And it’s not because I have MS or for any other medical reason.
I always wanted to be a mother and knew I would be. I was going to be the first amongst my circle of friends to have a baby and felt confident I would be great at it. I had babysat a lot of children as a teenager and loved it. It was just a part of me that had always been there.
I had had two proper boyfriends at university but hadn’t considered them the father of my children. When I met my new partner in 2000 I was ready to settle down and start a family. I had trained as a teacher and had been working for three years. We fell in love and I was very happy. I was 28, my biological clock switched on big-time and the alarm was ringing non-stop! I’ll call my partner X from now on.
The strongest feelings started when a friend and colleague told me she was pregnant. As well as being happy for her I was insanely jealous and on the first day she told me I got to work and sobbed and sobbed and sobbed.
I can’t remember now whether I had already discussed wanting children with X but the feelings were so strong. I’ll never forget the first time I mentioned it and he said he didn’t want children. It was a shock but I was good at convincing and winning arguments so I was pretty certain I would be able to change his mind.
I cried a lot at this time and even went to the doctor to ask for help because I wanted children so badly. His answer was of course; ‘Well, get pregnant then!’. I was then recommended homoeopathy and took tablets daily but I don’t think they did a great deal.
If you’ve ever watched the Catherine Tate sketches where whatever someone asks her (in KFC; server ‘What do you want?’) her response is ‘I want a fucking baby!’, well, that was me. But only in my head and my heart. I didn’t tell anyone as my friends were all too busy having fucking babies! I was already ashamed by this point, determined to display the fantastic relationship with X. I had never wanted to get married so had a point to prove that we were strong without it.
The weekends were the worst. Without the routine of work I would wake up crying frequently plus I was on the pill so was daily having to swallow something that was stopping me doing what my heart wanted so badly.
Don’t get me wrong – I was having an amazing life around all of this. I loved my job as a teacher and X and I did have a lot of fun partying with friends, holidaying and enjoying life.
Then, when I was 29 on a ski trip with school kids my right leg stopped working from the knee down. I presumed it was a ski injury so ignored it on the trip and for a couple of weeks after I got back. I kept falling over and eventually went to see the doctor. He told me I hadn’t injured my knee but that it was an issue with my spinal-cord that could in some cases be the start of MS. I was given steroid treatment and the issue went away. Over the next couple of years I continued to have symptoms in my right leg and was eventually diagnosed with MS in 2004.
I did talk to friends more over the years about X not wanting children and many of the responses were along the lines of; ‘Men who don’t want kids end up being the best fathers!’ or ‘Yes, my partner/husband didn’t want them at first but eventually changed his mind’. One friend did say; ‘That makes me so angry. Men have no right to do that to a woman’, but this just made me defensive of X.
At no point did it cross my mind to leave my partner over this. I spent a lot of time talking to him about it and trying to see his point of view. I remember once him telling me that he was worried I would love the children more than him, he wasn’t ready for the responsibility and so on… I made a conscious decision to choose him over children but secretly hoped I would still be able to change his mind.
He had a very small family of mum, dad and childless sister. He had never had the experience of young children around him.
It got to the point where he would absolutely dread my friends becoming pregnant because he knew it would destroy me for months. Whenever we went to parties with children he saw me light up with joy and love when I got to play with the kids.
Of course, me having MS just added to his artillery of reasons not to have kids and it was very hard to argue against it. He hated the MS and I pushed myself to carry on as normal for many, many years. That I am proud of and pleased about but I don’t know that it was completely healthy.
Really, I was scared of him leaving me because of it. A friend of a friend whose mum has MS once said to X; ‘it’s great that you’re with Nina – most men would run a mile!’ X took this and used it against me many a time to prove how lucky I was that he stayed with me.
Now, of course I see other people with MS in happy, caring relationships with beautiful children as well.
At one point we did actually try to get pregnant. We also spoke to the MS nurse together about it but I don’t think anything would have convinced him. X was extremely reluctant and the sex was rubbish because of it. Needless to say after only a few months it didn’t happen and it was not going to happen with someone who didn’t want it. We argued a lot but I was still in fear of being left alone and people seeing that our relationship wasn’t great. X would always use it in arguments; ‘Is this about not having kids again?!’ so I kept quiet
Eventually, I decided that we needed to get on with having an amazing life without children. I thought it would make X really happy and that it was a positive step forward for the two of us. We sat down and I said to him that if we weren’t going to have children then he needed to make sure that we had the most amazing life instead.
He was a DJ and spent a lot of time out partying. But it wasn’t all fun – he would be completely stressed out for a week before gigs and I would coax him through it. He would then play a gig, indulge during the night and come home telling me he’d had the best night ever. The come down and depression would then follow which was all taken out on me. I suffered huge amounts of verbal abuse.
We were living in a two bedroom flat on the outskirts of town. Of course, the second bedroom for me was going to be a nursery but it was actually a studio for X.
We took the opportunity of childlessness to move into a one bedroom flat back in the part of town we loved. Now that he was back in town X partied a lot more and things started to get out of control. By this time I was using two walking sticks or a walking frame to get about and by 2013/14 I had bought a wheelchair that I would be pushed in for longer distances.
I was finding life difficult – X was up and down like a yo-yo, I was constantly trying to come to terms with my MS and constantly trying to make the amazing life I had promised myself despite not having children. I worked full time in teaching and my career was progressing to management level. I was the main breadwinner by a long way. X organised his life and spent our money on himself and I organised our life and spent my money on the two of us.
In March 2015 I had planned a dream trip to Japan. X had been sober since January (a point at which he went completely off the rails and I had to move into a hotel for a week). We had the most amazing time in Japan and X pushed me around in a wheelchair the whole time, which was something he would never do. I really thought this could be the start of a new phase for the two of us. If he was finally prepared to do that we could travel and have fun as I really wanted!
However, on the last night he got a DJ gig in Tokyo and got completely drunk. He stopped taking the antidepressants that night and a week after we landed he told me, after 15 years together, that it was over.
So, there I was 42, childless, single and disabled. How on earth had that happened?!
One thing I still find very painful is the fact that there are men who really want children. I know it’s obvious but I think I thought all men were reluctant and had to be convinced. I know you’re not supposed to have regrets but I really do wish I had demanded more for myself and seen the need to leave X. I don’t think it really crossed my mind that I could meet someone else and that they too could want children. I had never met the father of my children.
X leaving me was the best thing that could have happened, but of course it was very late to have realised that. I will write another blog about the fun I had dating but the reality was also that once X had left I think the strain of trying to constantly cover up my MS and carry on as normal eventually took its toll and after three years things have changed completely.
But more of that at the end. After X left me I decided I would like counselling to come to terms with some of the decisions I’d made in my life, particularly those leading to my childlessness. My friend recommended a wonderful woman, Vanessa. The first time I saw her I cried so hard I had a nosebleed. It felt amazing to finally open up about my shame and guilt about the decisions I had made.
She got me to write a letter to/about my children and read it out to her. I shared their names for the first time – Daniel (shortened to Danny) and Lauren. This is only the second time I have said these out loud. (I am dictating due to the effect MS has on my hands).
I admitted that I am absolutely convinced the MS started because of the dreadful emotion that happened and I didn’t really deal with when X first told me he didn’t want children. My body reacts incredibly physically to emotion – migraines and more recently nosebleeds are often a response to stress. I’m so good at being positive that I don’t even realise myself when I’m actually falling apart inside.
I have had two counsellors since, both whom have been fantastic, but the grief will always be hard to bear and acceptance doesn’t come easily. It saddens me so much that I have so much love to give but no partner or children to give it to.
In June 2018 things began to get very difficult. I wasn’t coping with the stress of daily life – my physical symptoms were getting worse and I was able to walk less and less. I needed more and more help at home and wasn’t able to move, shower, dress and so on without help. I was still driving in an adapted car, working full time and leading a full social life but it was killing me!
I had constant suicidal thoughts – I just didn’t see the point of me. I have never really experienced true love, never had the children I wanted and now my life is getting harder and harder because of MS. I describe it as the opposite of grief – that begins to become easier to bear with time although it never goes away, but having a progressive disease is like moving towards the grief the whole time and it only getting worse. You grieve for one loss but then there’s more.
I also began self harming. Nothing bad but the urges were so strong. I started taking antidepressants (Sertraline) in August and thankfully they helped hugely. But looking back now I can see that I had had a breakdown over the summer.
I began to feel the need for a support community around me. I looked at the two most difficult things in my life – the MS and my childlessness. The Sussex MS Treatment Centre has been part of my life for many years. I attended exercise classes there and would have complementary therapies during the school holidays but I had stopped going because working full time meant I didn’t have the energy to get there any more. I have started going there again once a week when I can as it is such a safe and welcoming place to be. There it is fine to just be disabled, have MS but still be yourself! In the every day I think I am constantly overcompensating to make up for my disability, which is exhausting.
Finding a community for childlessness was going to be more difficult but after some Googling I found Gateway Women.
There are online forums, Meetups, and a book. But what really spoke to me was information about a weekend workshop. Every bit of the agenda was exactly what I felt I needed so I booked myself on a workshop in London at the end of October 2018.
There were 14 women and 2 running the workshop. It was so strange but wonderful to look around the room and know that none of us had children. We shared our stories which blew my mind. I thought I was the only woman who had not had children because she had stayed with the wrong man. Plus, it had always frustrated me that people presume I am childless because of my MS. I believe I have MS because of my childlessness. I am not childless because of my MS. To be able to tell my story out loud was amazing, but even more amazing was hearing everybody else’s reasons for childlessness. Circumstance, ambivalence, medical reasons, the variety was big but the grief was the same. We all felt shame, failure and terrible sadness.
That afternoon we addressed our grief. I had read some time ago about mourning the life you thought you were going to have, but I had not recognised the stages of grief I had been going through from my late 20s onwards.
I had never really understood the bargaining stage of grief that I had read about, but the realisation that my decision to have an amazing life instead of children was actually this stage of grief and not me coming happily out the other side of it at all. And the fact that none of the amazing life had really happened with X made it worse. It was a huge revelation.
The rest of the weekend was equally fantastic. We looked at coming up with a Plan B and leaving a legacy. I must confess that the Plan B part is made much more difficult with progressive MS as my world is shrinking fast. But the understanding and kinship I gained from that weekend will stay with me forever. We are all still in touch and we’ll have regular reunions. The weekend was just the start of the process.
However, the grief and emotion came at a physical cost. I continue to maintain that my grief and emotions come out through my MS. Three days later I was no longer able to cope at home with one carer and was admitted to hospital. The occupational therapists decided (rightly) that my flat is no longer suitable for my needs and so was unable to go home. I stayed in hospital for two months and I am now living in a nursing home.
I have rested, rested and rested. I no longer feel depressed and I am slowly beginning to accept my situation. I battled to keep going as normally as possible for as long as possible but have had to stop.
I am now 46, single, childless, disabled, going through the process of ill-health retirement, selling my flat and trying to make a future, without letting my anger at the woeful underfunding and lack of provision for younger (as in not elderly) people in need of care get me down.
I am surrounded by amazing family, friends, carers and medical professionals who make my life so much easier.
It could be a terrible sob story but it’s really not all bad! Sadly my dad died in 2016 but it brought the family even closer together and my mum, brother and sister keep the person I was before all of this alive for me.
I started employing PAs (personal assistants) in 2015 and have met the most diverse, interesting and kind people through this. Most of them are still a big part of my life and we have a relationship I wouldn’t have found if it wasn’t for the MS.
In August 2017 I returned to Tokyo to reclaim the part of my heart I had left there. It was the most wonderful and healing experience. A large part of my heart is still there but it is a very happy part, no longer broken and nothing to do with X.
I am surrounded by good people. I am lucky enough to be godmother to 3 amazing young people and have beautiful nieces and nephews whom I love with all my heart. My friends’ children always bring me joy to be around and I feel blessed to be able to be a small part of their lives.
I am a childless mother and the grief of that and the life I hoped for will never leave me but you have no choice but to keep going. It’s the people around me that make that possible.