Members Stories

Frances' Story (Aug 11, 2013)

I was diagnosed with Lupus (SLE), Sjogren’s syndrome and Raynaud’s phenomenon in 2003 when I was fifteen years old. However I had been suffering with symptoms of these conditions for several years prior to my diagnosis, which I believe is fairly common amongst sufferers of auto-immune diseases such as lupus.

I remember having really sore knees and joints when I was about nine years old, I could barely walk down the stairs due to the pain and stiffness. At first my mum thought they were growing pains, and the GP eventually suspected juvenile arthritis but nothing appeared to come up in the numerous blood tests and so I was not diagnosed with anything. Looking back, I feel the GP felt I was making everything up for attention as my mum would take me to see him countless times over the years. The first time I became seriously ill with what I suspect with lupus and/or Sjogren’s syndrome was at the end of the summer holidays when I was twelve years old in 2000, I ended up being admitted to hospital for a week. The left side of my face was extremely swollen from below my left eye to the jaw and the side of my neck; I felt that I looked like the elephant man! I remember waking up early that Sunday morning with a very sore and stiff neck, and feeling very ill and tired that I could barely move. My mum says the one thing she remembers the most is my arm being held out awkwardly due to the drip attached to my arm. The issue appeared to be in the parotid gland saliva producing gland) which had become visibly enlarged and infected, and I was asked to frequently suck lemons to produce saliva. Issues with the salivary glands are consistent with Sjogren’s syndrome, however unfortunately this was not diagnosed at the time, and after a week of being on various medication I was discharged with no-one being any the wiser as to what was wrong with me.

For the next couple of years I was admitted to hospital numerous times; my gland particularly those around my neck and jaw were swollen, I had rashes all over my body and terrible pains throughout my body. I also had abnormal lumps in my tongue, and on two occasions these were removed from my tongue yet the results came back inconclusive. What I remember most about being in hospital at this time was being on a drip, I was always severely dehydrated when I was admitted to hospital, and I have since realised that when I feel unwell I am less inclined to drink or eat which makes any other issues worse. I got over my fear of needles on account of all the blood tests, drips, infusions and medications injections I’ve had over the years. I consistently had issues with my hands and circulatory system had to wear gloves all the time even in bed at night to keep my hands warm and stop them going blue and suffering. Whilst I did not know this at the time, I was regularly suffering with Raynaud’s attacks and repeatedly suffered with chilblains and numbness of my hands and feet.

At secondary school I was a good student, getting great marks and working hard. But my attendance was not always so great. So often on a Wednesday, half way through the week I would get so tired. I would be so exhausted that I wouldn’t be able to get out of bed in the morning and would feel so ill. I’ve heard since that people thought I was ‘bunking’ school, deliberately missing days because Wednesday was also PE day. I remember having to go to the school nurse and the sick rooms at school so often to lie down because I would feel so ill during the school day. When I was fifteen I ended up spending 2 - 3 months in hospital. After Easter in 2003, I became so ill my mum took me to the out of hour’s doctor as it was a Bank Holiday weekend. I remember feeling like a rag doll and I could barely move. The doctor rang ahead to A&E at the local hospital and said I had to go straight there. Again there were the familiar symptoms: horrendous pain throughout my body, sore joints, swollen glands, dehydration, rash etc. I was admitted and was under the care of Paediatrics and ENT (Ears, Nose & Throat). After nearly three weeks on the Children’s Ward and numerous rounds of tests I was discharged me on a Saturday morning as the doctors didn’t know what to do with me. They did this when my mum was not in attendance and when I became increasingly ill over the weekend I ended up back in hospital as my mum took my straight to the ENT department rather than A&E and told them they were wrong to discharge me two days previously when I was still ill, and that they had not done their duty of care.

I was admitted to the Children’s Ward once again under the care of Paediatrics and ENT and stayed for another three weeks. Once again, they did not know what was wrong with me; they put me on a drip, various medications and I had blood test after blood test. I remember a nurse took the drip out and encouraged me to drink water but I failed to drink enough, a trait which I now recognise to be a result of being unwell, and as a result I became really ill and couldn’t eat or drink anything. Then my veins collapsed and the nursing staff became concerned as they couldn’t get any fluids into me, I vaguely remember a number of people attempting to get the drip into me that evening with the majority of them failing to do so. I had an operation under general anaesthetic on the side of my neck below my left ear, to remove tissue from the area which was consistently swollen and test for various things including Llymphoma. By this stage I knew all the nurses on the Children’s Ward and they were all very good to me. My determined mum told the doctors treating me that she refused to take me out of hospital until they figured out what was wrong. She took time out of work so she could come and visit me every morning and evening in the hospital, and she made sure she was around when the doctors came on their morning rounds. Eventually they suggested I may have Sjogren’s syndrome, an auto-immune syndrome which is associated with Lupus, and as my aunt has Lupus they tested for that too. The blood test for Lupus takes quite a while to come back so the doctors put me on Corticosteroids, referred me to a Rheumatologist and discharged me.

After a week at home resting I ended up in hospital again, this time going via ambulance as the pain was that severe. My eyes were so sore I couldn’t see, I had all the usual symptoms again and a rash all over my body as well as a horrendous headache. Looking back the funniest thing was, I had sent the nurses on the children’s ward a card when I was discharged the last time a week before thanking them for looking after me; and the Sister had just read it when she saw I was admitted again! Also I remember the latest Harry Potter book had just been realised and my mum got it for me to read. However I couldn’t read for days as my eyes were so sore and reacted really badly to light, this initially made the doctors think I had meningitis as I had a rash also. As I was on Corticosteroids at this stage the nursing staff in the Children’s Ward believed it was better to place me in isolation due to my compromised immune system. Eventually I was discharged after a week and went back to school after being away for almost three months.

Hearing confirmation from the Rheumatologist that I had Lupus and Sjogren’s syndrome was a shock to the system. I felt a part of me had died and that I wouldn’t be the same again. But there was relief too I finally knew what was making me sick, there was something actually wrong and it wasn’t all in my head. For many the journey to diagnosis is a long and arduous one, and whilst diagnosis is not the end of the story at least it makes life easier in some respects as you can tell me what is wrong with you and the doctors have an idea what treatment you should be on. I remember bringing in leaflets to school and making sure all my friends and teachers knew about Lupus and Sjogren’s syndrome and Raynauds Syndrome. The teachers at school were so accommodating, I think some of them were surprised that I did so well in my exams even though I had missed a lot of school. I developed a great doctor – patient relationship with Rheumatologist Consultant who diagnosed me and saw him in the Paediatric Rheumatology Out-Patients Clinic before I was transferred to the Adult Rheumatology Out-Patients Clinic once I turned 18. I think it is very important to have this feeling of trust with your doctors, particularly those who are a big part of your treatment and care, and was left feeling disappointed when I moved away from the area as I could no longer be his patient.  

There has only been one occasions since I was diagnosed that I have been admitted to hospital as an in-patient which was in 2004, just under a year after I was diagnosed. I distinctly remember being asked by the nurse on duty to spell my medication as she had never heard of it before, this has always stuck out in my mind because I was screaming and rolling around in pain and spelling the medication in between deep breaths. It seemed strange to me that some of the nurses on the Children’s Ward had never heard of lupus or Sjogren’s syndrome and I was educating them about these illnesses rather than the other way around. Whilst they were all very supportive and lovely, this illustrates the extent to which there is a lack of knowledge about Lupus and Sjogren’s syndrome in society and even within the health service, and the need to raise awareness and provide support to those suffering.

Living with Lupus and Sjogren’s syndrome can be really difficult at times. It’s difficult to know which illness is causing the problems as both overlap and have similar symptoms. I have taken various medications including Corticosteroids which I was on for a number of years and antimalarials which I still take. Lupus can be a lonely illness because even though people try to understand they don’t know what it feels like to be so exhausted you could sleep anywhere, being unable to walk because your joints are killing you, to be unable to open a jar of jam because your wrists are so weak! When someone asks me how I feel, I usually say I’m grand unless I’m really suffering. I don’t want people to think I’m always complaining but keeping the pain to yourself can be upsetting and so depressing. I have had to cancel plans with some many people often at short notice because I’ve been so tired or felt so ill and sometimes people just don’t understand even if you try and explain to them it’s because I’m sick, technically I’m always sick, it’s not because I want to cancel. When I first went to university I didn’t tell a lot of people apart from my close friends and university staff. I felt that I didn’t want to be defined by having these illnesses but looking back I suppose I didn’t know how people would react. I’ve realised that the only way to deal with having incurable illness like Lupus and Sjogren’s syndrome is to be positive and open. Sometimes all I want to do is stay in bed and sleep for a week, and when I feel like that I have to embrace that. But keeping active both intellectually and physically is the best way for me to keep positive. My philosophy is to live life and keep on laughing!! I have achieved a lot despite having Lupus, Sjogren’s syndrome and Raynauds; I have great friends and go out like any normal twenty-something. There are limitations however, I can only do so much before my body reminds me that I’m not exactly the same as other twenty-something’s, and there are days when I feel like an old lady of eighty. It can be scary reading about some of the complications associated with Lupus and Sjogren’s syndrome but if I live life feeling scared all the time I wouldn’t get anywhere, I will always have Lupus and Sjogren’s so why waste valuable energy on worrying or getting upset about it.

Being involved in Lupus Group Ireland, connecting with other Irish people with Lupus and working towards raising awareness of Lupus in Ireland has encouraged me to be more open about my illnesses which has benefited me and made me happier. I really enjoy my role as Campaign & Communications Officer for the Group as it is great to be involved with promoting awareness of Lupus in Ireland and providing much needed support to other people suffering. Deciding to get involved with Lupus Group Ireland just before it was formally established as a national Irish charity was one of the best decisions I have made. This gave me the opportunity to be part of the decision making process regarding the directions Lupus Group Ireland has taken, and meet a lovely group of people in its members. Talking to other young women with Lupus, I’m actually glad that I was diagnosed when I was a teenager. At the age I am now I feel like a veteran of sorts, I’ve had to live with Lupus and Sjogren’s syndrome so long I don’t remember what life was like before. I was diagnosed before I drank alcohol, left home and learnt to look after myself and therefore my adult life has always taken Lupus and Sjogren’s into account. I think it must be so difficult for those who are diagnosed at a later stage of life when they are accustomed to a particular lifestyle and have to subsequently change their pace of life and the way they live it. Seeing the extreme suffering some people with Lupus, Sjogren’s and Raynauds go through makes me grateful that my condition is considered mild. Of course I do get upset when I sit and think about being ill, but that doesn’t happen often as I don’t like to dwell on what might have been, it’s far better to focus on what I can do, and there’s so much to be done. Whilst I will take these illnesses into account they can’t stop me being who I want to be! My advice to anyone with Lupus, Sjogren’s syndrome or indeed any illness, you do not have to let it define your life. You have to acknowledge it because ignoring it gets you nowhere but remember you are a person with Lupus not a Lupus person.