*Note from A Chronic Voice: Angela and I met at a party through our ex-boyfriends (talk about how life goes 😉 ), and I never knew that she suffered from chronic illness too. She was living overseas – which can be especially tough for a spoonie! – and seemed so outgoing.
After I started this blog, I discovered that she and a few of my other friends and ex-colleagues suffered from chronic pain too. We had all managed to conceal our conditions so well, that we couldn’t even identify ourselves amongst other spoonies! This just goes to show how invisible pain truly can be, and that you never know how much stress a person is really enduring. It’s also a reminder that I need to pay closer attention to my loved ones, as distress isn’t always loud and clear.
Angela suffers from precancerous endometriosis, yet lives an active life whenever she gets the chance. She believes in living life to the fullest and started “Pod Of Life” on Facebook, which promotes and trains people on resilience. In this article she shares about her 3Rs perspective to resilience in relation to living with chronic pain. I really like her definition of the word, and am adding it to my coping toolkit for both the good and bad days. Learn more about it here:
Table of Contents
What ‘Resilience’ Means to Me as a Spoonie
Last year, Sheryl asked me to write about what resilience means in regards to my chronic illness, because it’s one of my key strengths, a topic that I’m passionate about, and I’m also a resilience trainer. I sat on it for a long time because it has been very hard to talk about my illness. I have precancerous endometriosis, and not many people know what that is. Those who have it suffer in different shapes and forms.
How My Pain Manifests Itself
Mine comes with regular pain and inflammation that I have to manage. I often get low blood pressure and dizzy spells. After two surgeries and an HRT (Hormone Replacement Therapy) which messed up my hormones for over a year, the doctor told me that we have yet to make any progress. The growth is in a position that’s hard to operate on, so it can’t be totally removed even if we were to have another surgery done. So all I can do for now is to live with and manage it, until new solutions come along. Just like everyone else with a chronic condition.
Adding Dimensions to My Definition of ‘Resilience’
I thought long and hard about what ‘resilience’ means to me. The most common understanding of ‘resilience’ is to ‘bounce back from setbacks’. I am not quite satisfied with this definition because for someone with chronic conditions, it feels like we are constantly on the bounce and that’s exhausting! So I developed my own definition to resilience and use it in my training. My 3Rs to ‘Resilience’ are:
1. Regenerate when faced with setbacks.
2. Stay Robust on challenging days.
3. Radiate on the good days.
Resilience Exists in Every Stage of Life
I see resilience everywhere within the varying states of our wellbeing, as there are fluctuations when it comes to chronic illness. Some days are good, some are bad, and yet others are better than the rest. We need time out to regenerate on the bad days. We need to try and stay robust on the challenging ones (and it’s okay if we fail, because we just return to a state of regeneration). And on the good days, that’s when we’re able to radiate and extend ourselves fully into life.
I like my 3Rs definition better because as long as I am breathing, living and trying, that is resilience! I don’t beat myself up too much when the conditions are less favourable. I am a person who loves life – I like to stay active and travel. It frustrates me when the bad days hit. I’m not only rolling around in pain while under heavy sedation, but I lose time to the things that I had wanted to do.
It Hurts More When Others Don’t Understand
When people do not understand the state that I’m in, it makes me feel even worse during a flare. So whenever I’m in such a state, I accept it and know that it’s only temporary. It will pass and I will regenerate. I allow myself to rest and retreat, and surround myself with comforting and supportive resources. These all help me to regenerate even better.
How I Maintain Robustness, and Radiate on the Good Days
When I’m feeling really well, I radiate and extend myself. I do all the things that I love to do, from volunteer work, to diving and travelling. I push myself because such occasions are precious (read my article on “The Chronically Time Lagged” here). As my condition is unpredictable, I have to ensure that I stay robust on my trips and during important work periods.
I worked with my doctor to develop a pain management plan that’s suitable for me. I was once adverse to using painkillers, and was so stubborn that I’d only take them when the pain was killing me. These days however, I listen to my doctor and take them before the pain hits in full force. Thus I’m better able to manage my downtime, and even reduce them sometimes.
Being Aware of My Current State, so That I Can Choose the Best Strategy
For those who are chronically ill, I see that we are also chronically resilient. I don’t just say ‘again?’ when stuck in a low moment in time. I look at the state that I’m in, and decide on which strategy to apply: to regenerate, to stay robust, or to radiate. Sometimes it takes longer to regenerate and that’s okay, too. We must keep trying and retain hope. That in itself is resilience, too.
Read More from Angela: 7 Proven Strategies to Stay Resilient No Matter What Happens (from A to G)
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For More Insight:
- 25 Resilience Quotes to Fuel Your Courage to Continue (aimhappy.com): http://bit.ly/2I836km
- I Keep Going – Developing Resilience Through Chronic Illness (trippingthroughtreacle.com): http://bit.ly/2yxwGs8
Yes, each day, get up again. New start. Chronically resilient. One of the things I hope that my granddaughter notices about me and takes for herself. Life is tough, even without chronic illness; chronic resiliency is what is needed for all walks.
THat’s a lovely lesson to impart to her. A very important one. And definitely best learned by example. What a wonderful grandmother you are 🙂 Sending hugs to both you and her.
Spoonies not recognising each other?! Why am I not surprised. Just before reading this piece I was talking to my mum about how well we conceal our health issues – not like we do it deliberately, but you just need to get on with life and make it as rich, wholesome and satisfying as possible while pushing the boundaries with your health at times because that can be a requirement for certain situations. And I guess that makes us all chronically resilient 🙂
I think it does happen more than we think! I mean even within our little CISP admin chat group, sometimes I can’t even tell you ladies are having a horrible day until you mention it. It can be really difficult to tell and a good idea to always check in with each other 🙂
Brilliant!!! This post really resonates with me right now. My sons head of year on many occasions has stood at the front of the hall and talked about this very topic. Resilience – How children of today should turn up to school no matter how they may be feeling as it is a sign of resilience, a quality that they as a school will be proud of. I disagree with him on so many levels… the biggest being that there may be many kids in school with a low immune system and encouraging sick kids to school to prove they are resilient may make others poorly for a long time. Also, there are also chronically ill kids like my son who is one of the most resilient people I know. He may not fit the schools tick box definition but he inspires me everyday and he hasn’t made it to school for nearly a year and a half!! Sarah x
Hi Sarah, I’m glad this post spoke to you, I’ll let Angela know! 🙂 I too find it a really good perspective. Like she says, bouncing back is a bit of a different ball game for spoonies, when all we do is bounce continuously! I know you’ll do what’s best for you and your family xxx
I really needed this!! I’ve always thought of myself as pretty resilient but lately I haven’t felt that way. I’m currently taking time off work to manage my psoriatic arthritis and sometimes struggle to recover. Thanks for sharing this timely message!!
I just subscribed to your blog!
Most welcome, Julie. It was written by the talented and inspiring Angela 🙂 It certainly is useful article chock full of great tips on resilience. Hope it helps with whatever you’re going through always x