The dynamics of relationships change when a loved one has a chronic illness. There are two sides here – the one that is unwell and the other that is not. Here I attempt to give my perspective and some tips to both sides.
Chronic Illness and Relationships
Dealing with various people and their varying personalities is an interesting aspect of life that we all deal with, especially if you’re close to them.
What can alter and compound our relationship challenges is when one person is dealing with either a short-term illness or a chronic illness.
The issue is, we have a set image of how relationships should be – whether it be with your child, your sibling, your parents, your friends, your husband/wife/boyfriend/girlfriend, your teachers, your boss, your colleague… We have these ideals.
We don’t usually add the possibility of dealing with a chronically ill loved one into the mix. We don’t imagine us becoming unwell or how it would impact someone who isn’t dealing with the illness but is still seeing you go through it.
The dynamics of relationships change. They’re not the ideal we secretly hoped for, yet we’re in it.
Now that you’re in it – how do you handle either aspect of it?
Before I answer and share a list of tips, I wish to speak about the sort of experiences I had with loved ones when I was faced with endometriosis and PCOS as an 11 year old and later dealing with Ehlers-Danlos syndrome in my thirties.
Sometimes we learn more from an experience than just a list of tips and these experiences will help give context to the tips that follow.
Relevant Read:
- My Endometriosis Story | How I was diagnosed with Endometriosis
- My Journey: Being Diagnosed with Ehlers-Danlos Syndrome
- 12 Things We Should Know About PCOS
Endometriosis and Relationships
My periods began at age 11. There was heavy bleeding and extreme pain. Only my mother understood what that was like.
She saw herself in me as she had suffered the trauma of endometriosis and adenomyosis, but the difference was, she suffered in silence – it wasn’t something she spoke of or expected support for in the 1960s.
Here it was different.
My mother supported the 11 year old me as I let the GP knew of my issues.
I felt backed up.
Strangely, instinctively it seemed like talking about periods, or medical conditions around it like PCOS or endometriosis was wrong. It seemed like something you shouldn’t do.
No one told me I shouldn’t but I felt so. It felt too intimate, too personal.
But despite feeling so, I wanted to be truthful and not hide away.
My father and brothers never irked, or dismissed a conversation on endometriosis or its symptoms or the fact that I bled so much. They never told me they don’t want to hear it.
They were my quiet supporters – I knew I could tell them if I was having a bad day.
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I think what helped my cause was that despite the pains, I was always a hard worker, whether in school, work or home – I knew my responsibilities and believed in fulfilling them. That effort brought with it a lot of respect.
At age 16, I started working on the weekends (school on weekdays) in a retail store on Oxford Street, London where the shop floor was always busy – even there, on bad endo pain days I was allowed to work in the stockroom where I could hideaway and sit when needed too.
I was never discriminated against in any way, instead my pain was well understood – there was empathy.
I do know my inability to pick up boxes or do additional rigorous work at the store meant others had to step in for me, but no one ever made me feel bad about it.
It was in school where it got tough and I was labelled a hypochondriac by some – but this whole phase of education and school life deserve a post of it’s own which, guess what, I’ve actually written about:
Endometriosis severely damaged my strength and ability to continue through to further education or even be able to sustain a stable career but what I was still able to do was talk about what was going on with me.
Over time I realised that when I was younger and still going to school, the world was far more forgiving of my inability to perform at optimum levels – as I grew older, I realised that I was facing a competitive world where the playing fields were set at such a level that seemed tough for me to reach with the debilitating pains I was challenged with.
My family always encouraged and gave me confidence but the struggle of the real world was different.
It was then that I realised how wonderfully lucky I had been for receiving the mostly positive support I had got throughout my teenage years.
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Such support showed the value of being kind and understanding but now I needed to adapt. One day, I’ll go into details of adapting to the working world when faced with a chronic condition like endometriosis.
For now let me quickly mention Ehlers-Danlos syndrome and my relationships before I go into the tips of managing chronic illness and relationships.
Read Here For:
- Connecting Endometriosis and Ehlers-Danlos Syndrome
- The Relation Between Endometriosis / EDS and Chronic Fatigue
Ehlers-Danlos Syndrome and Relationships
Ehlers-Danlos syndrome threw a whole new challenge.
Although my EDS symptoms began at age 8 with my knees hurting and it all being dismissed as growing pains, it was not until age 31 that I ended up with the inability to walk.
I knew what it was like for my illness of endometriosis to be invisible – now using an aid of a wheelchair to walking sticks had made my condition quite visible.
This was unknown territory.
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I wasn’t a teenager dealing with endometriosis, I was now a woman in her thirties fighting a new additional battle.
It was during this time that my family and old school friends remained just as strong as they had done when I was younger – in fact they were stronger.
They too had evolved and grown to value the importance of support.
They backed me for all my medical decisions, they trusted me when I said I hurt, they asked questions – they showed interest in what was happening to me and in all this, they kept their humour up – making me laugh – giving me company – supporting me mentally, physically and financially.
They argued, they debated, they listened – they kept my mind engaged.
They truly had evolved from the endo journey that had started 20 years prior.
For me my endometriosis pain was my normal and now I had the pains from EDS that was becoming my new normal – but for some, my situation made them uncomfortable.
I lost people who I thought were friends, but when you’re dealing with so much, such losses don’t hurt, they don’t hold value.
I eliminated the toxic people that hung around – they held no place in my life if they only wished to add pain and conflict. Such an unhealthy environment could never promote the healing I needed.
But then, thankfully, I gained friends too – those who found strength in my strength and reminded me of how powerful my mind was. These friends, who didn’t know the me before I became sick wanted to know more about my journey while they shared theirs.
Nothing came out of pity – it was all mutual respect.
That’s how relationships with loved one should be and I received that.
That’s my story and as promised, here are my tips…
Tips for Chronic Illness and Relationships
These tips have been divided into two sections, the first is for carers, family, friends, – those who are close to the one unwell. The second is for those who are unwell.
Tips for Carers, Family & Friends of Those Who Have Chronic Illnesses
1. Educate Yourself
It’s important to know the name and the details of the medical conditions suffered by the patient.
It’s the best way to gain an understanding on what the patient is possibly going through and what could be faced later on.
Every patient is different so when you educate yourself on the condition, you should also know what works for this individual patient because every patient is hampered by different symptoms of the same condition and also a different combination of chronic conditions, therefore each patient is unique.
Educate yourself on the patient’s triggers, such as what type of sound, smell, foods, fabrics, movements etc. increase their symptoms so that you can do your best to avoid it.
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2. Trust the Patient
Anyone dealing with a chronic condition has many battles to face when it comes to advocating for themselves at the doctors.
A patient doesn’t just have to deal with one doctor or one treatment, they deal with many in the medical profession and every time they go through similar challenges of advocating for themselves.
Which is why, all your loved one really wants is to be trusted – to be believed that what they’re saying is the truth.
Being dismissive adds to hurt and their upward struggle so please trust the patient.
Also, if a friend who is unwell cancels on you, be more understanding. When they committed to coming, they probably felt they could make it – a flare-up may have changed that. Trust that this isn’t being done deliberately.
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3. Be a Good Listener
Being a good listener, hearing your troubled loved one creates a healthy mental environment, especially when they may not always get it from their doctor.
Many doctors don’t look to explain or go in depth and it can make a patient feel like they haven’t been heard or are even being conversed with.
A patient wishes to be treated like a human being and not an inanimate object, which is where listening to the patient plays a large role in avoiding this.
And so I suggest, please listen and understand – it helps a patient feel normal.
4. Be Respectful
A chronic illness warrior may have to go through various stages in their illness where they may be attached to various tubes – feeding tubes, a foley catheter etc…
None of the stages are easy to go through and showing some respect towards them in this journey goes a long way in helping the patient feel validated and understood.
5. Add Humour
Creating a light atmosphere, smiling, finding the small every day things to have a giggle about increases health-enhancing hormones – endorphins.
Having some humour added to the whole seriousness of the situation deviates the patient and carer from the already tough realities being faced.
6. Understand Physical Limitations
Every person battling a chronic illness has varying physical limitations. These can change on an everyday basis so for example, if I am able to walk using walking sticks, tomorrow I may need a wheelchair. Ambulatory wheelchair users are quite common.
Also, one day a warm hug may help and the next day, touch may not be liked so it’s also nice to ask and create a two-way dialogue of how the patient is feeling that day.
Changes can happen fast and being aware of it keeps everyone away from unnecessary conflicts.
7. Express What You Feel
In all this, voice your concerns and what you feel. If you have troubles or issues, talk them out.
You’re not expected to be a super-hero, you’re expected to be kind, understanding and real. So if in all this, you’re going through something then be open to talking about it or at least be honest that something is on your mind.
Keeping clarity in any relationship goes a long way.
8. Take Time Out
Take time out for yourself.
It’s not easy to take care of someone who is unwell – a lot of it is about them and their illness which is why, to stop yourself from getting drained you need your me-time as well.
It’ll help you rejuvenate and replenish your mental state.
Do things you love to do. Don’t lose yourself.
9. Be Inclusive
Being stuck at home isn’t good for anyone – especially someone who is unwell. A bit of fresh air, a walk, a meal… anything that doesn’t create too much strain should be done.
So if your loved one is unwell, be inclusive and make them a part of your plans – if the patient can’t make it out then don’t hold it against them – invite them out again.
Or maybe plan something in their space – whatever works to change the usual environment.
10. Don’t Say – “But You Don’t Look Sick”
Please never say this to someone battling an illness. Many chronic conditions are called ‘invisible illnesses’ for this very reason – the fact that you cannot tell that the person is unwell – it’s visually invisible.
Plus it takes a huge effort for someone who is unwell to plan out rest days before stepping out and days after the day-out to rest in order to gain some strength.
And then to be said “But hey! You don’t look sick” almost implies they’re faking it.
Many with invisible chronic conditions hate this statement or any variation of it.
I’ve had people look at me and say “Oh, you look fine to me” – almost a tone of disappointment and a tone of “what is she fussing about, she isn’t sick!”
Not a good feeling so it goes back to being trusting, respectful and being understanding.
11. Don’t Encourage A Patient to Push Themselves
You’re not a sports coach that you need to push the patient. You’re a carer, a loved one – you need to encourage but you also need to watch when your encouragement almost looks as if you’re pushing it.
This could trigger further unnecessary flare-ups leading to more rest than usual or even damage too.
12. Don’t Compare
Do not compare the one you’re caring for with someone who has the same condition.
Every patient is unique. Everyone is dealing with a different combination of symptoms and a mixture of different conditions.
For example, if you see someone running who has hypermobile Ehlers-Danlos and the person you know is using walking sticks – don’t say “that person has EDS and is running, why can’t you?!”. The person running could be affected by EDS in their arms or shoulder allowing them to go for a run.
It’s unfair to compare like this.
Therefore, as said at the start of this list – please educate yourself on the condition rather than making someone feel like you don’t trust them.
13. Observe & Allow Independence
It’s always beneficial to just observe the patient. You will learn so much about what their patterns are, what movements etc. trouble them and what they’re okay doing.
Also allowing the patient to work through some movement or pain on their own helps them to remain independent.
If you’re always around helping them every step of the way, it makes them more co-dependent than they may need to be – this of course varies for all patients.
Sometimes all a patient needs is that they have company – to have someone around – they don’t need to be molly-coddled every moment.
14. Release the Feeling of Helplessness
I can understand the feeling of helplessness and guilt. When you want to do so much, you want your loved one to feel better and be healthy again and you can’t make that happen.
There will be times when you will see the patient suffer, cry, scream, breakdown, collapse, and so much more. It will hurt and break you. It’ll make you wish you could do more but that’s where you need to reconcile with the fact that you are doing what you can.
The fact that you are there takes courage and that in itself is all that a patient needs – to feel supported. Thank you to all of you who do that.
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Tips for Chronic Illness Patients for their Relationships
1. Be Open to Explaining
It’s very difficult for those who care to see their loved one suffering. There’s already so much helplessness there.
This is where the patient needs to be open to explaining what they’re feeling or what they felt through a flare-up.
If you don’t explain it, they won’t know.
Explain in your own words what your condition is and which symptoms of that condition you face….and… very importantly, how they should handle a flareup situation. This then arms them with the right information relating specifically to you.
What they read on the condition and what you tell them is all they have to go by so be open to explaining – it’ll help you in the long run and create less panicky situations.
2. Plan Your Day
Planning your day allows you to pace yourself and keeps you more honest in your relationships.
Over-commitment will mean cancelling on those you care about.
Instead, understand your condition, your body and plan better. Even then, if you do cancel, don’t be harsh on yourself – trust that the person on the other end will understand.
3. Be Truthful if You Cannot Manage
This relates to being well planned but sometimes, somedays you may face a sudden flareup or you’re just not feeling up to doing a certain activity – be truthful about it.
Don’t push yourself because you don’t want to upset someone’s plans. This could aggravate things further and set you back further then you may realise at the time.
4. Explain What You Would Like to Do
In order for any relationship to succeed you need to enjoy each other’s company but when you’re unwell what you may wish to do may not match what you can do, which is why it is important you explain this.
Your likes may have changed based on your strength. Share these changes with the loved one – it’ll help build a stronger bond.
5. Understand that You Carer/Family/Friend Has a Life too
Your carer, family, friend – whoever it is that is there for you is also a human being that has a life. They have work, friends, likes, dislikes and their own life issues.
Be open to allowing them that space – be respectful of it and even be open to hearing about their life and what aspirations they have without making them feel guilty that you may not be able to achieve such high aspirations for yourself.
Put aside your illness and be an ear for this amazing family/friend who is there for you.
6. Be Kind, Be Loving, Be Respectful
Taking it further from being an ear…
It is very easy and normal to feel bitterness and anger towards life in general or towards anyone who is able to go about their life without being so unwell (it’s even worse when they complain about petty things – but that’s for another time).
This is the hand you were dealt with so rather than harbouring more bitterness than love, you are creating negativity not just within you but in your relationships too.
And so, be kind, be loving, be respectful – it goes a long way in retaining some peace of mind.
7. Be Forgiving
If your loved one messes up because what they thought would help you doesn’t end up doing so – it’s best to brush it off.
They’re probably feeling guilty any way and so if it’s a situation you can make light of then do that, if you can add humour and laugh it off, then even better.
But remember, if the person cares then they didn’t mean to hurt you deliberately – be mindful of that intention and let it go.
8. Everyone Has a Different Role
Not everyone can be okay when they see blood, or see you scream or cry – but they can be the one to make you laugh or have endless conversations with.
Every loved one has a different personality, a different role to play towards keeping you sane.
Don’t compare people and don’t expect everyone to be the same.
Accept each loved one who supports you as they are. Allow them to be themselves.
Normalcy helps.
That’s it from my list – if I think of anything more, I will add, but I hope you see a pattern here – communication is key – whether you are the one who is unwell or the carer/family/friend. Be real, be communicative, be honest.
That’s what helps relationships remain loving especially when you’re handling the never ending challenges of chronic illnesses.
If you have made it this far then thank you for reading. If you have any tips of your own, please do write them in the comments below.
Oh and if you’re a social media person, then you can follow me on Instagram, Twitter, Facebook, Pinterest or YouTube.
Have a good day …or night 🙂
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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 think trust is so important, both ways. The person who does have chronic conditions has to trust themselves, and trust the other person, and the other person has to trust you. It’s about being able to be open, honest, listened to and understood.
I aways have to remember my bf takes on a lot more of the household than he usually would. And I remind myself to thank him for everything he does and appreciate him. He works hard and that is a lot to take on because I can’t
Shruti – this is all so very important! Thank you for sharing your story – I’m so glad that your family was supportive too. I’m sure it’s so much harder when the family just doesn’t get it!
My partner and I kind of take turns being the one in greater need of support. I’ve had FND for years before we met, but he’s been through a TBI and then more recently he broke his acetabulum(hip socket). These experiences helped him more deeply understand what I’d meant when I would let him know that I was done for the day, and he has a much deeper understanding of spoon theory now! We work now on managing one another’s weaknesses and communicating clearly on what we can and can’t do on a particular day or week. It isn’t easy, but the guidelines you laid out are part of it. In fact, he’s why I started blogging in the first place! He was so impressed with how I dealt with his insurance and with getting him the right appointments and getting him in quickly that he pointed out what a skill it was- so I took him at his word and started the blog! Being accepting, listening carefully and learning both how the condition works and how THAT PERSON’s symptoms work are all vital. They help you understand the day to day and have a glimpse into what the future may hold and all of that together is so very vital for being able to plan ahead and maintain hope for the future!