I’ve been seeing a Health Psychologist lately. Her name is Anna and she is fantastic. I have six sessions with her, under the provision of my PHO (primary health organisation)*. She’s been helping me to work some things out. Specifically, the head-stuff about dealing with a chronic illness. Society at large is impatient with people who have conditions that won’t go away. The attention span is often short. As I saw someone put it recently: ‘get better or die’ seems like the unspoken, prevailing mentality of our culture. I don’t know where that started, or how. But there are so many medical puzzles and strange syndromes, I guess people tire of it. No one wants to hear you bleat ad-nauseum and their emotional energy for discussing, acknowledging or assisting you in your illness can be used up very quickly. Couple this cultural morass with my own reluctance to put my vulnerability out there… well, it’s a big contributor to the mental burden of my illness. I want to feel accepted. But the acceptablity factor of chronic illnesses is up there with… how much the Australian’s like Tony Abbott.
A big part of my feeling of ‘belonging’ in this society has always been my work. Being a ‘teacher’ files you into an easily understood category. It’s an instant ice breaker and often leads to lengthy discussions with strangers about how little Johnny can be helped with his times tables. (Er… practise?) That particular nut is one I have failed to crack with my own children, so strangers beware! Best teaching advice not always found here, despite how readily I give it out! I have always liked being understood for my work role. Although, sometimes the perceptions of teachers from the public can be challenging. The statements about our long holidays and lack of real ability, all thanks to that old nugget “those who can do; those who can’t, teach”. But on the whole, I have found that people respond positively to teachers. Most people recognise that it is hard work and you wouldn’t be a teacher if you weren’t dedicated to young people. Most people like that. And now that I am not teaching, it feels fraudulent to declare that I am, just so that I can arrange myself into a box that people know and like.
You know how it goes:
“What do you do?”
“Erm, I have this thing, this condition. I don’t work anymore. I blog (does that count)?”
I really miss the identity that my work gave me.
I miss having an easily identifiable role. Something with instantly recognisable status and take-me-serious-ability. My moniker. My way of being.
So I have been working with Anna on re-defining my role and reaching acceptance about the change in my identity. I am not a teacher anymore. But I still teach sometimes. I guess I can say I’m a Health Activist; but only in my own small ways. I raise awareness about my condition in New Zealand, so that the small numbers of us here can be better understood. I am a Freedom Fighter (woop!); every day I fight my way through symptoms and struggles to make a life as free as possible for me and my family. I am a Giver; if there is something of myself that I can share, I do. I am a mother, a wife, a sister, an aunty, a daughter, a friend. A Writer.
I think the first step in coming to terms with my redefined self, is truly acknowledging the chronic part of chronic illness. The word ‘chronic’ originates from the Greek (and before that, the latin): “khronikos” …of time. A Chronic Illness therefore means an illness that persists over time or is constantly recurring. A long term illness. I do spend a lot of time trying to find the cause, so I can find a treatment, so I can go back to who I was. But maybe, I need to accept that in the mean time, this thing is chronic. It’s not going away with a fanfare or a puff of smoke. There is no escaping the fact that these times are the times I must step through. I am so grateful for the internet, thanks to it, I am not walking the slow path alone. There is a sychronicity to the inexorable march I am on. I am keeping time with my fellow inmates, pacing the yard and measuring the time. We are all working it out, one ponderous step at a time.
Sheesh! …if Helena Rubenstein is correct. My spirit has a flawless complexion.
Here are some more tips for dealing
with Chronic Illness
Learn: find out for yourself, anything you can on your condition so you can make good decisions about your care.
Manage the symptoms: follow the recommended treatments given by doctors, including taking all medications at the correct times. Use an alarm system or app to help you remember.
Plan for proper nutrition, engage in a recommended exercise program if you can.
Observe: Know what triggers your symptoms, if anything. Learn to pace. You know your limits better than anyone else. Sometimes, challenge your limits a little. It’s okay to try things to better assess your capabilities as they change.
Rearrange: Identify the things in your home that can be re-organised to make daily tasks easier. eg. We have just installed a high bench in the laundry so I don’t have to bend down to do the washing. Changing things can help you maintain more independence.
Enquire: Ask away! Ask your doctor, social worker and anyone else involved with your care about the services available to you. Ask online support groups for advice. These people have often been navigating these waters longer than you. They will have invaluable ideas to help.
Talk: You need to continue to talk to the people in your life who are involved in your care. Don’t give up on expressing your needs. If they don’t know, how can they help? Just make sure you also keep up the listening part of the communication equation. The talking and listening is so important, especially in your primary relationship. Try not to shy away from the hard conversations, persist with them until you find resolution, because in the resolution you’ll find peace and connection again.
Redefine: what your roles and responsibilities are. Discuss these with your partner, family, friends. You might need to sometimes be assertive to help people understand the things you can and can’t do.
Prioritise: Decide what really matters to you in any given moment and congratulate yourself for prioritising that. See if you are spending too much energy on tasks or people who are detrimental to your wellbeing. It might be time to take some things out of the picture.
Plan: set realistic goals for your day and try to adopt a kind of structure. Eating at regular intervals can be hard to manage, but it is really important if you are taking medications. Plan your food in advance whenever you can so that it will be easy to get to and eat. You might need to ask for help to get your food organised for the day. Avoid spontaneous activities if you don’t have the supports or circumstances in place to make it work for you.
Reinforce: how valid and useful you are by finding ways to empower yourself. Being creative is a wonderful way to remember how unique and special you are. It’s also a great distraction. Find ways to express your own skills and talents and explore all the ways you are able. This detracts from the focus of all the ways you feel dis-abled. Think of things you can do and get into doing them. For me, it’s writing… blogging has been a wonderfully empowering tool. And I can do it in bed!
Reframe: Taking a different perspective from the negative is a powerful tool of choice. Being positive can be as simple as seeing the humorous side of a situation or reaching out to someone else who is suffering with some encouragement or acknowledgement. It can make an enormous difference to your emotional well-being.
Distract: If you like to be in control, this one is for you. Man-handle your mind’s focus on your illness by wrestling it into another thought pattern. Use some strategies recommended by psychologists. Listen to music, do some art, write; get your brain and fingers busy.
Relax: Stress worsens the experience of symptoms and leads to increased tension. Deep breathing techniques, massage, meditation, yoga, tai chi are some things you could try (depending on your physical ability) to improve your relaxation.
Laugh: it’s the best medicine. If nothing in your daily experience is tickling your funny bone, seek out laughter. Search online for funny videos, comedy channels or TV series.
Get support: It’s totally normally to be emotional about being chronically ill. Of course you are! There is grief for yourself, but also you may find self-blame, anger, frustration, hopelessness, despair. Seek help among those dealing with your illness. If you can, find a support group, online or in person. But also, use the mental health help-lines or seek professional psychological help. Friends, family, fellow-sufferers and health professionals can all help you find ways to let go of the sadnesses and find a pathway through.
Let it Go: take steps to accept that the old definition of yourself and your old life, prior to becoming ill is no longer relevant to this time you are walking through. Let yourself redefine and create a new meaning and purpose beyond your illness. I have found that asking by myself “What sort of person am I?” rather than “What do I do?” I have a good starting point for this process. Letting go is not something you’ll do once. You’ll let go in stages, or you’ll let go over and over. Just keep your focus on who you are. And be kind to yourself. This letting go is tricky.
No wonder the world is singing about it.
*Are you in New Zealand? If you are and you are registered with a ProCare GP, you may be eligible for funded sessions with a psychologist (no cost to you). You can find out more about this service by contacting ProCare Pscyhological Services or your GP. www.psychologynz.co.nz
Some health insurance policies cover psychiatric services or there is always the option to pay for the services of a qualified psychologist. Call your insurance provider if you have questions about it.