What to do when the doctor doesn't know what's wrong with you
A recent experience of not getting answers at the doctor prompted me to reflect on this experience, which I've had several times, and how I have navigated it.
In modern, Western societies like Australia, we’re taught that if you are feeling unwell or you are injured, you go to the doctor. There, they will ask you some questions, perhaps do some tests and diagnose what’s wrong. Then, they will prescribe a treatment or treatments and, once the treatment is completed, you will feel better. Simple, effective modern medicine.
We’re so lucky to have such an advanced medical system that understands so much about how our bodies and minds work. Many diseases that once killed people in their thousands are now entirely preventable. Others occur but can be readily treated and cured. I am a big fan of modern medicine.
But there is still so much we don’t know. And I daresay everyone with a disability/chronic illness, as well as many others, will be painfully aware of this fact. What unites us is the experience of going to the doctor, explaining a suite of symptoms and not getting any answers. Our scans are normal, our bloods in the ‘acceptable range’, there’s nothing obviously wrong with us.
For those of us with disabilities/chronic illnesses, this experience is often a feature of the journey to diagnosis and can be an ongoing challenge as we and our disabilities/illnesses evolve. We get novel symptoms with a far from novel lack of answers.
Unfortunately, when faced with a problem they can’t diagnose or solve, some doctors will behave incredibly poorly towards us as patients. Maybe our symptoms are just because we’re fat/stressed/depressed/anxious/weak/insert another insulting and wrong assumption here. Maybe we just need to exercise more/eat better/relax/get used to it/insert another insulting and wrong suggestion here.
Better doctors will at least have the courage to admit when they don’t know. But even these interactions are fraught. When all our tests come back clear, the doctor will deliver this as good news which we’re expected to be relieved and grateful about. And we are relieved and grateful we don’t have cancer or MS or whatever it is we’ve been tested for, don’t get me wrong, but the news doesn’t change the fact that we still feel like shit. We still feel like shit and we are no closer to knowing what’s going on and getting relief from the symptoms we’re experiencing.
They may also try to reassure us by telling us that we are ‘doing great’. This can hit differently depending exactly how it’s delivered. It can, in some instances, feel like a welcome recognition of our efforts to keep on keeping on. In other instances, it can feel quite dismissive, as if the doctor doesn’t see that we’re struggling and feeling very far from the life we want to live.
In addition to the fraught interactions we have with our doctors, there’s a massive personal fallout for us as patients when the doctor doesn’t know what’s wrong with us.
First, we start to doubt ourselves. Even if the doctor believes our symptoms be real, the fact that the tests aren’t showing anything wrong with us gets into our minds and starts to make us question our experience. Are the doctor and their tests missing something or are we maybe making it all up or exaggerating it? Basically, we gaslight ourselves. Are we the problem?
Second, we have to keep on living with the symptoms. With no medical answers, we are left trying to manage whatever symptoms we’re experiencing and keep on with our lives. We are faced with an uncertain future. It’s difficult to plan anything when you have no idea how long your symptoms will last, whether they will get better or worse etc.
So, what do we do, where do we go, when the doctor doesn’t know what’s wrong with us?
Here’s my list of tips gleaned from my own experiences with doctors who don’t know what’s wrong with me:
If you’re not satisfied with the lack of answers and you have a gut feeling that something’s not right, get a another opinion from a well-regarded doctor. Doctors are humans, with their own strengths and weaknesses, biases and blind spots, so another opinion can be helpful.
Tempting as it is, try not to seek answers on Doctor Google/ChatGPT. My experience is that trying to self-diagnose simply causes confusion, anxiety and stress. It rarely, if ever, yields the answers I’m seeking.
If a doctor has been condescending and tried to tell you that your symptoms are just because you are fat/stressed/depressed/anxious/weak/insert another insulting and wrong assumption here, surround yourself with people who believe and love you to counteract this terrible messaging.
Seek out people who’ve had or are going through similar experiences. It’s incredibly nourishing to have tangible proof that you are not alone, that people have gone through this before, that it can be navigated. My friends with disabilities/chronic illnesses are great allies in times of uncertainty and frustration.
Don’t change your behaviour just because a doctor who exuded authority but had no evidence to back up their suggestion told you to exercise more/eat better/relax/get used to it/insert another insulting and wrong suggestion here. Change your behaviour if you want to or there is evidence that it may help.
Acknowledge and allow the conflicting emotions. There is relief and gratitude when tests come back clear, but there is also a very real sense of frustration because we are no closer to knowing what’s going on and getting relief from the symptoms we’re experiencing. A cocktail of conflicting emotions, while confusing, is also entirely normal.
Try not to doubt and gaslight yourself. You are the expert in your experience. You know that the idea you’d make this up or that it’s the product of some character flaw is preposterous.
Acknowledge and give yourself compassion for how hard it is to live with the symptoms. You’re probably having a really rough time. Don’t minimise it.
Draw on available supports to help you manage your current circumstances. See your psychologist, spend time with friends, take time off work… You don’t have to get through things alone or without support - make use of what’s available to you.
Focus on simple self-care actions. I find it helpful to hone in a few key self-care actions which I know have helped me through difficult periods before: hiking, yoga, writing, reading and time with friends would be my key actions. Focussing on just a few simplifies things, which is important when life feels overwhelming and chaotic.
Inject joy into your life wherever you can. Life can feel a bit dismal when you’re grappling with symptoms for which you’ve got no diagnosis, so doing as much as you can of things that bring you joy is important: spend time with a pet, go for a swim at the beach, put on some music and have a bop…
Know that your circumstances will not remain fixed as they are currently. The only constant in life is change. Symptoms will morph and change, patterns may become clearer, new tests may be done… It won’t always feel like you’ve hit the wall and have nowhere to go. There is hope. I know this because I’ve been there before and come out the other side.
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Thanks for being here!
Let’s make the best of it,
Emma