At 23 Zoe was working an administrative role but experienced ongoing health problems. After two miscarriages Zoe’s health issues worsened, and she was eventually diagnosed with lupus. Zoe’s condition has meant that she is no longer able to work and has been diagnosed since with further conditions including fibromyalgia and recurrent depression. Fortunately for Zoe she was provided with fantastic support from her husband who stopped working in order to become a full time carer.
At 23 Zoe had just met her future husband and was working in administration and purchasing, but seemed to constantly be taking trips to her doctor with problems such as IBS, anaemia, and severe mouth ulcers. The following year Zoe moved in with her partner and the next they tried for a baby, but unfortunately Zoe miscarried at six weeks.
At 26 Zoe was pregnant again, but ended up in hospital suffering with hypersmesis. The scan at 21 weeks revealed that Zoe’s child had a form of spina bifida called anencephalic. “We decided to terminate as there was nothing that could be done to save her, we named her Lucy and she had a proper burial. We were heartbroken, but we supported each other and got through things together. We are never going to get over losing her but we learnt how to go on living.”
Zoe was still getting ill a lot, and after being disciplined at work for poor attendance decided that she needed answers, even if it was being diagnosed as a hypochondriac. After highlighting the problem she was experiencing with her hands whilst using computers her doctor suspected that Zoe might have had repetitive strain injury or carpel tunnel syndrome. A specialist diagnosed carpel tunnel syndrome in Zoe’s left hand, but suspected that she may also have arthritis, so referred her for tests. On Christmas Eve in 2007 Zoe was diagnosed with lupus shown by a positive ANA test.
“I remember feeling relieved that I wasn’t a hypochondriac but scared what this meant. Stupidly I researched the condition on the internet rather than ask as many questions as possible at the appointment. According to the internet I could be dead within five years! So after Christmas I booked in with my GP who explained things to me. I now knew what was going on and what was wrong and knowing that this condition couldn’t be cured suddenly hit me. I was very depressed for a while and ended up on anti-depressants. I was constantly focusing on all the bad stuff and waiting for what’s next.
“I did cognitive behavioural therapy to try and help but failed to keep it up so instead went with a theory that I would keep busy helping family and friends as often as possible keeping very busy pretending I was fine. Also I came off plaquinil for a while as all I wanted to do was get pregnant. All these decisions come back to bite me. My condition flared more and I wasn’t getting pregnant so in the end after another depression I started taking the meds and focusing on trying to get better.”
After marrying in 2009 Zoe’s partner gave up his job in 2012 to care for her full time, and Zoe has found strength in the face of such adverse conditions thanks to him. After a particularly severe flare in 2012 Zoe was diagnosed with another rheumatic condition, fibromyalgia, as well as chronic fatigue syndrome, generalised anxiety disorder, and recurrent depression.
Living with a rheumatic disease
Zoe initially struggled with her diagnosis and was in denial. “I tried to go about doing everything as I did before. This of course caused me and physical and mental difficulties. My flares were severe, and the time it took to get over one flare another would come along. It was an endless cycle. As time went on and more and more appointments, tests and medications, I started to see that I needed to listen to my body but it wasn’t easy to do.”
Zoe has now learned that she needs to listen to her body, and with the support of her husband is able to get out and about as well as undertake tasks so that she feels she is still useful. A severe flare last year meant that Zoe was on crutches for four months, and whilst experiencing a flare needs care in all aspects of life. “I cannot wash, dress or tend to my toilet needs when I am at my worst, which as I am sure you can imagine is depressing and degrading. I am lucky to have a husband who supports and cares for me fully. I feel for people who don’t have that support.”
Zoe still struggles with flares, and feels that she will not be able to get used to the conditions. “Living with any rheumatic condition never is easy. It’s losing the ability to control what your body does. Knowing that no matter how much you try you will only get better when the conditions settle. Nothing you do is going to change the outcome; all you can do is ease the pain with pain medication and rest plenty so that the conditions have more of a chance of settling.”
On top of managing with her conditions Zoe also has to fight for her benefits, the stress caused by which has caused her to have a flare in the past.
Zoe’s window of opportunity
Whilst Zoe initially struggled with her condition she is now in a position where she has learnt the importance of putting her own needs first, particularly the need for rest. Despite the severe impact caused by lupus, Zoe has found the level and quality of care that she has received has been invaluable. Zoe has also found that she is able to draw strength from her husband who has provided strength and support to her through the course of her condition.
Zoe is sharing her story to help raise awareness of rheumatic conditions because lupus and fibromyalgia are very misunderstood conditions. “They are also very lonely conditions and I would like to give people some comfort in knowing they are not alone. It’s scary, and I feel my diagnosis would have been a lot easier to deal with if I had someone to talk to or read about who has experienced what I am going through, and knowing from them what works and what things make flares worse.”
The window of opportunity is key in finding the right treatment for millions of people with rheumatic conditions.
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