Happy Friday everyone – albeit subdued with these unprecedented days. I hope you’re all safe and well. This week we have Laura and her partner Andy sharing their experiences of Laura’s condition and how it potentially affects their decision to have children and their future. A crossover with On Living With Illness, showing how hard it can be to make decisions when health plays a huge role. As always, I’m so grateful for everyone’s commitment because it is such a personal subject to open up about. Please do read, leave a comment and share as much as you can, I’m really willing this to grow and grow so that we can help as many people as possible who may be going through something similar.
I’ve also started to build a resource list, for those of you who are either childfree by circumstance or childfree by choice. A combination of blogs, communities, individuals who are doing wonderful things in this space. Please do let me know if there are resources you use I can add.
We Are : Laura and Andy, mid-20s
Home Is: Merseyside
We Do: I’m a blogger working part-time from home as I have a disability, Andy works full-time as an IT Analyst
I grew up having sprained ankles and wrists, really sore feet if standing for periods of time and bad headaches. Aside from that I was what most people considered to be ‘normal’. I went to Northumbria University in September 2012 and met Andy as he had been allocated the room directly next to me. After being what I consider to be being bullied, I had to seek help from a GP. It turned out that the stress from being put in that situation had triggered Fibromyalgia, which had woken up a dormant connective tissue disorder that I’d had since birth. After a lot of back and forth between numerous GPs and hospitals, I was diagnosed with Ehlers-Danlos Syndrome, with my type being the Hypermobility type. It affects the collagen in my body and means it’s faulty, which brings up problems like joint subluxations, fatigue, digestive problems, migraines, TMJ issues and more.
I had planned to live a normal life. After a lot of struggle I graduated from my law degree but had decided since starting to blog that I wanted to work in Marketing. We both moved in with my Dad as Andy’s family lived 2 hours away and we just couldn’t do a long-distance relationship as we had lived together since the day we met. I got a part time job in Boots, and with it being a cashier role, I was standing up for pretty much 6-8 hours a day. Once I stopped working there it took over a month for my body to recover. I was having lightning bolt nerve pain through my wrists, joints were moving out of place, I had horrendous migraines and I just wasn’t doing so well. I applied for full time marketing jobs but nothing came of that. The pain intensified and I came to the realisation that I could not lead a normal life and would have to seek work from home.
Working as a blogger has been fun, but the payments from working with brands is inconsistent and often late. With the whole Personal Independent Payment system being hugely flawed and outright awful for people with disabilities, I haven’t even tried to apply yet because I genuinely can’t deal with the stress. For the most part, I wouldn’t be ‘disabled enough’ to qualify for anything. I can’t get a blue badge even though it’s dangerous for me to get in and out of a wheelchair in a busy car park. As an ambulatory wheelchair user, I’m having a difficult time going out and living a bit of a regular life. At the moment I’ve been feeling dizzy to the point of almost fainting (pre-syncope) which is an added stress and means that I can’t leave the house by myself anymore. I have four upcoming Cardiology appointments to figure out what is going on, and Andy has to take holiday leave every time to take me. As you can probably guess, we’ve not been able to go on holiday in years which is partially down to this. I’m incredibly lucky that Andy’s manager has been so understanding.
From looking into Ehlers-Danlos Syndrome more, it’s made us question whether we will have children in the future. I have a 50% chance of passing the condition down to future children as it’s a genetic condition. Would I want to put a child through this? Knowing that my Dad has a high chance that he has the condition (has been told by multiple doctors but not formally diagnosed) and I am in a lot worse condition than he is, would this mean my child could have it even worse than me? The whole situation brings up a ton of questions. I don’t know how my body would cope with pregnancy too. I have high blood pressure which the Cardiology team at the local hospital are dealing with, but pregnancy could make it dangerously high. There are risks of premature or rapid labour, tears during birth (and this is worrying as the condition makes me bleed a lot and wounds are slow to heal), problems with anaesthesia which basically means I metabolise it too quickly so need a stronger dose, and unstable joints. There is a good chance that my hips could dislocate and there could be complications with things such as my spine. It means that neither natural birth nor caesarean sections are ideal ways to give birth. The choice would be up to people taking care of me but Andy has said to me that he would really not like to see me in such pain, and putting my body through all of this. It could well ‘disable’ me more. If this were to happen, how would I look after a baby whilst Andy is in work? He is the income earner for our house and we wouldn’t be able to afford a nanny/nursery.
We always planned to have multiple children, but I don’t really know now what we will do. We just can’t see how it would be viable for me to go through a pregnancy knowing how much it could damage my health. Or how I’d be able to look after a baby when I can barely look after myself. There is no way we’d be able to afford our mortgage for our house we bought 2 years ago if Andy had to work part time or we paid up for nursery. But would we like to have children in the future?
After speaking to some family members who don’t have children, and looking at other people with Ehlers-Danlos Syndrome online, we have come to the conclusion that we will need to speak to healthcare professionals about the condition and what is advised. It’s not just the pregnancy, it’s about looking after children until they start school. I’d have to come off all of my medications through pregnancy, and would have to start back on them as soon as I’d given birth as I am useless to anyone without my pain management. It brings up so many questions. We have thought about adoption too but would I qualify for adoption with such a bad disability?
It’s not fully known yet whether Ehlers-Danlos Syndrome is a progressive condition, but with me I can say for sure it is. I seem to be deteriorating before my own eyes. A lot of people have a lot of unsolicited advice for me and it’s so mentally draining. Some have basically said they want me to have a child for their benefit and completely disregarding what it would do for my health and potentially the child’s health too. Others have given me the classic ‘remedies’ such as exercise, eating kale, doing yoga and losing weight, which will apparently ‘cure’ a condition that cannot be curable as it’s genetic. Having so many people try to tell me how to live my life is upsetting when they’ve not looked up my condition or really asked me how bad it is to live with it. I’m home alone for 9 hours a day and struggle to even write a blog post or pick up some paint to be creative. The people wanting me to have a child because they ‘want’ me to, makes me feel like I’d be an incubator, purely here to deliver them a baby.
From Andy’s Perspective
I’ve seen Laura go through so much over the past few years and she has had to put up with so much. She is stronger than she will ever realise and keeps going even though she has experienced multiple complications with her health. I’m glad that she has got some answers and medication to help manage her conditions but she still has things outstanding that need to be investigated. It’s been really hard watching her struggle through things and has to adjust to not being able to do things that she used to. She still feels guilty that her disabilities have meant we change the way we do things sometimes, regardless of how many times I try and reassure her that I never think of it this way and that we just have to think and plan things slightly differently and that’s okay such as taking her wheelchair in the boot of the car.
Laura is such a caring person and will always put other people first over herself even if this is to her detriment. I have to remind her that she needs to think about herself and consider how things are going to impact her and that she doesn’t have to do something regardless of whether it could give her a lot of pain. We have spoken a lot over the past few years about kids and are both on the same page that we aren’t ready yet and we’d have to consider the complications that could arise before we decided to start trying to get pregnant. We’ve discussed that if we decided not to have kids because of the risks involved that it would be okay and we will still be completely happy as a couple. I’ve said to her that I would never want her to feel like she has to have kids even though she knew it could change her life with complications, or at worst make her lose her life during childbirth because of increased blood loss and other potential symptoms that aren’t fully known yet to the experts. I want the best for Lau and will make sure that her health comes first. No ifs. No buts.
Thank you so so much to Laura for sharing her honest story as a guest poster and sharing her thoughts and views in this piece, as well as Andy’s input and how he feels. As I’ve stressed from the very beginning, this is a warm, empathic platform for people to share their stories, hopes, dreams, fears. Please do read Laura’s story and leave a comment if you’d like to and share this series if you know anyone it could help. Together we are making changes.