Explaining Your Illness To Others | #SpoonieSpeak

Explaining your illness to others can be hard. The #SpoonieSpeak community came together to to share experiences and ideas on how, and what, we share about our conditions. The chat looked at different relationships, from complete strangers, to friends and family. We how that this highlights post is helpful if you’re struggling to know how to talk to people about your health conditions.

The ‘Explaining Your Illness To Others’ chat took place on 21st January, hosted by the @SpoonieSpeak twitter account.

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Q1. How do you find it best to explain your condition(s) to your loved ones?

Friends and family are the ones we turn to when things are difficult. Most of the time, they’re the ones who will support us and share details of our lives with. However, sharing information about chronic illnesses can be hard. We don’t want our loved ones to worry about us, but they also need to know our limitations and how best they can help us.

Q2. How do you find it best to explain your condition(s) to new doctors?

Knowing how to talk to doctors is an art form. Many of us find that doctors haven’t heard of our conditions or are sceptical about them and how they affect us. But there are doctors who will take the time to listen and understand. If they haven’t heard of a condition, they will listen to their patient and research the condition. It’s important for us as patients to be able to speak convincingly to our medical professionals so that we get the best care possible.

Q3. Do you find that people you don’t know, or don’t know well ask you about your condition(s)? How do you reply to them?

Before my EDS became visible through the use of mobility aids, I didn’t get many questions from strangers. The ones I did occurred when I was doing things like asking for a seat on public transport. Since becoming visibly disabled, I’ve been shocked at the number of complete strangers who ask me personal questions.

Q4. Is there anything about your condition(s) that you wish you could explain to someone, but can’t?

Sometimes there are things that we wish people knew but we just aren’t able to tell them. It may be that we don’t want them to worry. Or it may be that unless you have experienced it, you can’t fully understand what it’s like.