themighty logo

Just Because I Don't Have a Diagnosis Doesn't Mean My Pain Is Less Valid

My fight isn’t the same as yours. Just like yours isn’t the same as others. Whether you’re fighting fibromyalgia, Crohn’s disease, arthritis, POTS, Lyme disease, lupus…the list is endless. We’re all fighting a different fight. While some of us need to have food through an IV or deposit waste through a stoma bag, some of us take over-the-counter medication as it’s our only choice. I feel people need to be made aware that none of our fights are the same. While they may have similar struggles, all our bodies respond differently.

While I sit and read through people’s struggles with chronic pain and agony, I can’t help but feel different. Excluded. Like I don’t belong to the crowd that call themselves “spoonies” or “chronic warriors.” My fight isn’t something I know, and apparently it’s something no one knows. I’ve had my chronic pain for two and a half years, and I don’t have a diagnosis. My chronic fight is with the unknown. A dark cloud that follows me yet is invisible not only to myself but specialists too.

woman smiling in the hospital

I fell ill in December 2014 when I collapsed at work with terrible right-sided abdominal pain. Of course paramedics thought appendicitis to start with. I was in the hospital for a month getting daily blood tests, CT scans, MRIs and ultrasounds. They couldn’t see any cause for my pain. All my tests were normal. They performed an appendectomy and exploratory surgery on the December 30th. Everything was normal and a day after surgery I was sent home with a bag of medication such as Tramadol, Ondansetron and even morphine. From then till now I’ve been on the roller coaster of different medications, tests and diagnoses. However, about a year ago, the process stopped. Doctors stopped scheduling tests, they stopped asking me how things were, they stopped looking into different medication cocktails that would suit me. I’m stuck in this limbo of unknown pain and confusion. I’m often in the hospital when the pain gets so bad that not even oral morphine can nudge the agony. I feel totally alone.

While I know it’s incredibly common to have chronic pain, I still haven’t seen an article, post or video reaching out to us who are fighting a battle blindfolded against the unknown cloud of pain. I can’t tell people what’s wrong. I can’t tell my benefits handler why exactly my health is declining.

A year ago I also started having seizures of various types. It was scary! My partner was confused as I’d never had a seizure before. I went into the hospital and all my tests were normal. And from that point I struggled fighting seizures as well as my pain, which yet again has no diagnosis as doctors can’t find a cause. Yet another invisible unknown enemy.

Now I’m not necessarily blaming doctors – most have been lovely. However, I do feel left, forgotten, a nuisance, a bit of rubbish under their feet that they want nothing to do with. I see and hear of people with chronic pain getting an abundance of tests despite having no results, but they have that medical support I feel I don’t have. They have an expert looking at their tests trying to figure it out. The only person looking at me is the hospital staff who are baffled as to why I’m even taking up a bed despite being in debilitating pain.

This is a fight I’m losing. Slowly everyone is giving up on me, and all the while my symptoms worsen. I now struggle to breathe on a daily basis, I’m breaking bones and dislocating joints from falls during seizures, I’m vomiting regularly for no reason and feeling unwell all over instead of just my side pain. I feel as if I’m wasting away, fading into the background and no one is noticing.

I don’t want to be a mystery anymore. I’ve pushed and yelled for doctors to do something, to refer me to other departments, to run tests that may not even need to be done because I need an answer. I need to know that this isn’t what the rest of my life is going to be. 

So before you compare all chronic fighters, before you think we all need a picc line or IV fluids at our own home, think again. We are all warriors of our own fight. We are all fighting a pain that plagues our daily lives. Please remember some of us are scared. We’re brave, we’re tough, but we’re scared. Fighting something we can’t see or understand is daunting, and so is dealing with those that simply can’t understand our pain.

woman drinking tea in the hospital
After several hours in hospital the best medicine is a cup of tea.

For now I will continue to fight the unknown, just like many others. My desperation for a diagnosis will push me to bug the doctors to take action and not leave me to fall through the cracks of the NHS yet again. I am just as valid as those with a diagnosis. I am still in pain, even without a diagnosis. I still need help; ignoring this isn’t going to make it go away. For those of us who have been left or forgotten, our fight is still important. We all need to rely on and support each other. One day I will be reassuring someone who hasn’t got a diagnosis. One day I’ll rub someone’s back and tell them to keep on fighting and staying strong. Just as equally I will do the same for someone who does have a diagnosis, I will listen to them and help them as much as possible. We are all valid.

While our conditions are different, we are all struggling. We must support, help and love each other to get us all through this difficult time.

We want to hear your story. Become a Mighty contributor here.