad that you can’t make dinner; you were able to play around with your child all day, which made him really happy.”
This way, you’ve shifted their focus from what they couldn’t do to what they did and the result.
17. Ask how they want to be helped.
One of the common mistakes people make when offering chronic illness support is to assume things about the person. You guess how they want to be helped rather than asking them.
It is good to want to help, but sometimes, you might offer it incorrectly because most chronic conditions come with their uniqueness, and even if you read up on the disease, you might still not be able to provide the type of help they need.
This is different from considering their needs and knowing the basics about their diagnosis. Still, you want to make sure your help is not being misinterpreted.
For example, your friend with arthritis might prefer your company while working instead of having your offer to do the work for them.
18. Be understanding.
Be understanding or at least try to be, but never pretend to understand when you don’t, even if it is with the best intentions. They will know!
Plus, it isn’t very kind to pretend to understand what someone is going through or try to put yourself in their shoes.
For example, saying things like “if I had [diagnosis], I would do [an action] better.”
19. Don’t give up on them.
You must know that chronic diseases are often managed for life, and this is how long your loved one will need you. There will be times when you’ll both get frustrated, lose hope and hurt each other, but don’t give up on them.
They appreciate your efforts, and being there for them motivates them as well.
Learning the right way to offer chronic illness support to your loved one is crucial because they are at a phase where their mental health is constantly being strained. They are going through challenging changes and need all the physical, emotional, and mental support they can get.
Having the proper support will go a long way in their journey to accepting their diagnosis and getting motivated to manage their disease effectively. Chronic illness support groups are great, but the sessions don’t run for the entire day. Your loved one often requires support that goes beyond a few hours.
Your generous support is more important to them than you could ever know.
Have you ever supported someone with a chronic illness before? Share what you learned.