I decided to write this article after someone asked me if I’d been advised against having children at any point because of my chronic illness. It was a valid question and one I thought long and hard about before we decided to have a baby. Deciding to have children when you’re chronically ill is not a straight forward issue. I’m now almost 20 weeks pregnant and many of the fears that made this decision so scary remain.
Before I go any further, I want to make it clear that this article is based only on my own experience. This is a sensitive topic and I am aware not everyone who is chronically ill gets a choice about whether to have children. I feel very blessed that we were in position where we could make that choice and have the option to have children.
Making our decision
I have always known I wanted children, but it took me a long time to reach a point in my life where I was ready to make the necessary sacrifices. My husband and I had a lot of things we wanted to do with our lives before we had children and that is why we waited until we were 30 before trying to conceive. We had of course discussed our desire to have children before we got married, to make sure we were on the same page. However, once we were married we knew it would be a while before we discussed it in depth again because we wanted to just enjoy being young and enjoy our marriage.
By the time we reached a point where we wanted to discuss the “when”, we had another factor to consider that had not been present on our wedding day; chronic illness. Deciding to have children now I was chronically ill meant we had to talk about lots of difficult things. Ultimately we had to decide if my health changed our decision to have a family or not.
What if my child gets it?
The first thing we had to consider was how we would feel if our child ended up with Rheumatoid Arthritis. It is not a hereditary disease, but your genetics can increase the chances of you developing an autoimmune disease. My mother has Rheumatoid Arthritis, and so do I, but my brother is perfectly healthy. Developing an autoimmune disease is dependent on many factors, and genetics is only one small part. However, we had to consider how we would feel if our child was unfortunate enough to develop one.
The idea of my child fighting the same battles I do every day is barely comprehendible, I would not wish chronic illness on anyone, let alone someone I love. However, I know from experience that my life is wonderful despite my illness and I am so glad I was born. My mum felt a lot of guilt when I developed RA, despite the fact she didn’t have it when I was born and she is in no way responsible, it was just bad luck. I hope as time has passed, she now realises that watching her deal with a chronic illness is what made me so strong and determined in facing my own. RA doesn’t make my life any less wonderful or any less blessed.
Dave and I decided that the small chance of our child developing an autoimmune disorder was not a good enough reason not to have children, for us personally. If that issues arises we will deal with it as a family and I hope I will be the same example to my children as my mum is to me. I don’t believe a life with chronic illness is any less valuable than one without it.
What if my body fails me?
The second issue we had to consider was how pregnancy, birth and motherhood would impact my health. This of course was a huge question, and one which we sought lots of advice on from my medical professionals. There was no doubt that RA was going to complicate things and present some additional challenges that those with good health wouldn’t face. However, I knew that I was capable of dealing with anything, and that I had an incredible support network. This influenced my decision massively, and I decided whatever happened, having a child was worth it.
Deciding to make the necessary sacrifices to conceive, carry and deliver a baby was easy. However when I considered what would happen post birth it was less straight forward. I knew from speaking with my Rheumatologist that my health would likely worsen post birth. It was made clear to me that this could have a significant impact on those early weeks with my baby. My Rheumatologist warned me I’d need help and that I needed to plan for that. I had to consider that a post birth flare up could leave me in so much pain I might not be able to hold my baby. That was scary!
Thankfully my amazing parents stepped in and made the decision to go ahead with trying to conceive very easy. They offered to come and stay with us after I gave birth so that I had practical and emotional support in those early weeks. It may not be the most normal situation, but I have an incredibly close relationship with my parents, as does Dave thankfully. They will be staying with us during the week and running the house, cleaning, cooking and taking care of Blue our dog, so that I can focus on being a mum. Dave will be taking three weeks off work and we will be able to focus on being new parents and know we have support in place should my health fail.
Making being a mum accessible
Another thing we had to consider was making being a mum accessible for me. We quickly realised we would need to plan a nursery with my needs in mind. This will involve planning what height things are put and the types of products we use etc. Things like baby clothes will need to be easy fasten and hygiene items easy to open. There is lots to consider and I have discovered no one really considers disabled mums and mums to be (or at least not in affordable way). One example is zip baby grows for days when I cannot manage poppers, those things cost about four times the price of a normal baby grow and I think it’s ridiculous!
As we considered all the adaptations we needed to make for me, it struck me that life wasn’t going to be typical for this baby. That thought feeds into my biggest fear about parenthood. My fear that my chronic illness will make me less as a mum. Before getting pregnant, and many times since, I have watched parents play with their children and wondered if I’ll be able to do that as well as I hope. I wonder if it will affect my child if I can’t run with them, or if a flare up means I miss a school play or we have to cancel an exciting trip. I don’t want my children to suffer because my body doesn’t work how it should.
Does my chronic illness make me less?
This is perhaps the most difficult thing of all to consider when deciding to have children when you’re chronically ill. When I think about the things I may not be able to do, or the ways my health might let me down, it breaks my heart. That is until Dave comes along and reminds me of everything I can do. He reminds me that love conquers all, and that my children will never know any different. They will love me for who I am. They will learn to be compassionate, embrace differences and show kindness because they will grow up seeing that at home. The things I can’t do, he can and many things he can’t do, I can. We will be a team, and we will be an amazing one.
Another big issue I had to consider was the impact my medications may have on my child. Deciding to have children when you’re chronically ill involves a lot of planning. Relevant changes to my medications began well before we tried to conceive. Prior to falling pregnant my medications had stopped working and my disease was very active. Unfortunately, because we wanted to conceive there was little my Rheumatologist could do. Other medication options were not compatible with trying to conceive or pregnancy. In the end we decided to stop all my medications at around 14 weeks pregnant, apart from pain relief, because the risks outweighed the benefits. This means that post birth I have the added stress of starting new medications, and all that comes with that. It means side effects and reactions matter even more than usual and it also throws breastfeeding into question.
Putting my health first
I would like to breastfeed, if I can. Not everyone is able to, and I won’t know until I try it. However, the chances are that even if I can breastfeed I won’t be able to do it for as long as I’d like. Once my post birth flare up hits I may require medications that are not safe for breastfeeding. I will need to consider what matters most; breast feeding my baby or my health?
This is an easy decision for me, my health must come first. I am no use to anyone, least of all my child, if I am too ill to get out of bed. If that means sacrificing breastfeeding then that sucks but needs must. What hasn’t been easy about that decision is how breastfed focused everything is, and not one article or piece of information I’ve come across addresses mum’s who might have that choice taken out of their hands. I refuse to be made to feel less because I must take care of my health.
So much of what we put out there for new mums to read just induces guilt, and I think that is wrong. A wise friend told me early in my pregnancy to refuse to feel mum guilt or it would swallow me whole. I think that’s good advice, and when doubt has crept in, I ignore whatever I’m reading and remind myself I know better than anyone what works for me and my child.
Deciding to have children when I’m chronically ill is MY choice, and I don’t need to feel any guilt about making choices that are right for me. Deciding to have a family is very personal, and there is no right or wrong. We made the right choice for us, and I am so excited for all that lies ahead. Deciding to have children when you’re chronically ill is not a straightforward topic but I felt it was important to address. Whatever you decide, do what’s right for you.
For a fantastic article from The Spoonie Mummy about getting pregnant with Chronic Illness click here.
If you’re chronically ill and considering having children, pregnant or a new parent check out this article and support group I created here.
For more information about Rheumatoid Arthritis and pregnancy see https://www.nras.org.uk/rheumatoid-arthritis-pregnancy
