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Nicola's Story

I woke up one July morning in 2004 with what seemed like a migraine that resulted in me taking a day off work. The following morning I woke with what seemed like flu like symptoms. Leading up to this I begun to feel very tired, I had noticed weight loss and that my eyes were very sensitive to the sun. Subsequently, I went to my GP as I had noticed a large gland in my groin, pains in my legs right down to me feet and toes, high temperature and night fever; I was having difficulty in walking very far and was extremely fatigued, my stomach area was tender to touch.



I was referred to a Consultant at my local hospital where all base line investigations were performed. The Consultant said it was probably no-more than a 'virus of unknown origin'. Eight weeks later I was feeling no better so more investigations were performed. At one point the Consultant tried to say I might have had Cat-Scratch Flu, which was hilarious, as I hated cats and was never in company with them; I would have known if one had scratched me!

Still feeing unwell I decided to return to work although occupational health advised me to do so on a phase return. I was still suffering with chronic fatigue and was feeling angry, frustrated and depressed as to why I was feeling like this. On speaking with my GP I remember getting upset and being asked why was I getting so upset as I was just getting over a virus, nothing serious.

Sadly, I did not have a sympathetic line manager who began to tell my work colleagues that there was nothing wrong with me and that I couldn’t be bothered to return to work full time. This is when the harassment and bullying kicked in. This was the lowest time in my working career. Not only was I struggling to deal with feeling ill, I was now being bullied at a time when I needed support from my place of work. Things become so bad that occupational health recommended that I be removed from my office and relocated. I now worked on my own and with the helping hand of my line manager I was ostracised from my work colleagues. (It was later found that my line manager had breeched confidentiality and was tracked looking into my electronic health records).

After collapsing at home I was seen in A & E and referred to another Physician. I saw a young Registrar who said I probably had an acute virus and I was just taking a long time to get over it. He performed several investigations and arranged for me to return to see him. At my follow up visit he said all was as he expected although one of the results was positive for Anti-Ro Antibodies, which he said was a ‘red herring’ and subsequently discharged me from the clinic back into the care of my GP. Luckily, my GP referred me straight to the Louise Coote Lupus Unit at St. Thomas' Hospital.

Six weeks later a got a call from the same Registrar, that had discharged me from his clinic, who said he had discussed my results with a colleague and wanted me to come into hospital for more tests as the positive result was probably what was making me feel unwell. Rubbish I thought!! And had great pleasure in telling him I had been referred to St Thomas’ Hospital.

I was seen by one of the Consultants in the Lupus Unit who performed more tests and confirmed that I was positive with the Anti-RO antibodies. At last I was relieved when I was told this as I was slowing thinking I was losing my marbles and that this was all in my head. I was started on anti-malarial tablets which helped improve my fatigue. I am still prone to picking up most common illness that takes me quite sometime to get over.

I find it hard that people are still ignorant when it comes to lupus and have no idea what the illness is all about and still flippant about it even in the medical world. If you have a broken limb or a physical injury then people are sympathetic. I’m sick of the same old same old “you look well” but on the inside I’m not well!

For those people who are managers and maybe reading this please note my working life was made hell on earth by one person. I chose to come back to work albeit on a phase return. I didn’t want to be treated differently, I just needed a little understanding, sadly I had to prove that I was actually ill.

There are days when all I want to do is lie on the settee and sleep for England and days when I feel extremely depressed and don’t know why. I have to be careful in the sun now and suffer with skin problems, recurring respiratory infections and joint pains. I was relieved when diagnosed and take each day as it comes. That’s my story!