How to Support a Loved One with a Chronic Illness

(and some insider advice on what not to say)

Figuring out how to support a family member or friend suffering from a chronic illness is HARD.

When navigating how to support a loved one with a chronic illness, your gut instinct is probably going to be a strong desire to “fix” the problem. Especially if you’re in a caregiver position. I mean, who wants to helplessly watch their loved one suffer?

Because “fixing” chronic illness is not really possible in the traditional sense and treating it is nowhere near straightforward, things get complicated.

If you’re religious and believe God miraculously heals – like I do – that adds another layer of complexity. Why hasn’t God healed your family member or friend, if He is able?

Before I delve into do’s and don’ts below, I want to clear up a potential misconception.

If you find that you have said or done some of the items on the “no” list, I know you most likely meant well. My intent isn’t to make anyone feel badly for saying or doing the wrong thing.

Instead, my focus is on raising awareness about what comes across as hurtful, invalidating, or unhelpful, and in contrast, what feels truly encouraging and supportive. Knowledge is empowering, and knowing what to do means your support will really make a difference!

What You Should Not Say and Do When Your Loved One Has a Chronic Illness

1. “Are you feeling better?”

This is an exhausting question to answer because in many cases, the answer is “no”, and you don’t want to discourage the person who asked by being honest. Or, if the answer is “yes”, you don’t want to give the false impression that you’re cured because your symptoms have improved for the time being.

Chronic illness isn’t like the flu, where one week you’re sick and the next week you’re permanently better.

It often lasts a lifetime, with periods of flare ups and relapses and also of stability or even remission.

The treatment goal is not to cure, because that that is rarely possible. Rather, treatment is focused on the following:

Reversing as much of the disease process as possible or at least halting/stalling the progression
Improving symptoms and quality of life
Reducing the frequency and duration of flare ups and relapses
Increasing stability, with the ideal of reaching remission for a long period of time without relapse

2. “But you don’t look sick.”

I’ve heard a dozen variations of this one, and they all hurt equally. From, “You’re too pretty to be sick” and “You’re too young to have so many health problems”, to “Well…you look good!” or “You’re young and strong – in the prime of your life!”

Most autoimmune diseases and similar chronic illnesses are invisible, meaning you cannot see what is happening to the person on the outside. This is especially true when a person with chronic illness is young – they look normal and able-bodied to you.

At its core, saying something like the phrase above is invalidating.

Most of the time when a person is experiencing debilitating pain, fatigue, damage to the organs of their body, and disruption of basic bodily functions like eating, sleeping, or walking – they don’t care how they look. Or at least if they do, it’s a secondary concern.

If they’re young, they would much rather not have so many health problems and they’re acutely aware that most people their age do not. The thought that this really might be the prime of their life – as good as it gets – and that they might get even sicker and more disabled as they age is terrifying, not a comfort.

Never say something like this to a person who confides in you about their chronic illness. If they say they’re sick – believe them, regardless of how they appear to you.

3. “Do you think you’re just stressed?”

A person with an autoimmune disease or similar chronic illness – once they’re diagnosed – knows what is causing their disease, and it is never *just stress*.

Even before they get a diagnosis, they know the difference between the debilitating, mysterious symptoms they’re experiencing and those of chronic stress.

Regardless of the intent, comments like these come across as saying you don’t really believe they have a complex long term illness, but rather that you think they could be cured if they lowered their stress or tried positive thinking, therapy, meditation, yoga, exercise, etc.

Living with terrifying, debilitating, mysterious symptoms before getting a diagnosis is stressful. It’s just as stressful living with a terrifying, debilitating, complex condition after getting a diagnosis.

Chronic illness almost always causes a person to feel stressed, but that stress doesn’t cause the person’s condition.

While working on mental health is imperative to reducing the impact chronic illness has on a person, it does not and cannot cure their condition.

To suggest so will make the person on the receiving end feel misunderstood, disbelieved, and dismissed – every time.

4. “Have you tried (fill in the blank)?”

When I hear a comment like this, I always appreciate the thought behind it. I know the person who said it just wants to help, because they care.

At the same time, it also makes me feel very, very misunderstood.

A person with an autoimmune disease or similar chronic illness spends far more of their time and energy researching, visiting expensive health practitioners, and trying different types of treatment options than they would like to.

After years of living with a condition, the likelihood is that the person knows more about the trajectory of their disease and what will or won’t help than most physicians.

Ultimately, the message behind comments like these is that I must not be doing the right things or trying hard enough to get better, or I wouldn’t still be struggling.

Instead of saying something like this, believe that your family member or friend is already doing all they can for their health and wellbeing – even if they aren’t improving.

5. “Oh, I have that too.”

One of the ways I tend to respond to people when listening to their story is by sharing a similar story to show I can sympathize with their situation.

When you’re a person with chronic illness talking to another person with chronic illness, this can help them feel less alone in their suffering. I know it does for me.

However, if you’re a person with average health, saying something like, “Oh yeah, I get that too!” comes across as extremely invalidating.

To put it in perspective, imagine this:

You have a severe case of the flu and you’re nearly bedridden with a high fever, excruciating headache, body aches, chills, sweats, dizziness, lung pain – the whole nine yards. It’s been a week with no sign of improvement in spite of doing everything you can to support your immune system and recover.

You confide in your friend about your sickness, and they reply, “Ugh, I know exactly how you feel! Work has been so stressful this week, I’ve been up late every night, and I’m so tired. I had a tension headache all day yesterday.”

Don’t do this.

All struggles are valid and not something to brush off, but to compare yours as a healthy person to someone with an autoimmune disease or similar chronic illness just makes them feel like you have no clue the extent of what they’re going through.

6. Offering (bad) counterintuitive advice.

Recently, after sharing with friend how lonely I’ve been having to isolate from groups of people and stay away from church for months, to protect my immune system since I was getting sick 1-2 times a month for up to 2 weeks each time every time I was exposed to something, and it caused a relapse of my chronic illnesses (you can read more here) – they replied with the following:

“You know, isolating too much isn’t good for you. Maybe you should just relax, see your friends, and go back to church. Trust God to protect you from getting sick.”

I haven’t been honest with that person about how I am doing since then.

I’ve also had someone tell me that God told them if I stopped the treatment for my chronic illnesses, all my symptoms would go away.

It’s pretty self-explanatory why anything along this line is a terrible thing to say to someone. While the person saying it might have an intention to help, how it really comes across is that they don’t understand what their family member or friend is going through at all.

7. Asking to pray for miraculous healing.

If you’re religious and you find out your family member or friend is suffering from sickness, it’s completely understandable to want to pray for them.

The reason it’s painful for a person with autoimmune disease or similar chronic illness to be asked this is because almost every person who hears of their sickness for the first time wants to pray for miraculous healing.

After years of personally praying for and having others pray for miraculous healing, if God hasn’t done it, you lose the desire to have others keep praying for miraculous healing. Because God is capable, if it were His will to miraculously heal you, He would have.

On top of having your hopes dashed over and over, when someone wholeheartedly believes God will heal you if they pray for miraculous healing and it doesn’t happen – often they blame you because they can’t come to grips with their disappointment in God. Perhaps you didn’t have enough faith, didn’t really want to be healed, or have hidden sin God is punishing you for, they wonder.

This doesn’t mean you shouldn’t offer to pray for your loved ones with chronic illness at all – just don’t do it like this. I’ve included some alternate suggestions on how to pray in the “do” section below.

8. Thinking or saying that your family member or friend is lazy for not being able to work.

Sure, there are lazy people in this world. I don’t deny that. However, we shouldn’t make a practice of assuming someone is lazy based on a superficial judgement.

Imagine having a severe case of the flu, but it never fully goes away. You just vacillate between having the worst of the symptoms and feeling like you might be on the upswing for the rest of your life. Or, picture having post-COVID fatigue every day of your life, or a concussion from a head injury, but the symptoms never go away. Alternately, consider what it would feel like if someone took a sledgehammer to your knees. Or, imagine that no matter how many hours of sleep you get, you still feel as exhausted as or worse than when you went to bed.

These are just a few examples of the symptoms chronic illness can cause.

Now, imagine trying to financially provide for yourself while feeling like this every day of your life, with no respite.

Multiple times, I have felt humiliated, desperate, and like a burden for relying on my husband to provide for me when I was too sick to hold down a job. Likewise, he felt the same when was too sick to move out of the house or provide for himself as a young adult.

I have felt worthless for only being able to work part-time and go to college part-time, because I know I could easily become bedridden again if I pushed myself harder. The expectation to do more never relents.

I have felt the terror of wondering how on earth I’m going to hold down a full time job so I don’t starve or become homeless, while my body is falling apart no matter how quickly I try to pick up the pieces.

People with chronic illness never stop pushing, because they don’t have a choice if they want to survive.

A healthy person gets to swim along the current of the river of life, so their effort helps them go a long distance and achieve tangible results.

A chronically ill person has to swim against the current, forced to exert twice as much effort, simply to avoid drowning, and to onlookers they are pitifully weak because they’ve made so little progress in swimming up the river.

If your family member or friend is too sick to hold down a full time job, believe them. Similarly, they’re not weak, unmotivated, or lazy if they can hold down a full time job but have no energy to do anything else after work. If they’re so sick that they can’t work any longer, trust me – they tried to keep going until their body utterly failed them.

Don’t perpetuate the beliefs they’re trying so hard to fight with your judgements.

9. Thinking or saying that your loved one must be doing something wrong since God hasn’t healed them.

Coming to grips with the fact that God always has the ability to heal, but sometimes choses not to, is HARD. It forces you grow your faith in a painful, raw, and real way.

Whether you’re a person with chronic illness or you have a family member or friend with chronic illness, it’s difficult to process.

You’re left with two options to believe. Either,
1.) You believe you or your loved one are still sick because you/they didn’t have enough faith, didn’t really want to be healed, or God is dealing with hidden sin.
OR
2.) You have to shift your entire paradigm of belief. You used to think God’s desire was to heal everyone in this lifetime, and that miraculous healing was accessible to anyone who prayed for it. It’s a lot harder to realize that God could heal everyone in this lifetime, but chooses not to do so.

In our fallible, mortal thinking, we feel that God cannot be good if He chooses not to heal when He could. However, God is an infallible, omniscient God, and His thoughts and ways are higher than ours (Isaiah 55:8-9). He IS good, even though He doesn’t choose to heal everyone’s sickness in this lifetime.

We live in a fallen world where sickness, disease, and death are prominent, but we can always cling to the promise that in the ‘olam ha-ba (world to come), there will be no more death, sorrow, crying, or pain (Revelation 21:4).

When you’re forced to confront your beliefs about physical health and prosperity in this life because God didn’t heal your loved one, don’t blame them – wrestle with God and allow Him to transform your faith instead.

10. Dismissing your family member or friend.

If your friend or family member confides in you or gives you updates about their journey with chronic illness, it goes a long way when you make an effort to remember what they have told you. From personal experience, it’s exhausting to have to recount the same details over and over again. It feels painful to have the people you love completely forget about what you’re going through, when it’s such an ever-present part of your life.

A few months ago when hanging out with friends, they asked how Jonathan and I were doing. We shared a bit about what has been going on with our health, because that’s been at the forefront of our lives lately. Then, one of our friends said, “Okay, so I get that health is not good, but has anything positive happened that you can share?”

While it might feel like we’re focusing on the negative to you, we’re just being honest about the reality of our lives.

I work very hard to find the bright side in everything that happens in my life, so I don’t get overwhelmed with my circumstances. But people with autoimmune disease and similar chronic illnesses can’t always escape the cold, hard reality of their lives and “have a positive experience”.

Comments like the one above are only a painful reminder of that.

What You Should Say and Do When Your Loved One Has a Chronic Illness

1. “How are you doing?”

Because this is an open-ended question, it’s much easier to answer than, “Are you feeling better?”

There’s always something new to report when you’re trying to get a diagnosis, attempting to find an effective treatment plan, or just dealing with the ebb and flow of flare ups and lulls in symptoms.

Navigating life with chronic illness comes with so many ups and downs that it can be such a relief to have someone ask, “How are you doing?” when you know they really want to hear your answer.

2. “I’m here for you no matter what.”

Feeling like a Debbie Downer and a burden to your family and friends comes as part of the chronic illness package. Hearing a loved one say something like, “I’m here for you no matter what”, is a reassurance that many a person with chronic illness needs from time to time.

3. “I’m so sorry.”

Autoimmune disease and similar chronic illnesses come with so much pain and loss as a result, that hearing something empathetic like, “I’m so sorry”, can feel truly validating.

4. “Is there anything you’re struggling to do that I could help with?”

While I don’t think this is an ideal to live up to, most people struggle to ask for help when they need it because of feeling guilty or embarrassed.

Your chronically ill family member or friend might never tell you if or when they need help.

If you’re in the position where you can and would like to help in a tangible way, sometimes the best approach is to just ask what you can do. Or, instead, tell them what you’re able to do and ask if any of those options would be helpful.

5. “How can I pray for you?”

“How can I pray for you?” is MUCH better than asking if you can pray for miraculous healing.

At any given moment, I am praying for hope, peace, relief, strength, and progress, and I would love for any family member or friend to join me in those prayers.

It takes away the awkwardness of having one more person pray for miraculous healing, while simultaneously demonstrating that they care a lot.

6. Let them vent without feeling the need to offer a solution.

You are *never* required to let someone vent to you. So before giving someone the go-ahead to vent, make sure you’re in the mental and emotional headspace to handle it. You can’t take care of others effectively if you aren’t taking care of yourself.

Rather than always attempting to offer a solution to the problem, sometimes the best way to support a loved one who is struggling is to just let them vent and listen/empathize.

Constantly assuming the burden of having to solve your loved ones’ problems can lead to burnout and resentment. Instead, give yourself permission to simply listen empathetically and offer a hug if one is wanted.

7. Read about their condition(s) through reliable sources.

If you really want to blow the mind of a person who has an autoimmune disease or similar chronic illness, ask them what a good educational resource would be for learning about their condition(s) and read up on it.

Then, next time they share an update with you, you’ll know exactly what they’re talking about and make their day!

8. Ask about their treatment with an open mind and check in to see how it’s going.

Building on the last point, almost nothing could make a chronically ill person feel more validated and cared for than a loved one remembering the details they shared about their journey with chronic illness.

If someone were to ask me, “How are your functional neurology sessions helping your POTS symptoms?” or “How did your follow-up with the immune specialist go?”, I think I would cry realizing that they cared enough to remember what I told them.

9. Take them seriously.

Chronic illness causes a person to go through gut-wrenching physical, emotional, and spiritual pain.

It destroys dreams and paints a bleak picture of the future.

The symptoms are physically and emotionally draining.

It’s terrifying to wonder whether your fragile body will keep up with the demands of work, education, and home life so you don’t starve or become homeless. So you can have some semblance of a future.

Fighting to keep hope alive is nearly impossible, yet must be done to avoid despair.

Continually working to achieve progress and remission, if possible, is exhausting.

Experiencing life as a chronically ill person is lonely, when the majority of people go through life with better health and can’t understand.

Demonstrating that you comprehend the weight your chronically ill family member or friend is bearing goes a long way to show them how much you care. It’s one of the best ways to provide support.

10. Believe them. Even if you can’t understand what they’re going through firsthand.

Chronically ill individuals have to spend so much time and energy advocating for themselves at doctors’ offices, work, school, and much more.

It’s a breath of fresh air to have a loved one believe them right away, so for once they don’t have to defend or explain themselves.