Dear Grace Q & A: How Do I Explain That My Chronic Illness & Life Aren’t a Tragedy?

Hot air ballon with text: Q & A: How Do I Explain That My Chronic Illness & Life Aren’t a Tragedy?“What is a simple way of explaining the concept of living well with chronic illness to other people? People without chronic illness seem to find it difficult to understand that I don’t view my life as an awful tragedy…and it takes a long time explaining why I don’t feel that way.”

Let’s begin by considering your audience. It helps to meet people where they are because its easier for them and our results will likely be more successful too. 

Consider the potential mindset of the person you are wanting to understand this. It’s harder to make ourselves clear to someone if we are focused only on what we want to put across not how to best create understanding in our listener.

The first question then, is why are they struggling so much with this concept? And how can we make it accessible for them?

Although we can’t know what our listener is thinking and feeling, there are some feelings which are very likely:

Fear: speaking about chronic illness can be very scary. For people who don’t have chronic illness or haven’t come across it much before, the conversation can be terrifying. It can bring up previously-dismissed and suppressed thoughts around mortality, the fragility of the human body, its fallibility and very human-ness. If a person is wrapped in in their fears, in the grip of them, it may be nearly impossible to understand how anyone can live well with something they can barely acknowledge.

Fear may also come up around inadequacy. If the person you are speaking to isn’t happy with their own life, isn’t living well without chronic illness, then they may struggle with the concept that you are living well, and with a huge challenge. Maybe they’ve drifted off into comparison. Perhaps they don’t believe you, because they can’t comprehend how it’s possible. It could be that they are subconsciously invested in you being ‘unwell’ because that’s the status quo and like many people, they resist change. Or if you make positive changes in your life then it challenges them to consider and reflect on their own life – and if thats uncomfortable there’s going to be resistance there.

An acute pain mindset: if there’s been a time in your life when you didn’t have chronic pain perhaps you can remember how it felt to have a sudden acute pain/illness? Like a toothache – it felt like the only pain in the world and you couldn’t imagine surviving it. Or when you had a cold or a virus and it felt like you’d never live through it. For many people without a chronic condition, the experience of acute pain is their only reference point. They’ve never had to live with pain long enough to learn how to manage it, work with it, breathe through it, move around it. So they may be imagining that every day of your life you are feeling like them when they first have a cold and feel like the world is ending. From this point of view it’s easier to see why they may think living well with pain is impossible. It’s been impossible for them, and that’s as far as their experience goes. They may then be projecting that experience with pain on to you.

So, bearing in mind the audience, how do we actually explain? I’ve got some tips:

Attitude: focus on your attitude not your audiences’ response. You are sharing about your life and do not need their permission for your experience.

In my experience, people tend to meet us where we are, so if we are very positive and pragmatic about a situation most people will take their cues from us. If you approach from a defensive or apologetic perspective there’s likely to be confusion. However, bearing in mind the fear and acute pain perspective your listener may have, if you state clearly your experience and anticipate being understood, it’s much more likely to happen that way. 

It’s the difference between:

A.  A defensive explanation

Friend [in quiet, death-bed tones]: “So, Graaaaaaace (sympathetic pause), how ARE you?”

Grace [through gritted teeth]: “I’m fine, ok? Well, I’m not fine as you know but I have to live with this. So my life isn’t going to revolve around it the whole time. I do have a life outside of illness you know.”

Friend [puzzled]: “But I thought you were too ill to work/walk/go out?”

Grace: “Yes, but that doesn’t mean I can’t do things at home”

Friend: “Oh, it’s good that you are keeping yourself busy, don’t mope!”

Not a good interaction for either, as I’m sure you can tell. If I move from the perspective described above, however, look how it can shift:

B. An Attitude Led Explanation 

Friend [in quiet, death-bed tones]: “So, Graaaaaaace (sympathetic pause), how ARE you?”

Grace [cheerfully]: “I’m having a super day today thank you. It’s lovely to talk to you, I wrote some letters this morning, I’m looking forward to going swimming tomorrow and the sun is shining! How are things with you? How is your work/cat/partner/budgerigar?

Friend: “Oh, work is so boring, I hate it. And I’m ok. I didn’t know you could swim, are you getting better then?”

Grace: “I don’t really think about chronic illness in terms of getting better or not, more about where I am and what’s happening for me today. And yes, I learned to swim as a child, it’s great fun and the water supports and aids movement. Tell me more about work, what’s getting you down?”

Which conversation would you prefer to have?

Clear: make your explanation succinct, clear and repeatable. For a full script, check out Pitch Perfect What’s Wrong with You. It guides you through writing a ‘pitch’ and a positive introduction about you and the illnesses you are living with, crafting explanations and dealing with common questions and misconceptions about diagnosis and living with illness.

Cues: its helpful to give your audience cues. Give them verbal direction. So for example, you could say something like: “I have a new diagnosis but I’m feeling very vulnerable about it so I need to keep the conversation positive right now.” Let them know how you’d like them to respond to this. 

If they don’t and get caught up in fears and spiralling thoughts you could say something like, “This conversation is feeling a little low to me, let’s change the subject to something brighter, what are you doing this weekend?”

Show don’t tell: address the question through the way you live. If you are saying that you are living well, but moaning, complaining, always talking about what you can’t do, saying no to everything and never making any accessible suggestions then people probably will ignore all explanations and see your life as sad. If you are ill, but you are living, doing what you want, and sharing about your exploring, challenges and life, people will see your life as the adventure it is.

Let them think it: can you try allowing people their misconceptions? We can’t control what people think of us, and if they have misconceptions,  unfair, untrue and frustrating as they are, they aren’t something we have control over. In fact, they aren’t really our business and they say more about the person holding them than they ever do about us. Maybe you can choose to seek out people who do appreciate the life you are living, or perhaps the people in your life who don’t understand now will grow to understand as they witness you living well with illness.

What’s your experience in explaining living well? Any tips to share in the comments? For anyone who doesn’t have chronic illness/chronic pain, please share your point of view, pointers, and/or questions etc., you have coming from a different perspective. 

And if you have any questions you’d like me to answer here, share them in the comments!