What is it like for two people with chronic conditions to live together? How do we manage it all? I have multiple chronic conditions and so does my mum. We are each other’s primary caregivers. Many people I know wonder how we manage together, so I thought it would make sense to write about it in the hope it’ll help someone else out there.
Also, if you’re in the same boat as us, then please part with some of your tips too!
And, please remember that these tips are based on the medical conditions we suffer from, how well we get along and our personalities in general. I am in no way looking to give any medical advice (includes physical or psychological advice) as I am not a medical professional, so please always seek a professional for your needs.
Now here’s how we manage as caregivers for each other.
1. We believe and trust each other
When either of us are going through a flare up or even the smallest form of discomfort, we trust each other. We have always acknowledged and believed each other’s truth.
There is a lot of power in knowing that you are believed. It naturally shows respect for one another.
This definitely comes from the fact that we’re naturally hard workers and won’t shy away from going beyond the necessary. It’s not in our personalities to make excuses so I guess that too helps to build trust.
We also trust each other to help when one is having a worse day than the other.
Over time you get to understand what helps and doesn’t help. That awareness makes flare ups easier to manage.
2. We are responsible for ourselves, but…
We are responsible for knowing how much to push ourselves, listening to our bodies, knowing what food works for us, which medicines aren’t making us feel so good, but we also watch out for each other and are aware of the signs when we see something off that we are unable to notice for ourselves.
So for example, if I notice my mum’s eye not opening properly or an unusual mark on her – I will point that out and we look to figure out what’s wrong and even call up the doctor when needed.
What this means is, we’re not in our own bubble with our heads in the laptop, tv or phone – we actually look at each other!
3. We give each other space
Thankfully mum and I are home people. We’ve made a conscious effort to create a comfortable environment at home and we look to do what we wish to.
Whether it’s me working on this blog, my YouTube channel or whether it’s her reading the book she wishes, taking her walks – we’re happy giving each other that space and alone time.
We’re not clingy at all!
I think this helps for us to feel mentally fresh when we converse and discuss things.
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- Spoonie Thoughts: Does Chronic Illness Change You?
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4. We do things together
Yes, so like I said, we’re not clingy, but we have a lot of common interests too and we do that – whether it’s watching cricket, our favourite TV show, taking care of the house plants, cleaning the house, shopping (even shopping online together!).
It’s fun because these are passive and active activities together which help keep the bond alive beyond the times when we need each other’s help during a flare up.
5. We create lists and remain organised
Just to give you a couple of examples, we make sure that we keep our medicines organised and put them in our pill boxes for the week ahead. We also make sure that we have enough medicines for at least six weeks.
We have part-time house helps so we look to make a to-do list for things we need help in so just in case we’re both experiencing brain fog, we have a list stuck on the refrigerator that can be referred to.
We also do that with groceries and vegetables – we keep adding to our list as things get over in the pantry and refrigerator, rather than trying to remember what we need last minute.
The funniest is when we ask each other to remind us to do something – it never happens! We’re very unreliable reminders for each other, which is where writing on paper or adding reminders on the phone help.
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6. We take turns
Very rarely and thankfully do both of us experience flare ups on the same day so we naturally seem to understand who is having a worse day and step up for each other.
This way we take turns to help each other without overdoing it.
During those rare occasions when we’re both experiencing a flare up, we do what we can to help each other, understanding that we’re both having a slow day and do our best to rest it out.
7. Divide responsibilities
There are things I can’t do and mum can and vice-versa.
We don’t push ourselves to do everything, instead we divide our responsibilities and pace it. This is where understanding each other and the limitations of our conditions, age and personality play a vital role.
For example, in these Covid-19 times, I take care of sanitising everything that comes in the house – all groceries, vegetables, medicines – everything. But it’s mum’s responsibility to put those things away in places and ways she is most comfortable with as she has memory issues and needs things to be kept in a particular way for her to be able to remember.
This way, not one of us is burdened with the entire process. We create balance by dividing responsibilities.
8. Meal prepping
We tend to meal prep to make sure we have all our meals well planned. Somedays, my mum will cook extra food, which she can freeze for the following week.
Personally, I like to plan my breakfast for the week which allows me to stay on top of my endometriosis and Ehlers-Danlos syndrome friendly diet.
Meal prepping is an essential in making sure we’re eating well.
9. We have real conversations
Whenever we want, we share our fears, pains, hopes and desires – what’s special in all this is that we work to make each other’s desires happen.
Also, these conversations help us to release an emotional build-up, it helps us to see clarity when we hear ourselves, it helps us to understand each other and it helps us to encourage each other too.
What you won’t find in these conversations is either of us being distracted by technology or anything else. Neither do we lack patience. Instead, we look forward to how these conversations allow us to grow, be better listeners and help create an atmosphere that’s healthy.
Now, we don’t shy away from disagreeing with each other and sharing our varying perspectives – which again, I believe is very healthy too!
10. We understand that frustration isn’t personal
We’re both sick, we’re both dealing with our visible and invisible disabilities, we’re both taking medications, yet we’re two different people who are in a completely different phase of their life so yes, it’s very normal for us to have frustrations because this body can make life so restrictive and dependent.
And in all this, we both understand that our frustrations aren’t personal. We’re not deliberately directing it to each other and I think because we both know what it’s like to be sick, we’re more mindful of the situation because we’re in it together.
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- 7+ Things I Learnt From Endometriosis
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11. We’re okay to take help
Yes, we take external help.
Like I mentioned earlier, we have house-help, which makes life a lot easier for us for sure. We also have family too (although not physically present).
But in recent times, with Covid-19 being riskier for those with comorbidities, we’ve willingly taken help from our neighbours and the staff in our apartment building. They’ve been really nice to help get us whatever we’ve needed when lockdown was imposed so that we didn’t need to risk our health.
In general, mum and I love our space and are happy to be independent but yes, this lockdown phase has made us more receptive to taking help from other people.
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12. Our heart is in the right place
Despite all the issues, we want to make life simpler for one another. That basic desire to be helpful comes through in all our thoughts, conversations and actions.
Yes, I hear you say that isn’t that all expected because we share a mother-daughter relationship?! But even then it’s very easy for negativity to build and I believe if we weren’t doing all the 12 things I’ve shared, the atmosphere at home could’ve been very different.
Also, everything I have shared is what good relationships are about but I think where it becomes special for us is that we both have chronic illnesses and that means we understand each other very well.
We know that being fatigued isn’t either of us being lazy, we know that if a doctor says that “it’s all in your head” then we need to search for another doctor and, we both know that the pain is real.
We’re two individuals, battling various conditions on our own, yet we’re in it together.
Feeling grateful.
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Disclaimer: I am not a medical professional. I am a patient and have created this platform to share my experiences. This is all purely informative and in no way am I providing medical advice. Please consult a medical professional.
I love when you say that there is a lot of power in knowing that you are believed – so, so true! I think that is the root of support and kindness – believing each other and being there together through difficult situations. And yes to space as well, that’s so important and especially while we are staying home . . .
You have to have a strong relationship to get through this day in and day out. I’ve come to respect your mom (through getting to know you). In your other posts and podcasts, you often reference your mom’s wisdom.
As a mom with chronic illness with a daughter with severe PTSD, anxiety, depression, and ADD, we are constantly looking after one another. There is a deeper understanding that I have with her than anyone else (not just because she’s my daughter). Also, it’s interesting, but often when I’m down and out, she’s able to be the strong one and visa versa. We don’t live together at this point; she moved into her own place about a year ago, but we see each other often and sometimes I spend the night at her house and she ours.
I don’t wish chronic illness (physical or mental) on anyone, but I must say that having a partner in my daughter is one of the biggest helps I have.
Thank you for sharing your story. Maybe one day, have an interview with your mom (if she’s well enough and not too shy). 🙂
I’ve always wondered how you and your mum manage. This post isn’t only insightful but full of wisdom, useful tips and so much love.
Wow this is interesting. I recently moved back home with my mom who deals with chronic issues as well. I’ve been wondering how can I manage my own pains while my mom has her own challenges. And to be honest, oftentimes I feel guilty because on my flareup days, I feel like I need to be with her instead of taking care of my own pain management. I didn’t realize my guilt until reading this post!!! That’s crazy. I’d have to come back to this post again. It brings a lot of perspective to living with mom now.