Chronic illness has been a part of my life for as long as I can remember.
When I was diagnosed with my first big diagnosis in my 30’s, Charcot Marie Tooth Disease (side note – it’s nothing to do with teeth) it floored me. I just second guessed everything and constantly re-examined my life and my future. Life spiralled. Outwardly I was still that same person but internally my mind was a mush, like a swan on the surface but frantically paddling underneath just to try to stay afloat. I lived… but in a blur. My career in teaching was over and I constantly questioned, ‘Who was I now?’ as so much of who I was was bound up in what I did.
It was a tough time.
Slowly I learnt, I trusted, I talked, I became empowered and I focussed on what I could do not what I couldn’t. I found work arounds for things to make my life easier. I began to own my life again.
Ultimately, I changed my mindset.
Most importantly and life-changingly, I learned how to not let my chronic illness, which had been the focus for so many years, become my story – the story of someone who shirked away from her own life because she was diagnosed with this stuff and the world now owed her something for giving her that to carry. I looked forward, I focussed on what I wanted and I went out there and got it.
No more excuses.
I’ve learnt a few lessons along the way that I’d love to share with you, this being one of them, you have to focus on where you are going not where you have come from.
7 Lessons that I have learnt
1. Learn about your illness so you feel empowered and know how to help yourself. This can help you in doctors appointments advocating for yourself and discussing treatment options. It also helps you to manage and understand your symptoms for yourself and communicate what you need to to family, friends or colleagues without feeling awkward.
2. Beware of social media groups. There are some great people online, I have connected and built friendships with fabulous people from all over the world that I have never met. But there are also people who want to compete, if you ask a question seeking support, their symptoms will always be worse, their life harder. It’s really important for them to let everybody know just how bad everything is for them. Be careful of falling down this rabbit hole. You can’t fix everybody.
3. Surround yourself by people that care. This sounds simple but your circle may get smaller when you are diagnosed with a chronic illness, that’s just how it is. The people that you once had wild nights out with will drop off the radar when you aren’t showing up anymore. You need people in your life that will listen and support you but also will talk about other stuff, make you laugh, have fun. There is so much more to life than your diagnosis and you need people that will help you keep things in perspective.
4. Practice self care. This means eat well, have a good sleep routine, get fresh air, switch off, move, laugh and nourish your soul. Balance and self care starts with YOU. You need to learn to focus on you, to be aware of what you want, what you don’t, learn to love yourself well and ditch the idea that self care is selfish. It’s not. When you have balance, you can divide your time and energy across all areas of your life, ensuring an appropriate focus on family, learning, spirituality, and career, etc and nurturing your overall wellness.
5. Set boundries. Boundries are super important when you have a chronic illness. Firstly it is important to recognise anything that may trigger a flare or make symptoms worse and anticipate them. You need to be clear about your needs and communicate them to the people around you, your friends and family are not experiencing your illness as you are and it is your responsibility to let them know how you feel and ask for help if you need it. This includes saying no to things if you need to. It is about giving yourself permission to do what is best for you.
6. Focus on what is good in your life. The saying ‘where your attention goes your energy flows’ is very true and it is important to remember it. When you are surrounded by doctors appointments and feel rubbish it that understandably where your focus is, I get it. But, the more that you focus on how rough things are, the worse they get. Think about what is good in your life, what you are good at, what you enjoy and do more of it. Your symptoms may not improve but the way that you feel about your diagnosis and your life will.
7. Look forward. Focusing on how things were, the job you had, the plans you made that seem unachievable now, will not help. Stop. Start from where you are today. What do you want? Get specific, what do you really want in your life now? In three months time, six months, three years? What is important to you? What do you really value? If you think about it it probably isn’t that high flying job that payed mega bucks but you hated, where you were burnt out and never saw your friends, even for coffee. Focus on the small things that will help you reach your bigger goals and start now. No more excuses.
Working with a coach can be really beneficial to help you on this journey by identifying the roadblocks that are stopping you from achieving your desired outcomes. Beyond this, NLP lets us delve deeper and identify the root cause of these roadblocks, which when removed, result in a more profound transformation. Do you want to chat about how positive mindset coaching could impact your life? Book a call.
Join the The Thrive Tribe on Facebook – A brand new private group where I will share more personal tips about how to live well with chronic illness and there will be weekly challenges to help you think about your life in a different way.
