The last 18 months have been rough, in fact more than rough, it’s been one of the hardest periods of my life. I am no stranger to surgery, in fact I’ve had over 40 surgeries in the last 20 years and I am only 41.
Living with multiple chronic illnesses is tough and challenging, living with them and needing surgeries an average of twice a year for 20 years is a challenge few people understand, especially when they are invisible illnesses. Don’t get me wrong, I am in many ways, grateful that my illnesses are invisible, despite the challenges they bring I do not have the burden of people looking at me and making judgements and assessments about me based on how I appear. The flip side however is the constant challenge of people saying I don’t look sick, and not believing there is anything wrong with me.
People who live with chronic illness or chronic pain each have their own challenges and crosses to bear, we all face criticism, discrimination, ignorance and misunderstanding amongst other things. How we chose to manage those things however is what defines us, not our illness or pain.
I have come across many people suffering from chronic illness and/or pain in my journey and can typically break them down into three types of people;
- Those who are defeated by their illness and chose to let it control their life, often with a ‘poor me’ attitude who wallow and in some cases thrive of the negativity.
- Then there are those who accept their circumstances and are ambivalent about their situation, so much so they are simply going through the motions of life, and
- Those who accept the hand they’ve been dealt and chose to not let it hold them back or define them.
Understanding and acceptance of the illness or pain you have is much like stages of grief, you have to work through the stages in order to arrive at a place of acceptance and be able to move on. How long that journey takes is up to you and no-one can rush that or push you through the stages faster than you are able to work through yourself. Once you get through those stages however and can make it to the third stage you will find an inner peace and strength you did not know was possible. You can tackle any adversity and challenge with grace and dignity and even inspire those around you with their own battles.
If you can take control and be the master of your own universe then your illness or pain will not hold you back, sure it will slow you down some days until you feel like you’re moving at snail’s pace but as long as you are moving in the right direction then progress is progress. Even the old saying ‘fake it till you make it’ applies, sometimes you have to push through and pretend you’re ok and before you know it you actually are ok.
Those I have met in this journey who have taken control are much happier people, they can accept any new challenges or obstacles their illness throws at them and can pick themselves up much faster and bounce back to being in control. How do people do this I hear you say…. There is no magic pill, no instant answer, it takes time to process your emotions and to truly accept that this is what life has dealt you, to no longer be in denial or hold out hope for some magic potion that takes disease or pain away, to stop being angry and resentful. What it does take is work, the ability to be honest with yourself and to want to live the best, most authentic life you can. Once you have arrived at ‘Acceptance Station’ then there are a few things you can do to take greater control.
People often ask me how I remain so positive and don’t let my illnesses and pain get to me, the answer is of course some days it does get to me, some days I do feel like my issues have bested me, but those days are in the minority, the most part I am strong, I fiercely fight against the pain and try to live a happy and full life, albeit with some modifications to how I do things to make it work for me. The biggest changes I made in my life however that turned the tide for me are listed below in my top tips.
Our top tips for taking control:
- Learn all you can about your disease, knowledge is power
- Keep track of what triggers your flare ups or symptoms in a health journal, once you can identify them you can reduce the frequency or severity of your flare ups
- Be your own advocate for better treatment, don’t be afraid to ask questions of your doctors, if they aren’t prepared to answer your questions or answer the hard issues then seek alternative advice from another doctor, be your own advocate
- Join support groups or online networks, support others in their journey to overcome the illness, share tips and help for managing symptoms
- Raise awareness about your illness, talk to people about it and break down any taboos there may be about it
- Get active and volunteer for a charity or group that relates to your illness, this can be a powerful way of taking control against your disease
- Write a journal or diary of how you feel, own the bad days and feelings and then pick yourself up and keep fighting
- Find an outlet that feeds your soul and grounds you, gardening in being out in nature has a proven restorative impact on well being, try adult colouring books, art or crafts, walking on the beach or laying in the garden watching the sun and clouds, whatever it may be, find your ‘thing’ and do it on the bad days.
For free printable list click here: Top tips for managing chronic pain
Do you have any other tips you would like to share? Email us at firstname.lastname@example.org or head to our contact us page, we will add you suggestions to the list.