Things that people say to a person with chronic illness (but should not)

As a person with chronic illness (several, actually), there are certain phrases/words/statements that have begun to affect me more than they used to. I reckon the more accepting I become of my condition(s), the less tolerance I have towards certain behaviour(s) or statements.

After a particularly difficult phone call with ______ about my recently diagnosed chronic illness (Ehlers Danlos – more on that later), I started thinking about what was it about the conversation that made me feel so bad. It was the phrase “completely alright”. This well-minded person, who I’m sure thought was cheering me up & giving me hope, said to me that they were praying for me and I will be “completely alright” soon.

I have several chronic illnesses. None of them have a cure. Some of them don’t even have clear treatments. There is symptomatic management and that is it. I am losing mobility and all that can be done is to keep it at this level for as long as possible. With sufficient symptom management and rehabilitation, I can have a life with relatively less pain & fatigue, hopefully. That is it. I am never going to be alright, let alone completely. The person I was speaking to is well educated and knew all this (perhaps not to the extent that I do but they do know the gist of it).

So why would they say I will be “completely alright”? Who is this actually helping? They think it is helping me but it is actually harming me more than they possibly know or can imagine.

In reality, it is helping the person saying it. People don’t like to have uncomfortable conversations or any conversations involving any kind of – what they perceive to be – negativity. They generally want to end conversations on a high note. People don’t want to take the time and effort to face reality, especially when it does not affect them. Above all, people want to feel good about themselves – that they have cheered up or given hope to a person who is suffering (even if that is not really true – it is their perception that matters).

If this person (and anyone like them) stopped to think for about 5 minutes, they will understand how excruciatingly painful it is for the following reasons:

• I know there is no cure for my condition(s). If I agree with what you are saying, I am lying to you & living a dual life. This invariably leaves me in despair.
• Or worse, I am lying to myself. I am living in denial of reality and refuse to accept what my life is or going to be. This leads to an invariable crash in my mental and physical health when I do have to come to terms with it. This cycle is repeated endlessly every time I hear this phrase.
• If I disagree with what you and don’t say anything, I feel like crap for not speaking my truth.
• If I disagree with you and speak up, I risk losing a friend and it makes familial relationships all the more complicated.

So it would really help if the people in the life of a person with chronic illness came to terms with their reality and know what not to say.

#NEISVoid – Things that people have said to fellow chronic illness patients

After this call, I asked my #NEISVoid folks – people with chronic illnesses who have formed a community of sorts on twitter using the hashtag #NEISVoid created by Brianne Benness in March 2020 – what was the word/phrase/sentence which they heard often that triggered or hurt them the most. There was a barrage of answers, understandably overlapping because of the commonality of our experience in this ableist society.

These fell under 7 categories. Some of them are well-meaning, some of them ignorant and some of them downright rude. How many of these have you heard? Have you ever shared with the person(s) saying these things how you feel? If you have not (or even if you have) you could share this with them!

This is the group of people that find your mere existence inspirational and say everything you do is brave – like going by yourself to a doctor’s appointment in a wheelchair. They mean well, they really do most of the time, but it would be nice if they knew that most of us are not trying to be brave or inspirational but just exist and survive with the limited accessibility options that the world offers us.

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1. The inspired brigade

I don’t know how you do it.

You’re so brave.

I am so glad I don’t have it as bad as you.

(Author’s note: May be you can be grateful for that but just don’t tell it to us?)

I would just die if I ever had to deal with what you have to.

(Author’s note: No you won’t, not from a chronic illness, unless it is also fatal).

——-

2. The looks brigade

This is the group that is ready to pass judgment on your entire medical history based on your looks and age. Invisible illnesses – what?

You don’t look sick.

You look just fine.

You are too young for that.

But you still look pretty!

(Author’s note, based on the commentor’s tweet: So disabled people or people with a chronic illness cannot intrinsically be pretty? Also, what is your definition of pretty?)

——–

3. The “you’re lazy” brigade

This is a rather rude group (or ignorant?) which assumes that you spend all day lounging in your bed/couch watching Netflix while you are having a full time job managing your chronic illness(es). Dealing with the medical system full of doctors who don’t believe us, making appointments (& going to them, because pre-pandemic telehealth was not possible!), coordinating between all specialists because there is no means for them to do that on their own, chasing after & picking up prescriptions, paying medical bills, submitting for insurance & chasing reimbursement, medical tests & follow up, home management of symptoms, exercise, preparing & following a special diet – our chronic illness is our full time job!  

—–

What do you do all day?

You can play video games and watch movies all day right?

Oh I wish I could be lazy like this!

May be if you can just exercise a bit?

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4. The “you look good today so you must be fine” brigade

This is the group that will judge your whole life, not just your medical history, based on how you look or feel on a given day. That we make an effort sacrificing a lot of energy to feel good/okay to go out is lost on them. Or worse, you might get free advice on how to look good & not go out like you are sick (which you are!). Damned if we do, damned if we don’t.

—–

Ah looks like you are feeling good today!

You look normal today (and all various implications of ableism contained in that word)

You look like your old self.

Just go rest a little.

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5. The advice and comparison brigade

This, in my opinion, is the most intolerable group that provides unsolicited advice usually involving yoga, some kind of tea and a cousin that got cured by doing that you should absolutely try.

…… Well, my aunt/sister/cousin/neighbour/colleague have the same and are doing great cuz they just….. Why don’t you…

My aunt/counsin/friend of a third cousin once removed tried this (yoga/meditation/some wonky special tea) and was cured. You should try it too.

Oh you get migraines? I think I get them too.

(Author Note: Erm if you have to “think”, you don’t. Take our word).

You should try eating better.

Eat organic food. Cut out all sugars.

Cut out alcohol.

(Erm we can’t drink with most of our medication anyways?)

——–

6. Second worst culprit: The you will be alright/cured brigade

As I wrote in the beginning, I cannot take this group. I just cannot!

You will be cured/I have a cure/The doctors haven’t cured you yet?

You will be completely alright. Everything will be fine.

I believe you’ll fully recover.

If you pray to God, he will heal/cure you completely.

7. The worst culprit: The toxic positivity brigade

This is the worst, worst group of all but also possibly the most well meaning group in a lot of cases. This is the group that thinks you can will your pain and chronic illness away with positive thinking. Sadly, positive thinking cannot cure an incurable, chronic illness. It is not going to make the chronic pain disappear. There is such a thing as toxic positivity. If we have to stay positive all the time it would mean we live in denial perpetually. Most of us are working hard, after years of living in denial (from our side, in the beginning and then the medical system for years or even decades), to get to the stage of acceptance. So please, keep your positivity to yourself. For a lot of us, positivity lies in our acceptance and adapting ourselves (& our surroundings) to live a decent life. Besides, thinking usually makes the pain intolerable. So that is not helping either. You cannot understand what positivity means to a chronically ill person until you have walked in their shoes. So please, don’t impose your understanding of positivity on us. That is toxic to us.

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Think positively.

Don’t give up. Keep believing.

The mind is a powerful thing.

You should just smile more.

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All this is not to admonish anyone but to genuinely raise awareness so that you will not, knowingly or unknowingly, cause harm or trigger a traumatic response in someone who is chronically ill. I will be following this up with a post (also partly crowd sourced) on what you can say to a chronically ill person that will cost you nothing but mean the world to us!