You don't look sick?!?

#1

What does sick look like? Does sick even have a look?

This is a question that I’ve heard all too often, and yet I’m still confused every time I hear it. Unfortunately, it is not until I am in the hospital or experiencing inflammation or a lupus flare that I apparently “look sick”. But why is this?

Over the last few years, I have used this question as fuel for me to normalize “masked” diseases for the public. There are times when this comment is made as a compliment, but there are other times where this comment is made based on external experiences. We must continue using our voices and platforms to educate the public.

Not to mention, as we meet newly diagnosed patients, we can also prepare them for this question or comment. As time passes, I don’t believe hearing it makes it easier to deal with, but I do believe embracing it energizes the desire to continue advocating.

How do you explain your illness when you’re asked this question? Do you feel a need to explain? Do you ignore the question?

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#2

i’m not sick. i’ lve with a stroke

#3

I often find myself unable to respond to people when they say “you look so well!” or “you don’t look sick!”. I have Stage IV Neuroendocrine Cancer. This means that I’m on permanent treatment which has undesirable side effects. When people see me, they are seeing the person who for that day is able to manage the side effects and symptoms of cancer and treatment, that’s why I “don’t look sick” because on that single day I am feeling well and strong enough to leave my house and face the world.

I guess also I am not the stereotypical cancer patient. I am young(ish), haven’t lost my hair, my weight has remained stable and I have continued to exercise when I feel well enough to do so.
When people tell me that I 'look so well" I feel as if they do not truly believe how serious my illness is. My illness is life limiting, it is being managed at the moment but I will never have a treatment-free life. And as soon as the treatment I am on now stops working, I will be placed on another more aggressive, and probably invasive, treatment path. I live with that uncertainty every day. I often wish people and our society wouldn’t place so much value on how we look.

#4

I usually say,” And you don’t look like a doctor.” I am very open and kind until that nonsense gets thrown around.

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#5

I can totally relate to how you are feeling! X