Saturday, 23 January 2016

Chronic Illness: The New Normal

This post is a follow-on from a post I wrote last year: Lupus and My Self. I wrote about the effects of chronic illness on my state of mind and how it affects my sense of self.

I was diagnosed with lupus and myositis in my early 20s. I was young, working and earning money and having fun. I found the diagnoses difficult to accept and in the early days, I tried to pretend that I was 'normal'. My 'old' normal was being replaced with a 'new' normal, and it scared the hell out of me. It was something I did not understand and I could not control it. I couldn't predict what my body would do to me next. My body was changing; the creeping fatigue grew worse and by the time I was 25, it was a monster that had taken over my life. I struggled with the side effects of the various medications I was taking - immunosuppression, steroids, and others; and dealing with more frequent flares and chronic pain. The illness and medications also changed my physical appearance, which punched holes in my sense of self. I hated my body for what it was putting me through.

With chronic illness, you also have to adapt to being a patient and navigating your health system. Being a patient requires you to undertake activities that healthy people do not usually have to worry about, such as seeing doctors, going to the hospital and taking medicines and so on. Even now, it still often feels abnormal to me. When you first become a patient, you enter a world that is a place completely alien to you. The hospital environment is huge and frightening, full of sounds, smells and sights that you are not used to, where strangers do things to your body in order to help you, and then you have to trying to navigate through the complex health care system in order to get the treatment you need. It completely throws you off your feet.

This becomes the 'new normal'.

Chronic illness affects almost every area of your life. The 'new normal' - being chronically ill - can have an adverse impact on our lives, our sense of self and on everyone around us. Many sick people are unable to work and will struggle to pay the bills. Many of us need to rely on state welfare, which brings with it added challenges and stress. Being chronically ill can also cause social isolation, relationship troubles, a loss of independence and so on. Here, I again refer to Kathy Charmaz, who suggests that, as a result of being chronically ill, "these individuals suffer from (1) leading restricted lives, (2) experiencing social isolation, (3) being discredited and (4) burdening others."*

We don't like being seen as helpless, fragile and vulnerable. We like to be seen as strong, fierce and independent. And yes, we are strong, but we get days where we don't feel so strong and want to cry, scream, rage and grieve about it. This does not make you weak. In fact, it takes immense strength to acknowledge that we cannot be strong all the time. If we did not experience days where we did not feel strong, we would not know what it meant to be strong. Without weakness, we could not be strong, because we would not know how to fight for anything.

How we react to and deal with chronic illness varies depending on the situation.** Everyone is different and copes differently.

"Eventually, you adjust to a new normal," explains Lisa Copen, founder of Rest Ministries, Inc™*, an organization that serves the chronically ill. According to Copen, once you find the right doctor, medication and support, you can learn to cope successfully with your limitations—as long as you remember that you're not just dealing with your physical well-being; instead, you're learning to cast your relationships, emotional and spiritual health and physical health in a different light.***

So, what do you do with this new normal? You begin to realise that you cannot run away from it, or hide it. There is only one thing you can do, and that is to face the monster, look the b*****d in the eye and kick his arse. While you may not have much control over your illness, you can regain some control; not by trying to win back what you have lost, but by redefining your new normal and ultimately, refining your resilience. It can take a while to adapt to the new normal. "Rebuilding or redefining normal is a long process," explains Georgia Shaffer, a psychologist." So how do you do that?

I have found that educating myself about my illnesses has empowered me to make better, more informed decisions about my health. Learning about your illness and understanding the jargon enables you to open up a working dialogue between yourself and the healthcare professionals. When I was younger, my mother said three words that have been etched onto my mind since then: "Knowledge is power."

Another major thing that has helped me adapt to the new normal is joining support groups. Whether in person or online, support and friendship from others who understand what you are going through makes a huge difference. Support groups enable you to share information, advice, learn, help each other and increase your confidence. The friends I have made through support groups are like family to me now.

While your illness may place limits on some aspects of your life, it does not mean that your life is over. While there may be restrictions, you will learn that there are other things that you can do. You will learn about your limits, though these may change over time. It is important to take each day as it comes (my favourite cliche) and expect the unexpected. It is okay to say NO when you need to. True friends will understand. You certainly learn who your true friends are when you become chronically ill. It is also okay to ask for help when you need it. Asking for help does not mean you're weak; in fact, it takes a strong person to accept that they need help and ask for it.

Adapting to the new normal is something that I am still learning, years after my diagnosis, but as I've grown older, I've come to realise that it is an ongoing, lifelong process. Life is exactly that, an ongoing process, in which you learn more and more as you go through each day and battle. You become wiser, stronger and resilient. You are a phoenix and you will rise out of the ashes each time you fall apart, stronger and more beautiful than ever. Never give up. Do not surrender. 


* Sociology of Health & Illness,  
Volume 5, Issue 2, Article first published online: 28 JUN 2008



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