Research shows us that it takes between 5-10 years to get diagnosed with a chronic illness. Some stats for specific conditions are:
- Ankylosing Spondylitis – Research shows that it takes 1/3 of patients up to 10 years to get a diagnosis.
- Psoriatic Arthritis – For 30 percent of PsA patients, it took more than five years to get diagnosed.
- The average time to diagnosis for patients with rare diseases is 7.6 years in the Untied States.
But what is the driving force between these wait times? Surely not every doctor is useless at diagnosing more complex conditions?
You are right in your thinking, although there are lots of terrible doctors there is much more going on here than shitty medical care. There are a number of factors that affect us when we walk into a doctors room, here at the top reasons why your diagnosis might be delayed:
- The way we train doctors – doctors are taught in med school that the simplest answer is the right one but with chronic illness there is no simple answer. This is often the first stumbling block for diagnosis. It isn’t until the more ‘normal’ stuff is ruled out that doctors will then move onto the less likely stuff.
- Normalization of pain – those who have a uterus are more likely to have their pain normalized even if it has nothing to do with their uterus. Unfortunately it’s considered normal for people with uterus’ to have a certain amount of pain.
- Patriarchy and the history of hysteria – despite modern medicine supposedly having moved on from the ‘it’s all in your head’ narrative, it still hangs around like a bad smell and crops up when a doctor has run out of options. They don’t think to blame themselves and instead blame the patient.
- Medical bias and racism – no part of society is free of racism and it is insidiously present in the doctors office and the way patients are treated for pain. Black patients are 22% less likely than white patients to receive any pain medication.
- The data gap – we spoke about the data gap in last weeks newsletter but in case you missed it, science uses the white male as the ‘average’ person which basically only accounts for 10% of the population in research and it’s seriously harming, and even killing, the 90% who aren’t accounted for.
These are just the top reasons that might be delaying your diagnosis. There are many other factors like social status, education level and even just geographical location. That’s not even to mention any personal bias your doctor might have.
These bias’ come into play even before you open your mouth and start talking about the symptoms you have. As we all know, many chronic conditions have similar symptoms and even the medications we take can cause side effects that can be mistaken for symptoms. The issue comes from the way the medical system is actually set up in the first place.
Now that we’ve talked about the many factors that can affect the time it takes you to get a diagnosis let’s look at why, if we know it takes this long, we haven’t done anything about it?
The simple answer is to do this, we would have to completely restructure our current medical system.
At the moment our medical system is based on reactionary medicine. The patient presents with a symptom (or set of symptoms) and the doctor follows protocol on how to diagnose and treat that set of symptoms. But this system relies on the patient getting better at some point. The problem occurs when you have a long term illness from which you don’t recover.
The system of see a symptom, cure a symptom doesn’t work when you need long term care. The 5 minutes that we get with our GPs and specialists don’t account for complex cases and the amount of data and information that needs to passed to each person in the medical team.
Research shows that to provide adequate care for the top 10 chronic diseases you would need to see a doctor for 3.5 hours daily which is just simply impossible with the current system. In fact this number rises to 10.6 when the condition is properly managed ( i.e. most of us who are chronically ill and not seeing our doctors for 3.5 hours daily…)
The other issue that arises is that our GPs are supposed to act as the central point of contact for coordinating our care but many don’t have the right training on dealing with chronic illness and have limited access to educational resources or specialists.
Research has shown what is actually needed is a central hub, one that actually doesn’t deal with even with just the ‘medical’ side of things. This would include fitness, nutritional help and even mental health support. From there they would then coordinate with your health care professionals to provide you with a complete package that encompasses all of these elements.
By looking at the patient as a whole it would cut down the wait times for diagnosis as you would be looking at the whole picture from the start and there would be a point of contact overseeing that. Unfortunately they would have to completely overhaul the current medical system which is unlikely to happen in our lifetime. However with the introduction of fitness gadgets like the Fitbit and apple watch, more research is going into the benefits of this ‘whole’ approach.
- Pain and prejudice by Gabrielle Jackson
- Invisible Women by Caroline Criado Perez
- The Health Gap by Michael Marmot