Updated: May 11
Living with a chronic condition can be devastating. As well as the physical pain, it can cause mental and emotional distress, affect relationships, career and every single aspect of life. That was definitely the case for me for many years. I felt I had been robbed of my childhood, career ambitions and overall hopes and dreams for a happy, fulfilled life. Over time, I began to lack the energy and motivation to get up in the morning, let alone do anything else.
The transformation I went through didn’t happen overnight; it was a challenging and emotional process, but it was definitely worth it.
At 33 years old I was finally diagnosed with hypermobile Ehlers Danlos Syndrome (hEDS) & Fibromyalgia. Since the age of 13, these conditions had gone undiagnosed and I’d been fobbed off and made to feel like a hypochondriac by several specialists. Then one day, I got to the ‘enough is enough’ stage and decided to take back control of my life.
By reflecting on the process I had gone through (with all it’s up and downs), I wanted to do something that could help others in a structured way, so I became a Chronic Illness Mindset Coach, focussing on supporting others to transform their mindset and reclaim their power.
The following was my process, which I've broken down into 6 steps.
Acknowledge – Step 1
In order to make long-lasting change in my life, I had to be honest about how living with pain affected my daily choices, anger, fear, lack of motivation, self-pity, reactions to things and people, relationships I chose – whether it be friendships, family or intimate – lack of confidence and hope for my future.
By acknowledging these things, I was able to identify the areas I wanted to work on. It also helped me to recognise strengths and weaknesses, as well as areas in which I was being too hard on myself in my quest to be perfect; a perfect mum, friend, daughter, sister, partner and to have – what society recognises as – a successful career, even if I didn’t enjoy it.
I began the process of reinventing myself. The ‘new and improved Cassandra’, leaving behind as much of the negative stuff I could that was hindering many aspects of my life, and creating a new way of thinking feeling and doing. Embracing the new me!
That didn’t mean I stopped having pain, discomfort, subluxations, chronic fatigue and all the rest of the horrible things I experience with hEDS and Fibromyalgia, it just meant that my perspective on how I would allow it to affect me mentally and emotionally would change.
Does any of this resonate with you?
Has a chronic condition taken over your life?
Have you reached your ‘enough is enough’ stage?
Acceptance – Step 2
Living with a chronic condition that can’t be cured can be extremely difficult to accept. Read about the second step I took in my process to reclaim my power, while living with chronic conditions hypermobile Ehlers Danlos Syndrome (hEDS) and Fibromyalgia for 30 years!
WHY SHOULD I ACCEPT BEING IN PAIN EVERY SINGLE DAY OF MY LIFE?!! I DON’T WANT TO ACCEPT IT; I JUST WANT IT TO GO AWAY!
That was me for quite a while.
Even though I’d learned some coping mechanisms for living with hEDS and Fibromyalgia over time, when I was finally diagnosed after 20 years I felt a sense of relief, but I was still not ready to ‘accept’ it. Why the hell should I?
Well, the energy it took NOT accepting it was only adding to the lack of energy I already had. It took energy to hide it from people, fight against it, complain about it, constantly think about it, be angry about it, feel sorry for myself etc…I was missing out on so much!
Constantly focusing on what I couldn’t do, rather than what I could wasn’t good for me mentally, emotionally or physically, so, I decided that – to the best of my ability – I would no longer allow these conditions to govern my life. I had to find a way to live rather than exist, in spite of them.
I had to be clear on exactly WHAT I needed to accept, WHY it was important and what could be POSSIBLE if I did.
When I started the acceptance process, I found that things seemed just a little bit easier. No, the pain and everything else didn’t go away, but the way I coped with it was better. I found myself being less hard on myself when I couldn’t do the housework – my home didn’t have to look like it wasn’t lived in anymore, it was ok if the washing up wasn’t done before I went to bed or if a friend came round and my son’s toys were laying around.
I started using special assistance at the airport, instead of struggling on my crutches while waiting in endless queues at customs or the often really long walk to the plane, which usually resulted in me being in agony on the flight and spoiling the first few days of, or my entire holiday.
I found myself exploring alternative career options by focusing on what skills I had or could attain and what I was passionate about, rather than the fact that the career I had in mind for myself was no longer possible.
Eventually, over time, I became less angry with myself and the world. When I had flare ups – although I still felt angry, frustrated and sorry for myself at times – the negative emotions and the actual flare ups were getting shorter.
When I was unable to do something, like take my son to streetdance, I beat myself up less and less and gradually starting learning to ask others for help. I’ve also accepted that it’s ok to admit that I’m not ok! It was a very gradual, challenging process to go through alone and there are still times when I struggle with the effects of living with chronic conditions – particularly when in a long, intense flare up or I get a brand new lovely symptom – but my life looks and feels so much better since I took the step of acceptance.
You can be fortunate in having support through your process. You don’t need to do it alone.
So, the question I’m putting to you is: what would your life look like if you accepted where you are at?
Remember: acceptance is not giving up, it’s moving forward the best way you can!
Affirm – Step 3
Are you ready to embrace change? Do you really want to break through the mental, emotional or physical barriers holding you back from achieving your goals, aspirations, happiness?
Change is inevitable. You can sit back, wait, and see what happens or take the reins and have some control over how and what those changes are.
Growth won’t truly happen in a sustainable way until you’re ready for it.
The next step to breaking through your barriers is to declare and affirm your commitment to change. What you’re most afraid of doing is usually what you most need to do!
So how do you do it, you may ask?
I think the process is different for everyone. It took me a while to really embrace the changes I knew I needed to make. I’d been going through the same cycles for so long, the thought of dealing with change was petrifying, but what was even more frightening was the thought of life continuing the way it was.
Part of my process was to create affirmations and a vision board.
You might be thinking, ‘yeah right, as if thinking you are or you have will make things magically happen’. I can tell you from experience, that talking things into my life on a regular basis has helped me achieve things I never thought I would. It’s also helped me feel better about myself.
I wrote several affirmations I aspired to think and feel about myself, as well as what I wanted to achieve. I say aspired, because I was so negative about life and found it challenging to find positive things about myself, even when others did.
Examples of my affirmations were, ‘I am beautiful’, ‘I am worthy of love’, ‘my body doesn’t define who I am’ ‘I can achieve my goals’, ‘I am a good parent’.
I put these affirmations all over my bedroom wall, surrounding my vision board so I would see them first thing in the morning, last thing at night and say them out loud. I even put them in my phone as constant reminders throughout the day.
It took a while, but I finally started to believe them. My affirmations have changed over the years, as have I. I believe growth is a continuous journey, so I continue to affirm growth and change in my life.
Before you know it, the impossible becomes possible and you will be on your way to changing your life in a way you never imagined.
Self-talk and what we let out into the universe is powerful, so make it positive!
Action – Step 4
This is the time when you start to put things into action! Whether your goal is simply to be happy and content with life, change career, or improve your relationships, you need to decide your strategy. We all have different strengths, personalities and lifestyles, so should remember that one size doesn’t fit all. Although it’s important to work on your weak areas, you must create a plan that works for you. I’ve attended numerous conferences, listened to webinars, read a lot of books, blogs and had coaching sessions that provide strategies and methods to achieving goals. I’ve tried many of the given strategies, some successfully, others not. Through my process of self-awareness, self-understanding and reflection, I’ve empowered myself by knowing what does and doesn’t work for me. I’ll be honest, some of the strategies I’ve shied away from due to lack of self-belief, bad timing or fear, but I’ve made a promise to myself that I’ll revisit them. Others, I’ve tackled, regardless of those barriers, such as starting my youth organisation and sharing my health condition with the world. In order to feel confident in achieving my goals and facing my fears, I had to take action by strategising and making a plan. Small, achievable steps were so important for me. When I set myself massive goals to achieve in a short space of time, it was so overwhelming I gave up then beat myself up for giving up! My way of accomplishing my goals, which could be as mundane as doing some housework, is to do what I can when I can on the good days and to pace myself; managing my ‘spoons’ in a balanced way. Sometimes I’ve even had to change my goals to make them more attainable. The old school SMART model often helps: Specific Measurable Achievable Relevant Timing However, there are several methods you can use which you will have access to in my online coaching programme Chronic Illness – It Doesn’t Define Me. There will be times when your goals feel totally unachievable; particularly when you’re in so much pain or so exhausted you’re unable to even think about doing anything, let alone actually doing it! That’s OK and perfectly understandable. It’s OK to have bad days or even weeks where you don’t make any progress. Don’t beat yourself up; just get back on track when you feel able to. Remember your why it’s important and what will be possible when you achieve it.
Alternatives – Step 5
Most of the things I envisaged for my life haven’t happened, but the way I deal with life’s disappointments has certainly changed. Often when striving to achieve something, we can become fixated on a particular way of doing it; then we become despondent when that method doesn’t work. I’ve felt that way many times in the past. Due to health conditions that affect my mobility and energy levels, with fluctuating daily pain, I have been knocked sideways, backwards and down numerous times when it comes to my career and aspirations. Repeatedly coming up against barriers really knocked my confidence and motivation which contributed to a lack of self worth. It took a change of mindset to accept that, just because I may not be able to achieve something in the way I had planned or the way someone else says it should be done, doesn’t make it wrong or unachievable. I also came to the realisation that sometimes, what I WANT to do is not always what I SHOULD do. So, for what felt like the millionth time, I picked myself up, dusted myself off and started thinking about what else I could do to achieve my goals or whether I had to find alternatives to suit my lifestyle, personality and values. I decided I wanted to coach people. Help them with their personal growth, which would lead to them achieving things they never thought possible. I often found coaching in person challenging, as some days it was difficult to get out of the house to get to my clients, so I had to think of another way that I could help people and still earn an income, even if my body decided it wanted to have fun with me that day. We all want to earn money right? Then one day I had a revelation! Create an online programme for people whose chronic illness has caused them to become stuck. Those who are struggling to accept the tough blow life has thrown at them, those who want a career but have no idea where to start, those who are so down on themselves they’re on the verge of giving up and not trying anymore. I wanted to help such people because that was how I used to feel. Who feels it knows it yeah? Being self employed and getting clients consistently isn’t easy either, so when a couple of opportunities came my way to make a residual income I jumped at them. I’m no sales person, but a friend of mine introduced me to social marketing aka network marketing and he’d been doing really well and making a decent income just through sharing the business on social media and talking to people. “I can do that” I thought. So I did. And I’m doing pretty well. All I need is my mobile and internet access. I get training and support too. An added bonus is that it fits right in with my ethos of helping others, so it’s a WIN WIN! I never thought I’d be in a position to earn an income while helping others and it feels fantastic! So my message to you is, don’t give up on your goals and dreams! What alternative methods can you use to achieve your goals?
Actualisation – Step 6
What is self-actualisation? Have you achieved it? Do you believe you can?
Self-actualisation is not about where you are on the career ladder, how many followers you have on social media, whether you wear the most expensive designer clothes or drive the latest car.
It’s about realising your potential and doing what you are capable of.
This, of course will vary for each individual. For some it could be the desire to be what they deem to be an ideal parent, for others a world class athlete, artist or entrepreneur.
A valuable lesson I learned is not to compare myself to others. I am unique. My values, capabilities and personality are not to be compared to others, but rather to be acknowledged and embraced for what they are.
It is important to note that self-actualization (American spelling) is a continual process of becoming rather than a perfect state one reaches of a ‘happy ever after’ (Hoffman, 1988).
Although I have made a vast amount of progress, I know I am yet to reach my full potential, but it’s something I strive towards as I continue to grow and understand myself.
The key questions I ask myself when thinking about where I am in life and where I want to get to are:
Am I happy? If not, what do I need to change?
Am I living in line with my values? What do I need to stop doing?
Am I being the best mum I can be? Could my relationship with my son be improved?
Am I doing my best overall? If not, what can I do better?
Am I continuing to learn and grow? What further knowledge do I need?