How to care for your loved ones when they are sick or have a chronic health condition

I’m surprised to be writing this blog. It seems to me that it would be a fundamental part of being human and loving others, that we would support those we care about whilst they are sick. But it seems there is a lot of truth to the saying

Laugh and the whole world laughs with you, cry and you cry alone

Its our partners and closest family that we lean on most when things go belly up. But what if we’re single, live abroad from our family or they simple aren’t around?

I’ve lived a very independent life. Without going into any detail and dragging my dirty laundry out for a public drying, lets just say I left home way too young and have taken care of myself ever since. Whilst it’s been a lifelong expectation that I would meet my soulmate and that he would take up position beside me as playmate-partner-friend-family-maker, this person who I hold space for in my heart has still not shown up. The one I gave this space to in love for the last year, didn’t even have the decency to discuss it with me before he disappeared like roadrunner from my life less than 2 weeks after I got sick. It is apparent that I am drawn to the charming and unavailable rather than those who are reliable and …kind.

Its a difficult thing to go through this alone. I think of the other women I’ve spoken to with labyrinthitus or other conditions, and they tell me that their partners drive them to appointments and do the shopping; how they have a good chuckle when she trips into the wall; or how he comforts her when she distresses about getting better. And I feel sorry for myself that I don’t have someone to share this journey with, to celebrate my achievements, to know what is going on for me or to worry with me when my hearing drops more.

I have plenty virtual support and spend hours texting, emailing, on forums and Facebook, but nothing replaces flesh and bone love and support. Someone to help me walk up the street, or take me places or to really know and care whats happening for me at any time.

and that’s why I’m surprised to be writing this, because I would have hoped there was no need to spell it out.

How to support someone who is ill from the perspective of the ill person

• Remember that we need you – Put your assumptions aside that our families are looking after us or that we need to be left undisturbed. Yes we may need a lot of rest but we also need to feel supported and cared for. We are vulnerable and unable to do everything we need to for ourselves. Some of us are alone all day. We are strong, but we do need you.

• Ask us what we would like or what we need – I’ve had many people offer to pick up stuff from the supermarket but I can get my shopping delivered online. What I’ve needed are the little day-to-day things like printing or phone-calls or help getting to appointments. Just to be taken out would be lovely as I’ve been in the house for 5 months. Don’t assume that we want to do the same things we used to. The last thing I want to do on my detox diet and with my profound hearing loss, is go to a restaurant or a box of chocolates. I need actual day-to-day support to integrate back into society – simple things like going for walks and slowly trying more demanding things like the shops, public transport, social situations would be helpful. Every person is going to need different things at different times. You can help us so much by simply asking how you can most help them.

• Understand what the illness is and how it affects us – take some time to try and understand what’s actually happening for us so you can empathise. For a few months more people around me probably thought I had an earache. That meant they weren’t there for me when I needed them most. We’re probably a bit tired of explaining it in detail to every person we meet. It is lovely when someone comes along who seems to have some understanding of what is wrong and how it must feel.

• Just Listen – You don’t need to have answers, you don’t need to make us feel better, you are not required to do anything. If you can accept this and stop worrying about not knowing what to do to make it better for us, then you will be able to just listen and be present.  Try to deal with your own discomfort about being around illness or upset and hear what we are going through. Consider for a moment what it might be like and empathise. This is all someone needs to feel like they aren’t going through it all alone. Just be present and listen.

• Compassion not sympathy – Please don’t pull faces and say ‘oh poor you’ for any longer than 5 seconds. We don’t want to feel more sorry for ourselves then we might already. There is a difference between a loved one being concerned and feeling compassion and care, and sympathy. Sympathy is too closely related to pity and is not going to make us feel better about our situation.

• Do you want to help or do you just like the idea of being a supportive person? – You’ve told us that we should feel free to call you if there is anything we need. What does that mean? Can we ask you for anything we actually need? Will you take me to hospital and wait for 5 hours with me? or do you mean you will pick up a few bits form the supermarket when you’re shopping? Tell us how you are willing to help so we know who we can turn to for what.

• Understand that the sick person is grieving – with any illness or disability comes the grief of all that has been lost. Remember that the sick person will be going through this grieving process. There may be all sorts of complex emotions coming up now and then. You can’t take this away from them or speed it up, just accompany them on their journey with understanding, patience and presence.

• Remember us – Life gets so busy. You’re juggling a million tasks every hour of your day. Just remember that your loved one is alone, probably bored and unable to do the things they’d like to. Send a message, keep in touch if you can’t visit. Every conversation or contact with the outside world helps improve their day and lets them know they are though off in their time of need.