‘You’re faking it for attention.’ THIS is why we’re afraid to ask for help. I put my energy into finding answers. I’m worth fighting for.’: Chronic illness warrior struggles for diagnosis, ‘It won’t stop me from achieving my dreams’

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Trigger Warning: This story contains details of  abuse that may be triggering to some.

“Well, 2020 has certainly been a year to remember, hasn’t it? Ignoring the whole COVID situation for a moment, personally, I have sliced my thumb off, smashed my fingernail off in a separate incident, was involved in a hit and run resulting in my car being written off, was assaulted, spent time in hospital…and that was just in February!

I guess I should start with a little bit about me though. I am Naomi, a 20-year-old musician from London currently in my first year of university hoping to open my own music therapy charity. Oh yeah, and I am dying.

Okay, so maybe ‘dying’ is a tad melodramatic. I certainly feel like I am dying a lot of the time, but my illnesses themselves aren’t likely to cause premature death, complications from them might, but then again I could get hit by a bus tomorrow, so let’s not dwell on that. Wow, I am so cheery, a ball of sunshine.

Courtesy of Naomi Stenning

Anyway, since I was asked to write this article about my health, or lack thereof, I should probably tell you what I have. First up, we have EDS – Ehlers Danlos Syndrome. What’s that you ask? No one really knows or understands it, so that’s fun. I have a neurological condition called FND – Functional Neurological disorder, a form of cardiac dysautonomia called POTS – Postural orthostatic tachycardia syndrome, and Gastroparesis (well, the doctors told me I have it but won’t formally diagnose it because, and I quote, they ‘don’t know how to treat Gastroparesis so let’s just pretend you don’t have it’. Helpful. And apparently referring me to a specialist who can help is far too much effort.  If you don’t know what these medical terms mean, don’t worry. They’re pretty much just fancy words to mean my body is not very good at functioning.

Living with multiple chronic illnesses is difficult. I never thought I would be part of this world where I seem to spend as much time in a hospital bed as I do on my own! What’s even more unexpected though is the medical gaslighting I, and sadly, so many others, have to endure.

Courtesy of Naomi Stenning

Medical gaslighting is ‘when health professionals minimise or disregard disabling or dangerous symptoms. This can be by refusing to perform tests, insisting that symptoms are related to mental health disorders and/or declaring that a patient is faking being unwell.’ It can be anything from ignoring your symptoms to misdiagnosing you. Before I got sick, I thought doctors were amazing. That they were incredible humans who knew everything and tried their best to treat every patient. Gosh, how wrong I was. Don’t get me wrong, I do think doctors are amazing and I am so grateful to the NHS, but I have sadly found for many doctors, if they don’t know what is wrong with you, they will insist nothing is wrong. They conclude we are either faking it or have mental health conditions causing the problems.

Courtesy of Naomi Stenning

I have been subject to such intense medical gaslighting I actually believed the doctors. I thought I was crazy. I knew something was physically wrong with me, but after being told time and time again it was ‘all in my head,’ I started to doubt myself. Some of the conditions I have finally been diagnosed with are genetic, meaning I have had them my whole life. Yet, it took 19 years for a doctor to figure out there is actually something physically wrong. I didn’t understand why I felt nauseous after every bite of food. I didn’t know why I was in constant pain, why I felt dizzy all the time, why I was always dislocating my wrist and knees, why I was always dropping things because I can’t feel the right side of my body, why my heart often palpitated and why I would get ‘brain fog.’

These were some of my mild symptoms I have had all my life and was made to think were ‘normal.’ I was told there was nothing wrong with me, and so I genuinely convinced myself everyone went through all of these things, and I was just being a drama queen. I went through school being told I had an eating disorder, to the extent I was actually referred to eating disorder clinics, when, in fact, all this time, I have had Gastroparesis. It’s not I don’t want to gain weight, it is that I physically cannot.

I have always had lots of these conditions, but in 2016 I contracted glandular fever, which is thought to have ‘set off’ the illnesses, making them much more disabling. I began to realize these things aren’t normal. I have been fighting for answers ever since.

Courtesy of Naomi Stenning

In my journey to find a diagnosis, I can’t begin to tell you how many times I have been mistreated by medical professionals. The list would be far too long, so I will focus on one particular event. It was the 22nd January 2020 and I had an FNAB/ FNAC (fine needle aspiration biopsy/ cytology). This is a minor surgical procedure where a needle is inserted, in my case into a lump in my neck, and a sample drawn out for analysis. I was given a local anesthetic and it should have been pretty simple. Only it is me and my body never does what it should. I have had very bad reactions to anesthesia before (the last time I had a general anesthetic, I wound up in ICU on a ventilator as my body decided to stop breathing), so I was extra vigilant this time around. I started to feel a little odd as soon as the LA was given – I had a headache, was itchy, my body tingling, etc. – but it wasn’t too severe and I didn’t want to cause any problems. I said I was fine and went home.

Courtesy of Naomi Stenning

By the time I got home, I was feeling pretty rough. I had a migraine and couldn’t breathe properly but it wasn’t that bad, so I tried to sleep it off. I woke up several hours later, unable to move, and my breathing was a lot worse. Again, I tried to ignore it and just sleep but I was literally paralyzed. My parents phoned an ambulance. My breathing was stabilized in the ambulance, but I kept passing out and was not doing too well. By the time we got to the hospital, I was given a bed in majors and was ignored for hours. When doctors finally came to see me, they told me there was ‘nothing wrong with me.’ The doctor was extremely rude and, while I was half curled up in agony, half unable to move or breathe properly, they told me to ‘go away and stop wasting their time.’

I had a history of bad anesthetic reactions written in my notes, but the doctor decided I was faking it. I wasn’t even able to talk but he demanded I left. I very slowly and painfully tried to sit up as ordered, but I passed out again, to which the doctor replied, ‘You are talking absolute rubbish. You probably just have a virus or something. You need to get over yourself and drink some orange juice.’ I am not sure why he thought my inability to breathe properly would be fixed by drinking orange juice, especially because I am allergic to orange juice, but that is beside the point…

Courtesy of Naomi Stenning

Suddenly, a nurse (who wasn’t mine) came marching into my room. She turned all the lights on and screamed at me to get up. I screamed in pain because the lights made my migraine so much worse. I tried to say I couldn’t get up and she interrupted, ‘GET UP NOW. IT IS TIME TO GO HOME.’ She ordered me to go, acting as if I was making a scene, and refusing to leave. I still had my cannula in, but she said I was ‘unnecessarily taking up a bed.’ I tried to explain I physically couldn’t sit up, to which she aggressively replied, ‘GET UP NOW, THERE IS NOTHING WRONG WITH YOU.’ I felt horrendous but tried my best to get up. I was still partially paralyzed and the parts of my body I could move were so trembling with weakness.

Suddenly, the nurse grabbed my shoulder and started shaking and hitting me, so much so the bed was moving, and she kept yelling ‘GET UP NOW OR I WILL GET SECURITY.’ I was so confused. Why on earth was this nurse hitting me? What had I done wrong? I must have passed out again and when I came to, I saw several security guards hovering over my bed telling me to ‘get out.’ When I said I couldn’t move, they replied, ‘I don’t care, that’s your problem, not mine.’ He said I had to leave right now, despite being told by the other doctor I needed a discharge letter. My cannula also hadn’t been removed yet.

Courtesy of Naomi Stenning

By this point, the aggressive nurse was in my room along with the security guards. I sobbed, ‘You hit me,’ to which the nurse responded, ‘No, I didn’t. how dare you lie about me.’ Everyone else just stared at me. My dad was with me by this point and found a wheelchair to take me to the car. I found it so difficult to sit in the wheelchair, as I couldn’t hold my head up properly, but I just wanted to get home by this point.

This is the reason we, the chronically ill, are afraid to ask for help, and why we do not speak up when we are mistreated by medical professionals. It is horrifying but so many people are treated like complete rubbish when all we are trying to do is not feel like we are dying all the time. Is that too much to ask?

Courtesy of Naomi Stenning

Sadly, this isn’t even the worst of the stories. I have had doctor after doctor claim I am faking everything for attention. Either that or they try to send me off to a psych unit. In case you are sitting there thinking, ‘Well, maybe the doctors are right? Maybe she is faking it or just can’t handle a little pain.’ Firstly, I don’t mind that you may think that. Honestly, before I got sick, I probably would have had the same thoughts reading this article about someone else. I’d think, ‘I am sure the doctors know what they are doing,’ but I had a rectal prolapse, which is where the last part of my large intestine tried to escape from my body and hang outside my bum. Even my organs don’t want to hang around in my broken body, but SEVERAL doctors told me the prolapse was caused by anxiety. I am sorry but how on earth can a mental health disorder cause my intestines to fall out of my bum? I am not even joking when I tell you they said I just need to try thinking happy thoughts, as if that would miraculously prolapse my intestines.

Courtesy of Naomi Stenning

I have put all my energy into finding answers, and I am so grateful to say I have finally got some. I have been diagnosed and am slowly building a team of doctors who actually care and want to help (shoutout to Dr. S and Dr. G, who I love). I now have a neurologist who specializes in FND and despite only meeting her in December of 2020, she has already done more for me than all the previous doctors combined. I also have an excellent cardiologist who I also just met, but who explained to me so many of his patients are treated awfully too. He specializes in POTS and ‘rare-illnesses’ and explained many doctors less specialized will ignore your problems if they don’t know the cause. It is incredible to finally be listened to. These specialists explained the problems I am having do not show up on traditional tests, but advanced testing is needed to show any kind of abnormality. I have finally had some of these advanced tests and they have shown the abnormalities. I knew something was wrong. It is wonderful being told I am not ‘crazy’ or ‘attention-seeking,’ but there is something physically wrong with me. I still have a long way to go, but I think I am finally getting help and it is incredible.

Courtesy of Naomi Stenning

My message to you is: Don’t give up. If you think something is wrong, keep fighting until you get answers. Do the research and ask for specific tests. If doctors mistreat you, then find a different one. Don’t be afraid to annoy your GP in asking for referrals. It is what they are there for and when you are finally given the correct diagnosis, it is worth all the fighting. My conditions are chronic and there is no cure, but there are ways to treat the symptoms and it is worth fighting for that at least. Please also know you are not alone, and you are not crazy. If you ever need someone to talk to about all of this, DM me on Instagram.

P.S. Being unwell also does not have to stop you from achieving your dreams. It makes things more difficult, yes, but I know you can do it. I am currently in my first year at university studying music. It takes up all my energy and I feel so unwell 24/7, but I refuse to let my illnesses stop me from doing what I want, and you don’t have to either.”

Courtesy of Naomi Stenning

This story was submitted to Love What Matters by Naomi Stenning of London, UK. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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