The other day, I walked into my local NDSS pharmacy and collected four boxes pump consumables and a couple of boxes of blood glucose strips.
I have a lovely pharmacist. She’s friendly and chatty and every time I visit, we catch up about how our kids are going and she comments on how I seem to spend a lot of time on aeroplanes and that I need to look after myself better. (She’s also my parents’ pharmacist, so I suspect that my dad asks her to say that to me.)
While we were talking, she was packaging up my supplies and came out from behind the counter to hand me a black bag. As I was paying for them, I had a really strong flashback to the days that I worked in a local pharmacy.
I was a pharmacy shop girl from when I was 15 until I was about 20. It was a convenient part-time job – a few hours on Saturdays and Sundays, and extra hours in the lead up to Xmas – and a great way to earn a little spending money.
I remembered that there was a customer who came in about once a month and that when he walked in, the pharmacist would step down from his little ‘stage’ with all the medications and bring out the customer’s order, wrapped up in a couple of paper bags. I had no idea what was inside them, and it took me a couple of years of wondering before I finally asked the pharmacist.
‘He has diabetes. It’s insulin and other things he needs for his diabetes,’ was the answer. ‘He doesn’t like to see the different products, so I wrap them up when I order them in for him and just pass them to him. That way, no one knows what’s in the bag.’
I knew nothing about diabetes back then. I just acknowledged what the pharmacist said with a nod of my head, and the next time I saw that customer, I handed him his package without a word.
I wasn’t working at the pharmacy anymore when I was diagnosed with diabetes, but it is where I picked up my first insulin prescription. I have never, ever thought to ask for my insulin to be hidden away, in fact, the only discussion I have is lying about promising that I am going straight home and don’t need a cool bag for the drugs. Pharmacists seem to worry that the hour or so the insulin is out of the fridge while I pop into a café to grab a coffee is going to send it sour.
But apparently the attitude of the customer at the pharmacy I worked at isn’t all that uncommon. Until the change in ordering from the NDSS, I used to collect my supplies from the NDSS shop downstairs at Diabetes Victoria. This was always fabulously convenient for me, considering I worked just upstairs. The products were always loaded into an opaque, black plastic bag. I remember someone saying those bags were used because a lot of people didn’t want others to know what was inside.
All mail being sent out by the diabetes organisation I worked at was sent in unbranded, plain envelopes. Apparently some people didn’t want their neighbours – or postie – knowing they were receiving mail about diabetes-related matters.
I’ve heard countless stories of people going to great lengths to hide their diabetes. I remember a case where a house was over-crowded with sharps and diabetes waste because the people in the house refused to throw out any packaging that might suggest someone living there had diabetes. They didn’t use sharps containers because they didn’t want to go to their local council for a free one because it might mean having to identify themselves as having diabetes. And they didn’t pay for a sharps container, because depositing it at a sharps collection point would also mean saying they had diabetes.
Another time, someone called me to complain because a letter sent out by the team I managed had slipped inside the plane envelope and the logo identifying the diabetes organisation was visible through the window. ‘I don’t want people knowing I have diabetes,’ I was told angrily.
This reluctance to let others know could be a matter of people simply not wanting to share their personal health with others, which is, of course, fine. But I suspect that it is more than just that. I think that in a lot of cases there is shame involved too. For every one of us who claims to be out, loud and proud about our diabetes, there are others who still want it hidden away – people who feel ashamed, and shamed, by their condition so much so that they don’t want others to know they are affected by diabetes.
I wear my diabetes very visibly and have never thought not to. I don’t feel shame about it at all. Diabetes is tough enough as it is without trying to conceal it from everyone as well. I just don’t have the headspace to think about how to hide it away.
8 comments
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May 4, 2017 at 5:37 pm
Annabelle Leve
Yes, having been diagnosed at age 11, I was embarrassed and ashamed – I didn’t want anyone to know, and probably even more so as a teenager. My first source of shame was urine testing believe it or not. Test tubes, droppers, little fizzing tablets. The diabetes ward in the hospital stank of stale urine and I was so embarrassed and ashamed when visitors came in.
The next source of shame was carrying syringes – the same ones that drug users have. It wasn’t so much about hiding my diabetes, more about hiding the evidence of my diabetes and treatment.
Things have changed a lot now of course – blood testing, pump/pens – and I tell everyone I can that I have T1diabetes. But I wonder how much this is either an older person’s thing, or child/teenage angst about being different from the norm?
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May 4, 2017 at 7:14 pm
RenzaS
Thanks for your comment, Annabelle, and for sharing your experiences. I think you’re right about the age of the person and how we all respond to things.
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May 4, 2017 at 6:26 pm
Ann Morris RN CDE
Hi Renza,
I agree with your comments but for people living in very small communities – where there is already limited privacy it is nothing more that protecting their privacy and reducing community gossiping. X
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May 4, 2017 at 7:12 pm
RenzaS
Yes, of course! And people shouldn’t feel they have to disclose. But it is such a shame that diabetes would be a source of gossip, isn’t it? Thanks for your thoughtful comment, Ann.
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May 4, 2017 at 11:37 pm
Jeann
Well written, Renza. I couldn’t care less who knows that I have diabetes. I wear my pump on my waist band and so sometimes it is visible through my top. I don’t care. That is where it is comfortable and convenient for me. I will sit in public at restaurants, etc taking levels. This is my life and I go with the flow.
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May 5, 2017 at 12:51 am
Victoria Burns
Wow! Never realized to what point people conceal their disease – I wonder if there is a cultural element to it? For instance in the Hasidic Jewish community women conceal as it may interfere with fertility. I don’t conceal, like you said it’s hard enough managing it out in the open – can’t imagine being a closeted t1d-er!!!!!
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May 5, 2017 at 12:54 pm
Rick Phillips
When I was in HS right after diagnosis I wanted to go as long as I could without telling anyone. One day I went low during the school day and I went to the school nurse. She did not believe I was having a low blood sugar and would not give me any OJ. I stayed in the outer office for at least 30 minutes while the nursed called my mom to check.
She “the nurse” was angry and she put in large red pen “He has diabetes and he did not tell me” on my official record.
I used for one of my pieces of evidence for the Joslin award.
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May 6, 2017 at 6:33 am
Vina Jean Teague
I live in a large urban area. Once when picking up my insulin, strips and syringes, the counter person asked me if my supplies would fit in my backpack or did I need a black bag? I said a regular bag was fine for the 2 block walk home. I was then reminded that I would probably be mugged for my syringes before I crossed the first street. If my neighbors knew I had syringes, the chance I would have my apartment broke into skyrocketed. So there are other reasons for privacy.
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