21 things not to say to a chronically ill person: from a husband of a chronically ill woman.

What are the 21 things not to say to a chronically ill person?

I’m a man behind a chronically ill woman who suffers from endometriosis and fibromyalgia. I decided to write this article because my wife’s chronic and invisible disorders are often misunderstood.

My wife faced many people who lack basic knowledge about her multimorbidity.

It can be really difficult when random people, employers, friends, even family members, don’t understand what M is going through.

She’s often doesn’t feel well enough to repeatedly explain everyone the matter.

This post was designed to solve the problem.

Now, anyone who asks my wife difficult questions will be told to visit this post to help my wife and people like you go straight to the point, without wasting time or precious energy.

Here’s your answer to the question of things not to say to a chronically ill person:

1. You don’t look sick!
2. You’re too young to be sick!
3. Everyone gets tired…
4. You’re just having a bad day.
5. You’re lucky not to have to go to work.
6. You need to get more exercise.
7. I wish I had time to take a nap.
8. Think positively!
9. Just push through it.
10. It will get better, just be patient.
11. Have you tried…
12. You should stop…
13. It’s all in your head, you’re just stressed.
14. You need to get out more.
15. You take too many medications.
16. At least it’s not cancer.
17. I get terrible cramps too…
18. Did you try going gluten-free?
19. I understand what you’re going through.
20. Have a nap, you’ll feel better.
21. You should do yoga.

You don’t look sick!

Here’s the first of the 21 things not to say to a chronically ill person suffering from chronic disorders like endometriosis and fibromyalgia.

These disorders are invisible.

No one can see what is happening to the people who suffer from them. You should never say “you don’t look sick”.

You may be oblivious to that person’s pain, but the pain is real.

Imagine, if your stressed-out friend or loved one who’s affected by the illness still manages to put on a brave face, it means they try to live a fairly normal life.

They don’t want to feel left out. Don’t make it any harder for them.

You’re too young to be sick!

My wife gets this one more than the first one. You see, illness doesn’t give a monkey what age you are. Just think of kids with cancer!

My wife got diagnosed at the age of 38, but young women are being diagnosed in their teenage years. They go through any kind of stressful situation no matter their age.

Chronic illness originates from childhood trauma, and so it can affect you at any age. Age is completely irrelevant.

Young does not always mean disease-free.

When you tell someone they’re too young to be sick, it just makes them feel bad because they have no control over when society expects them to be healthy.

Everyone gets tired…

The third thing not to say to a chronically ill person is that everyone gets tired.

Yes, everyone does, but most people are not getting enough sleep and rest. It’s NOT the same.

The difference is that people with chronic illnesses suffer from chronic fatigue and healthy people can’t compare themselves with the same level of it. Theirs is a one-off, it’s not chronic.

You don’t know what fatigue is because (unlike my wife) you’ve never had to rest after taking a shower. This is how much energy it takes to accomplish simple tasks.

It goes for every little thing such as brushing your teeth, combing hair, washing dishes, even cleaning, driving, and more…

This is a completely different level of tiredness.

You’re just having a bad day.

Maybe you’re trying to motivate someone but it doesn’t look like that for the person who suffers.

Chronic illness stays with you for life. You cannot change your lifestyle and find that your symptoms go away. Treatments to help you cope with the illness, and be to some extent “managed,” but mostly, there are a lot of bad days.

It is long-lasting, your symptoms will be there for many years to come. There is no cure, so these are the things not to say to a chronically ill person.

You’re lucky not to have to go to work.

Really??

If you only knew how much my wife misses human contact with people…

To go out is what she misses the most. People think that a chronically ill person doesn’t work but goes out and does what they want.

It couldn’t be further from the truth. My wife rarely goes out anywhere at all. To go to a shop across the road is torture that can cost her to stay the following day in bad.

When you are forced not to go to work, even though you want to be there, it is a different story because people with chronic disorders don’t want to fall behind.

They feel judged and guilty.

They don’t want to miss work and not be able to generate an income. Everyone wants independence.

You need to get more exercise.

It’s not that easy as you think. Sure, exercise is really important and I don’t deny it. It helps in any health condition.

However, it isn’t a cure. For people like my wife, who suffers from endometriosis and fibromyalgia, exercise isn’t always doable. She’s often in pain. this pain is unpredictable.

She does exercise but it is more like physical therapy rather than what most people would consider working out.

My wife used to be a professional dancer. Do you honestly think she doesn’t want to exercise? How do you think it makes her feel when you say this?

And remember, everyone has limitations, even you, my friend.

For chronically ill people, their physical limitations make it harder for them to exercise. And even when they do, it’s not to cure their condition, but for the sake of their mental health.

I wish I had time to take a nap.

To someone with a chronic illness, napping is NOT a luxury! It is a necessity!

By hearing someone say “I wish I had time to take a nap” is like a slap in the face! The same goes for saying they wish they could take a break from work.

Hearing anyone “wish they could have…” reveals how misinformed they are.

And remember, that apart from your wish, you still have to put up with pain, exhaustion, and the difficulty of figuring out how to be useful in society.

Think positively!

I’m an optimist and tried many times to lift my wife’s spirits up. After a few weeks of being positive, my wife told me off for being too positive all the time.

It’s because this did not change her situation.

Even if she kept positive, and she tried, pain doesn’t go away, doesn’t it?

I thought many times of the things not to say to a chronically ill person. My wife told me many times to be careful about what I say.

You’ve heard of chronically ill people say that they put on a brave face and a fake smile, it’s because it’s true.

They don’t want to feel isolated.

Positivity is really important, that’s true, after all, it means hope, and it seems like having a negative outlook can negatively affect an illness.

But at the same time, dear friend, having a positive outlook will not cure it either.

My wife has gone through all the stages of positive thinking and denying her illness. She did not accept it for so long, it was truly tiring.

Right now she practices gratitude, and even though it’s difficult to accept her faith, it is far better to approach than positivity.

Just push through it.

Yes, but… what has she done so far? If my wife didn’t push through it, she wouldn’t be here.

She survived 5 suicidal attempts, she’s still here. “Just push through it…” how do you think that makes her feel right now?

Thank you, I think I’ve made my point.

This is just another one of the things not to say to a chronically ill person. Hearing this makes my wife want to hit her head against a wall.

The problem with this statement is the assumption that chronically ill people do not already push themselves. Every day they push themselves.

Pushing past your limits can set someone with a chronic illness back for weeks as they have to recover from overextending themselves.

Suggesting someone to just push through it may not feel insulting, but it is since you don’t really know what that person went through already.

It will get better, just be patient.

No, it will NOT!

I know you mean well, but not all chronic illnesses will get better. Not endometriosis, not fibromyalgia.

Please, don’t say this statement to someone who has an illness that they will have for the rest of their life. It could get better, but it will not disappear.

Any trigger, including stress, will bring the symptoms back. Stress is a part of life, it’s unavoidable.

This is not to say that they shouldn’t hope to get better, it’s just that they shouldn’t count on it. That’s pure denial.

Have you tried…

Yes, she tried. She tried it all. What was she doing for the last 8 years if not trying?

The diet (she’s forever on), the meds, the hormones, the acupuncture, all the physical and mental therapies, she went through it all…

Even all the medical professionals don’t know a thing, they aren’t in the position of the person with a chronic illness, and yet they provide advice…

You’re not even a specialist, so please, keep it to yourself.

She hasn’t tried super magic moon crystals, because we don’t really believe in this but she has tried just about everything else including alternative and new treatments.

A holistic approach is the best but it takes time. There are many components to take care of.

Everyone wants to feel good, but for chronically ill people it isn’t as easy as it sounds.

You should stop…

Again, you’re not in the position to say this, you haven’t experienced it yourself.

I know you probably mean well and you want to help but did you know that one of the parts of my wife’s treatment is to erase dairy, sugar, alcohol, meat, etc from her diet?

So if you want to tell her how you or someone you know of feels so good because they cut out salt, it will be really upsetting to her.

Now, you have an idea… and this is just one area of her struggles.

What works for one person does not always work for another. Please keep your unprofessional advice to yourself.

Why?

Because you are wasting your time and saying “you should stop” insulting someone with a chronic illness.

It’s all in your head, you’re just stressed.

Now, you sound like all the doctors we’ve seen so far with their imaginary approach to chronic illness.

No, it’s not in the person’s head!

People need to educate themselves before making such statements. These are the things not to say to a chronically ill person.

Anxiety and depression are the outcomes of chronic illness, pain, and tons of other dreadful symptoms chronically ill people have to deal with.

It’s not the other way. Stress is always a cause of something else.

Those who say that painful periods, heavy bleeding, widespread pain, stabbing pain are imaginary and it’s only stress are utterly stupid.

That’s all I have to say.

You need to get out more.

We do. What do you think we do? Of course, we go out, whenever we can. Because it’s rare.

A change of scenery always does my wife a lot of good, Idon’tdeny it, because spending time outdoors is good for your health.

However, when you say this to someone with a chronic illness, it doesn’t sound encouraging.

My M wants to get out more, and it makes her feel guilty for not being able to do something with me when she really tries.

She feels like I miss out on a lot because of her.

So before you say this, remember that not only it makes her upset but also makes me angry.

You take too many medications.

Actually, my wife takes none. But for those who do…

People have different opinions on medications. Some say they help, others say they are bad for you.

In some cases, meds are necessary yes, but in the long run, they are not.

Painkillers for instance are good, but they are good for acute pain, not chronic one.

So, the subject of medication is one of those things that are individual.

If you take a medication, you have to research the side effects first. Not everyone feels that popping a pill will solve a problem.

Medications are amongst these sensitive things not to say to a chronically ill person.

People with chronic illnesses do many things to try to live as normal a life as possible, and most of the time it revolves around a holistic approach.

That means for instance avoiding triggers.

Medications are just one small piece of the puzzle.

Treatment (not cure) is a lifetime of adaptations and figuring out what works and what doesn’t.

At least it’s not cancer.

Well, we both thought of this a while ago, and I can tell you one thing… chronic means a lifetime of torture.

When it comes to cancer, doctors take people more seriously, people die or get better.

When it comes to chronic disorders, people aren’t taken seriously, it’s invisible therefore supposedly “in their minds”.

There’s no cure, and so unlike cancer, there is no relief. Chronically ill people often suffer in silence and they suffer their whole life.

I get terrible cramps too…

Sure you do… even if you were a girl, you don’t have endometriosis, you have absolutely no idea what a painful period means if you never suffered from this brutal disorder.

I know that periods suck, but you shouldn’t really compare your cramps and periods to something that’s sent my wife to the hospital a few times, plus on the operating table.

Read about stage IV deep infiltrating endometriosis to find out more…

Did you try going gluten-free?

For starters, no one in the world can digest gluten. Gluten contains cellulose and gliadin, both are NOT digestible.

So, no – you cannot digest gluten.

What does it mean?

People who say that going gluten-free solves problems for people who have celiac disease or gluten intolerances are, in fact, true because no one can digest it.

But when you say that a chronically ill person should try going gluten-free, it really doesn’t have any sense at all…

I understand what you’re going through.

No, you don’t mate!

This is one of the worst things not to say to a chronically ill person! I mean, really the worst.

Even I, who lives 24/7 with my chronically ill wife, will never understand endometriosis or fibromyalgia. I’m not in her shoes, I will never know, I can’t feel it.

If I can’t understand what she’s going through, you never will!

Also, unless you live with CFS/ME or any other chronic illness, you really can’t relate to or understand how a person might be feeling.

Have a nap, you’ll feel better.

Wrong again. A nap doesn’t solve the problem. Chronic illness means chronic pain, and that often means chronic fatigue.

Chronic fatigue is so much more than just tiredness. For my wife, it’s exhaustion on another level. It is often coupled with extreme weakness, headaches, brain fog, even fainting.

By saying “I can’t imagine how you must be feeling” would be so much better than saying “have a nap, you’ll feel better” because it would show some kind of understanding.

Next time, please don’t jump to conclusions. Think before you say this.

You should do yoga.

No, it doesn’t help. Pilates can be gentle on your body, yoga is not. Yoga is too much.

Besides, telling someone to do some yoga implies one or all of the following:

• The person never thought of trying yoga before.
• You have the answer to their problems.
• Your experience with yoga is better than theirs.
• They just need to destress and they’ll feel better.

All the above statements are wrong.

But like I said in the exercise paragraph if you don’t have the energy to do such simple chores as cleaning, cooking, taking a shower, the last thing you feel like is exercising.

Even though you really want to, your body constantly disappoints you in the most crucial moments of your life.

Mentally, it is truly damaging. So, the exercise would be helpful, if you had a chance and energy to do it.

Summary…

Summarising the 21 things not to say to a chronically ill person is finally coming to end.

Yes, I know other people have it much worse, but it doesn’t mean a chronically ill person has it easy.

Life isn’t sunshine and puppy cuddles, especially when you suffer from a chronic illness, let alone multimorbidity.

Endometriosis can be excruciatingly painful, widespread fibromyalgia pain causes extreme fatigue and brain fog.

Both illnesses prevent you from having a normal life. You cannot even comprehend how much.

Please, have some compassion, and think before you say something to chronically ill people. It really isn’t easy for them. These invisible conditions make the matter worse.

People judge them for no reason, making them feel terrible, guilty, sad, frustrated, and helpless.

It can be really tricky to talk to someone who suffers, even though you have good intentions because you are often drowned out by poor word choice.

Most of the time, chronically ill people are looking for compassion.

It’s not pity, solutions, advice, and definitely not judgment. Simply just a listening ear, maybe a hug, or sentences such as “I believe you” or “I’m here for you” help a lot.

I maybe never said so much bad stuff, but I too had to learn how to talk to my wife.

If you carefully listen, you’ll find compassion. To better understand people with chronic illnesses, the best way is to listen and ask questions instead of stating things you believe you know.

Educate yourself about endometriosis and fibromyalgia.

This will help to raise awareness, by adding more voices into the conversation about these disorders.

Cheerio!