My Diagnosis

1080946_24278190My diagnosis followed a four and a half year battle with my GPs, arguing about the state of my own sanity. I’ve been prescribed anti anxiety medication, been strongly advised to see a psychologist, whilst also having my partner reassured that he needs to accept my imbalance of  my own sanity.

But exactly how do you prove your not insane your refusing to take prescribed prescription drugs and you’re attending over 80 GP appointments within the space of one year? Exactly, good question.

I started noticing my health decline shortly after major surgery on my spine due to disc herniation and sciatica, about four and a half years ago. At first I put all my symptoms down to the stress of spinal surgery, the fatigue, joint pain and muscle aches, but as time went on I began noticing a rash over the bridge of my nose and my checks would flush as if I’d just been caught raiding the fridge on weigh day! I’d go to my GP with a list of presenting symptoms and a selection of not so flattering selfies, but they would just shake their heads and laugh and tell me I was just being overly anxious. When I demanded an explanation for the rash on my face they told me I was simply ‘hot’ at the time of the photo, I felt I was being undermined and I was made to feel like I was a hypochondriac.

In 2016 things got a lot worse. I started becoming black and blue with bruises, clumps of my hair would fall out in the shower, I could barely open my eyes due to sharp stabbing pains and it felt as if I had an elephant standing on my chest permanently. I just couldn’t breathe. Ambulances were called on numerous occasions because I experienced heart pain so bad that I thought I was having a heart attack. I just remember thinking, this is it, I’m going to die.

I started visiting the GPs more frequently after that, explaining that my rash had now spread to my whole body and I was having irregular heart beats and pains. Frustratingly my chest pains were just put down to ‘panic attacks’ from suffering with my so called ‘anxiety!’ They raised their voices at me and told me the sooner I accepted I had anxiety the better. I feel like I was fighting a losing battle!

I managed to drop 3 stone in weight in the space of 6 months, which I  raised concerns about due to my lack of crash dieting, but they just congratulated me and told me it was great before my upcoming wedding, they said I should be pleased!

Shortly after I ended up being admitted to A&E 3 times for a suspected blood clot, but I was  later discharged with no explanation and advised to go home and rest. That’s when I took to the internet against my friends and families advice and began googling my symptoms. Of course after doing a general search I had concluded that I was dying and pleaded with my fiancé to donate all my savings to animal rescue centers when I’d passed on… and then I slept on it and realised I was being a bit irrational.

After more specific search’s on the internet I stumbled a crossed the word Lupus, I demanded blood tests to be carried out which resulted in 3 POSITIVE ANA blood tests for Lupus, but STILL my GPs told me these were all false positives, despite displaying all the clinical symptoms.

Enough was enough. We decided to go private and visited the London Lupus Clinic to see a specialist Lupus Consultant. Within half an hour he diagnosed me of severe Lupus and prescribed me with a strong course of steroids and anti-malarial drugs. My consultant said he would discuss the possibility of starting me on chemotherapy drugs on my next visit.

I had been suffering for about four and a half years with life changing symptoms that significantly impacted on my ability to live a normal life and a Private Consultant had just diagnosed me within 30 minutes of seeing me. I was angry and disappointed in my GPs lack of patient care and inability to recognize when at least to refer!

I’d like to say my diagnosis has come as a shock but it hasn’t. My diagnosis sadly means that I will have to make significant changes to the way I live my life and there will be certain things that I will have to sacrifice. Unfortunately Lupus has no cure, but I won’t give up the fight.

What I’ve learnt from my Lupus diagnosis, is that you should ALWAYS ALWAYS trust your gut instinct and never let anyone tell you they know your body better than you do!

Where I found my diagnosis

6 thoughts on “My Diagnosis

  1. This is awesome!! I read your cosmo interview and will share this particular blog post with everyone I can too!! I don’t have lupus – so I could never know what you are going through – but I have chronic mental health issues so this was incredibly inspiring!! Keep up the good work 🙂

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  2. Hello, I also have Lupus and sadly have had a similar experience to you. It’s taken me almost 10 years to get proper diagnosis and treatment. I’ve lost count of how many times I was told it was anxiety!! At one point I was admitted to A&E with vasculitis which my GP put to a reaction to stress! The worst part for me is that I started to doubt myself and convinced myself I was just not good at coping. It took a serious flare up that took almost a year to get under control where I lost loads of my hair and loads of weight for Doctors to finally take notice.
    I’ve just started blogging about my experiences which has helped organise my thoughts.
    Well done for speaking out.
    Wishing you all the very best, keep up the positivity x

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    1. Hello, thank you for your message! I’m so sorry you’ve had a similar experience. Completely understand what you mean about doubting yourself! You really do when everyone is repeatedly telling you it’s in your head. Really glad you finally have some answers although it’s taking basically a decade! Ah that’s brilliant, I’ll have to check your blog out! Thank you that’s really kind 😁 Good luck with everything xx

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  3. My experience has been similar to yours with the exception that I actually had the diagnosis at the age of 14. As my symptoms were very mild initially and health insurance/financial considerations were an issue, I remained out of treatment until after I married and became pregnant. At that point my symptoms returned viciously, but no doctor would take me seriously. I got the same “oh, it’s just anxiety” and eventually, “oh, it’s just post-partum depression” or any of the other dozens of mental illnesses I’ve been diagnosed with over the last 22 years. I have such a phobic fear of doctors and lack of respect for the field of medicine at this point that I can’t even make myself go in for a physical nowadays. Best of luck to you in your treatment and hold onto that positive attitude!

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    1. Hello! Sorry for my late reply, it’s not been a good couple of weeks (thanks Lupus!!). I was so sad to read about your experience but I know exactly what you mean. I feel like I have no faith in them anymore and I hate going to the doctors. I really hope you start to get treated better soon and you start to get taken more seriously. It’s not fair what you have had to go through! If you require treatment and need to see a doctor/specialist then I would say research them if you can so you know their experience in Lupus. Thank you for your feedback:) Good luck with everything! Nadia xx

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