When stuck in undiagnosed purgatory

The time between the first symptoms of an illness, and the day you receive a diagnosis are strange. A lot of worries, appointments, trials and errors. People often tell their “diagnosis story”, I wrote about mine, but I feel like the little details and the emotions you go through when you are searching for a diagnosis are not always discussed. Your emotions from the diagnosis, sure, but I’ve never really come across much open talk about living in uncertainty before a doctor finally tells you what the hell is wrong with you.

Over the summer, when I was back in my home city, I caught up with a high school friend, who safe to say is going through hell. I won’t write about her story, but in a nutshell she has been fighting for a diagnosis for the past 4 years, and is facing a constant battle to be seen by the right department, and to just be listened to. In the meantime, her life is put on hold as each day all she can do is survive.

I am glad I could be there as a supportive “consultant”, because at the end of the day it is only others with chronic illness who can really understand what it is you go through on a daily basis. Someone she could ask questions, and to reassure her that she will get a diagnosis one day, and when she does things will change for the better.

Because the insane thing is, once you are diagnosed you are taken a lot more seriously than before. Despite receiving the right treatment, so your health is actually better than before you were diagnosed, medical staff are a hell of a lot more attentive and cautious when it comes to “dealing” with you.

But before your diagnosis? Unless you have a diagnosed medical condition for them to put you into a box and understand, it is too easy to be dismissed.

A year before I was diagnosed, I had already received a bunch of tests for lupus. The result was inconclusive, but the rheumatologist I had seen suggested “maybe your body is a bit weird”. Excellent.

Nowadays, if I feel a little unwell my doctors are prescribing medication, getting tests done, and generally doing a pretty damn good job of making sure I am receiving the care I need to live and enjoy my life, and stay alive.

A common criticism is that often there is sexism in medical care, especially when seeking a diagnosis. Illnesses typically experienced by women can lack visible symptoms, and often a woman going to the doctor complaining of pain can be written off as “overreacting”. When in the old days often “hysteria” was attributed to women, well, its legacy lives on. Which is pretty insane, when you think about what women go through and put up with: periods, endometriosis, PCOS etc. Often women are not diagnosed of issues relating to their baby making equipment because we are expected to put up with pain. And not to stereotype, but the man flu is really a thing, as I have witnessed men I know go to A&E for a cold or similar. An ex caught an illness travelling and though he had contracted Ebola. Seriously. So in theory, when a woman complains to a doctor of pain – they should be paid attention to.

Another thing which can be linked to sexism is that it is often assumed an illness is linked to a poor diet, possible even an eating disorder. My friend has had serious delays in seeing the doctors she needs to see because it was assumed her problems were caused by an eating disorder. Why? Most likely because she’s a young woman. Before I was diagnosed, so many people thought I wasn’t eating enough, or that I wasn’t eating the right kinds of food. The symptoms didn’t match up, but it didn’t matter.

I’ve read a lot of diagnosis stories. All different, all similar. But few talk in depth about the emotions and experience of being in the strange pre-diagnosis purgatory. Sometimes I think back to the time period I was aware something was not at all right with my body, and the day I was called into the doctor’s office to be dealt the life sentence. And really it’s amazing people manage to get through, carrying out life as normal, whilst carrying the weight of the knowledge that you’re sick, perhaps even dying, but waiting for the answer to one day finally come.

I remember finishing my undergraduate degree, whilst going to my GP and specialist doctors, spending a whole day in A&E, hospital tests including being injected with a radioactive tracer for a bone scan, and an MRI scan. Sitting in waiting rooms with patients who exhibited very clear signs of being seriously ill, wondering if I’d be the same in a few months. That was still a year before I was diagnosed.

And then not being so ill I couldn’t function (hey, I moved abroad and worked as a teacher), but still struggling on a daily basis to be functional. And sometimes trying to pretend to be fine, other times trying to explain to people “there’s something wrong with me, I just don’t know what”. Like with doctors, it’s easier for peers to understand when there’s a name to your illness. It’s easier for them (and yourself) to google. It’s proof that you were never being melodramatic, or making things up. You were actually sick as a dog all this time.

People always take the time to ask me “how are you doing”, which is always deeply appreciated. But this is rarely asked to people who are waiting for a diagnosis. Partly because they probably don’t tell many people, instead they bottle up the pain and fear and uncertainty, because when you don’t have the information it’s harder to confide in people.

If someone is in undiagnosed purgatory, it must be acknowledged that they are facing fear and uncertainty, going (often alone) to hospital tests and appointments in between keeping up appearances. Maybe relying on painkillers to make it through the day, experimenting with different exercises and diets in the hope it will do something to help. Basically living the life of a chronic illness warrior, but without the badge of diagnosis to prove that they’re not making it up, instead being faced with doubt by even those they’re closest to. My friend has lost friends because they grew tired of her not being able to “be normal”. Others struggle to understand the isolation that comes with being lost in undiagnosed purgatory, and don’t realise their careless neglect can be hurtful. So if you ever know someone waiting on a diagnosis, pay them a visit or give a phonecall. The smallest action means way more than you can possibly imagine.

Doctors should keep in mind the person sat across them is often not an attention or painkiller seeker, instead just a vulnerable person looking for answers in the hope things are going to be alright. And that “maybe your body is weird” is not an answer.

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