What if we viewed lived experience as an asset? As an asset of professional, economic,…
You cope so well! I couldn’t cope with all that you do. You must be so brave. How do you do it?
We’ve all heard it. When you’re ill (or anything adverse happens), people will ask you how you cope with it. I’ve heard it so, so many times. The answer? Because we’ve got no choice. We can’t change our illness, so we have to get on with it. Not everybody can cope with it, but the large majority of us do. However, we don’t have superpowers or a secret, we have no choice but to cope. Yes we are brave for coping with all that we do, I’m not denying that, and it can be a comforting thing to hear, but most people in our shoes would be the same. Through our illness, we find out how strong we truly are, and we find strength in places we never knew existed. The human body and mind are amazing things, and our fight for survival is astonishing.
However, we all have a limit. That’s not a fixed limit, it can be a different limit of coping for different symptoms and problems and different days and situations. Take our pain threshold; we all have a different tolerance of pain, and what is some people’s worst pain is just a niggle to someone else. That doesn’t mean their pain hurts any less, it just means that some people have experienced more severe pain, so their number 5 would be a 10 for someone else. It’s subjective; it depends on what you’ve experienced in your life, and what else is going on at that time. Whatever the issue, we all have a limit and that limit can change day to day, problem to problem.
When I am struggling and the problem(s) I’m dealing with are pushing the limit, I call it my coping cliff. Each problem/combination of problems takes me one step closer to the edge, and one problem or a combination of all my problems may push me off the edge. Once pushed off the cliff, it’s very hard to get back to coping. This is why it is so important that you don’t let problems build up, you need to have someone you can be honest with and talk through your problems with to help reduce the burden. You need an outlet for your pain and feelings. I keep a journal, and I am fortunate to have an extremely close bond with my mum and my sister, who I can talk to about anything. Much as they might not want to hear some of what I have to say because it may hurt them to hear it, they listen and understand. They let me cry, rant, moan; whatever I need to do to make me feel better and lessen the burden. We all need someone like that, someone who listens and understands even though they may not want to hear what you are saying as it’s painful. My journal holds a symptom diary, what went on that day and my feelings. Every so often I allow mum to read my journals to get an understanding of how I feel when I don’t want to tell her out loud. Between my mum, my sister Vicky, my friends (both online and in person), my journal, my blog and supportive doctors and health professionals, I am able to stay a good distance away from the cliff most of the time. Sometimes I get very close to the edge, and I worry how I will cope and stop me from falling off the cliff altogether, but rarely do I fall now. I am very lucky to have worked out a system that works well for me and allows me to cope. You need to find things that work for you, find an outlet for your emotions and frustrations, find someone you can talk to, and find ways of coping.
If you are a friend or carer of someone who is ill or going through a hard time, and they confide in you, please listen and let them talk freely – whether you want to hear it or not. There often is not a solution to their worries, particularly when someone is ill – you are not being asked to solve their problem, but to listen and care. It is an honour that they have chosen you, because it takes a lot for us to make that step and be truthfully honest. Try to understand. Don’t tell them that they can’t think like that, they’ve got to be positive, or that they’re being dramatic. We all need someone to confide in, or the coping cliff will become a regular dilemma. This is how suicide happens; they reach their coping limit, they fall off the edge, and they can’t get back. They can’t see an end to the pain/problem, they want to spare their family the burden of their illness and/or the problems they’re facing, and they want a way out; and they see the only option as suicide. If people were more supportive and listened to these people and let them talk freely, there’s a chance they won’t fall off the cliff and suicide may not be their chosen coping mechanism. We all need an outlet for our emotions, and it takes a lot of courage to confide our struggles in others. I for one struggle to be honest with anyone other than my mum and my sister. I don’t cry in front of anyone and rarely do I share my innermost thoughts with others. I’m slowly learning to open up, as bottling it up only edges me ever closer to the cliff, but it’s still hard.
It’s ok to feel sad. I feel overwhelmingly sad at times, and scared. It is ok to feel sad, we all feel sad at times and especially so if you suffer from depression. It’s normal. You can’t go through life without ever getting upset. When you get ill, it is especially normal to feel sad and those with chronic illnesses have a higher rate of depression than the normal population. Don’t beat yourself up over it. Also, you don’t need a death to grieve. People may not understand grief; my mum once said to a chaplain that we have had to grieve for the old Lucy we’d lost, and he said “You can’t grieve, she hasn’t died”. It just shows the ignorance. When you become ill and/or disabled, you will go through a grieving process. You have to learn to accept it. Sadness and depression is a part of the grieving process. Fear is a normal emotion too, and when you are ill you have a lot more fears. Fear of getting sicker, fear of ending up in hospital, fear of becoming disabled, fear of death; fears come in many shapes, sizes and reasons.
Don’t bottle up all of your feelings, you’ve got to let it out somewhere. Find what works for you, be it talking to a friend, getting a counsellor, keeping a journal, writing a blog; anything that helps you cope. And if you’re desperate, call Samaritans or Mind and talk to them. We’re all human, and fear, anger, sadness and frustration is normal, as is the feeling of “why me?”.
Samaritans: 08457 90 90 90
Mind: 0300 123 3393