Lupus crept into our family so slowly that at first, it was hard to notice as small changes trickled into my daughters’ life. At first the odd, strange pain in Sophie’s shoulder, knee or back was put down to her being tired, overdoing it, or even that she had somehow strained something. Within a couple of weeks, Sophie’s symptoms had gotten worse and so we went to the GP hoping for a bit of reassurance. At this time as a mum, I was concerned, but not worrying unduly as all her symptoms could be put down to something that I believed could be explained. Ironically, after seeing the GP, I was actually more worried as he tried to put breathing problems and all the other things that were starting to affect Sophie’s everyday life down to a phase, her age and even suggested she would grow out of them. As a mum, you know when something is wrong and as Sophie had never had any major health concerns apart from the usual childhood illnesses, I began to worry that he was totally getting it wrong.
In just a couple more weeks, the symptoms had grown dramatically including hair and weight loss, severe pain in her joints and chest with incredible exhaustion all the time. We were quickly back to the Doctor and this time saw a different GP. He listened, he actually listened and took in every word my daughter told him. This was a huge relief. Blood tests showed there was inflammation and for the first time, I heard the term Juvenile Arthritis (JIA). The Doctor was concerned and so we were referred to our local hospital and my daughter was given some much stronger painkillers.
By now I was extremely worried. I felt totally useless as my beautiful 14-year-old child cried herself to sleep, asking me what was going wrong and why this happening to her. All I could do was promise we would get to the bottom of it, and I would not stop until we had. The consultant appointment at our local hospital some weeks later proved disastrous. Instead of a paediatric rheumatology specialist, we saw a nice, but ineffective registrar. She decided we needed to see somebody else and so the wait for some real answers continued… but just two weeks later with symptoms now at their worst, it was safe to say I was worried sick. A phone call to try and establish the date of the appointment ended in total frustration as I was told she would have to wait over three more months!
Three months doesn’t sound like much if you are waiting for a holiday, a birthday or something fun. Three months when your child was missing school, crying regularly with pain all over her body, losing weight rapidly, with her hair falling out, and was now limping and sometimes having to be carried upstairs to bed, fading before your eyes, actually seemed like forever. There was no way I could sit by and wait and luckily the helpful GP was as angry as I was! When I look back at that time, I turned into a crazy, protective mother lion. I felt it was a huge emotional scary battle that we had no choice in—we just had to start fighting to find answers.
I would have given anything to have swapped places with Sophie in a heartbeat and still would without any hesitation.
I am a big believer in sliding door moments, the times in our lives when small decisions or choices change our path in a much larger way that we realise. The day I rang the GP to say we simply could not wait three months was definitely one of those moments. I suggested travelling to London to see a specialist at Great Ormond Street and the GP asked me if I would consider Alder Hey Children’s Hospital in Liverpool instead. Of course, I said yes! Within forty minutes we had an appointment for the following week.
Less than a week later, I practically carried Sophie into Alder Hey as her walking was so dreadful that day. It was early April and for the first time since October when this nightmare had begun, I felt that my daughter was finally in safe. I still remember feeling so emotional as we met the fantastic consultant who reassured us they were going to help and give us answers. The word 'relief’ simply did not touch it. Over the course of a long day, she visited so many departments and had a huge number of tests. Every single part of her body was looked at carefully and thoroughly. At the end of that day, we were told they were concerned it could be JIA or Lupus. My knowledge of Lupus was practically zero and so I looked into both diseases over the next week. Of course, that worried me even more as ‘Dr Google’ can often give the wrong information. The day Sophie and I went back to Alder Hey, a Lupus Centre of Excellence for the official diagnosis was a mixture of relief and devastation. As a mum who had felt sick with worry for months, I was relived to finally have answers. The reality of being told your precious girl has a lifelong diagnosis of lupus was very, very hard. A specialist nurse was totally wonderful, answering questions, bringing tea, listening, and passing tissues. The support of the whole rheumatology team was beyond words. They were amazing, caring, professional, supportive, and kind in equal measure. I would have given anything to have swapped places with Sophie in a heartbeat and still would without any hesitation.
Over the next five years, the support from the whole Alder Hey team never changed. My daughter had countless appointments in many departments, lots of hospital stays and many days hooked up to a drip as part of a management plan to keep lupus as controlled as it can be. Slowly my daughter came back, and I will never be able to thank the team at Alder Hey for everything they have done. We have become involved in research and the wonderfully supportive charity LUPUS UK. We have become friends with people along the way who shared our journey and made such a difference. I know they will be lifelong friends as they have played such an important part in all that has happened over the last few years and an amazing support to Sophie and myself. Many now feel like family. Sophie has tried to turn the most frightening and scary and thing to hit us, into something that does some good for others with charity, Raise Awareness of Invisible Illnesses in Schools and Education (RAiIse) and other work we have become involved in. The most important thing by far has always been to keep Sophie and her health stable and safe.
As a mum, I still feel like so many other mums who have children going through a life changing diagnosis. At times I am ok, but often I am angry and ask, why did it have to be my daughter that has to go through all of this? This was not what I ever imagined when she was growing up so healthy, with so much to look forward to as she became a teenager. Even when things are stable and being managed, life is never the same—you are never totally off guard. You want your gorgeous girl to have a normal life, to experience all the fun, laughs and joy you should be having at that age. But the reality of living with lupus is that you are always waiting for the next flare or bump in the road. I worry what will happen in the future and always wonder, will lupus throw us a curved ball when we are least expecting it? I know that no matter how much I do worry about the future, it won’t change anything, we will just have to deal with things if or when they happen. I think you will always have times when things go wrong, but you find strength to get through it as you don’t really have a choice.
I must ask myself, would I have understood years ago before all this started? Probably not, but I think I have learnt many things along the way.
You learn how to bite your tongue when someone’s response to you talking to them about a bad lupus flare means they feel the need to tell you how their child has also been ill with a cold or bad cough… hardly a comparison. Trying to explain lupus Fatigue is also a good one, most people have no idea that a good night sleep is not going to make it go away, if only it was that simple. People can look at my daughter and all they see is a happy young woman with a smile on her face. They can’t see that sometimes that is just not the case, inside she is feeling horrendous and even doing the smallest and most normal of things is draining and impossible. It can be upsetting when you think that lovely and very close friends and family just don’t understand. I must ask myself, would i have understood years ago before all this started? Probably not, but I think I have learnt many things along the way. I know how important it is to talk things through with people who really understand and are going through a similar experience. I don’t think I will forget meeting for the first time a mum who also had a daughter with lupus. I knew just by looking at her face that we had so much in common and it was so important to talk and listen to each other. I have also learnt how empowering it is for me personally to get stuck in and try and help others who are going through experiences like ours. It makes you feel that although you can’t change what this horrible disease continues to throw at your child, you can in some tiny way, try and make it better.
I have learnt how having a child with lupus impacts me as a parent and how there is no perfect way to get through this, I just have to keep trying your best. I have learnt that sometimes I am strong and ready to take on the world to support my daughter but on other days, usually when I least expect it, I am emotional and can cry at the drop of a hat when I think that everything is unfair. A long walk with my dog can usually clear my head. Thank goodness for Rosie.
By far and away the most powerful thing I have learnt and continue to learn is the unbelievable strength of my daughter. The way she has come to terms with everything that has happened from that very first day of lupus diagnosis has totally blown me away. She has achieved so much whilst battling a long-term chronic condition that it is at times, overwhelming and would defeat even the strongest person, never mind a teenage girl. As an undergraduate at university with a fantastic future ahead of her, she has so much to look forward to. I am so proud of her. With her passion for research advocacy and charity work, plus an ambition of a career in film production, my daughter has a good future to look forward to. Lupus will sadly will not disappear, but I can say with some certainty it most definitely will not determine the whole of Sophie’s story, she will write that herself.
Update May 2024
Ten years on from her diagnosis of lupus, Sophie is good and living live well Lupus. A great time away at university, led to a career in television that she is loving. She now lives in Manchester and is building a great life there. It is so good to see her managing her health with a good balance and doing all the things a 24-year-old should be doing.
As her mum, it has been amazing to see her grow into a strong young woman in her twenties who continues to juggle all her charity work, health, and career, while still have fun with an amazing group of friends, many of whom have been there from the start supporting and caring for her when she’s needed it. They really have been amazing.
Life has certainly been interesting over the last years! Both RAiISE and our charity work with LUPUS UK has grown a lot. There has been a total career change for me linked to rheumatology and research and Sophie’s career in television has continued to take off. We have definitely tried to turn the negative into a positive and help others who are now where we were 10 years ago.
Sophie continues to make me proud. She has spoken about lupus, research, and the health issues of young people all over the world and in some amazing places. I know that lupus still affects her every day and that will not change. Whatever happens next, I know she will deal with it in her usual way, she will have me and together we will always find the humour in every situation and remember to dance.
If I could say one thing to me 10 years ago, it would be that all will be well. Enjoy the time with Jack and Sophie before they fly the nest and keep surrounding yourselves with people who really care about your daughter. She will continue to amaze you with her strength.
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