#11 How to support someone with a chronic illness

Practical tips for family and friends who have a loved one with a chronic illness...

When I was first diagnosed with ankylosing spondylitis, I had no idea how to help myself, let alone how to ask for support from those around me. I was confused, scared, fatigued. I also noticed how differently those around me reacted to my diagnosis. Some went into complete denial mode saying things like ‘Ah well, it could be worse, you’ll be cured when you start medication’. Others went the toxic positivity route with comments such as ‘You just need to do yoga, try such and such diet and to think positive thoughts and you’ll be ok’. Some people just stopped talking to me altogether which was the most difficult to deal with. They knew I couldn’t be the person I used to be and they bailed. It was not only my emotions I had to deal with, but other peoples too. It was (and still is) a confusing time. I found out quite quickly the people who genuinely cared and wanted to find out how to help me, and those that just wanted to pretend it wasn’t happening. But even then, the people that wanted to help, didn’t always know the best way to do that and that’s where the following suggestions may come in useful. If you find these suggestions helpful, you may want to share the article with your loved ones. I’ve left a share button below just in case…

Now of course this is a very subjective topic. What I may find helpful may be completely different to what you find helpful. But I thought it might be a useful place to start. At least get the conversation rolling, and you can add your own ones in too. Also, we humans are fickle creatures, what I find helpful now might not be the best thing for me later down the road, so that’s why it’s good to reassess and check in with yourself and those around you regularly. See what works, what doesn’t, and adapt accordingly.

How to support someone with a chronic illness

Let them feel what they feel

I’ve learnt over the years that many people are scared of big emotions. When my mum passed away when I was 12, I quickly learned that many people couldn’t handle the real answer to the question ‘Are you ok?’. People don’t always know what to do with someone who is experiencing grief, depression, anxiety, a big life shift. They get uncomfortable, scared, overwhelmed. I’ve found that again when I was diagnosed with this illness. When people asked me ‘How are you?’, a lot of people didn’t know what to say when I answered truthfully. So I learned to say ‘I’m fine’ even when I felt bloody awful inside. Over time, bottling up all those strong emotions did not feel good and were causing a lot of harm.

When I first started therapy the simple question of ‘how are you’ really threw me off. I was so used to saying ‘I’m fine’ to everyone, that it was almost a reflex with my own therapist to say I’m fine, even though she knew damn well I wasn’t fine because that was why I was speaking to her in the first place. So she started to say ‘But how are you really?’. It’s kind of like a signal that says ‘you don’t need to pretend with me’, ‘It’s a safe space to talk’, ‘You can trust me to listen to you’. So only say this if you are really willing to listen and hold space for some deeper feelings. But if you want to really understand what a loved one is feeling and going through, throw that question into conversation once in a while. I bet you will see the sheer relief come over their face when they finally feel safe to let it all out. Let them cry. Let them feel angry. Let them vent.

I’ve also come to accept over the years that there are some people in my life who just can’t hold that space for me. I don’t hold it against them. I know that they have a lot on their own plates, or perhaps they haven’t been given the tools to have those kinds of conversations, or they are just protecting their own boundaries and know they are unable to take on the load of other people’s feelings right now. I get it. But if you know you can be that emotional support for someone, even with big scary emotions, please let them know. Ask them, but how are you really? And then listen for as long as they need it. You don’t always need to problem solve or have a logical solution to their issue, you just need to listen. Hold a hand. Give a hug. Just be there.

Do your own research about the illness

I recently had a message from a lovely subscriber who said she was reading these posts to understand more about what her own daughter was going through being diagnosed with another type of rare autoimmune disease. It made me teary with joy because here was a mother trying to understand her daughter. She was showing up for her in the way that she could and in a way that would be useful to her daughter. I would/am so happy when my friends and family do something similar. They read up about the condition to understand what I’m going through. Sometimes people ask questions about my disease and most of the time I’m happy to answer them because it means they have showed an interest, but sometimes I’m too tired to answer all the questions, or I just want to pretend that I’m a normal human being and have normal human being conversations. So on those days, I say ‘here’s a really great website’ or ‘Here’s a blog to read’ (wink wink). So if you are a family or friend of someone with AS reading this, you could ask them ‘I would love to understand your condition more so I know how to support you better, do you have a recommendation of a good website so I can do my own reading/research?’. Or you could do some of your own research online. The NASS charity website is full of really useful information and a great place to start. Or perhaps read a book like ‘The invisible kingdom’ by Meghan O’Rourke, which is a beautifully written memoir of a lady who is trying to get a diagnosis of her mysterious chronic illness. It gives an insight into how isolating, frustrating and heart-breaking it can be living with a chronic illness. It may help give an insight into the lives of people who are having to deal with this day in, day out.

Be accommodating/flexible

Trust me. We hate cancelling plans last minute just as much as you. It’s annoying, I know. It’s also annoying to let people down. Just know that we wouldn’t do it unless we really had to. We’re not trying to disrespect you or waste your time, we are just ill and trying to do our best. Energy and pain levels can fluctuate so quickly so we really may not know until the last minute. So please don’t make it a big deal. Just say, I totally understand. Rest up. We can rearrange for when you’re feeling better. If you need anything, just let me know etc etc. Or maybe even suggest something like ‘I can come to you instead if you’re up for it, and we can just sit and hang out watching a movie if you have the energy. It would be nice to see you. I can bring some snacks’.  But don’t get upset if they don’t want to, they may just want to sleep and rest by themselves, but it’s still nice to be asked and have some different options. Also, even if they do say no to 9 out of 10 requests to hang out, please do keep asking to make that person feel included. Don’t give up on them.

Offer reassurance

In the past my friends have said, you know, you could just come over and lay on the sofa and not even say anything and we would still be happy to see you. I almost cried. When you have a chronic illness, it often comes with anxiety and depression, which can totally warp your sense of reality. For some reason, my default setting is ‘everyone hates you’. I know this isn’t logically true because they wouldn’t still be my friends after all these years if they hated me. So sometimes, just telling that person, I love you no matter what, really means a lot. Sometimes we just need some reassurance that you still like us even though were all sickly.

Accepting the situation

Not trying to ‘cure us’. Having a chronic illness means that we will have to deal with the illness for life. There’s no point in denying this fact. There’s no point in down playing the persons symptoms either with comments such as ‘everyone gets tired, just get over it’, ‘just push through it’ , ‘you just have to think more positively’ ‘so and so changed their diet and cured their illness’ bla bla. Sometimes it comes from a good place trying to give advice but other times it can come across as patronising or like your blaming the person for getting sick in the first place. Also denying the person is ill doesn’t help. I have someone in my life who literally changes the topic every time I even slightly mention my illness. I’m not sure if it’s denial, fear, or just not caring. But it hurts. It’s like they are denying a whole part of me. I feel like I can’t be honest with how I’m feeling. Now I don’t say much at all to that person about it, to protect myself, but it’s sad that I have to do that and to accept I will only have a rather superficial relationship with them.  

Believe them

Please believe the person if they say they are too tired or too in pain to do something. Try not to get angry or frustrated with them, they really are trying their best. Show some empathy and compassion. They may be able to do something one day and not do it another day or even later that same day. It doesn’t mean they were lying before. Having a dynamic disability means that the person will have periods of remission and periods of exacerbation. This can be difficult to get your head around, trust me. One minute I can be fine walking along and then next my ankle is stiff and I can’t move it or my hip has completely given way. Sometimes there is no rhyme or reason to it, all you can do is try to adapt to each individual situation as it comes up. It can be very exhausting having to keep explaining and justifying yourself on why you need to do something. If you’re loved one says they need to rest, please let them without making them feel bad about it.

Be a cheerleader

I know it may look to others how we are always sick and always tired and some people may interpret this as being ‘weaker’ than normal folks. But I can ensure you, that someone with a chronic illness actually has the heart of a gladiator. I understand why they call this group warriors now. To face each day even when you feel like crap, day in, day out, believe me you need so much inner strength. So maybe once in a while say to your loved one ‘I’m proud of you’ ‘You are so strong’ or ‘I’m so impressed how you’ve got through this with such dignity and courage’. Hearing that would mean the world to them. My husband and my Auntie are huge cheerleaders of mine and I’m so thankful. They recognise that not all strength looks like big muscles or courageous acts. Some strength is inside and hidden behind closed doors.

Check in

I also really appreciate it when my friends and family ‘check in’ with me. I may not always have the strength and energy to reply to even a simple text message some days. But a message of ‘I’m thinking of you’ or what my Auntie does, send a picture of a nice flower or cute dog she’s seen that day on her walk. It makes me feel like I’m still a part of people’s lives even when I’m just stuck in bed for weeks on end. I recently read a book about a lady with a chronic illness, and she said that when she was too ill to get out of bed for weeks, her friends would take it in turns to sit by her bed with her. She didn’t have the energy to talk, but they would sit there and read a book or do some knitting by her bedside. She said it was so healing knowing that someone was there to keep an eye on her. It made her feel loved and safe. Just knowing that someone is close by but doesn’t expect anything from you, I find that such a great display of love and kindness.

You can also follow them along on their chronic illness journey by asking them how their latest hospital appointment went, or how that new medication is getting on, or how physiotherapy is. Knowing that someone remembers these little details really means a lot.  

My Auntie sent me a little care bear through the post when I first got diagnosed, which meant so much <3 I now take him to each hospital appointment to make me feel less worried.

Acts of kindness & service

If you know that someone you love is having a flare up, they may not even have the strength to think about what they actually need from you as support. I know that sounds daft, but when you are so fatigued, even thinking about the tinniest thing is so draining. So maybe just doing a food shop for them, or dropping over some meals they can heat up, or cutting the grass for them. Something which you know needs doing and just doing it. I find that such a loving and selfless thing.

Maybe you’re not great at the listening/talking about feelings part of it, but you’re more than willing to help with practical stuff, like being there to give a lift to hospital appointments, walking the dog, watering the plants, picking up the food shop, babysitting the kids so they can have a break. The list is endless. I guess it’s just knowing your friend or family member well enough to know what is best for them in that situation.

Clear communication

And it’s not all about me. I get that. I know that others have a lot going on, children to raise, busy jobs, their own health issues etc. So it’s also being honest with them about how you can show up for them too. It may not be in the way they are used to, your role within your group may change and you may have to let them know this. Some people won’t like it, but that’s ok. Sometimes relationships have a best before date. You may need to start putting certain boundaries in place. For example, I can show up to this event with you, but only for an hour. Or I can go for a walk with you, but I will need to rest after 15 minutes. I would love to go out to a restaurant with you, but can we pick somewhere with good gluten free options too? Etc. Just make sure you’re clear, and most of the time people are understanding and willing to compromise.

The main point here I think is that we need good communication with those around us. We need to be clear and honest with how we are feeling and what we need from them. The more open and honest we are, the less room for mistakes and confusion to fester. Which is true for every relationship really, not just in the context of chronic illness.

Ask them

And of course, the most obvious one of all. Simply asking the person ‘How can I best support you?’.  

Maybe you could even mention this blog. It could be a great segue into a conversation about what someone may need and how best to support them. Or maybe you are the one suffering with little support from friends and family and you can send them this blog with a big hint hint attached!!! Either way, it might start the conversation.

Give yourself permission to rest

I must also mention, that supporting a loved one with a chronic illness, or being someone’s carer can be very challenging. You can’t give from an empty cup as they say. Being diagnosed with a chronic illness has been incredibly difficult for me, but it has also been hard on my husband. He has had to do a lot and I must remember he also needs his time to rest and recuperate. It’s important to carve out time for yourself and for you to seek support also where you can.

It's also important to allow time to just be their partner/sister/mum (whatever the relationship is) and not just in carer/support mode. You need to nurture your relationship outside of the illness or it could potentially lead to burnout or compassion fatigue. Set time aside to have some fun or talk about ‘normal things’.

What about you?

Have I missed anything off? What do you wish friends and family would say to you or do for you? Have your loved ones been supportive? If you are reading this from the perspective of having someone in your life with a chronic illness, I hope you found this helpful? Do you need me to elaborate on anything? I’m open to questions. Is there anything else you would add? I would love to hear in the comments below.

I hope this has been helpful. Have a lovely week.

As always, sending you all healing thoughts.

Lots of Love & hugs,

Amanda x