How My Identity Changed Since Becoming a Mum

When a woman has a baby, there is always a massive shift. My friends and family told me about the overwhelming unconditional love that flows through your body the moment your baby is born and how your life completely changes overnight.

Even though I believed them, I don’t think I realised how much this is magnified when you are already chronically unwell and have been for over half your life.

Before Felicity was born, all of my family’s lives revolved around me and my health. From the age of 10, my sister learnt that my disease meant that she would have to live around my needs. By the time she was a teenager, she was used to spending her weekends coming to see me in hospital and the older she got, the more responsibility she had. Family holidays, shopping trips, and spending time with her friends were often scuppered at the last minute, when the next medical emergency hit me.

My mum’s mental health took a huge plunge and the strain on my whole family was undeniable. My dad was used to being called at work by my carers frantically asking him his expertise as to whether they needed to call for an ambulance.

They were all used to getting up throughout the night, even when my sister had exams the next day.

When Samuel came into my life, he joined in with looking after me. He learnt all of medical needs and knew how to give emergency medication to stop me from having a seizure. He had to learn to understand my moans and groans when I was so exhausted to speak and my words slurred.

I have felt guilty for years for the pressure that has been put upon my family, but only recently have I come to fully appreciate that it wasn’t my fault. I absolutely hated the fact that my life had to come first, but it was necessary to keep me alive.

In a way I got used to the medical dramas, to flitting in and out of hospital from week to week and the fact that the staff at A&E knew who I was. I was used to the fact that I faced daily ignorance towards my disease and that I had to speak out in the media to raise awareness for the suffering I and so many others faced.

“I guess I was used to being ‘the girl behind dark glasses‘ and I was used to living and breathing them world of one room’…”

I was used to sharing the lows and highs of my journey with severe M.E. on my Facebook page and I was used to things going wrong. I was used to fighting for my health and my rights at the same time. I use the word ‘fight’ because I genuinely believe at that time, I was fighting. Fighting prejudice and fighting the monster. Not that I now believe the latter did me any favours.

I was used to using my energy to help run my charity and to help seriously unwell children. I was used to creating new ideas and expressing myself through art. I was used to speaking to my dictaphone and making notes for what I wanted to write about.

I guess I was used to being ‘the girl behind dark glasses’ and I was used to living and breathing ‘the world of one room’… but now Felicity has come into my life, I have spent a long time wondering who I am now.

You see being a mum changes everything. As soon as she was born, a strong instinct filled me to protect my baby… I didn’t care about myself. Literally as soon as she was born and the medics took her away from me to special care, a new emotion took over. I needed Samuel’s help myself, but I didn’t want him to be with me… I needed him to be with her because my needs did not matter.

When I was recovering from my caesarean, it was a longer process because of my chronic health. They would normally get mums up in a matter of hours, but obviously my M.E. meant it was unchartered territory. I had to see how my body reacted. But unlike before, I did not wait to listen to my physical body because again all that mattered was Felicity, if I had to suffer more intently, then so be it.

For the first six months, that feeling continued to intensify. I didn’t think about what I was physically able to do for myself with my limited energy, I thought about how I could use it for Felicity to help her learn and to create memories.

I stopped being able to put in a lot of my energy towards Share a Star because my energy went on doing everything that I could with Felicity.

I didn’t write many blog posts for the same reason and I didn’t keep up with my social media family on The World of One Room either.

My priority changed and my identity did too. I wasn’t just a girl behind dark glasses and I no longer lived in a world of one room… but I didn’t know where I fitted in. What was my purpose online now?

I know that I am ridiculously privileged to have been able to have a child and that is something I don’t take lightly. There are too many who have had that choice taken away from them by this cruel disease. I also had to try and understand that just because my suffering was now different, it didn’t mean that my blogging didn’t have a point and that it wouldn’t help someone else.

Felicity has given me a purpose that I didn’t know was missing in my life, but I don’t at any point want to be forcing the whole ‘have a baby and all your problems will disappear’ mantra because frankly that isn’t true.

My suffering is different. I have to try and manage my disease around my daughter’s needs. All too often, I don’t actually succeed in this and instead end up sobbing in agony. I have moments where my energy levels seem to increase ever so slightly, but then I overdo it and end up crashing.

I have spent the past few months trying to ascertain what I want and what I want my identity to be. Although I feel that I am a million miles away from the girl who appeared in Unrest and spent all her energy on creating YouTube awareness videos, I have come to accept that those versions of me are a part of what has made me the person and more importantly, the mum that I am today.

My passions haven’t changed… they have just evolved. I have always been passionate about creating a conversation and challenging people’s perceptions, and now I feel that I want to focus on the reality of being a disabled mum. I am sometimes able to walk around inside and more often than not, I need to use my wheelchair. I sometimes need to wear dark glasses and I sometimes need to put in ear plugs.

I am now learning that I need to coexist with my M.E. (and I seriously wish I had taken the time to understand this years ago). I have come to learn that sometimes I need to put my rest at the top of my agenda and I often need to just lie down in my bed and write (even when it doesn’t make any sense). I have come to accept that I do rely on Samuel and the rest of my family to be able to manage and that all of this helps me look after Felicity to the best of my ability.

Despite how much my life has changed, I am still the same Jessica I have always been and I finally feel ok about that.