This is an emotional topic for me and I’m sure for any other chronically ill person who is either a parent or would love the opportunity to become one.
When it comes to parenting with a chronic illness, the vast majority of people have no idea of the daily struggles we face and the battles within our own bodies we must continue to fight. Or even the continuous soul-searching, tough decisions and sacrifices we are forced to make, not to mention the horrendous amount of guilt and judgement we regularly deal with as parents or even as prospective parents.
Sharing my struggles to help others
I’m sharing my personal thoughts and experiences here, along with some very raw emotions, in the hope that my open and honest account of parenting with MS will help others in a similar situation feel more supported and a lot less alone.
Because let’s face it, as hard as we try, we will never be the parent that society tells us we should be aspiring to be. This can often lead to us feeling isolated, misunderstood, ignored and severely lacking as chronically ill parents because we just don’t fit the mould.
Instead we have had to adapt our expectations and work with what we have. We have had to show resilience and create an individual parenting model which supports our own needs too. In short, parenting has been hard for us and always will be but we also love our children fiercely and we’re determined to do whatever it takes to support our families to make our parenting a success.
Becoming a parent with MS
I was blissfully unaware that I had MS when my son was born over 2.5 years ago and wow life was so much easier back then. Please don’t get me wrong, life as a new mum was still very much a shock to the system and there was certainly plenty to learn but my illness wasn’t as advanced. I could still accomplish the majority of things that most other people could at the time and I didn’t have the weight of a life-changing diagnosis hanging over me either.
It was when my son was 11 months old that my world got tipped upside down thanks to a BIG MS relapse and my life changed forever. Suddenly everything I’d taken for granted was out of reach. I was no longer well enough to look after my son for extended periods of time, nor was I well enough to work and provide for my family. I’d lost my ability to be the parent I wanted to be overnight.
Accepting my limitations as a parent
It was a lot to come to terms with. There are times when I feel I’ve fully accepted my illness but often I still don’t believe that I have, especially when it comes to accepting my limitations as a parent as it’s just too painful.
However, I am generally still positive in the face of my struggles, in fact I recently wrote an article on all the ways I’m managing to rock motherhood with a chronic illness which I found really empowering. I try not to dwell on my misfortune, although every now and then a few negative thoughts bubble up to the surface and I really start to doubt my abilities as a chronically ill parent. I’m going to share some of these thoughts with you here. Maybe you feel the same way at times too?
Frequent thoughts I have on parenting with a chronic illness;
‘I can’t be the parent my child deserves’
I didn’t become a parent without wanting to give it my all but sadly my all isn’t all that great anymore! My child deserves more than I can give and this breaks my heart. Who doesn’t want the very best for their child after all? But although I can’t provide all of the energy, activities and full-time care for my child that I’d love to be able to offer, I always do whatever I can, whenever I can and however I can.
I know he will never want for love and affection. I know that we’ve found ways to adapt as a family and that I’ve had to learn to accept help when it’s needed. I realise too that in some ways, as strange as it sounds, becoming chronically ill has actually made me a better parent. I understand what is truly important in life now in a way I never did before.
But I still regularly beat myself up when I can’t be everything that I want to be for him and unless I find a way to ignore the mum-guilt-on-steroids thoughts I probably always will.
‘Stop being so selfish’
I feel selfish because I often have to put my needs first, particularly when my MS is at it’s worst. I often have to concentrate my efforts on looking after myself rather than looking after my child which doesn’t make me feel like I’m going to be winning any mother of the year awards anytime soon!
I also feel selfish because I really want to have another child even though I’m as ill as I am. I’m not sure I’m ready to accept that one child may be it for me. I feel lucky to have my son (especially as many people don’t get the opportunity to be parents at all) and I certainly don’t take him for granted but thinking about a future without any more children still makes me unbelievably sad. Part of me wants to fight for a way to make it work whereas another part is too scared (or is that rational?) to try.
‘Everyone else has it easier’
This is such a dangerous thought as it easily has the potential to take over and make me resentful. I try my best to shush myself whenever it pops into my head but every now and then I can’t seem to help myself (usually when I’m stuck in bed feeling particularly sorry for myself and looking at other ‘perfect’ families on social media doing lots of activities together) then instantly feel guilty for not being more grateful.
Plenty of other parents have their own struggles they’re facing and life could certainly be worse for our family and I always try to remember that.
One thing I’ve also come to realise is that so many people who really do have it easier don’t actually feel any happier because they don’t even realise how good they have it or appreciate what they have. Having it easier isn’t always a passport to happiness.
‘I could be doing more’
Even though I give my all to my child every single day I will never believe that this is enough. Especially as what I could achieve one day won’t actually be possible the next. I start to convince myself that I could be doing more with him if I just tried a little harder. Like I can somehow control my MS just through willpower alone and that the struggles I’m facing are all in my head.
I really believe that sometimes the positive thinking can cure everything mindset can do more harm than good, especially when at the mercy of a chronic illness. Yes, of course staying positive is important but I also need to remember that positivity isn’t going to make my MS magically disappear so I can become supermum either.
‘Will my child understand I’m ill or just think I don’t care?’
My child is still a toddler at the moment so this is more of a future fear of mine. I do worry, however, that he will start to mistake my lack of energy for apathy and that my illness will gradually create an emotional distance between us when he realises I’m not doing as much for him as other mums could.
Although I do think I’m lucky in a way that he was so young when I became ill. MS will always have been a normal part of our family life and therefore, hopefully, easier for him to accept and understand.
The MS Trust have created some great publications, including guidance on ‘Talking with your kids about MS’ which I’m hoping can provide some help when my son starts to become more curious about my illness too.
‘I can’t even look after myself, how can I look after my child?’
This thought is very much reserved for those (all too frequent) stuck-in-bed-with-a-cold-which-is-flaring-up-my-symptoms sort of days when looking after myself feels like the hardest task ever, nevermind looking after a small child as well.
As much as I hate it, all I can do is hibernate, endure it and wait for it to pass. Because the reality is that I’m not capable of looking after a child in that state and getting better is all I should be focusing on.
Luckily my partner and our parents are usually on hand to look after my son when I physically can’t and it just makes me appreciate my healthier days with him all the more!
‘What will happen when my condition worsens?’
A depressing thought I know but one that creeps up on me now and then. It’s also impossible to answer. Sure, the likelihood is that my illness will progress over time but by how much and in what way can’t be predicted. I do worry about what the progression of my MS would mean for my family though, I mean it’s only natural really.
The truth is that anything could happen to any of us at any time and I could drive myself mad contemplating that! So I try not to think the worst and I continue to hope for the best, whilst still remaining realistic about the nature of my illness,
‘Stop being so hard on yourself, you are doing great!’
I try to tell myself this a lot in the hope that if I think it enough it will actually stick! A part of me does realise though that I’m doing my best, despite what my other, more negative, thoughts might suggest!
It also really doesn’t matter if others don’t understand my illness or the problems we face as a family (although I would obviously prefer it if they at least tried to). Or even if they make judgements regarding my parenting, All that matters is that as a family we are making the most of a crappy situation and making it work for us.
After all life isn’t perfect. Our family understands that better than most and have stopped trying to pursue the impossible.
Instead, I try to demonstrate to my son that not every problem in life can be solved but we can try to find creative alternatives. We may not be able to stop a person’s suffering but we can support them and be there for them in the ways that matter most. We also may not have everything we want in life but that doesn’t mean we shouldn’t appreciate everything that we have.
A few final thoughts…
So there you go, the full and honest truth of what parenting with MS looks like for me. If there are any future chronically ill parents out there I hope I haven’t put you off! Yes, parenting with a chronic illness is unbelievably tough but it is also the most amazing thing ever. My son is a ray of light shining through the gloom. He keeps me going and keeps me guessing every single day. I feel privileged to be part of his life, even if it’s not entirely in the way I imagined!
I may have cried a few times while writing this but getting it all out has definitely been worth the emotional rollercoaster! I really hope this article reaches a few other chronically ill parents who’ve had similar thoughts and experiences as I know how truly isolating parenting with a chronic illness can be.
I’d love it if you got in touch to let me know how you’re finding parenting with a chronic illness. It would be so lovely to meet a few more chronically ill parents who get what it’s like!