My MS hurdles- Part 6: Parenting with a chronic illness

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.

my ms hurdles, parenting with a chronic illness

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.

parenting with MS

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.

parenting with MS

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!   

 

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22 thoughts on “My MS hurdles- Part 6: Parenting with a chronic illness”

  • It’s strangely comforting to know I’m not the only one having those kind of mental discussions with myself. I chose to have a child once I already knew I had MS. I often have ‘mother guilt on steroids’ and I suspect I always will, but I’ve also got the wonderful super enhanced appreciation of the good stuff.
    Thanks for your honesty. Good to know I’m not alone.

    • Thank you so much Em for sharing your own experiences with me. I wrote this article because parenting with a chronic illness brings with it lots of tough choices and a heap load of isolation, all with very little support and understanding from the outside world in general. I have the tough choice ahead of deciding whether another child is an option for me now that I have a diagnosis and a worsening of my symptoms. You certainly aren’t alone and I help to run a really supportive Facebook group which is a great little community, please feel free to join us anytime; https://www.facebook.com/groups/718223168361813/ 🙂

  • Hi! OK, well we have lots in common. First off, i was raised by a parent who has MS. We didn’t know until later, he didn’t know. I wish we would have known sooner it explained a lot. We never thought of it as him not loving us, even though none of us knew what was happening. Now how are we alike? Well in October my whole body started tingling burning. My dad and Aunt have MS, so my immediate thought was that, so was my doctors. I had an MRI no legions. So what was happening? Rapidly deteriating health. Unable to take care of him, unable to do much of anything. Turns out I have Complex Partial Seizures (epilepsy), once I started my medication I was completely leveled. My son is 2.5 now, I lots the ability to be alone with him at all as soon as we found out what it was. I can no longer be considered responsible for watching my own child. I lost the ability to drive. I nap, when I should be playing. Mommy’s tired, mommy’s not feeling well sweetie. These words hurt me, I feel guilt. But I know he knows I love him, and I do all that I can when i’m having good days. I remind myself that for lots of kids their parents work multiple jobs and they don’t see much of them. They turn out fine. I give him love, I listen to him and even at 2.5years old, I know he knows I love him. Hang in there, momma. email me if you ever feel like chatting.

    • Hi Jessica, thank you so much for getting in touch! We certainly do have a lot in common and you so get what it’s like! Just know I’m always here if you need to chat too.

    • Thanks Sheryl. It’s a sad truth that many of us with chronic illnesses don’t feel well enough to have children at certain points in our lives or even at all. I don’t always feel lucky to be parenting with a chronic illness but I’m certainly appreciative and I count my blessings for my son every day. xx

  • I can’t even begin to imagine the daily hurdles you face but I just wanted to say that this post was beautifully written and it sounds to me as though you’re doing an amazing job as a mum.

  • Wow I can only imagine how hard it is to raise let alone with the extra challenges your are facing. I commend you for you perseverance and I’m sure you’re child will be able to see how much you care x

  • Such a refreshingly, honest post about the reality of being a parent when living with a chronic illness. I totally get it! Feels as though I could have written a lot of this myself! It’s sooo tough sometimes and people often don’t see the everyday battles we face – both physically and emotionally. I think we just have to try our best to take each day as it comes don’t we, and make sure we cherish the good ones xx

    • Thanks Emma, I knew you’d really get what it’s like, especially running around after a toddler of a similar age! Yes, there are definitely lots of seemingly relentless battles, lots of picking ourselves up and trying again and an abundance of gratitude and appreciation too xx.

  • You are so wonderfully brace for writing this post. I have a friend who has a chronic condition and her son is nearly a year old, I will be sending this post her way as I’m sure she will be able to relate. Just know you’re doing an amazing job, it sounds like you have a positive outlook and your son will have the amazing ability to learn to adapt and overcome difficulties. So well written xx

  • This is such an honest post, and I can identify with so much of it. It’s very hard not to get sucked into the why me, why us thing isn’t it, but in the long run it doesn’t help. I’m not sure you ever can fully accept a chronic illness, because when it’s going through a really difficult patch, it all just crashes in on you. I think one of the hardest parts is maintaining the resilience you need to keep picking yourself back up emotionally when you’ve been dealt yet another blow. I totally get feeling resentful about how ‘easy’ other people have it. I’ve struggled a lot with that, but you’re so right – we actually have no idea what’s going on in someone else’s life, and I don’t remember thinking I had it easy before our diagnosis here, so they probably don’t feel like they’re rocking it either. And worrying about the future what if’s is totally natural, but seriously draining. I’m learning to live for what we have right now, rather than project into the future. It’s hard to do, but totally necessary – otherwise we would feel permanently drained and unable to enjoy the here and now.

    • Thank you Helen, I can’t tell you how reassuring it is actually to know I’m not the only one with these thoughts! Wishing you the best x

  • I can’t even begin to imagine how tough things must be and how you must feel but this is a fantastic post if it even makes one parent with a chronic illness feel like they aren’t alone in their feelings. As long as you’re doing the best you can that’s all anyone can ask x

    • Thanks Rhian, I really hope it helps others who faces these difficulties too. Parenting with a chronic illness can be so isolating at times and really hard to come to terms with. x

  • It’s such a positive thing that you are doing, sharing your very difficult story like this. A lot of what you write here seems to be about comparing yourself to the parent you wish you could be, that’s a tough outlook. But I bet your child sees you as the best and most perfect parent and I hope you can find your identity in his eyes.

    • Thanks Janet. I think especially as my illness got worse so suddenly when my son was still a baby I find it hard not compare myself to the mum I was before. A lot of changes in my life I’ve come to accept but the impact on my family life is certainly the hardest to deal with. I tell myself all the time I need to go easier on myself but I don’t seem to be able to manage that quite yet.

  • Absolutely beautifully written Natalie. You’ve put into words exactly how I feel every day. I just want to reassure you that your little boy, who is so lucky to have you as his mum, will understand the limitations that you have as he gets older. I know my two do at ages 9 and 7. I find that being honest about any difficulties I have and reassuring them about how much I love them helps them, despite me not always being able to do everything that other mummies can. Lots of love to you xx

    • Thank you so much Jenny for your lovely comment and for the reassurance too. I don’t know many mums with MS so I sometimes start to doubt myself and wonder if it’s just me who feels this way! xx

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