Learning to Understand

 In Adapting, Emotional Impacts, Pain Management, Understanding

Life is about learning. Learning for exams, learning for proficiency, learning for skill attainment. How often though, is it simply about learning to understand? Truly understand? When you or someone you love has hypermobility, you start to realise that learning to understand is of the utmost importance.

After 20 years of nursing, resigning was the first hard career decision I had made in, well 20 years. Never having aspired to be a nurse (it was a financial decision) it ended up a good one. It linked my passion for science with a caring personality and I was good at it. My decision to resign was as a result of a pregnancy that left me struggling to walk. I had pelvic instability and at that time no diagnosis of hypermobility. There were times that I felt like my hip was going to dislocate and I also had post natal depression.

Everyone who I told about that his sensation looked at me like I was losing my mind. Initially I didn’t work for two years after the pregnancy, by which time I realised that nursing wasn’t physically appropriate any more. It was then that I resigned from my job as a registered nurse in a rural hospital.

Instead I started a Masters of Education. Having always reflected on my practice in the past, teaching has reinforced this belief. In the teaching course, I have had to reflect on educational experiences as both a student and during teaching placements. Reflection is essential for both teachers and nurses; I am starting to find a lot of common ground between the two. I am also learning the importance of learning to understand and its link to compassion and empathy. Whilst no one can fully understand another persons experience, you can understand enough to be empathetic and caring.

During the last 2 years, I found out I am hypermobile, as is my sister and my eldest daughter. Plus, I suspect a number of my father’s family also have or had hypermobility. Now that I am unable to get over the counter codeine for the bad days, I am reliant on doctors for prescriptions. Having moved to Melbourne, I no longer have doctors who know and trust me not to ask for too many scripts. I now feel guilty for asking for pain relief because I think that they are judging me, as I can now admit I judged others as a nurse. They don’t know who I am, they don’t know about hypermobility and that I don’t like taking tablets.

Receiving this diagnosis, doing my research and my current experiences have led me to reflect on my previous nursing practice. In some ways I must admit I was not as good a nurse as I thought. I judged those with chronic pain, invisible pain, the pain I now have. I was wrong. People with diagnoses that were acute, surgical, or chronic conditions like Motor Neuron Disease etc, I would do whatever I could to help them. Chronic back pain of unknown aetiology (unknown cause) and sometimes other causes, I was not the supportive person I thought I was. I tried, but there was a limit. If the patients came in for pain relief, I was more likely to be short tempered when they kept asking me for pain relief after I had given them everything I was allowed to.

It is hard to learn about myself, and just as hard to admit. Because of this awareness, I am trying harder to be supportive of my daughter. She also has hypermobility, worse than mine; she started complaining of pain at 2 years of age. Of course, nothing showed up on tests. She suffers headaches, leg pain, arm pain and stomach pains. My mother thought I was a hypochondriac for my whole childhood. I won’t do that to someone I love.

Having listened to her complain of stomach pain for years, with no known reason, I stopped listening to my husband who believes I “put all my problems on her”. She is now on an exclusion diet for dairy intolerance, which I suspected when she was young, but my husband didn’t agree with. Needless to say, when I told her about it and my past she said, “do you believe me, mum?” I said “yes” and told her “that’s why we were trying no cow’s milk for a week”. Guess what? She isn’t sick any more. She is feeling more secure in my love and support and knows that she can tell me if something is wrong. She is no longer sick all the time, and she is a lot happier.

I have learned so much already on this journey, about myself, my attitudes, and how my behaviour can impact other people. I’m excited to be on a journey to become a teacher, but I know that I will always have a little bit of nurse in me (which isn’t a bad thing with a condition like EDS!).

Life has an amazing way of directing us where we need to go. How has your diagnosis changed the course of your life in a positive way?

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