Tuesday, 4 October 2016

Being You, Despite Chronic Illness


I didn't brush my hair today. And I didn't bother getting dressed. I did brush my teeth though; that was a major achievement. I look like crap, it hurts to move, and I have one hell of a headache. I always seem to have a headache lately. Oh, and I did mention that I'm too sick to work or study? My life as a patient revolves around medical appointments, hospitals, doctors, blood tests, medicines, pharmacies, invasive diagnostic tests and waiting rooms.

Ten years ago, I was diagnosed with lupus and myositis. Back then, it didn't affect me much. My main symptoms were migraines, joint pains and fatigue. The impact on my life was minimal. I worked full-time, partied hard every weekend and most weeknights. Ten years later, I am housebound with physical and mental pain 24-7, and when I do leave the house, it's only to see doctor or a specialist. Sometimes I might say hello to the postman.

And life is so much fun when you're getting a colonoscope stuck up your bum...


Since I became ill, my life has changed in so many ways that I have often struggled with my sense of self. This is further complicated by my recent diagnosis of borderline personality disorder, which causes disturbances with self-identity. Illness and certain medications can alter your physical appearance. I have dents in my backside from repeated steroid injections, lesions, scars, bruises, stretch marks from repeated weight fluctuation, and at times, hair loss. I own more pajamas than clothes and at Christmas, I actually want socks. Lots of socks. I get more excited about new bed linen than a healthy person would with a pair of new shoes. Such is my life as a sick person. 

"Chronically ill persons frequently experience a crumbling away of their former self-images...Such losses are most marked at the onset of a serious, debilitating illness or at points when ill persons define former actions, lives and selves as now precluded by illness." ~ Kathy Charmaz

So how do we maintain our sense of self through chronic illness? A report by Chronic Pain Australia (CPA) says that having goals and plans is beneficial. I have personally found that having goals (even very small goals), writing and making plans (I LOVE writing lists...but I just need to figure out how to get the things done!) helps me work through things one step at a time. They add that it is "important to let go of past images of ourselves which no longer fit with our situation. While we hang on to them, it places pressure on us to meet expectations and to be someone that we no longer are." Letting go is a constant healing process of building confidence and self-esteem, self-analysis and introspection. That is something I struggle with the most. 

CPA also recommends working on personal development, e.g. "becoming involved in activities such as part-time study, interests or hobbies has assisted us to develop different aspects of who we are."

Most importantly, CPA says that "Perhaps one of the strongest points to make is the positive influence of a supportive network of people...Access to groups of people experiencing similar situations provides encouragement and understanding for the journey toward realising an altered self. This might happen online or face to face." Exchanging information, tips and advice empowers you to take control of your illnesses. Without the internet, I have no idea how I would cope - I am housebound, so being able to connect with others who understand, online, helps me fight the fear, loneliness and isolation caused by my situation. Thanks to support and friendship from people all around the world, I no longer feel so misunderstood who understand. These amazing people, who are my friends, have literally saved my life, and I will always be grateful for them!

Support and understanding from those who understand will help rebuild your confidence and self-esteem. It is a constant healing process. I have learned that it is not the destination that really matters, it is the journey. Don't think of the results, just keep going. Take each day as it comes, one step at a time, at your own pace. Remember that everyone is different and that everyone has different ways of coping. It is not a competition. It is you, and it is you who counts. Try not to beat yourself up if you have bad days, when you don't feel so strong. These days are natural and are part of the ongoing process.


Having a chronic illness is a full-time job and it can be difficult to keep things simple, when you're having to manage an endless stream of appointments, diagnostic tests, medication, commitments and responsibilities, financial burdens, the need to rest and so on - which does not leave much time for you; when you can take a breather and simply be you.


Finally, remember that you're doing the best you can and that is enough. Be kind to yourself.






Sources:

* Sociology of Health & Illness, Volume 5, Issue 2 
Article first published online: 28 JUN 2008
http://qmplus.qmul.ac.uk/pluginfile.php/158532/mod_book/chapter/3334/Charmaz%20K.pdf



2 comments:

  1. I have found your writing and feel your pain. as i suffer from lupus also.. ppl think im lazy but thw way u explained spoons was great. i just wish ppl n.family wud understand. thank you and god bless. angel hugs.

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  2. Thanks. I was a 4 hour a night sleep person, could commute 5 hours a day to work and have fun on the w/e. More than anything, I liked to say 'Yes'. I had lupus - but remitting. Each year something has gone :great hair, cheekbones (16 years on steroids and energy. The person I was was fun & I miss her. A lot.

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