Before any problem can be dealt with, it needs to be identified. This axiom applies doubly within the field of medicine, where treatments required by some patients are potentially lethal for others. As such, the first step on the journey toward combating a disease is usually a diagnosis. Your doctor asks you some questions, runs some tests and then comes to a conclusion about what is wrong with you. From there, you can discuss treatment options and move on.
Of course, all of that is far too conventional for an invisible illness. So let’s deconstruct three of the false assumptions that you just accepted, comparing them to a typical fibromyalgia diagnosis.
Assumption 1: Getting to the Doctor
Think of a patient arriving at an emergency ward in the early hours of the morning. How are they injured? How badly? How did they get to the hospital? The exact answers will vary but most probably they were harmed in some terrible accident, are in severe need of help, and were transported by ambulance.
Although it seems almost too obvious to mention, getting examined by a doctor cannot happen without these three preliminary steps: noting that something has gone wrong, recognising the need for medical intervention, and arranging an appointment. Serious injuries and diseases tick these boxes quickly and easily, but when it comes to fibromyalgia, none of them are a given.
Invisible illnesses are by definition difficult to notice. Sometimes they manifest for no reason at all, and develop so slowly that being slightly sore or fatigued simply seems normal. In other cases, they are triggered by a traumatic event or accident, but symptoms of the fledgling illness are difficult to separate from the effects of the injury itself. Patients may wonder why their recovery seems incomplete without ever suspecting that something else could be wrong.
Invisible illnesses are also missing the clear signs that we associate with poor health. Cramped muscles, joint pain, bad moods and poor sleep are things that everybody experiences from time to time, without needing to consult a doctor. Seemingly normal symptoms and a general lack of awareness about chronic and invisible diseases make it easy to believe that everything is okay, that this time our recovery is simply slower than usual. Unwilling to consider the possibility that we are not fully healthy and capable, we persuade ourselves that it’s no big deal. We simply need a decent sleep, a good massage and a bit more time. Certainly not a doctor.
When nothing is visibly wrong with you, it is extremely difficult to shift your thinking from ‘something feels off’ to ‘it might be serious’ and eventually ‘perhaps I need help’. None of those thoughts necessarily follow on from each other and frankly, they are shifts that most people never make. We will be exploring some of the reasons why in the next post. But the practical effect of it is that a staggering number of sufferers never even make it to a doctor, and will therefore go undiagnosed and untreated by default.
Assumption 2: Diagnostic Tests
Let’s say that you’re in the minority and make it to your doctor’s office. You’ll then be given a blood test to check for fibromyalgia and referred to…
Actually, you really shouldn’t be getting your hopes up unjustifiably. In reality, before the testing can begin you need to convince your doctor that the symptoms are real and worse than is normal – never mind that you aren’t certain yourself! You have no way of ascertaining whether your recovery has stalled or your frustration grown, whether you first noticed it last week or last month, whether you really needed to book this appointment or only did so to appease a family member.
Your doctor may sense your doubts, or explain that you’re the only patient to have come in today without an identifiable injury or specific complaint. And they might send you home with some basic painkillers, instructions to have an early night and the business card of a good masseuse.
But hopefully, eventually, the doctor will take you seriously and will proceed to recommend a long list of bloodwork, tests and scans, assessments of your nerve conduction speed, your digestive tract and more. They will cost you significant time and money… and none of them will indicate that you have fibromyalgia.
Fibromyalgia cannot be detected with a blood test (though research indicates that we are getting closer) and your regular GP is unlikely to even consider it as an option because its symptoms overlap with so many other serious diseases. Over the next few months, you’ll be comforted by lots of good news that you don’t have X, Y or Z, eliminating the more widely known possibilities one by one, but you will not feel any closer to guessing what it is that you do have.
Eventually, your doctor will sense that something is unusual and refer you to someone with more experience in a potentially applicable field, which may or may not include fibromyalgia. That specialist could refer you to different one with a different specialty, who might have another one in mind, and each of them will be booked out for a longer period than the last. Meanwhile, there’s a not insignificant chance that either you or your doctor will give up, accepting that there’s apparently nothing wrong with you, despite your continuing, invisible symptoms.
Assumption 3: A Clear Conclusion
If you wait long enough, you will finally chance upon the right referral and find yourself sitting across from someone who has seen a case like yours before. Recognising your symptoms and accounting for the causes you have eliminated, they will be suspicious enough to gently prod nineteen different points spread throughout your body and joints. When you squirm and scream unnaturally in response to most of these tests, they will finally offer up a word for what you might actually have: fibromyalgia.
The average time it takes before a patient hears that word from a medical professional is five years. Five years of hope, doubt and frustration for a single word. But at least now your list of broken systems and inherent faults includes one item that stems from you.
Your diagnosis will never be fully conclusive. You’ll still need to complete the checklist of other conditions to eliminate, you’ll still need to face doctors who finished medical school before the disease was recognised or defined, and you’ll still need to somehow prove your own unprovable condition every time you seek unrelated medical care, insurance or employment.
And on top of it all, after shattering every assumption that you once held about disease and diagnosis, you’ll level up just in time to confront a whole new set of medical falsehoods – for not every disease can be treated.
Yet you’ll still be one of the lucky ones, because you made it this far. Others may have never noticed their health deteriorating, may have never gone to a doctor, may not have been believed, may not have persevered through all of the tests and referrals. Others may have succumbed to the waiting and the doubts, to a depression attributable not to their disease, but to their inability to define it.
Conservative estimates indicate that approximately 2% of the population has fibromyalgia, one person in every fifty. Extremely conservative estimates indicate that 75% of them do not know it.