My time spent in ‘diabetes wilderness’

Author: Daniel's story | Posted: 18 December 2018

Daniel Newman, HR Manager at JDRF, is passionate about helping fellow people with type 1 diabetes by sharing his experiences of the condition in his blog, t1d_dan

Diabetes Wilderness – a prolonged period of time when you are not in contact with your healthcare team. It is a conscious decision which is made due to a number of reasons which can include loss of faith in the healthcare system, lack of support from healthcare professionals and a build-up of frustration. – t1d_dan

“During the years living with type 1 diabetes I can pinpoint my most difficult times. One of these was the change from pediatric to adult clinic. This is commonly known as the transition period. It’s almost like moving from primary school to secondary school.

I’ll provide a bit of background. The transition in the UK usually takes place around 17-19 years old. There should typically be a smooth handover of care from one clinic to the other and you, the patient, should not suffer. The transition should involve meetings with both your adult and children’s team for a period of time.

As a patient, your pediatric team should be preparing you for the transition for a period of time before. A good transition is vital for the continuation of your healthcare otherwise you can end up in the ‘diabetes wilderness’ just like I did.

What is diabetes wilderness?

‘Diabetes wilderness’ doesn’t refer to surviving in the Australian Outback, or in the most remote part of part of the Amazon rainforest, with type 1 diabetes. It’s a term I use to describe a period of time when I was cut off (albeit through my own decision) from my healthcare team and did not receiving the specialist advice that my body needed.

I was surviving with my type 1 based on the limited knowledge from my previous clinic visits. I knew for survival I needed to take insulin and test my blood glucose levels. 

What led me into the wilderness?

Quite simply, a bad transition period. From my limited memory (it was over 15 years ago) I remember my pediatric team telling me that I was reaching an age where I was going to move to the adult clinic. Over the months leading up to the transition, I met the adult team who seemed nice.

The upcoming change made me feel anxious and scared. I’d been going to the same clinic for years. I was used to the hard plastic chairs in the waiting room, the same toys scattered all over the floor and TV that never worked. I was used to the same receptionists and nurses. I was used to going somewhere where I was known by my name.  This was almost like a home from home.

When it was time for my first appointment at the adult clinic it wasn’t the best experience. I was scared, nervous and apprehensive. I found myself in an environment where I had gone from being known by my name to know being seen as just another patient or number. Technically, it was still my name but it really didn’t feel like it. I was now in an environment where I was probably the youngest person in the waiting room. It was eye opening to say the least.

I can’t remember the specifics of my appointment, all I know is that it was different. My next few appointments didn’t get any better and slowly but surely I lost faith in the system and felt there wasn’t the support I needed. Crucially, my trust was broken.

In time, when my appointment letters came through the letterbox, I found myself in the cycle of opening, acknowledging and then discarding the letters. A cycle that remained the same for a number of years. I was eventually discharged from the service.

I thought that because they didn’t care, why should I? I didn’t care as much as I should have. I would look after myself.

Looking after myself consisted of me taking my insulin (no carbohydrate counting just guessing) and occasionally testing my blood sugar levels. I was blissfully ignorant about the long-term damage that my lack of knowledge, use of specialist care and checking of my Hba1c was doing to my body.

Coming out of the wilderness

My turning point was my girlfriend at the time, and now wife, telling me that I needed to attend my appointments. I listened to her. I think it’s because I now had someone who truly cared for me and wanted the best for me.

Listening to her meant that my years in the wilderness slowly came to an end. I slowly came out from the depths of the rainforest back into civilisation. It took a long time for me to rebuild trust with my new team. A very long time. I was very angry and waiting for any excuse for them to disappoint and fail me.

I have a good relationship with my current diabetes team. I was fortunate to have good nurses who showed they cared. I think this makes a huge difference.

The role a doctor or Diabetes Specialist Nurse has is invaluable. They can make or break someone’s relationship with the healthcare service. You look to these people for their knowledge and support. A bad relationship can have a negative impact. Even if you as a patient is ultimately responsible for your care.

My wilderness learning

I would liken the wilderness to running on a treadmill. You run for miles and miles but still stay in the same place. It was the same for me.

I was living my daily life, taking insulin and checking my sugars (the running) but I was still in the same place. I was using an insulin regime that suited my body when I was a teenager and in my early 20’s. My lifestyle was now completely different. I wasn’t to know if I was using the right amount of basal insulin for my needs. This meant I was just staying in the same place. My care wasn’t adapting because I didn’t know how to.

When you are in a wilderness, you are on your own. This was detrimental and I am living with the consequences now.

I learnt I needed access to a team. I needed the expertise to help me give myself the best healthcare possible. Maybe if I had that one nurse or doctor who cared. One person who showed they cared and never gave up when going through transition it might have been different. I know it was my decision not to go to my appointments and I’m not blaming anyone but me.

Another learning was that with type 1 diabetes, your body’s needs are always changing. Sticking to a set routine of insulin dosage or carbohydrate ratio isn’t practical.

Hindsight is a wonderful thing. I’m pretty sure had my transition period been different, my time in the wilderness wouldn’t have come or maybe it would have at a later date. I’ll never know.

If you are reading this and think you are in the wilderness, try your best to find your way out. The hardest part is taking that first step. Trust me I know through experience it’s not easy but it’s so worth it. The time between when you last went to an appointment, and where you are now, means your type 1 needs may have changed. You don’t want to be stuck on that treadmill like I was.

I’ve rambled on for quite a bit but I could have probably gone on for much longer. What about you? Are you currently in the diabetes wilderness? Have you experienced it and now come out the other side? What made you change? I’d love to hear your thoughts and advice.”