When you live with an invisible chronic illness there’s a phrase you hear a lot; “You don’t look sick!”. It’s so common that many of us don’t even bat an eyelid when these words are uttered. But whether it’s from a well meaning friend, a doctor or a complete stranger, it’s often hard not to question these four simple words. Are they questioning the validity of my illness? Are they challenging me to prove how ill I am? Are they accusing me of faking it? Or are they just simply making an honest observation?
On top of this, we also have to contend with complete strangers judging us on our outward appearance and our need to use mobility aids or services designed to assist disabled living, when we don’t look disabled. These confrontations can sometimes be aggressive and intimidating.
But the truth is, the symptoms of the majority of chronic illnesses do not present themselves physically. My pain is not etched in ink on my skin. My exhaustion doesn’t cause an injury that can be physically seen. And I don’t turn bright green when I’m so dizzy I feel like I’m going to pass out. And can someone please explain to me what ‘sick’ is supposed to look like anyway?
These types of comments and judgmental behaviours have happened to me more times than I care to remember, but they still shock me sometimes and I never really know how to respond. Most of the time I brush them off and it doesn’t bother me, but there are times when I get angry and frustrated. But how should I respond?
I recently had a new dentist visit me at home (I know I’m very lucky to have this service in my area) He hadn’t met me before, but he had obviously read my file and, the fact I needed a home visit rather than treatment in the clinic told him how poor my health was.
The first thing he said when he walked through the door was; “I have to say, you look really well.” (said in a very patronising and accusing manner).
Now, to someone with good health this is compliment, but to someone with a chronic, invisible illness, statements like this come across as; “You don’t look sick” or “I don’t believe you are as sick as you make out” or, more bluntly; “I think you are faking it”. Am I being too sensitive? Maybe, but you hear these statements a lot when you have an invisible illness, and sometimes it’s hard not to take them personally.
We often get accused of faking it. Like when people judge us for using a wheelchair, even though we can walk. Or when we use a blue badge and a disabled parking spot, even though we don’t have a visible disability. Or when we use a disabled toilet, even though we don’t look disabled. Or when people see us on our “good days” and we appear to function “normally”, yet they do not see us on our “bad days” when we are too sick to even leave our beds. We constantly feel like we are having to prove how sick we are, and justify our need to use facilities and services designed to assist people with disabilities or disabling illnesses.
The fact is, the majority of people that use wheelchairs can stand and walk short distances, but we use wheelchairs as a mobility aid. Walking is often exhausting and painful. Mobility aids make our life easier and less painful, but they also help us gain the independence we crave and deserve.
So why are so many people still shocked and often judgemental when they discover this fact? I believe it’s because of how disabled people, and wheelchair users in particular, are portrayed on TV and in films. Maybe a disability needs to be physically “seen” for viewers to believe in the character? Whatever the reason I know it needs to change. “Real” disabled people need to be represented in the media for the general public to adapt their views.
So how do you reply to comments like this? I was stunned into silence for a few moments, and then I replied calmly; “Well I guess that’s why it’s called an invisible illness”
These comments are not always spoken in malice. Sometimes they are born from ignorance. It’s one of the main reasons why I fight so hard to educate and to raise awareness about invisible illnesses.
Please remember; people have illnesses and disabilities that can’t be easily seen, but it doesn’t make them any less real. Please don’t judge someone on their outward physical appearance, you have no idea what is going on internally within their body and mind.
And most importantly; The most powerful words you can say to someone with an invisible illness are; “I believe you” Take care x
September is invisible illness awareness month. What frustrating or rude comments have people said to you because your illness is invisible? Do you find people judge you because they cannot see your disability?
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You have nailed this and written it so well! It’s very frustrating and it’s hard to know how to respond. Raising awareness is so important in tackling lack of understanding and ignorance, and in empowering ourselves to speak up and increasing compassion. Brilliant post!
Thank you Caz. Take care.
Yes, things rings true!
To be honest, 99.9% of the time I don’t care what other people think or say. I’ve never really had too many people say anything to me directly. Maybe I look intimidating or something, but it just doesn’t happen. If it DID happen, I would probably tell them to get stuffed! I know it’s hard to convey the tone of how the dentist said what he did, but it does seem you are a bit sensitive. Not surprising, considering all that you go thru each day! I just don’t understand why you feel the need to justify yourself to people that you don’t even know. You probably DO look really well to him, because all of his other patients are probably quite elderly, or sick looking, and to him you’re a young, attractive woman who looks pretty healthy (on the outside). I don’t think that people think sometimes, before they speak. But then again, should we expect them to know how to speak to us, when they have no concept of how we are feeling? When we vary from day to day in our moods, our symptoms, and how our day has been so far? If these things aren’t even taught in medical school, I’m sure dentists know nothing about it either. At an rate, I just give people a pointy, evil glare, and hope they’ll get the message that they’re an idiot! Take care Jo. Love from Canada <3
The problem is it’s not just ppl we don’t know, it’s family! She was just using the dentist as an example. In order to get through life we need support, can’t do it alone. Also, why let ppl off the hook? We need to educate
Exactly. When medical professionals say this to me it’s like a dagger to my heart. I suppose they are trying to be positive and encouraging, but to me it feels patronising and is dismissive of all the pain I have been going though. It also runs as a constant thread with friends and family who, when they see me appear ‘normal’, they feel I have been exaggerating my condition even though I will be paying for this short interaction for days afterwards.