“But you don’t look sick!” is probably one of the most frustrating things a person with an invisible illness can hear. Yes, it is nice to hear that we don’t look like death, but hearing the words “but you don’t look sick” undermines and discounts the illness the person is struggling with. These along with “but you’re too young to be that sick” or “but you seemed fine last week” are often interpreted by the sick person as “ I don’t believe you are really sick. I need more proof.” Realistically peaking, the majority of the time, these are not attacks against the person who is sick, rather a way of a healthy person trying to understand how a person who looks normal on the outside can be sick on the inside. People tend to have preconceived notions in their minds of what certain people or experiences must look like.
So as someone who has an invisible illness such as Lupus, Lyme, or any other illness that may not present itself as a visible illness, what is the patient to do when they are being challenged not just by society, or maybe by others who believe they are trying to do good such as check to see if your disabled parking badge actually belongs to you? I would suggest using these as ripe opportunities for education. If a stranger feels strong enough to comment on your intimate medical details, then it can be deemed appropriate to take the time to educate them on your invisible illness should you choose to. Choosing to be an advocate is a personal choice- while it would be ideal to live in a world where people don’t question each other and all differences are accepted- until then it is up to us to educate and advocate for the change we would like to see.
So how do we explain to friends or family member that some days might be better than others? spoon theory. This is a very helpful way of framing to someone how some days might be better than others. This theory can be applied to other invisible illnesses such as depression as well.
It’s a tough world out there, and with an invisible illness, the world is made even more complicated. We cannot control how other people react to us, but we can control how we respond to other people. Go on out there and advocate, Spoonies, you’re the change we need!
Alexis has been a part time contributor to the online website Patientworthy which is dedicated to education and awareness of rare and serious diseases. Links to articles written by Alexis: