by Alice Thomson

Ten years ago, I was in my first year of University at Aberdeen, studying to be a Primary school teacher. It was a daunting, but exciting time. I had plans for my future and much to look forward to. I decided I wanted to be a teacher to help learners, like myself, that struggle in the education system. After achieving my degree, I planned to establish myself as a teacher before going back to University to gain the qualifications I needed to become a Special Educational Needs teacher.

I had always wanted a family and so my plan was to enjoy my early 20s, find someone I wanted to spend the rest of my life with, get married and have two children. A teaching career seemed like a good match with the challenges of having a family. In my mind I had it all worked out. I’d decided that by around my 30th birthday I would probably have given birth to my last child. I’m going to have my 30th birthday this year, and my life didn’t go to plan.

I finished my degree in 2011. It was one of the physically hardest things I have ever done, and I can now say I am proud to have achieved it. At the time I was extremely disappointed I hadn’t achieved a higher level, but my exhaustion and depression meant I felt I was lucky to have one at all, as if my health problems were my fault. I was in a relationship, which wasn’t the easiest, but despite the hiccups, my life was still going to plan. Six months into my first teaching job I had a mental breakdown. A combination of bullying in the workplace, an unhealthy relationship, and my declining health. I went for a week visit to my mum in Norwich, and never went back to Aberdeen. My relationship ended, as did my career.

I’m going to have my 30th birthday this year, and my life didn’t go to plan.

I felt like my life had ended. Soon after my breakdown I was diagnosed with Ehlers Danlos. It took many years and countless trips to local and national hospitals until I had a full and complicated diagnosis. Officially, I have a rare condition called Ehlers Danlos Syndrome Hypermobile type with Marfanoid aspects, Chronic pain and fatigue, migraines, Irritable Bowel Syndrome, depression, anxiety, vasodepressor form of autonomically mediated (vasovagal) syncope with a tendency to postural tachycardia syndrome (PoTS); which basically means I get dizzy, faint a lot, and get pins and needles in my limbs.

An overwhelming diagnosis which is tough to explain to others. My diagnosis did explain why I had struggled so much during my degree and primary school placement. It has taken a while, but I’m starting to accept that my health problems and the challenges I face daily are not my fault. They are the fault of my genetic make-up which neither I, nor anyone else, has any control over. There’s no cure. I won’t get better. All I can do is try to manage my symptoms.

I spent much time in London hospitals, and was able to meet a few people like myself. Having a family was something I had always wanted, so I spoke about this with other EDSers. As far as I know, I can become pregnant, but the difficulties and dangers of me carrying a baby to term are endless. Those that had children often expressed regret at having them. Not because of the damage it had done to their bodies, but because they had passed the EDS genes on to their children. There is a 50/50 chance of passing EDS onto your children, and even if they do not present symptoms of EDS, they can still pass the gene onto their own children.

The possibility of passing this condition on to my children was too upsetting to contemplate. I would never want to put another person through the challenges I go through. I know my mum can sometime feel responsible for passing the EDS gene onto me, but she didn’t know she had it. It’s one thing to pass on a genetic disability unwittingly, but how could I knowingly do that? So, I decided I wouldn’t have children. At the time I was single, it wasn’t so difficult. I may have decided I wasn’t going to have children, but it’s not like I had a choice either way.

It’s not just that my period shows I’m not pregnant; it reminds me that I cannot carry a baby.

My life was on hold for 6 years. Everything I thought I would achieve didn’t happen. I had a plan for my life, and the whole thing had gone up in smoke. Things change, thankfully. Through support, treatments, medication, and a lot of weeping, I arrived at a place where I could see a future for myself. I was able to put my energy into my future. The kids thing was at the back of my mind.

I met an amazing man and incredible partner. I am lucky. I love him. I can see the rest of my life with him. And so, the children subject rears its ugly head. Every month I am reminded of this. It’s not just that my period shows I’m not pregnant; it reminds me that I cannot carry a baby. The hormonal change in me when going through a period has a huge impact on the stability of my joints. During this time, I experience a higher number of hip dislocations, fatigue, IBS flare, and fainting spells. My body’s reaction to the hormonal changes of a period reminds me that it couldn’t cope with the changes of pregnancy.

That’s before the damage that occurs during childbirth and then the difficulties of caring for a child when your own health is so poor. Having children is a choice I have decided not to take, but it’s one of the hardest things I’ve had to come to terms with. This is my choice. Those who decided to take a different path are braver than I. The main lesson I have learned from all of this it not to make detailed life plans, but rough ideas. Anything can happen in life, if your plan isn’t flexible, finding the road back to happiness is made even harder.

Featured image CC0


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