Sarah Heney, 60, was diagnosed with Lupus after years of struggling with unexplained health problems – and said she was made to feel like a ‘hypochondriac’ by her GP
A mum who was made to feel like a ‘hypochondriac’ after developing different symptoms has spoken out about her struggles to get diagnosed.
Sarah Heney, 60, from Edinburgh, later found out she had lupus – an ‘invisible condition’ that forced her to retire from her beloved job in her 40s. She is sharing her story to mark World Lupus Day on Friday, May 10. Lupus, a non-curable long-term condition, can cause sufferers to experience joint pain, skin rashes and fatigue. In severe cases, it can lead to life-threatening complications.
She told Edinburgh Live: “I always saw the same GP, and to be honest it was with lots of random and what seemed separate little issues. With the amount I was going to the doctors, I felt like I was a hypochondriac. Then, in 2009 this particular visit I ended up seeing someone different and he suggested all the issues I had going on were due to something systemic. Maybe Rheumatoid Arthritis.”
As she waited three months for her next rheumatology appointment, Sarah ended up doing as much research into the condition as she could, only for her to turn up to this appointment and to be told it wasn’t arthritis or lupus. Medics ran more tests, but at this point her health began to deteriorate quite quickly. Sarah had a family to look after as this went on, including her child, Sam, stepson Kenny, and stepdaughter Katy.
She recalled: My health was progressively getting worse, I thought I had infections due to problems with my lungs and kidneys, extreme joint pain, 50 per cent of my hair had fallen out, severe headaches, hive-type rashes, extreme fatigue, and cognitive dysfunctions . My office was on the eighth floor, I just couldn’t manage it. I could barely get up the stairs or breathe. And my brain just wasn’t working, I would blank out often.”
When Sarah was next seen at rheumatology she was very quickly told she did in fact have lupus. She said: “It was a shock but at the same time, such a relief to know what was going on.” Soon after, she took time off work. Sarah tried to do a phased return to work, but even with special adjustments from The Playhouse, she had to retire at the age of 48.
At one point she had a suspected stroke, and woke up with a severe head pain while unable to move. Her friend called the GP surgery and a doctor came out to visit Sarah immediately. She was then kept in hospital for five days. The doctors said she had a suspected stroke, and said there were multiple white matter areas that look like scars on her brain MRI.
Sarah then suffered a serious optical condition called an optical occlusion, which is akin to a stroke in the eye. This was a result of not being treated for blood clotting disease, in which Sarah could have easily lost her vision. She decided to pay for a private specialist who got her immediately diagnosed her with Antiphospholipid syndrome and got onto anticoagulants.
Within 48 hours, all the neurological symptoms she had endured for years eased. Her husband responded with delight to the sudden change in her condition, and told her: “I have my Sarah back!”
Sarah now says she wishes more people were aware of lupus and lesser-known diseases. While she doesn’t know what triggered the first big flare-up of lupus, she did note that it came at a very stressful time for. Her dad had recently died, and she had also had to put her cat down – a sad moment that came with a cruel and unlikely health impact for her.
As the vet gave her beloved cat the injection, the pet turned and bit Sarah’s hand. She contracted a Bartonella infection from the bite and had to go to St John’s Hospital in Livingston that day to get plastic surgery. Reflecting on all her health struggles, she added: “I am a very positive person, it’s very easy to get depressed when diagnosed with autoimmune diseases. I am very lucky I have a great support network around me”.
