Since I was diagnosed with type 1 diabetes two years ago I have not made it very easy for those trying to help me. I have needed to form relationships with health care professionals and I haven’t always wanted to do this. It’s not that I’m a difficult person; I feel I’m quite friendly and easy to get along with. But when I’ve been forced to meet new people, following my diagnosis of type 1 diabetes, it all became a bit too much.
This happened within a few months of being diagnosed; I didn’t want to speak to any of the diabetes specialist nurses. I could barely process everything that was happening and most certainly did not want to follow a new daily regime. It was so easy to ignore calls, refuse to speak to anyone. But the nurses refused to ignore me. They found a way to communicate to me via a friend and with time I was able to start speaking with them and eventually attended a much needed face-to-face appointment.
After being diagnosed I was thrown into a new world; a world that was completely new to me. I had to learn what type 1 diabetes is, how it would affect me, what I had to do, what I had to take, who I had to contact, appointments I had to attend, information I had to record, measurements I had to count, what may happen, what may not happen, who does what, what is important…I really could go on but even typing this is becoming a little boring. This is something I have to deal with on a daily basis.
A friendly introduction, a smile and genuine compassion from healthcare professionals (HCPs) is what really helps me. For me it’s important that my views and concerns are listened to, and I’m given time. I like to be referred to as a person, as Kelly. Whilst I am type 1 diabetic, the condition doesn’t define who I am. There is so much more to me. I also work, I have hobbies, I have relationships, and I go through difficult times just like anyone else.
As a patient I also need to remember there are many ways that I can help my nurse, GP, consultant & dietitian to help me. I realise I also need to be clear with my expectations. I need to be open and honest and am working really hard with this. It’s easy to hide behind a smile to disguise how I am really feeling and I fear sharing the daily worries. It’s difficult to allow others into your life, expose your vulnerabilities, but I need to try in order for me to gain the help and support I need. This is something I will continue to work on as long as I have the support and continue to build trust with my team of HCPs.
I had a few weeks of consistently high blood glucose levels and at one point actually felt that I would throw my pump out of the window! Sod off diabetes and take your stupid piece of equipment with you! I spoke to my Diabetes Specialist Nurse (DSN) and told her this – I really didn’t care anymore. I like to think I wouldn’t have launched Penny the pump and the response from my DSN may have prevented my pump ending up in little pieces in the road. I didn’t expect the response I got:
“Please just let me know when you are going to do this as I will come and stand outside the window to catch it.”
Did she actually just say that?!?
For me this was a turning point in my relationship with my DSN. I felt she understood me and was able to recognise how I was feeling, how I wanted to deal with the situation and how to respond to me. Most importantly her message was clear. She wasn’t going to give up! Her response made me realise she cared and understood me. Had she really taken the time to get to know me? Yes. Yes she had. She knew what I needed to hear. She recognised I was struggling, provided a listening ear, gave me time and treated me as me! The consistent care and genuine concern gained my trust.
So what I’m trying to say is my DSN has been fantastic. These simple things may be all it takes to help a patient, change their way of thinking, how they see you and more importantly build their confidence to manage their condition.
Read the full version of Kelly’s blog here.