There are many things in life that overwhelm you. Frighten you. Leave you wondering which way to turn. But none more terrifying and soul destroying as hearing your child say ” I can’t do this anymore, I don’t want to be here anymore”! I reflect on that part of my life as one of pure fear, heartbreak and sickening anxiety. I knew she was suffering and I was doing everything in my power to get the right help, the best support but in that moment of hearing those words, I cannot explain the shear terror I felt.
When my beautiful daughter was 13 she was diagnosed with type 1 diabetes. Type 1 diabetes differs from type 2 in the respect that a) it is an autoimmune disease b) it usually strikes in childhood c) has nothing to do with diet, exercise or lifestyle and d) most often has no hereditary disposition. A type 1 diabetic will spend their life on insulin unless a cure is found. It’s a rollercoaster of daily finger pricks, several daily insulin injections, hypos, hypers and the myriad of longterm complications. It’s counting carbohydrates to calculate insulin dosages. It’s the risk of ketones and hospitalisation due to illness or poor diabetic maintenance and then we have the mental health implications.
My daughter competed at a high level in 2 sports being rep soccer and she was a state medalist in hurdles. She trained 4 times a week and competed twice a week, so she was incredibly fit. She continued after diagnosis, however, balancing your blood glucose levels during sport is another trial and error experience. We worked with coaches and managers and this worked well for a few years. Around 5 years after diagnosis she hit diabetes burnout, a term used where diabetics knowing they have a life long chronic condition become overwhelmed with the daily management of this disease. What happened next changed all our lives.
The constant need to count carbohydrates. Having to eat when not hungry due to a hypo, therefore forcing food, often making yourself feel ill, manifested itself in an eating disorder and body dysmorphia. It started by calorie cutting and increasing exercise which lead to weekend binges. This would go on and off for months. Then it would just be binge eating. Now binge eating is NOT comfort eating, they are two very different things. Binge eating is a recognised eating disorder and is essentially bulimia without the purging. She would eat huge volumes of food in a sitting and there was no stopping her. This led to self loathing and immense guilt and it was gut wrenching to watch. She couldn’t look at herself in the mirror and was filled with self hatred. We found a specialised psychologist in binge eating who was able to help but it has taken 6 years for her to really get on top of this. An endocrinologist once told us that statistics are as high as 80% for young women with type 1 diabetes developing an eating disorder. And the statistics are very high for anyone living with a chronic disease to suffer mental health issues.
Anxiety and depression were of course in the mix. Her anxiety and panic would surge, she would binge as some form of control over her life and her feelings but her mental pain and anguish just went round and round. We tried everything and getting the appropriate support and mental healthcare is near impossible. She asked to go into hospital and I found a private facility that our healthfund covered, so she was admitted for 3 weeks. It was initially helpful but I was not happy with the “let’s just give her a cocktail of pills attitude”. My opinion, these are just a bandaid and often times cause more harm than good. The staff at this facility did not understand diabetes or the impact this had on her mental health and at one stage I sat the nurses down for a 2 hour lesson on diabetes! Very hard to find good holistic support and something this country lacks greatly. We need a solid holistic approach to support and treat those suffering.
At her darkest she would just lay in bed, hoping to sleep to escape her pain. She had no energy. There was no spark, her light had diminished, at times vanishing altogether and it was honestly the hardest time in our life. Every time she would be late home or wouldn’t answer her phone I would absolutely panic. My loving, gorgeous and spirited daughter was disappearing before my eyes and I felt like I was fighting for my life to save her. At its worst I would sleep on a mattress outside her bedroom door so I would hear if she got up. At one point her therapist said you need to watch her 24hrs a day (this was just prior to getting her into the treatment facility). I would have given anything to take away her pain, literally anything.
My girl is now 25 and she is still on a bit of a rollercoaster but she’s in a much better place mentally and spiritually. I know when she’s not right and she knows she can always talk to me. Truthfully I believe she is one of the strongest people I know. She has fought her inner demons, waging a daily battle which is exhausting. Through all of this she still needs to manage her diabetes which if blood glucose levels are high her mood is affected greatly. She has taught me so very much and inspires me each and every day, with her courage, her inner strength and the beautiful heart she has. She is an incredible human being. She works with troubled young kids which is difficult work, often dangerous and very emotionally demanding but she has something special to offer and an amazing ability to reach these kids. She’s such a blessing.
Journey’s like this teach empathy. They teach you gratitude. They teach you authenticity. They teach you the reality of unconditional love. They also teach you to never judge another. To never assume you know what someone has been through or is going through and to never, ever minimise someone else’s pain. Nobody else has any right to “rate” what or how someone else is feeling. Especially when they are ignorant to the illnesses they may suffer.
My daughter has encouraged me to follow my passions. She has made it clear that my years of selflessness need now be directed on my own dreams and goals. I could not be more proud or more grateful to have this ray of light in my life. Her gift to me is the lessons she has taught me, which is one of faith. One of hope and one of enormous courage. She is the reason I now take these next steps forward, into a new direction of using what I have learnt to help people.
“You cannot swim for new horizons until you have the courage to lose sight of the shore”.