Episode 89 – The do’s and don’ts to support someone with a chronic illness

Hello loves,

I talk a lot about life with a chronic illness, and for this episode I want to share for those who support us, and are not always sure what to say or do.

For us, life with a chronic illness can feel so isolating. Regardless of the illness diagnosed with so much of life can feel stolen from us. Your control, how you thought life would look, trust in your body.

It’s why I often talk about grief. I know I’ve been talking a lot more recently around the baby grief, but there are many similarities between the baby grief and the grief I went through after my chronic illness diagnosis.

It seems so easy for people to sit with our pain of grief with the loss of a loved one, even though sometimes people still manage to say the wrong thing, the loss experienced when diagnosed with an illness is often invalidated, making us feel even more isolated and alone as we either cannot find the words to express ourselves or others find it very difficult to understand how life is different now. Especially when you still look the same on the outside. We often decide that we’re better off not discussing it with anyone.

It’s not just one life that changes.

There’s a myriad of issues for everyone to deal with on diagnosis of a chronic illness. It’s not just the symptoms, the pain, the shortness of breath even though you’re only sitting on a sofa, the needing help from others, or the incessant hospital appointments, but the thoughts and emotions around acceptance and adjusting to life being different now.
So, if you do have someone in your life that needs your support, here’s my do’s and don’ts for navigating what can be a very difficult time.

Do say “I’m here for you”

And mean it. I honestly cannot tell you how much it means. There’s so much unknown in a diagnosis, so to know that some things are still a constant, in friendship, can be very reassuring. A simple statement of I’m thinking of you, as a check in without expectation,

Don’t use platitudes

When you tell someone how strong they are, and that they’ll get through it, or the quite dismissive “I don’t know how you do it”, often minimise how someone is feeling when it’s not as if they had any other choice, and it closes the door on the person feeling that they’re able to open up and be vulnerable.

Do show up

It’s more about what you do, and how often, than what you say. I had friends send me food parcels, send cute little cat memes, or sit and watch a film with me that I invariably ended up sleeping through. All things that needed very little from me.

Don’t use phrases like “At least”

The phrase that reminds us and compares us to other people being worse off, and makes assumptions. Yes, in some ways other people do have it worse. But don’t assume you know the ins and outs of someone’s journey. You don’t know how hard anything is for anyone else. Don’t downplay hardship you haven’t been through.

Do follow their lead on language

Take your verbal cues from them. Listen to how someone describes their own experience of their illness. It can sometimes feel quite overwhelming, so we often use language as a way to detach from what we’re going through. Mirroring their language can help with connection.

Do encourage them

I lost track of how many times people told me I couldn’t or shouldn’t do something now that I’m sick. Honestly I didn’t need to be wrapped up in cotton wool, I needed to be treated as the same woman in that I still have the same hopes and dreams, only that I needed to find a new way of doing something.

I really hope you have found this episode helpful. If you liked what you heard and want to hear or read more, head over to lifeinalign.com. Please also subscribe and share, so that we can get this out to others who are also wanting to take back the life a chronic illness stole from them.

And remember – you are worth it, and you get to choose.

Have a lovely day.