The other day, a friend of mine who has, like me, been making the rounds of doctors and navigating the choppy waters of diagnostic testing for several years, finally received a diagnosis. This was a happy moment. After the long struggle for her pain to be seen and understood, she was given a name and a treatment plan, and as her friend I was happy for her. But as a fellow sick person, I also felt sadness. It wasn’t jealousy so much as a profound sense of loss: being chronically ill but undiagnosed can be a lonely and isolating thing, and I’d just lost another commiserating comrade. To be sick and not know why is to simultaneously be a member of perhaps dozens of illness-specific support communities and to truly belong to none of them. You join up with all of the groups that have similar symptoms because you think there’s a chance you might have what they have, and each time a test comes back negative, ruling out another swath of possible disorders, you lose all of the friends you made over your shared experiences that turned out not to be shared after all. There’s no bad blood, but there’s also nothing left to talk about. Your personal collection of symptoms doesn’t add up to a story that fits in their space.
People who don’t deal with disability or chronic illness often don’t understand why negative test results aren’t always good news. To someone whose body functions the way it’s “supposed” to by able-bodied standards, negative tests mean everything is as it should be. But to someone living with unexplained, life-altering symptoms like me, a “normal” test result doesn’t mean I’m healthy. It just means no one knows why I’m not. The symptoms don’t go away just because no one’s connected them to a marker that indicates a specific condition; just because no one can, so far, see what’s wrong, doesn’t mean that I can just get up out of my wheelchair and start running or doing heavy lifting. Even putting aside the hurdles of being taken seriously, without a diagnoses, by the gatekeepers to necessary resources , this weird limbo can make your very presence in disability and illness communities feel provisional. Even if it’s been years, your disability is considered temporary until proven otherwise. It can start to feel like you’re just waiting for permission to be sick.
I write this in part because I know that there are hundreds of people out there like me – sick, scared, unsure and unnamed, who may need to hear what I’m about to say. But I’d be lying if I didn’t say that I also write it, in part, because I wish someone would say these things to me. If you are disabled or chronically ill and still don’t have a diagnosis, just remember:
Doctors don’t know everything.
Yes, they are trained professionals who have studied bodies for many years and know more about how they work than most people. But they are not gods. They aren’t psychic or omniscient; they can be wrong, and you don’t have to believe that they know your body better than you do.
Sometimes a bad experience with a doctor is as simple as meeting a well-meaning and competent care provider who just can’t see everything you can, but sometimes it’s medical gaslighting from someone who puts their own agenda above your well-being and only wants to tell you that you’re just too fat, too old, too dramatic, too something.
You are allowed to ask for a second opinion. You are allowed to ask for that referral to another specialist, even if the last one told you not to bother. You are allowed to follow up on your own hunches and trust what you know about the way your own body behaves, even if no one else can see it. A doctor dismissing your concern isn’t the end of your road to diagnosis and it definitely doesn’t mean you were imagining your symptoms. It only means it’s time to go down a different path, and look for a guide you can trust.
You don’t need permission to use the supports you need.
Again, you know your body better than anyone. While you wait for answers, you can still figure out what works for you and what would make things easier. If you discover that using mobility aids would help you continue to live your life in the way that you want, even if you have to get them for yourself, you can absolutely do that. Some people seem to think that unless a doctor prescribes it for you and insurance pays for it, mobility equipment is off-limits, but not everyone has access to that. When I got sick, I had no medical coverage and wasn’t able to work, and I got my crutches and my first small portable wheelchair for myself because the only other option was to never leave my bed. I now have a doctor’s orders to use my chair, but if I hadn’t made the decision to adapt to my changing body on my own, I’d have never even made it to that doctor. That equipment exists to be used by the people who need it to function. If you need it, you’re one of those people and you are absolutely entitled to use it.
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You have the right to take up space.
When you spend time in disability and illness spaces, where diagnoses are often as much a part of the introduction as names, it’s easy to feel like not having one means you don’t belong. As you learn the lingo, you discover words that give voice to things you’ve experienced – flare, signaling, spoons. But you don’t always feel like it’s your place to use them. It can feel as if you are occupying space that doesn’t belong to you. But here’s a secret: it does.
The definition of a chronic condition is one that has lasted three months or more. If you’ve been sick for months or even years without a diagnosis, you can identify as chronically ill. It’s not a lie just because you don’t know which illness you have.
If your condition prevents you from performing some or all of your activities of daily living in the same way that an able-bodied person would, you meet the criteria for disability. You are allowed to identify as disabled if that’s a word that you feel makes sense for your body.
Community is important, and it isn’t limited to people with an official diagnosis. Many people in these spaces openly welcome undiagnosed people and are happy to offer their support as you search for answers. Seek these people out, and ignore anyone who tries to say this community isn’t for you too.
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You are allowed to take care of yourself.
This is the most important one. Falling into the trap of feeling like your illness isn’t real until someone gives it a name has the unfortunate side effect of also making you feel like you can’t give it the attention it needs.
Listen to your body. Try to be intuitive and give it what it’s asking you for. If you need to take naps now, do it. If you feel better when you modify your diet, do that. Taking care of your body’s needs, even as they change and become more demanding and less convenient, is not only your right, it’s a necessity. The care of a sick body is different from the care of a healthy one, but every body deserves to be handled with sensitivity and compassion. You are allowed to learn your new body and give it what it asks you for.
The road to diagnosis, even without barriers like lack of access to medical care or the various -isms and phobias that cause doctors to take some of us less seriously, can be a long one. Some people don’t find out the cause of their symptoms for years; some disorders are diagnosed by exclusion and require exhaustive testing to rule everything else out; some of us may never get the answers we’re looking for. Medicine is constantly growing and evolving, and they might not even have a name for everything yet. But that doesn’t make the truths of our bodies any less real.
Living without a diagnosis can feel like constantly waiting for this new chapter of your life to officially begin: to be able to plan for what’s next, and learn to cope with what’s happening now. That feeling might be hard to shake, and it’s understandable. But it is never too soon to love and care for your body and make space for it, exactly as it is.
[Featured Image: A person sitting on a bench. Their face is in profile and their fist is touching their mouth. They have short hair, a short beard and moustache. Behind them is a tree. Source: pexels]