Living with an Undiagnosed Illness

Most of us believe that if we get sick, we can see a doctor, and they will find out what is wrong and start us on our path towards recovery.

But what if your doctor doesn’t know what is wrong or how to treat it? This is the story of many people worldwide, and yet it is rarely talked about.

The medical community undoubtedly wants to keep these stories out of the limelight, for risk of losing the public’s trust. But the truth is that there are several reasons why a person may miss out on a diagnosis, and it is rarely the fault of the doctor; however, there may be times when doctors can improve their approach. 

Here are a few scenarios:

The Invisible Illness
The patient’s symptoms are vague and self-reported. The GP either assumes a common illness fitting those symptoms, or the basic tests they perform all come back normal, and the doctor suggests the patient comes back if they get worse or the symptoms don’t clear up.

Persistent patients, or those whose symptoms are debilitating, will likely persevere with their doctor and push for further testing and to see specialists. This may eventually lead to a diagnosis, but even then, it may take months or years if symptoms are not backed up by abnormal test results. Others with milder symptoms may just learn to live with them.

Doctors may become suspicious of hypochondria, and suggest that the patient also takes steps to help them deal with the symptoms psychologically. This is not necessarily a bad thing if it helps the patient accept the situation, as long as it is not assumed that it is solely a psychological issue.

The Oddity
This patient presents with a variety of symptoms. One of them is apparent to doctors (either directly visible or easily determined), but further testing doesn’t explain why it is there.

Doctors may initially appear very interested in these cases and want to find the cause. But they may quickly lose interest/concern when results come back normal and, unless the illness becomes life-threatening or increases in severity, the patient may eventually be discharged from care without a diagnosis.

Symptoms may be treated directly, but doctors may (understandably) be reluctant to treat an unknown disease, in case more harm is done than good.

The Overly-Trusting
We should all have faith that our doctors are trying to help us the best they can. But, they are only human.

If your symptom description leaves something to be desired, or you feel the doctor has missed something, it is your responsibility to speak up or seek a second opinion. Doctors can only work with the information they are given, and what seems irrelevant to you, may be the final piece of the jigsaw to your doctor.

This type of patient describes their symptoms to the doctor, and the doctor assumes a minor or common illness, telling the patient the symptoms will likely resolve on their own, but advising him/her to return if they do not.

This overly-trusting patient will accept the doctor’s diagnosis, and will feel too silly to return if the symptoms don’t resolve. It is a minor ailment, after all.
DON’T DO THIS. DOCTORS ASSUME YOU’RE BETTER IF YOU DON’T RETURN. THEY WANT TO HELP YOU. GO BACK TO THEM.

My Story
I had experienced a variety of strange symptoms, some of which I had seen a doctor about, and some which I hadn’t. I had been given a couple of possible diagnoses (asthma, migraine, viral ear infection…) over the years, but didn’t feel that any of them were correct. Each symptom either resolved on its own, or didn’t increase in severity, up to that point. Other than the ‘asthma’ attack (which didn’t involve any wheezing or coughing and felt more like my diaphragm was temporarily paralysed), none had been life-threatening or particularly serious.

Then, things came to a sudden head four years ago when I was twenty-four. My left little finger became numb, and over a couple of weeks, the numbness travelled up my arm, and eventually spread to the other arm, my left leg, my back, and my face. During this time my scariest and permanent symptom also arrived: Paracentral blind patches in both eyes.

I had seen my GP when the numbness was restricted to my left arm, and told it was likely caused by a trapped nerve. But it takes a while to get an appointment, and so I wasn’t able to see anyone as it continued to spread.

The arrival of the blind spots was possibly the scariest day of my life, eased only by the delusion that they would probably be temporary. At the same time, they were a symptom that would be ‘visible’ to doctors on a visual field test, so I felt reassured that it wouldn’t be long before I would get a diagnosis and begin an appropriate treatment.

The opthalmologist carefully examined my eyes, but didn’t offer an explanation.
“Your eyes look fine,” he stated, which eased his concerns of a detached retina, but didn’t do much to help me.

Over the next few months, I had a variety of tests, including blood tests, MRI/MRV (without contrast), Fluorescein Angiography, Visual Evoked Potential, EKG, and several visual field tests and eye exams. Needless to say the results were all normal. A slight abnormality was picked up on the EKG, but it didn’t appear to worry anyone, despite episodes of tachycardia in the past.

Overall I was very impressed by the examinations that the NHS offered me, and my only dissatisfaction involved human error (including my own lack of persistence – worry is exhausting), and ‘The System’. Inevitably there was a waiting list that meant procedures were performed when my mystery illness was no longer in its acute stage, i.e. the numbness had subsided, and the eye symptoms had presumably become residual damage rather than the inflammation or trauma they had started out as.

Eventually my investigations turned into periodic monitoring, and ultimately to discharge from care. It had been a trying year, and whilst I failed to mention to doctors that the reason they had thought that my vision had improved somewhat during this time was because during the ‘monitoring’ stage I had received broad-range field tests rather than the central one that had led to the discovery of my blind spots (I’m not perfect and it’s hard to remain persistent, which involves arguing with doctors), I had only one recurrence of numbness, which was restricted to one thigh, and resolved much faster than the previous episode. I hoped this was over, but still worried about my missing vision and desperately hoped it would one day return, or at least remain stable.

What we can Learn
As humans, we need to be aware that some struggles are invisible to others, and to remain compassionate and accepting towards one another, and accept what they tell you without judgement.

As employers, you need to be understanding of the need for medical appointments, and know that a healthy and cared-for employee is a more productive and loyal one. We also need to remember that people with disabilities are not redundant, and may prove to be your best employees if accommodations can be made.

As doctors, you need to listen to what patients are saying. They know their own bodies better than what a test result can tell you, and there is still much that is unknown in the medical world. As one doctor once told me, “Medicine doesn’t have all the answers”. Don’t dismiss a patient as ‘depressed’ when they appear upset; listen to why they are upset. Could you live with all of the symptoms they are describing? Sometimes it is better to admit that you don’t have the answer, rather than condemn a person to a psychological diagnosis. Perhaps their anxiety is situational, rather than chronic.

As patients, we must listen to our instincts, and learn to take responsibility for our own healthcare. Doctors make mistakes; this does not mean they are negligent or incompetent, but they are only human. If you’re not satisfied, seek a second opinion, or persist with your current doctor. Write down your symptoms on a timeline so that you don’t forget anything, and can tell your story coherently and peristently. You will probably be anxious on the day.

Ultimately, put your health first. Always. You never know when it may be taken from you, and you need to be prepared to fight your case.

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Annoying the Doctors

If you’re in a position similar to me, where your symptoms are so obscure and test results so inconclusive that you’re stuck in a frustrating limbo, you can begin to think that you might be an annoyance to the doctors that you visit. 

They know that they do not currently have the answer and have run out of tests which may be useful in narrowing down the possibilities. They begin to suggest things like “seeing your GP for psychological help to deal with the uncertainty”, which angers you because you would rather deal with the root cause.

They appear optimistic without reason, suggesting that one day you may wake up with your vision restored and all of your symptoms will miraculously disappear; you know this is very unlikely. 

They suggest that you “try not to think about it”; you know this is impossible when it impairs your every day life and parts of your visual field is obstructed by shimmery blind spots 24/7. (Imagine having a piece of dirt or a fly stuck to your glasses and not being able to wipe it off.)

They ask what you think the problem is. This angers you because you know from past experience that they tend to shoot down any ideas you suggest, saying it is very unlikely. But in fact, it is likely that whatever you have is very unlikely! 

New doctors that you see don’t read your notes properly and say all of the problems are caused by anxiety or depression. Clearly not. 

I have nothing against doctors at all. I have very rarely encountered a doctor that didn’t want to listen. It is just difficult seeing doctor after doctor when they don’t really understand how you feel and cannot to anything to help. Also, having to hold back the frustration so that they don’t mind seeing you again. 

More specifically for young people, it affects all aspects of your thoughts about the future. You want to imagine being old and retired, playing with your grandchildren, gardening… (and I don’t even flipping like gardening!) but in reality you don’t know if all these things are possible because even right now these things would often be difficult, in your mid-twenties, with the symptoms you’re having and you don’t know what is causing it. 

You worry about finding a partner who won’t be put off by your medical problems and, although it is easy to sit at your laptop and chat with people on dating sites at times when you’re feeling tired or unwell, it is less easy to get out there and meet people. 

After writing all of these thoughts down, I can see why a doctor may suggest psychological help! But in fact, it is not depression preventing me live a normal life, but physical symptoms. Inside my mind I want to run about and keep busy like I used to, but I know if I do this then it will ruin the rest of the day so it is often best to save energy. So instead I sit here and write this… 

Symptom Checker

I thought I would list all of my symptoms during an episode (in no particular order as this would over-complicate things) so that anyone experiencing similar issues, whether diagnosed or not, can compare to their own symptoms. I am interested to hear from anyone with similar symptoms! My first episode occurred towards the end of 2010 and lasted a few weeks and the second lasted several months (neither were treated). Some recent dizziness and numbness suggests a third episode may now be occurring. 

– Headaches, often triggered by sitting in certain positions such as slouching

– Dizziness

– Some sensation loss in the skin on certain parts of the body, never complete numbness

– Slight weakness and loss of coordination

– Loss of visual field in both eyes (this symptom did not resolve after each episode, unlike other symptoms)

– Feeling of pain or pressure behind the eyes, sometimes a sharp stabbing pain in the eye