Exclusive:
Abby Smith, 40, a NHS manager from Reading, has the rare autoimmune disease myasthenia gravis, which means she needs her 15-year-old daughter Chloe to look after her. Here she tells her story
I first experienced symptoms of myasthenia gravis, which causes muscle weakness, about five months after I’d started university at the age of 18, the onset was sudden. I had double vision and a droopy eyelid; I was very self-conscious. I struggled to see, I was getting migraines, I was tired, reading and working were difficult.
When I was first told it was MG, I googled my condition and was horrified. I had this disease no one knew much about for life; I was only 20 and it all felt very unfair. My mental health took a real battering. In MG, antibodies in a sufferer’s body block or destroy receptors between the nerves and muscles, preventing the nerves from triggering muscle contractions. The disease affects 50 to 200 people per million; and each year three to 30 people per million are diagnosed.
At first, I felt that my life had been stolen. I always had to have my medication with me, I had to think about every journey I made, about the impact just one activity would have and how I would feel afterwards. And I feel that Chloe has missed out because she didn’t have a young and healthy mum – I’ve grieved for the life I thought we should have.
Chloe is so independent and capable compared to her peers. She can cook, clean a house from top to bottom and do laundry. When she was old enough, she’d run to the shops, use the vacuum, keep her room tidy and make her bed. We’d share tasks out.
I had Chloe when I was 24, in remission and working in London. My eyesight had improved but when my symptoms returned six months later, they were generalised, causing real weakness in the rest of my body, my head, my neck and my legs. Things got so bad, I had to live downstairs at home as I couldn’t manage the stairs. I needed carers and I couldn’t lift or bathe Chloe. I needed a commode because I couldn’t get to the bathroom upstairs, I needed lots of aids and I had a lot of hospital appointments. I needed so much help just to exist.
I wasn’t brought up to be reliant on other people, but I had to accept that I needed to ask for help and be vulnerable for Chloe’s sake. At first, the thought of being involved with social services freaked me out. I thought ‘are they going to come and take my baby away from me?’ But all they wanted to do was let me live a good and safe life at home. I’ve also had great GPs that have put everything in to making sure I can stay as safe and well as possible.
I moved to Reading in 2014, to be near an aunt. But I had to move from my second floor flat after I fell down the stairs backwards, splitting my head open. A GP filled in the right paperwork to ensure I got rehoused in a ground floor flat, and that occupational therapy would add the adaptations that would make me safe. Overall, we’ve felt very supported, there have been lots of people willing to put their arms around Chloe and help her. When Chloe was older, I had a childminder who would help, her school was very understanding and other mums would help too.
Social media was my lifeline, the MG charity, MyAware, has a Facebook group that helped me get in touch with others with MG. It also has a welfare officer, and he supported me with my blue badge application and my PIP (personal independence payment) paperwork. I’m finding I’m able to support those recently diagnosed. The start of the journey is scary, but I’m able to tell them it can and will get better. I have a great relationship with my medical team, and I want that for everyone.
The decisions that are made about your health do impact those that care and support you too. There are also resources out there so contact adult social services, contact the carers association ( carersuk.org ) and a specialist charity. Early on, I avoided telling Chloe about things like hospital stays. I’d send her off to her auntie or childminder. When I’d arranged for other people to take her out to activities, she must have thought why wouldn’t her mum do things with her. Now she’s older I can be completely honest with her.
Her primary school was a great support, and the social worker helped her connect with other young carers and offer her activities and trips out. She’s grown up to have great empathy and compassion and understands that some people need more support than others. She’s flown through Army cadets and her desire to help other people is really evident. School has always been complimentary about her desire to help others. She’s got a strong moral compass.
When she’s older, she’d like to be a doctor. She’s passionate about medicine and has had an insight into the profession. She’s a smart cookie and self-disciplined. After her GCSEs she’s planning on taking A-levels and then going to university. But I worry that she internalises a lot and that she should have fun, but it’s hard to achieve a balance. For a long time, I felt very guilty that I couldn’t give Chloe the typical childhood that she deserved, but on the flip side she has got so much more. I was shocked when I went to university and people there couldn’t cook or look after themselves. Chloe will be fine on her own.
Chloe says:
Being a child carer isn’t just about taking care of another person, it’s also about being independent enough to take care of yourself. When I was about nine or 10, I realised my friends’ home lives were different, but I didn’t properly understand until I was in secondary school.
When I did find out that my friends didn’t help at home in the way I did, I found it very strange; their parents were doing chores like laundry, that I thought of as my job. But being a carer teaches you about responsibility, and how to care for someone other than yourself. I never felt I was missing out, but I did feel like I had to grow up faster than my friends, and sometimes I wished I didn’t have as much responsibility. But now I’m very grateful for the experience.
I was able to be very flexible with my hobbies and activities because I wasn’t caring on my own, my mum had other support. My other family members, teachers and some friends supported me too. My role as a carer has made me much more caring and motivates my drive to help people who might feel overwhelmed with that kind of care. I feel independent, and it’s influenced my career plans – I’d like to become a surgeon for the Army when I’m older.
For further information and MG support visit myaware.org; and for more information for young carers, visit youngminds.org.uk
