The 5 Stages of a Chronic-Illness Diagnosis
It’s a process, not an event
You probably know somebody who always seems to be sick but can’t really explain why. Or maybe you’re the one who’s been labeled a problem patient. And if you’re anything like I was, you probably think diagnosis works the way we see on TV: Somebody with a mysterious illness heads to Princeton-Plainsboro Teaching Hospital or Grey Sloan Memorial Hospital, and an intrepid doctor figures out exactly what tests to run to solve the mystery. Alas, things do not usually work this way in the real world.
When my health began to decline rapidly in 2017, I didn’t know how diagnosis worked, either. I was still looking for that elusive intrepid doctor who would explain what was going on with my body. But when I couldn’t find them, I decided to start talking to other people with chronic illness about their diagnostic experiences and eventually turned those conversations into a podcast called No End in Sight. Sixty-plus interviews later, I’ve realized that misconceptions about the diagnostic process leave many patients unsupported and uncertain about their own symptoms. Here’s what I’ve learned about the stages of becoming chronically ill.
Stage 1: Alarm
This is when you first realize your symptoms aren’t going away on their own. It may happen dramatically, when a nagging pain becomes unbearable, and you take yourself to the ER. Or it may happen gradually as it becomes harder and harder to get out of bed each morning, until one day you realize your limbs aren’t responding properly to your brain. Many people will turn to internet wellness protocols at this stage: diets, supplements, exercise, more sleep.
This is when you start pushing your doctor to investigate, which can be harder than it sounds. Almost everybody I’ve interviewed (and hundreds more on Twitter) are initially told their symptoms are almost certainly caused by depression, stress, or anxiety. When patients bring their initial symptoms to their doctors, they are almost never offered other tests or treatments. They frequently leave that appointment feeling confused and dismissed.
Stage 2: Symptom validation
Because your doctor told you it’s a mental health problem, you start to wonder if it’s all in your head. But if you’re financially and energetically able to persist, you begin many different rounds of diagnostic testing, and your doctor might tell you it’s good news when tests come back normal. But when your quality of life declines due to unexplained symptoms, this does not feel like good news.
Something I really want to emphasize about stage two is that it’s possible to spend years or even decades with validated symptoms but without a diagnosis. If somebody is stuck in this stage, it does not mean they are faking or exaggerating or malingering. It does mean they need support.
Stage 3: Diagnosis
If you’ve never been through it, diagnosis probably doesn’t mean what you think it does. People often begin treatment during stage two because lots of medication is symptom-specific rather than diagnosis-specific.
While a diagnosis often validates your experience for other people (and may improve your eligibility for benefits), it may not have any impact at all on your treatment or prognosis. To make things more confusing, a lot of people with chronic illness will receive different and sometimes conflicting diagnoses from different doctors.
It’s possible to spend years or even decades with validated symptoms but without a diagnosis.
This is especially true with clinical diagnoses like myalgic encephalomyelitis (ME), fibromyalgia, post-treatment Lyme (the controversy there is beyond the scope of this post), and connective tissue disorders including hEDS and HSD. But autoimmune diseases are also often misdiagnosed or conflated, so it’s totally normal for somebody to be diagnosed with one condition but then to find out later that a different condition is to blame. I’ve interviewed two people with EDS who were initially diagnosed with lupus, someone with Lyme who was initially diagnosed with diabetes, and someone with diabetes who was initially told she just needed better sleep.
The most important thing I want to say about diagnosis is that if you know somebody who’s recently been diagnosed with a chronic illness, don’t assume they only recently became chronically ill. They’ve been chronically ill since stage one, which may have begun years ago.
So, don’t assume a diagnosis is bad news. It might be bad news, because it means this problem is probably never going away. But it might be a relief to finally get an explanation, or it might feel like permission to finally slow down and take care of your body. Or it might feel irrelevant because it has no impact on your treatment protocol or quality of life. It’s okay to ask a loved one how they feel about a diagnosis. And if you’re not sure what to say when somebody tells you about a diagnosis, just keep it simple. It’s best to acknowledge that chronic illness sounds tough without trying to find a silver lining or look for ways to solve the problem.
Stage 4: Effective treatment
Like I said before, treatment often begins at stage two. But for lots of people, diagnosis can open the door for new protocols. Unfortunately, efficacy is a relative concept and can change with time.
Insulin is an effective treatment for diabetes because it helps a patient manage their blood sugar. It’s not a cure for Type 1 diabetes because it does not stop the immune system from attacking the pancreas. If it weren’t for insulin price gouging, it would be pretty straightforward.
Remicade can be a pretty effective treatment for Crohn’s disease. Some people regain a lot of their quality of life once they start taking it. Others don’t get any relief. Some experience temporary relief but eventually need to start looking for new protocols.
There are no standard effective treatment options for ME, so some people experiment with lifestyle changes, off-label drugs, and new diagnostic testing to look for emerging explanations for their symptoms. If someone isn’t getting better, it doesn’t mean they aren’t trying as hard as they possibly can to do so.
Effective treatment also doesn’t always mean your life will go back to normal. It might mean bringing your pain level down from a six to a four. It might mean you prioritize rest so you can reliably have two functional hours most days. It might mean you’re able to work.
Effective treatment does not mean you can stop thinking about your illness. Sticking with a protocol requires time, energy, and money. It also takes a ton of cognitive overhead to stay on track and monitor any symptoms for a possible relapse.
Stage 5: Grief and acceptance
While this stage doesn’t quite fit neatly into my chronology, it’s really important to talk about. Becoming chronically ill can feel like becoming an entirely different person. Maybe you used to be an athlete with a full social calendar, but your illness has turned you into a person who has difficulty climbing stairs or keeping plans.
So, while you’re learning how to care for your new body, you’re also grieving the person you used to be. Meanwhile, your friends, family, and colleagues are waiting for you to get better so you can be that athletic socialite again. It might feel really difficult to share your grief with them, because they’ve put your relationship on hold until you can resume your role as their athletic and social companion.
Over time, you might come to accept your limitations and focus on building a life that works for your body as it is today. You might focus on creating the best possible quality of life for yourself right now instead of investing all your time, energy, and money into chasing optimal health. This idea makes a lot of people uncomfortable, because it’s easy to equate acceptance with giving up.
But acceptance is not giving up. Grief and acceptance are also a process. You might bounce from one to the other. You might feel both or neither. You also might think you’ve worked through both and then wake up one day with new symptoms, putting you back at stage one. Once you’ve been diagnosed with one chronic illness, you’re unfortunately much more likely to develop another, so many people find themselves jumping between these stages indefinitely.
Of course, not everyone’s experience is the same. Some people are diagnosed quickly, and some find a really effective treatment right away. But it’s not safe to assume that’s the case for everyone. It is safe to assume that chronic illness is complicated, and we all need support and accommodations at every stage.