Sadly this week, time just hasn’t stretched enough to allow a blog a day for Diabetes Blog week 2015. The scant 24 hours in the average day mean that I barely have enough time for everything I normally need to do, and this week in particular has been manic as the excitement revs up for next week’s #NationalEosinophilAwarenessWeek. I have grabbed 5 minutes here and there during coffee breaks and lunch-times to read what other dia-bloggers have had to say on the subjects of “Keeping it to yourself” and “Cleaning it out” and I’d heartily recommend a visit to Bittersweetdiabetes to peruse these thoughts for yourself as they really are worth a read. However, today’s topic of #Changes struck a chord, not least because we’re about to embark on our own battle to change the awareness of another invisible illness, EGID and I wanted to blog my thoughts today.
The past 3 decades of life with T1D have seen a metamorphosis in my attitude to it: I coped at the start; rebelled in my teens; became resigned to it during my 20s and in my 30s I have learned to embrace the lessons it has taught me and have relegated any other emotions to the back of the metaphorical cupboard of my mind. As the next decade of my life comes ever closer, I’ve no doubt that attitudes will continue to change and that is something I look forward to embracing in a way that I now find myself able to do like never before. The daily blood tests and injections are second nature to me and it’s not until I feel the curious gaze of strangers as I push the syringe needle into my leg/arm/tummy* (*delete as appropriate) during a coffee break with G at Costa or dinner out with the family, that I’m reminded that it probably isn’t a sight that most people see on a daily basis. It has become, by necessity, an integral part of me and I am as oblivious to it as I now am to the tube that is stuck to the side of M’s face.
T1D is my partner for life and I’m okay with that. All of the dramas and rollercoaster emotions I have experienced along the way have given me the huge advantage of immense insight and understanding of the frustrations of my own pair of mini superheroes, M and G. When M has been sobbing on the floor because of a profound sense of despair and a feeling of hopelessness, I can honestly tell him that I know how it feels because I’ve been there and battled those demons myself. I can empathise with G’s struggles with her own restricted diet and the temptation to cheat because I’ve done it and ended up in hospital as a result. I know that sense of isolation that overwhelms because it seems as if there’s nobody else nearby who’s going through what I’m going through in the here and now, and I know that however dark it might feel right now, there really is light at the end of that very long tunnel.
My parents were huge advocates for research into Juvenile diabetes and were involved for years in fund-raising, awareness events and medical research into T1D. A few months ago, I was talking to the Dad of M’s friend F, who has T1D, on the subject of the current developments being made in diabetes research and the search for a cure. I am genuinely excited about the prospects of a major break-through that might see a more permanent cure becoming available, but found myself honestly admitting that, whilst I am excited for what that would mean for F, for J (another T1D friend of M’s) and for Pumplette, I am no longer concerned about the implications for me. My focus has shifted and I have a new battle to fight – as an advocate for my son and his challenging life with EGID. That, I believe, is the change of becoming a parent and just as my own parents worked tirelessly to support me through life with T1D, I found I have learned well from them and am hopefully just as dedicated to supporting M and G as they find their feet in the world of chronic illness.
That’s my change, but there is another change that I feel is very much worth fighting for: a change to the understanding of T1D which is so sadly lacking in the public eye. Mike is well-used to hearing me shout in outrage at the television or radio whenever some well-meaning, but inadequately informed journalist or personality talks broad-brushstroke about “diabetes” and dumps those of us living with the epic failure of our pancreas to do the job it was designed to do in the same boat as those who have made lifestyle choices that have led to T2D. Both are difficult to live with, of that there is no doubt, but the lack of clarity about the differences between the 2 conditions can be devastating for all concerned.
I did not choose to live my life accompanied by T1D, just as my parents did not choose for me to become so ill that living past my 9th birthday looked touch and go for a few dark hours all those years ago. There are choices about my T1D management that I would change with the benefit of hindsight and I would rather have not even had to make those decisions, not just in the first place, but ever; and yet T1D arrived uninvited on our doorstep and we had no choice but to accept it, learn to tame it and eventually become comfortable with its presence in my life. There is no reason, in this day and age, for there still to be so little understanding of the differences between the 2 types, nor so little regard for how this lack of distinction can impact young lives. It is only when real change happens, when education improves so profoundly that there is proper understanding about what T1D is and why it happens, that those of us with it can sit back and breathe a little, knowing that that’s one less battle to be fought and that we can expend our energy on the important things in life, like continually working on preserving the best health we can, both physically and mentally.
Even more importantly for me, such a massive turnaround in the portrayal of diabetes in the media will signal a promise for things to improve for M too. After all, if this is the state of affairs for a well-known condition such as T1D, then what hope is there for those of us battling to promote better understanding of the unknown ones such as EGID?