When you have to cope with chronic illness or terminal illness it can feel like a never-ending burden. One of the most frightening experiences in life involves problems with our health. At times, it can seem all-consuming and hopeless. The recent news that Olivia Newton-John passed away prompted me to write this post for anyone who needs support or for anyone caring for a vulnerable or ill person. One of the hardest parts about being human is the fact that we are aware of our mortality. Society doesn’t focus on this and it’s almost a taboo subject but dying is as relevant to everyone just as living is.
There are however ways to cope with chronic illness and terminal illness. I am not saying that it will be easy but the one thing that you can control, in most instances, is what you do and what you choose to focus on (your perception of your situation).
Often, it’s not possible to change your health diagnosis immediately (if at all), this is especially true if you have been diagnosed with a terminal illness. Unfortunately, the idea of dying has been ever present in my life as I was born with Cystic Fibrosis with a life expectancy of 40 years (I am now 51 years old). My mother passed away in 2000 from cystic fibrosis as well. When I was 27, I went to Paris for training and came back feeling very ill. It turned out that I was diagnosed with thrombotic thrombocytopenic purpura (TTP for short), a rare blood disorder which was nearly fatal. My kidneys failed, pneumonia developed and it was a miracle I survived.
After spending 6 weeks in intensive care and having a tracheostomy procedure to assist with my breathing, I eventually began to improve, I lost my hair and weighed a mere 43 kilos.
Thanks to recent medical advancements, I have started a new drug that has helped me tremendously and future looks a little brighter. Is new drug is called Kaftrio and I appreciate every extra day that it has afforded me. Here are my top tips for coping with chronic or terminal illness.
1.Focus on what you can control
If you focus on the loss of control you will only feel worse. Instead, make the effort to focus on what is still possible. Denial won’t help either but thinking about what you can’t do anymore or how your illness might progress will increase fear and anxiety. Remind yourself that there are still things you can do – see a doctor, find out about other treatments, speak to friends and family or join a support group. When you tune your focus into where your power lies, you will feel more hopeful. Things like how you want to plan your day, your diet, whether you go out or not and so forth will help you far more than comparing your life before the illness and the way you are now.
2.Try not to overthink or catastrophize
Overthinking is one of the worst things you can do. When I treat clients with health anxiety, I often find that they worry a lot about the future. This is understandable but our minds tend to take us to all sorts of scary situations that might never happen. Remind yourself that your brain is overthinking in an attempt to keep you safe but it OFTEN sends us false alarms. Learning to dismiss your worrying thoughts is always a good idea.
Rumination is NOT the same as problem-solving. If you plan actions to fix something that’s good but when worries go round and round without an end in sight, cut that down and focus on something else. Thoughts affect our feelings and our feelings influence what we do. Negative thoughts (often they aren’t based on facts) create a negative cycle and keep you stuck in fear and anxiety. Pull your focus back to the present moment and be aware when you catastrophise… the worst-case scenario might never happen so don’t dwell on it unless you have clear evidence – if that happens then problem-solve.
When you worry, ask yourself two questions:
Did this get rid of my painful thoughts and feelings in the long term?
Did it bring me closer to a rich, full, and meaningful life?
You’ll most likely find it didn’t help and the probable outcome is that your negative thoughts have cost you in terms of time, energy, money, health, relationships, and vitality.
3. Fill your time with meaningful experiences
Keeping busy definitely helps to decrease fear. Uncertainty is a part of life but health concerns create a wave of uncertainty. Again, your brain will want to fix the worry and anxiety but sometimes that just won’t be possible. Instead, try yoga or gentle exercise, and start a new hobby (personally I love colouring in and painting by numbers for adults – a great form of mindfulness).
See friends and family and don’t allow yourself to become too isolated. Join a support group in person or online. We are meant to share and we feel better when we feel we aren’t alone in what we are going through. So much of real raw life is hidden in our day-to-day lives where the standard “I am fine” answer is the order of the day.
Everyone has something going on in their lives that they would rather not deal with. no one has a perfect life and opening up to others shows your humanity and might just help you connect and bond in ways you hadn’t managed to before
4. Acceptance instead of resistance is the way to go
resistance is exhausting especially when acceptance is the right approach. When we get stuck in the trap of “Why me? it’s not fair…” we create unnecessary strain. When we accept, it’s like lifting a heavy weight off your shoulders and you can then move to the next level of dealing with the situation more effectively.
Acceptance is like waiting for the gust of wind to come in rather than blowing in the sails of the boat with all your might despite not getting anywhere.
Resistance works against you whereas accepting what “is” will help you move forward quicker.
5.Pace yourself and adjust
Problem-solving includes finding different routines to suit your new health status. Don’t fear asking others for help. You’d do the same for someone else, wouldn’t you? You’ll be amazed at how people want to help – it makes them feel useful too.
Being ill is hard to accept and cope with. The one thing about ill health is that it is a great leveller. Your priorities become clear and your time becomes very precious. Instead of wasting time with people who are toxic or doing things that are meaningless, health issues remind you to make the most of the present moment.