Finding My Confidence To Speak Up As A Child With Chronic Illness

Finding My Confidence To Speak Up As A Child With Chronic Illness

I like to think of myself as a little bit out-spoken yet still sensitive. If something is bothering me, I will let people know. However, looking back on myself growing up, I remember being too scared to speak for myself in doctors appointments, especially as a preteen/teenager. I always let mum do the talking on my behalf. 

It was recently after a doctors appointment that I was thinking about this. I looked back on these memories of my fear with confusion, as this didn’t match my personality at all. I then asked mum if I had always been that scared to speak for myself. My mum replied that no, I had not always been that way. She told me that at the beginning of my chronic pain journey in 2007 I was perfectly happy to speak for myself and explain what my problems were, even to doctors I had never met before. I was 7 years old. I had innocently believed that as long as I told the truth, they’d believe me. That soon changed.

Finding My Confidence To Speak Up As A Child With Chronic Illness

My Journey Towards A Diagnosis

I had been complaining of constantly being in pain, so my parents got me seen by a pediatrician at the (then) local hospital in 2007. I was 7 years old and my youngest brother had just been born. At this pediatrician appointment I was told that I was making the pain up because I was jealous of the attention that my baby brother was getting. This, of course, was not the case.

The loss of my confidence was gradual, and my parents noticed that I started talking less and less in appointments every time I was accused of lying.

I then went to see another pediatrician at the same hospital in 2008 because the pain was getting worse. Again, I was told that I was conning my parents because I was jealous of my youngest brother.

We then had to move cities due to my father changing jobs. After we moved, my pain got so bad that my parents took me to the emergency room in search of help in 2009. After I was hospitalised for about a week and an investigation into my pain was done. I was then referred to the Palliative care team at my local children’s hospital. There was no apparent cause of my pain, so the doctor referred me on in the hope that the team would help manage my pain. This, however, didn’t happen. I was told during these appointments that I was not in pain at all, and that my mother had put the idea that I was in pain in my head. This was the tipping point for me, and from then on I completely stopped speaking in doctors appointments. At this stage I was 9 years old.

Being called a liar to my face over and over broke my confidence down until I just let mum do the talking at every appointment. I would tell her what I wanted to be said before we got there because I thought they wouldn’t believe what I had to say if I said it. Even as a teen, when a doctor asked me a question, I would look to mum for help. Doctors would then tell me off for not being able to talk for myself.

This just caused me to shut down further. Experiences of medical professionals doubting my pain continued throughout my preteen and teen years, and I continued to be accused of lying and faking. Of course, not every doctor or medical professional was like this, and many did believe me. However, the times that certain ones didn’t stuck with me.

After years of perseverance in finding an answer (approximately 6 years), we found out I had Fibromyalgia, and that that was the source of my pain. I also developed CRPS (Complex Regional Pain Syndrome) in my wrist during my teens. My wrist pain was also dismissed by certain doctors until an MRI was done that found bone swelling in that area.

Finding My Confidence Again

It wasn’t until I was about 15 that I decided I was determined to speak for myself again. I realised that I was suffering unnecessarily because I didn’t have the courage to say what needed to be said. I decided that I wouldn’t let ignorant people from my past affect my future. My mother and I discussed it, and while she had been encouraging me to talk for myself for years, we decided that she would now remain silent during my appointments unless there was a question I genuinely couldn’t answer. This, in a way, forced me to talk. I was uncomfortable, but I knew that it was for the best. By the time I turned 18 I had found my voice again and had regained the confidence that I hadn’t had since I was a young child. During this process I did encounter more ignorant people, however, I stayed true to myself and didn’t let that stop me from saying what needed to be said.

Finding My Confidence To Speak Up As A Child With Chronic Illness

How To Make The Most Of Your Voice

There are techniques that I have learnt that help me make the most out of my appointments. I find that doing these things increases my confidence during appointments even now.

  • If I have multiple things I want to discuss in an appointment, I’ll make a list in the Notes app on my phone so that I can go over the list during the appointment. My memory is terrible, so this is the only way I know that I won’t forget anything.
  • If I’m going to a doctor that I’ve never been to, who doesn’t have access to my GP office’s file, I make sure to have a list of all my medication and my doses with me. This makes it easier for me if I’m experiencing brain-fog during the appointment.
  • Don’t try to downplay your symptoms to appease your doctor. I have done this many times because I was worried I would be told I was overreacting after being told that in the past.
  • If appointments make you nervous, take a friend or family member with you. Even now at 19 years old, though I’m confident in speaking for myself again I still ask my mother to come along to certain appointments with me as my advocate. 

A part of me still fears that I will be called a liar again like I was as a child. Those experiences hurt me deeply, and they damaged a part of me that I’m still trying to heal. I’m lucky enough to now have a GP I like and a chronic pain physiotherapist who listens, so I don’t have to worry about not being believed as much anymore. I sometimes wonder if my pain would be as severe as it is if I had actually been listened to earlier on. Would my pain pathways have developed differently with earlier treatment? That I’ll never know.

Please, don’t let your voice be taken away from you like mine was from me. 

About The Author

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.