Acceptance – Why it is so important when you have a chronic illness?
Acceptance in human psychology is a person’s agreement to the reality of a situation, to be able to recognise a process or condition (in this case a chronic illness or health condition) without attempting to change it or protest it. In simple terms getting your head around the cards that you have been dealt.
For many people who are dealing with a chronic illness the term acceptance can be tricky. If people are told by others to just accept their condition they can feel like they are being told to suck it up or to stop complaining. Which in fact if you think about it is the opposite of acceptance. These well wishers may be trying to help, but acceptance is a process that doesn’t just happen because someone suggests that it may be a good idea.
True acceptance involves, recognising your experience, accepting your reactions to it and working through them until you reach a point that you no longer want to fight or change the situation. It’s alright to be angry, sad, or hurt by that reality, but the goal is to acknowledge the fact that there are some parts of your situation that you cannot change.
Accepting your condition
For me acceptance has been a journey that I have walked for nearly 20 years. When I was first diagnosed with CMT my life was completely turned upside down. The young successful adult that I had fought to become was no more. I had a new baby, who I loved with all my heart, but my career was stolen by my dwindling mobility, I was struggling more than I ever had in my life.
I had two surgeries in quick succession and more planned. I was coming to terms with the fact that I had an incurable neuromuscular disease that was progressive with a 50% chance of passing it on to my child; coupled with the fact that the things that I had worked so hard for and that I felt defined my identity were being taken away from me.
A year or so down the line I thought that I had accepted this condition. What I could actually do was talk about the science behind it all with ease but I had not dealt with the emotions of it all and was still fighting myself to be an able bodied young woman and beating myself up about the career I didn’t have anymore.
It took two years, that and the third surgery to be successful for me to finally begin to come to terms with the diagnosis and accept what it meant for me, for my future and my now growing family.
Throughout this time I learnt to deal with the emotions that I felt, be it sadness, anger or anxiety by meeting them head on. In doing this I became more resilient and emotionally tough by allowing myself to feel what I was feeling helped me to move through it, and allowed me to turn my attention towards more meaningful things.
Accepting the implications for your future
Accepting the implications that my condition would have on my future was tough. I had it all planned out in my head – I had a first degree, had recently married the love of my life and we had brought out first home together, I was working hard in a job I loved and had been promoted. Along came our first child and I envisaged working hard and having long summers away as a family.
My body didn’t get the memo. As it slowly fell apart so did my hopes and dreams for the future. I was unable to work and I began to question everything – if I wasn’t a teacher? who was I?
What this actually gave me was a chance to step back and reflect on who I was and what I really wanted from my life. The inner work that is so important and often overlooked while we are pounding the treadmill, trying to have it all.
The nature of chronic illness is that it is ongoing, and in many cases degenerative or permanent. Which means that your health can change at any time. So the process of acceptance can change over time as new symptoms may present and conditions progress further. Being resilient helps you to cope with these unforeseen circumstances.
When I had further diagnoses’ of EDS and PoTS ten years after the first, it was evident at this point that I had done the work. The process of acceptance that I had gone through before was replaced this time by relief and self-compassion. I was able to bounce back from these circumstances but also had a positive outlook throughout. I had learnt not just to handle the situation but how to.
Accepting the limitations that are now placed on your life or relationship
One of the hardest things has been to accept that I can’t do everything, that I have to manage my chronic illness’ as if they were a full time job, in order to lead a more normal life. To know that this has to happen, to admit that some things are hard for me and to know that if I try to do everything I will become ill, have more pain or not function for days.
I am constantly walking tightrope, if I balance carefully I may reach the other side unharmed, rush, plan poorly and I will most likely topple and pay for it later.
So, I have learnt to balance my life, management is the only option there is no cure or magic pill for my conditions. For most long term conditions, even with medical treatments management is key to living well long term.
This has become so much easier for me as I have truly accepted my conditions and the impact that they have and will always have on my life. I recognised that I had little to no control over certain elements of my health made the decision to stop struggling against those. Validating, rather than minimising or rejecting my experience. I now honestly assess my condition, my options and my choices and place my time and energy on the things that I can control rather than those that I can not. And, I enjoy the freedom that comes from being in that position.
I slowly learnt that there is a time and a place to fight my illness but it is not 24 hours a day 7 days a week. Dropping the moment to moment struggle has been surprisingly freeing. I no longer fight constantly for it to be different, which has given me so much more energy to do the things that I love to do like meet friends for coffee or spend quality time with the kids.
I now make choices about my life rather than feeling like all the choices have been made for me.
Acceptance has given me back that control.
12 things that you can do today to help you to accept your chronic illness?
- Start where you are at right now – this is your journey.
- Accept that this is a process and due to the nature of chronic illness, (eg:- new symptoms or progression), the process of acceptance may change over time.
- Acknowledging that even though it’s not fair that you are ill, that it has happened, and you need to work with where you are. Deal with your emotions head on.
- Avoid focussing on the good old days all the time, past is past – stop obsessing over “what if’s” and accept that this is the reality and you need to move on from here.
- Accepting that some of your past goals or plans may no longer be realistic, and allowing yourself to mourn this loss.
- Stop searching for a cure if evidence suggests one does not exist, and focus on managing & controlling your symptoms.
- Denial will not make your illness go away – you can accept that you do need treatment if your disease calls for it.
- Accepting that no matter how well you stick to your treatment, you do not have full control over your condition.
- Learn to adapt to adapt to uncertainty – flexibility will be your friend – have a destination but know that there are many roads that may get you there.
- Know that you are more than your illness – make plans, have fun, don’t compare yourself to others or your past self, grow.
- Accept that you may never have a satisfying answer to why this happened.
- Live.
Eating an Apple Metaphor
Acceptance is like eating an apple.
You could be trying to lose a little weight or eat a little healthier, so instead of snacking on your usual slice of cake, you have an apple. You may “choose” an apple, but what will it be like to eat that apple? As you eat it, you start comparing it to the cake. With each bite, you’re thinking about how the apple isn’t as sweet, fudgy, and good as the slice of cake. Then, when you’re done, you eat the cake anyway.
Another way to experience eating the apple is to just let the apple be an apple, rather than needing or wanting it to be something it is not. Just notice the crispness of each bite, the juiciness, and the sweetness for what it is and not for what it isn’t, a slice of cake!
I believe that acceptance is the foundation for living well with a chronic illness, health condition or disability. And, by learning to just let the apple be the apple you will reach the stage in your chronic illness journey where you no longer want to fight or change the situation.
This gives you energy and choices to manage your symptoms more effectively, evaluate what you want in the world and learn how to communicate better with everyone around you. Acceptance is often the first step in this process, where you commit to yourself and truly acknowledge who you are.
Want to know more about acceptance and how I can support your journey to live chronically well >>lets talk
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Chronically Empowered Women is a community of women who have chronic illness.
You may feel like no-one understands what its like living with your chronic illness, that pain and fatigue are getting you down. That you are hanging on by a thread or the future may feel a little uncertain. In this community we get that.
You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life.
We will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!
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The 10 minute guide to understanding that self care is far more than having a bubble bath and lighting a scented candle. It covers why it is important to plan for self care if you have a chronic illness or are caring for someone who does and, a handy checklist to get you started with great self-care practices to support yous physical and mental health and that fit who you are!
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