8 Hidden Challenges Every Caregiving Mum Faces: A Survival Guide for Parents of Children with Chronic and Invisible Illness

One thing – It’s Tough, but You’re Doing Great (even if you don’t feel like it)

Having a child with additional needs, whether acute, chronic or invisible illness, disability or significant neurodiversity is a challenge which none of us were, or are, prepared for.  But in my experience, and that of many others, there are eight key aspects that prove to be the hardest things to plan for or cope with. 

1. Long term, short term and everything else in between

We’ve ended up being unable to prepare or plan for everyday life because we’re frequently disappointed in the way it turns out.  Instead we’ve learnt to permanently shift the balance between competing demands, always operate with an open mind, maintain communication with everyone in case we need them, trust and doubt ourselves in equal measure, and never give up hope (except occasionally when it all gets too much!).  We actually do an amazing job of juggling.  Permanently.

2. Social and Practical Implications of 'Mum':

Unlike caregivers of elderly people we are often seen as just fulfilling an expected role.  But we have so much more to contend with. No one values, appreciates or recognises that our role is different to any other mum’s.  And we’ve got used to that.  We don’t challenge ourselves, our peers or anyone else about the fact that we are actually mums with rings, bells and whistles on because we do what everyone else does – and way more too!

3. Emotions:

Not just good or bad, we tend to operate from the terrible to the incredible!  We’ve got used to the regular rollercoaster of emotions.  What we’ve not got so used to us expressing those emotions because we don’t have time, privacy or an outlet for them.  But just a warning, bottling up feelings can lead to chronic stress and negative experiences settling in our body and mind – and you don’t need me to tell you this because I know you know what I’m talking about (migraines, depression, tummy problems or anxiety anyone?)

4. The expert in your own child:

Professionals know best right?  Except we know they don’t. They talk over the top of us, they don’t listen, they don’t think holistically.  Frankly, they don’t live with our child.   They don’t know our child like we do.   And yet we have to sit back, smile politely and nod sweetly, without raising our voice in despair or frustration or doing anything that goes against what other people claim to be in our own child’s best interests.  We’re eternally grateful for the people that help us, but are somehow not allowed to be human when we disagree with them.

5. Hypervigilance:

No ‘off’ switch has become normal and fight or flight reflex is constantly active.  We’re living in a state of permanent worry about possible risks, changes, the future and the everyday.  It’s amazing we can function like this, but we must remember that it’s not normal and we need to take steps to manage it.

6. Relationships:

All our relationships are screwed up!  We are too close or too distant from our child, we are lonely or too attached to our partners, we don’t have enough time for the rest of our family, we can’t easily hold down a job and we brush things off when friends ask how we are.  Okay, maybe this is stretching the truth, but I bet you aren’t entirely honest with anyone about what you’re thinking about the state of your life, are you? But you probably need to be.

7. Coping with the Impossible:

Caring for a child with complex needs can feel impossible at times. However, it's important to recognize that you're already doing it – and that makes you amazing! It's okay to struggle, need help, or let the mask slip sometimes. The key is to never give up. Remember, "impossible" also reads as "I'm possible."

8. Invisibility and Your Own Needs:

You’ve got so used to your child being the centre of time attention that you may have forgotten this is your life too!  While it's natural to prioritize your child's needs, it's crucial to remember that you matter too. You know your child best and have the right to look after and advocate for them, but you’re also allowed your own needs and desires. If you don’t look after you, who will?  If you don’t express what you need and want, how can anyone else help?  I promise you, there are people out there who want to support you.

So what have I missed?  Do you agree with what I’ve written?  Let me know in the comments, as well as any top tips, ideas or suggestions for how you, or others, might manage this.

Are you affected by this topic? 

Would you like to know more? 

Would you like to help me with my research by undertaking a survey and/or a phone conversation with me talking about your experiences?

Maybe you’d like help in managing where you are at with this?

Send me a message with your contact details and I’ll be in touch.