Ninjabetic – complications aren’t just physical

A diabetes consultant suggested that for this month’s column I write about psychological support in diabetes care. I considered it and initially I was unsure of how to put pen to paper (or fingers to keyboard). My reason for being unsure? I haven’t had any personal experience in this area. My reason for not diverting to a different topic? I haven’t had any personal experience in this area…

My journey with diabetes began when I was 16 years old. After being misdiagnosed, the blow of Type 1 diabetes was dealt to me whilst on holiday in Disney Land. As I lay disorientated on a stretcher, being airlifted to intensive care, the only thoughts I could process were of the excruciating pain that I was experiencing. My only pleading hope was that I wanted it to end and if that meant that I ended too, then so be it. Reflecting back to being so young and experiencing such immense pain that I didn’t care if I died still brings tears to my eyes. And, of course, there is also the small matter of unexpectedly being diagnosed with a chronic illness that relentlessly requires physical, mental and emotional attention…

Was I offered any psychological support? No.

A few years later and I was admitted to hospital for my regular DKA short-term solution. Every six months since the year I was diagnosed I was admitted, fixed and sent home. Every six months for nine years. My mother had struggled immensely with my stubborn ways and didn’t know where to turn. She watched over me as I lay in a hospital bed, bravely trying her best to protect me, but inwardly she was frightened and alone. I was slowly destroying my body, not understanding the long-term damage and implications of my actions, and oblivious to the pain that I was causing others. She tried to talk to the staff on the wards, asking them for help, but there was none – only a short-term solution in the form of IV insulin and fluids.

Were we offered any psychological support? No.

Three years ago I was diagnosed with stage four retinopathy and on that day, while I sat alone in a cubical waiting for a procedure, the consultant caring for me arrived and said: “you’ll be blind within the year”. I underwent six months of painful laser treatment and two operations, I took six months off work and adjusted to the lack of vision as best I could until things began to settle six months later.

Was I offered any psychological support? No.

I know that ultimately my actions were my own, but often wonder how different things could have been if support was available to access

Two weeks ago I was sent a letter informing me that I have gastroparesis, another complication of my previously poorly-controlled diabetes. Although expected, the impact of the diagnosis has been profound. I have taken it upon myself to seek out the help that I need from healthcare professionals. There was no information in the letter about the illness, no treatment plan, no follow up – purely a diagnosis and nothing more. It has been a difficult few weeks knowing that many more aspects of my life could soon change. Knowing that my HbA1c may never be in a range which is safe for me to start a family. Knowing that one symptom, vomiting, will increase pressure on my eyes with the possibility that my fragile blood vessels may bleed. Knowing that my diet will drastically change, that my diabetes management needs to be overhauled and that the illness cannot be cured, only treated.

Was I offered any psychological support? No.

I don’t want this piece to be seen as a ‘poor me’ article. I know that ultimately my actions were my own, but often wonder how different things could have been if support was available to access. I want to use my experience as an example to those who have the power to make change. It is an example to illustrate what can happen to a person when they are expected to battle on with little or no help, at any age of stage in their condition. I want ‘the powers that be’ to see that this is happening under their watch and to understand how one diagnosis, one admission, one piece of bad news can quickly spiral out of control, leading to another diagnosis and another, more admissions and more bad news… We have recently had confirmation that a diabetes psychology service will be in place in Portsmouth, which is great news and shows that it is possible. And I would like to offer any help I can to work with ‘the powers that be’ to understand their barriers and try to work around them.

To the clinicians who want to prevent this from happening to their patients: print this off, send it to your colleagues, make those who commission services aware that the complications of diabetes aren’t purely physical but they are emotional and for some the effects are life changing. Whether a patient is depressed, anxious, burnt out or feeling a bit down, if it’s diabetes related then it should be recognised and approached as a diabetes complication.