What are invisible conditions?
Chronic invisible conditions include illnesses, disabilities and neuro-divergences that impact on the functioning on a person, but usually the effects are not directly observable from the outside. It is estimated that around 1 in 5 people have some type of invisible condition. Example of invisible conditions include:
- Chronic fatigue
- Anxiety, depression, and other mental illnesses
- Autism, ADHD, and other neuro-divergences
- Lupus, fibromyalgia, and other conditions
- Multiple Sclerosis, Lyme disease, and other diseases
The vexation of invisibility
This might seem like a fairly innocuous thing to say, but it completely invalidates what it’s like to live with an invisible condition. It is highly dismissive of the pain I carry. Rather, you thinking that I look normal reflects that you only see what I am choosing what I share with you.
When I disclosed my autism diagnosis to a guy I was newly dating he responded: “You don’t look autistic. I’m not going to accept that you’re autistic. I’m going to pretend you’re normal.” My autism is part of my identity, so I felt like this was an outright rejection of who I am. Needless to say, we did not date for long.
Strangers also do the “but you look normal” thing. When they give us a death stare for using the accessible bathroom. When they question why we have a accessible parking permit. When they question the need for our accomodations at work or school.
“But you look normal” even complicates the diagnostic process. I was refused a referral to a psychologist for an autism assessment in my 20s, because I was able to make eye contact (That’s neurotypical speak for: “you’re too normal to be autistic”). Many invisible conditions do not have a specific test that can definitively prove that it exists, rather they rely on experience and knowledge of the diagnostician and/or ruling other things out. It can be expensive, frustrating and dehumanising to go through these processes, especially when dealing with health care professionals and friends or family that do not believe you. And often, even after an official diagnosis, those arounds us often still reject our diagnosis, which makes it harder for us to accept it fully.
4 tips on how to support someone with an invisible condition
If someone has chosen to disclose their invisible condition here are four tips on how you can support them:
Believe us. We are not making this up. If we have disclosed our condition to you, don’t be dismissive. Show support and understanding, and if you’re not sure how to do that, maybe say: “How can I best support you. What do you need from me”. We might not need anything, we might just be showing that we trust you.
If we have asked you for something, we’ve probably already agonised over that decision and beaten ourselves up about letting someone else down. Please be patient. We are not lazy or trying or making excuses: our pain is real. When we ask for a favour, call in sick, cancel plans or are trying to get accomodations at work or school: We are trying to be advocates for our needs.
Stick around. A broken arm heals. A cold usually resolves itself. But chronic conditions stick around. People with chronic invisible conditions do not get the relief of the condition resolving itself. This can be a significant strain on our support systems. It can even lead to our relationships dissolving, because for some people it’s too much to support someone with an invisible condition.
So stick around, because we need you. I would like to think that even with my invisible conditions, I still have plenty to give to you as well!
Empathise. Empathy is when you understand something from another person’s perspective. Not everyone experiences their invisible condition in the same way as others, especially not if it’s mixed up with more than one invisible condition.
Ask me about my experiences. Most of us are experts on our conditions, because not only do we actually live them, many of us get involved in advocacy, talk to others with the same condition as us, and do a lot of research on the topic. Be careful that you don’t unintentionally minimise our experience either.
Don’t offer solutions (unless asked). This one is very counter-intuitive. If you’re my friend, it’s likely because I consider you to be a good friend, you’ll likely have empathy and be generous. And good friends like to help each other by sharing tips. However – wait for me to ask you. Unless you happen to be an expert at something to do with my condition, it is seriously unlikely that I haven’t already tried it.
When my migraines became chronic I researched non-stop and saw a bunch of different specialists. I tried different medications, supplements, diets, exercises and holistic treatments. I tried CBT, talk-therapy and neuro-feedback. In hospital I tried infusions, morpheine and a week long lidocaine drip. I tried Botox and even had a neuro-stimulator implanted in my brain. I went to church and was prayed over in a more than a few healing sessions. Nothing worked. But – I was very well researched, both about potential migraine treatments and about how I experienced migraines, such as onset and triggers. And still people would come to me with absolutely ridiculous suggestions to cure my migraines, like:
- Have another baby (suggested by a GP)
- Get a hobby to distract yourself
- Rub half a lemon on your head
- Try doing a green juice cleanse
Tips on how to support someone who hasn’t disclosed their diagnosis with you.
If someone hasn’t disclosed their diagnosis with you, that may be for good reason. Some conditions carry huge amounts of stigma. Many people have experienced discrimination. It takes courage to share a diagnosis and doing so is a deeply personal choice. Honestly, some days I can’t face the “but you look normal” conversation.
Since so many people live with an invisible condition, the best thing may be to assume that everyone has one and treat everyone with kindness.
If you have an invisible condition I would love to hear your experiences as well. I’ve written from an autistic/migraineur perspective and your experiences may be different.
My next post will be on spoon theory and how those with invisible conditions can use that in their life. Subscribe to have the post delivered to your inbox!