The discussion about how to cope with an invisible illness is ongoing. Most encouragement and support comes from friends, family and support groups. Several awareness sites and campaigns are out there. We’re learning how to better interact with people who have invisible illnesses. It’s slow, it’s messy, it’s offensive at times, it’s heartwarming at others. But there is an aspect of invisible illness that is frequently left out of the conversation. This is the diagnostic process.

This process, especially for chronic conditions, usually starts after a few doctor’s visits. A few things happen every so often, you don’t know if they’re related, but you start to see patterns emerge over time. Or the same things keep happening. Sometimes they get worse. After a while, you begin to think that something is wrong. Not just on those occasions when you see the doctor, but more and more frequently, you find yourself needing to stay home more often. Or taking over-the-counter medication every day. The beginning of this process is hazy.

The diagnostic process is the time when you know something is wrong, but you don’t know what. This is when the search for answers begins. For some people with invisible illnesses, this process lasts decades For others, it may last a few hours waiting on blood tests. The diagnosis is not guaranteed. The progression of the illness isn’t guaranteed. The severity? Also no promises. But fortunately for some, a diagnosis is made. Regardless of the prognosis, there is power in knowing the diagnosis. Once you have a diagnosis, you can figure out how to deal with whatever it is.

But what if this process takes more than a few days? This part is usually left out of the Coping Skills Manual for Life and Living, if you were cool enough to get one once you reached some arbitrary mature age. This is the part where you’re stuck in limbo.

So after you start getting the idea that something is wrong on a bigger level than these acute random occurrences of illness, you might be referred to a therapist. Your doctor might be writing your symptoms off as stress, depression, anxiety or any host of psychological symptoms. Or they know that you’re in for a hellacious time. You’ll probably throw out that referral, thinking that your doctor was saying that you were crazy. You probably posted on social media how it was crap, that your symptoms are real, that your doctor is an idiot, that they think you’re just a drug-seeker and so on. You probably vowed to never see that doctor again.

Here’s the thing: you’re not crazy. That therapist is going to help you deal with the worst part of a chronic illness: acceptance and adapting. Even without a diagnosis, a therapist can help you with the worst parts of what may likely be a long road in front of you. Go dig up that referral or call the office back, saying you misplaced it. Go see the therapist. Get some advice on what to do.

So how do we deal with the diagnostic process in our daily lives? It’s not like you’re living in a “pre-sick” state. You’re essentially living with a chronic illness that doesn’t have a name until you figure out what’s going on and whether or not it’s really chronic. All the rules of having a chronic illness apply here. There is a buttload of support and advice out there for how to deal with the daily aspect of living with a chronic illness. Sure, you’re in a different stage, you’re living in ambiguity, but even when you get a diagnosis, you’re going to face similar questions.

This is not to say that having a chronic illness and being in the diagnostic process are the same. They aren’t, by any means. The biggest difference is the testing. Other differences are going to be treatments and therapies. You’ll receive supportive treatment during testing sometimes, but not always. In some situations, you won’t want to take medications so your test results will be authentic. It makes no sense to go into a sleep study when you’re on a daily dose of sedatives or stimulants.

Testing comes in a wide variety. Pokes, prods, walking, running, breathing, scans, blood draws, lumbar punctures, biopsies, exploratory surgeries, measurements, pill-cams, biological sample collection, skin tests, scopes, pin pricks, observation, overnight studies, long-term monitors. Even the primitive “Here, eat this, let’s see if you get a reaction” is a diagnostic tool. Everything they can think of to figure out how to evaluate a symptom, they will do. This is the part where doctors gather as much information as they can to figure out what is causing your symptoms.

The testing process can be lengthy and painful. The worst part is usually the time between the test being over and receiving and interpreting the results. It may only take a few tests to get a diagnosis. If that’s the case, awesome! You did it! Now onto appropriate treatment! You can find support groups, doctors, therapies, coping skills and so forth.

In many cases, however, you’ll deal with the second worse part. This is repeatedly receiving normal test results. After a couple tests, your doctor will get frustrated. After a few more (likely invasive) tests, you’ll start to question your own sanity. You may even check with that therapist to make certain you really aren’t a hypochondriac. I mean, at least that’s a condition with a name and a treatment plan. Whatever your diagnosis ends up being, the process of getting there is one of the most challenging things you can do. Especially if you’re stuck in a lengthy search for years.

The diagnostic process is total limbo. You have no idea if you’ll be diagnosed with something curable, something chronic, something disabling, something progressive or something with a high mortality rate. The process is different for every person. It takes a while. Doctors undervalue your symptoms, friends and coworkers think you’re lazy, your parents think you’re a hypochondriac or irresponsible, you might begin to blame yourself. You have to learn to advocate for yourself when it feels like everyone is against you.

Even if it takes your whole life, you might never know. I really suggest that therapist. Because you’re not crazy—you’re looking for answers. The journey for knowledge can be lonely and frightening. In this case, even painful and feel somewhat inhumane. A diagnosis can be like a needle in a haystack. And it seems futile to keep looking. But a therapist can help with that process, even if you end up learning that it’s the lovely “idiopathic x” syndrome screwing with your life. They can even help figure out how to better cope with your friends and family. At least you can figure out how to cope, even if you never figure out why you’re suffering.