Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?
I wish they could see the really bad days so they realise that yes they are that bad. I wish they could see the greasy haired, purple eyed, gaunt and exhausted me that can’t muster the energy to put clothes on because my stomach won’t stop churning and my head won’t stop spinning. I just wish they could observe normal every day things that are made harder because you’re that second slower, that wee bit sluggish. A blood sugar level can be great and a diabetic can still feel like shit and that is the sort of thing that I wish the health professionals could really see. Instead it feels like they very much think diabetics can do everything everyone else can ALL the time and we just need to do we as we’re told and trot off. It isn’t like that. Sometimes you can do everything and more and some-days you’re that bit sluggish.
I wish they could see the test strips that follow me around my life and constantly fill the bottom of bags and feel that embarrassed feeling that creeps up every time I see a used strip that has escaped the bin. I wish they could see me shipping and seeing beautiful bags and walking past because I would never be able to fit my purse and testing kit into it. I wish they could feel that bitter feeling. I wish they could see the arguments about taking up too much space with supplies, getting my stuff mixed up with mum’s and the policing I face every day over where I happen to have left a piece of my diabetes kit. I wish they could feel that shame and anger. I wish they could physically see me trying to fill in a blood glucose diary and being brought to tears at how helpless I feel at the numbers none of us can fix right now. I wish they could see me try and fail to read a book. I wish they could see me get confused at what is happening in a TV show. I wish they could see me getting upset because I need to walk my dog but the rules say don’t move I’m too high. I wish they could see the abuse I take from family saying I’m too uptight when I’m just trying to do what I’m told. I wish they could see just how much SPACE in my life is taking up diabetic STUFF like pens, kits, diaries, tablets, insulin, needles, lancets, strips for this and that and the next thing and then glucose tabs and lucozade and never ending trails of THINGS that have to be remembered.
I wish they could see that it isn’t always possible to have someone with you when you’re hypo and sometimes they just leave you anyway because they think you ‘should’ be able to handle it. Sometimes you’re not in a good enough mindset to stop eating after 20g of carbs. You can’t think, you can’t process, you can’t rationalise their rules. I wish they could see someone trying to function after a blood sugar of 27. I wish they could see someone trying to work after experiencing that.
As for what I don’t want them to see. I guess I don’t want them to see that I don’t change the needle on my pen every single time because even that bigger bag I bought aint big enough for everything I ‘should’ be carrying about. The rest is open. Sometimes I’m a diabetic mess. A lot of the time it stems from how health professionals have acted in the past and the mentality they imposed on their patients. I want them to see that. I want them to see the results of their own stupidity. I want them to see people freaking out over blood tests and thinking one high is the end of a leg because that is what they were told growing up. I want them to see people crying in doctor’s offices because the strain of being a diabetic has caused something in their mind to give and now they are anxious, depressed or something else. Health professionals like seeing where they did things right, blaming patients for not following their rules when it goes wrong, and frankly it is time for them to have to confront the consequences of THEIR fuck ups.