The author, Jess, is wearing a blue, vintage dress with grey donkey ears on her head. She is holding a donkey tail up to the camera and looking at it out of the corner of her eye with a look of disgust.

One of DLP’s first ever blog-posts was a guide on how to respond to every chronically ill person’s favourite comment: “You don’t look sick.” While it is important for people living with disabilities and long-term illnesses to have techniques for combatting unwanted and ableist comments, it is equally important for our loved ones, allies, and even random acquaintances, to reflect on how they may be inadvertently contributing to casual ableism, and how they can interact with us in a more sensitive way.

Today’s post will examine some of the most common questions and comments that chronically ill and disabled people have told me that they don’t like hearing, why they are unhelpful, and what you can say instead.

Hot tip: If you’re feeling nervous about calling a specific person out on their ableism…simply post this article to the group chat so that no one knows who it was specifically intended for 😉

1. “You don’t look sick.”

Why is this unhelpful?

While it may be intended as a compliment, this statement can be very invalidating. Many people with invisible illnesses or disabilities face genuine discrimination from medical professionals, employers and educational institutions, leading to delayed diagnoses, inadequate treatment plans, and financial and emotional burdens. Not only do we not like to be reminded of our constant fight to be recognised, but being told that we don’t look sick is really not a source of comfort when we feel like garbage inside.

Unfortunately, many healthy people also mistakenly take looking well as being synonymous with being recovered or being able to function normally that day. It can be exhausting for us to constantly have to explain that this is not the case.

What to say instead?

When deciding what to say, it’s important to reflect on your intention behind telling someone that they don’t look sick. If you were intending to pay the person a compliment, be more specific! Tell them that they look beautiful, that you like their dress, that they have more life in their eyes than the last time you saw them…basically anything else that doesn’t covertly undermine the suffering they may still be feeling inside.

If you are struggling to come to terms with the fact that the person has a serious or long-term illness because they look normal or “the same” to you, its ok to vocalise this, but make your comments about your own unresolved feelings and not about them.

Try something like “It’s been a shock to me that you’ve been diagnosed with “x” condition, or that you haven’t been able to do “y”. I had no idea that someone could continue to look so normal while being so unwell, and I’m sorry that I didn’t realise this sooner.” This will let the person know that you are challenging your pre-existing assumptions about disability, but are being supportive of them in the meantime. It might be uncomfortable to for you to admit that you are feeling this way, but your honestly will mean a lot to them.

Finally, if you are telling someone that they don’t look sick because you simply don’t believe that they are sick, or want to challenge their perception of their own needs or limits…then this article probably isn’t for you. This article is for people who are ready to confront their own internalised ableism and accept that disabilities are a lot broader and more common than society had led us to believe. Anyone with an invisible disability has almost certainly already had to combat numerous doubts from medical professionals, employers, family, and of course, their own internalised ableism. In this case, no one stands to benefit from your opinion, and it’s better for you to not say anything at all.

2. “What happened to you? / Were you in an accident?”

Why is this unhelpful?

Here is a better question: WHY DO YOU NEED TO KNOW!?!?!?!?

In my experience, this is almost always asked by random passers-by who feel entitled to our stories. I genuinely have no idea why some people think it is appropriate (or even have the urge) to ask strangers to repeat potentially traumatic information to them on the street. It’s also endlessly frustrating to have to explain to strangers that disabilities can be the result of a variety of causes, not just accidents or injuries.

What to say instead?

You’ve probably already guessed that if you don’t already know the person, it’s better not to say anything at all. However, I understand that there may be circumstances where you are genuinely trying to get to know someone with a disability and are not sure how to learn more about them.

If the person has something which visually identifies their disability such as a badge, medical alert bracelet or a mobility aid, this can be a great place to start. You can ask something like “are you a full-time wheelchair user, or may I ask why you use a cane?” and use their answer as a guide for what an appropriate follow up question would be.

If you know that the person has an illness or disability for another reason, simply asking “I know that you have “x” but I don’t know a lot about what that means, would you feel comfortable telling me more about it?” is a great way to start. However, don’t be offended if they say no to disclosing all the details immediately. Some people may still be dealing with medical trauma and need more time to feel that you are a safe person to open up to. You can also ask general questions like “what does a typical day look like for you?” which opens up the option for the person to tell you more about how their disability affects them without forcing the issue.

3. “When will you stop using a mobility aid? / When will you get better?”

Why is this unhelpful?

Because a lot of us will never get better or we face huge levels of uncertainty in regards to if and how much better we can get. Personally, I have no problem responding with “never, I have a progressive disease for which there is no cure” and then watching you squirm…however, not everyone is as cold and dead inside as I am.

Some people may still be dealing with the grief of letting go of their old life, or the crippling anxiety of being undiagnosed or gas-lit by doctors. Frankly, it’s just plain rude to put someone in a situation where they have to re-live those feelings in front of you, especially in a public space.

In my opinion, its equally rude to assume that someone’s top priority will be giving up the use of a mobility aid. For many people, mobility aids enable greater independence, a more active lifestyle and greater social contact. Treating them as undesirable, or a sign that the person is not making progress makes no sense at all. A good metaphor is the use of a car. Many people can and do live without cars, for some its easy, and for others it’s more difficult due to their location or the nature of their work or lifestyle. However, we don’t accuse people of being “dependent” on cars because it makes their lives better, nor we do make the assumption that everyone wants to be working towards a car free lifestyle.

What to say instead?

Once again, actually acting on your desire to ask these questions really depends on your relationship with the person. If you’re a close friend or family member, I think it is ok to ask a neutral question like “What is the prognosis of “x” condition?” or “are there other treatments available to you that could help?” The key thing is to avoid language that implies blame. (like “Why haven’t you tried “y” yet?” or “why are you still not back at work?”)

If its a person you are just getting to know, keep questions general and do NOT make assumptions about their future prospects. It’s ok to ask them if they are a full-time cane/crutch/wheelchair user (and you’ll score points with them for knowing that not everyone is!) or ask them if they feel comfortable telling you how their condition affects them on a day-to-day basis, but I think it is better to let them volunteer information about their future trajectory, as it can be a very upsetting topic for many.

4. Any variation of “When are you going back to work? / If you don’t work then what do you do all day?”

Why is this unhelpful?

This one is some kind of unholy hybrid of the previous two points, served with a side of capitalism.

First of all, treating someone’s ability to work as their primary purpose or source of value in life is extremely damaging to all humans, not just disabled people! Many of us already struggle with guilt and shame around not being able to work, or only being able to work limited hours, and we certainly don’t need you compounding it for us!

Society’s obsessive focus on questioning disabled people about their work habits also distracts from the other ways in which we do contribute to society. We boost the economy by spending money on all kinds of things (both medical and non-medical), we are loving partners, friends and parents who do all kinds of unpaid emotional and domestic labour (which also helps enable the people around us to continue working!), and many of us are also involved in other activities that make life better for other people, such as volunteering, activism, or clinical trials.

Finally, its unfair to expect disabled people to account for how they spend every minute of their time when we don’t hold able-bodied people to the same standard. If you want to learn more about all the things that we have to do to keep ourselves stable on a day-to-day basis…great! But it is also not our job to educate you on this, and so its not a question to be asking off the cuff, in a public place, or to someone you don’t know very well.

What to say instead?

If you really must ask someone about their work habits, ask them “if they are able to work.” In doing so, you acknowledge that the majority of the time, not working is not a choice that we make.

(By the way, if you don’t agree with me on this, look up how much someone with a long-term disability can actually receive in government support in your local area, and offset that against the added costs of being disabled. Then see if you still think that choosing not to work would be “worth it.” This is of course assuming that the government even acknowledges that the person is disabled.)

If you’re rather trying to learn more about what the person actually does do during the day, ask them about their hobbies and interests, or ask them an open-ended question about what a regular day entails for them. The person may not want to tell you how much time they spend going to appointments, doing medical admin, or dealing with things like vomiting spells or seizures straight away. Remember, if you want to get to know a disabled person better, it is your job to earn their trust, not their job to justify their life to you.

If you already know the person reasonably well and are genuinely interested in their future, something like “have you had a chance to think about your future plans?” or “do you think you will be able to try going back to work/study/travel etc.?” might be ok, if it is done in the right time and place. For example, during a private conversation where the person feels comfortable. Above all, if the person says no, or that those topics are too painful to talk about right now, you need to respect this and not attempt to “challenge” them.

5. “That’s so sad.”

Why is this unhelpful?

Many people with long-term illnesses and disabilities lead interesting and fulfilling lives, and don’t need you to devalue their existence by reducing them to a single worded emotional state…and if the person is feeling sad about their disability that day, they really don’t need you to point it out to them.

What to say instead?

If you are not directly affected by the person’s ailment: JUST. DON’T. SAY. ANYTHING.

For extra points, spend some time examining why this is your default assumption about the life of a disabled person. Learn more about the reality of our lives by consuming media with disabled actors/characters, and by consuming content by disabled creators. You can also follow a huge array of people with disabilities on social media for a guilt-free glimpse into their private lives.

If on the other hand, you are a close family member or friend or a newly disabled person, its perfectly reasonable that you may be dealing with your own grief. However, it’s still important not to project these feelings onto the disabled person. Have the primary discussions about how you are feeling with a neutral friend or maybe even a mental health professional, and when you do speak to your disabled loved one, take responsibility for your feelings as your own, and acknowledge that they won’t last forever.

Examples include: “I’ve been feeling sad that we can’t do “x” together anymore, shall we brainstorm some new hobbies that we could try together?” or “I’m sorry if I’ve been acting distant recently, honestly, it’s been really confronting for me to see you in a wheelchair, but it’s something I’m going to start working on for the sake of our friendship.”

6. “You’re so lucky that you have [insert name of parent/friend/partner].”

Why is this unhelpful?

Chronically ill and disabled people are capable of well-rounded, healthy relationships just like everyone else. We have needs, and we have things to offer. Just because these needs and offerings may differ from what we see in a relationship between two able-bodied people, doesn’t make the relationship any less valid, and it certainly doesn’t make the disabled person “lucky” to have the other.

When this phrase is used in a disingenuous way, there is also the rather icky subtext that a parent or partner is caring for, or staying with the disabled person out of pity or a sense of duty, not love, and that therefore it is not a really a real relationship.

I don’t have my partner because I am lucky, I have him because I am a f*cking delight to be around. (at least outside of the luteal phase.) The lucky part is that I was fortunate enough to meet an amazing person at the right time; there is no “luck” involved in someone choosing to love and treat a disabled person like a whole human being.

What to say instead?

If you know the disabled person personally, and you genuinely want to express your gratitude for the support they have been receiving from their loved one, you can try something like: “I’m really glad that “x” has been close-by to support you during this challenging time.” or “It’s great to see that you and “x” have such a strong relationship, and have only grown closer during this tough time.”

Relationships are not transactional, so don’t imply that the disabled person is somehow “privileged” for receiving help. Relationships take work from both sides no matter the circumstance, so if a relationship is flourishing despite the immense stress of a new disability or severe illness, acknowledge that both people contributed to that, and can be proud of themselves.

7. “Have you tried “x”? It cured my second cousin’s sister-in-law!”

Why is this unhelpful?

I know, I know… a lot of the time y’all really are just trying to help! BUT these comments are unhelpful for a few reasons

First of all, people with chronic illnesses are often forced to spend a lot of time researching diagnoses and treatments on their own, and often become experts in their condition. It is VERY irritating when someone thinks that they know more than you about your own body from a quick google search, or a third hand story they overheard at brunch.

Secondly, many disabilities and illnesses have no cure, and the affected person has to work hard to grieve their old life and adjust to their new one. Being told to start taking chances on unproven/fringe treatments can be very emotionally draining, so this is definitely not something to start recommending unsolicited. Similarly, there are many false narratives floating around these days about treatments or cures for various ailments with little to no evidence behind them. Having these presented to you as fact and being expected to be thankful for being given false hope is also lot of unnecessary emotional labour.

Finally, whether or not it is your intention, this question often carries the implication that the person is not already doing everything they can to get better. Believe me, they are. Even if a condition is hypothetically curable or can be improved, its common for long-term patients to need to take breaks from treatment (or pursuing treatment) due to medical burnout, financial strain, or simply having other priorities. Recognise that the disabled person is the number 1 expert on their body and condition and that (this may sound harsh BUT) it is unlikely that you have anything to bring to the table.

What to say instead?

Despite my mounting aggression in the previous paragraph, I do believe that there are OCCASIONALLY times when an able-bodied person’s perspective on treatments may be helpful to a disabled or chronically ill person.

Examples include when the disabled person is actively seeking out a new doctor or treatment plan but is struggling to find one, when they DIRECTLY ask you for your advice, or when the able-bodied person personally knows someone who has recovered/improved from the SAME illness due to a specific treatment protocol.

In the case of the last example, start with a broad statement like “I actually know someone who was in treatment for the same problem and was really happy with their results, please let me know if you would like me to put you in touch.” Allow the sick person to make the first move if they would like to pursue this, and let the primary communication happen between them and your friend (as they actually have the first-hand experience of the treatment). If you don’t know the other person well enough to make the introduction, or to know whether or not they were suffering from the same illness, it probably isn’t appropriate to bring it up.

In the other cases, start by establishing what would actually be most helpful to the sick person. Simply asking them how you can help or what they are looking for from a doctor or treatment will clarify whether or not you are able to provide them with what they need. When you know what they are looking for, its also important to think about whether or not you are willing to make the necessary investment in providing that help. Unfortunately, something you saw on your YouTube is rarely going to be a cure-all, and providing actual help may require you to learn a lot more about their condition, read scientific papers, drive them to appointments, and stand by them when something doesn’t work out. Please do not offer to help if you are really only offering “quick fixes” that are convenient to you.

Conclusion

To tie it all up, I would say that this post really boils down to a few key pieces of advice:

  • Appreciate that illnesses and disabilities present themselves in a wide variety of ways, some of which may be at odds with your previous beliefs.
  • Realise that people with disabilities are whole people with value and skills, even if they differ from what society has conditioned us to immediately recognise.
  • It’s ok not to know everything, or find some things challenging, but it is not the disabled person’s responsibility to educate you or make you feel more comfortable with these things.
  • If you don’t know someone well enough to have a proper conversation with them, mind your business.

Disabled folks: Do you agree with this advice? Are there any other irritating comments that you would like to see addressed here?

Able-bodied folks: Was this advice helpful? Are there any other scenarios that you aren’t sure how to navigate when interacting with disabled people?

Let me know in the comments below!

P.S…

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