Diabetes By Proxy
How diabetes can affect your life even if you don’t have it
My alarm goes off at 3am. It’s not the standard harsh beeping sound nor an alarm in response to my three-year-old’s nightmare. The alarm is a panic filled groan followed by the words, “I’m low, I’m low, I’m really low, help me.”
I provide reassuring words, make a calm brisk move to the kitchen for some cordial, before heading back to the bedroom to be my husband’s savior. I’ve done it so many times before that responding to a night time low blood sugar level can generally be done without opening my eyes, in a habitual zombie like fashion.
I’m married to a man with type 1 diabetes and just quietly, despite being a nurse when we married, I was completely naive about what this actually meant. Little did I know how diabetes would at times churn the waters in our relationship.
I mean, how could I possibly argue and win against a low blood sugar level?
How could I feel disappointed if my husband didn’t feel like eating the meal I’d cooked because his blood sugar level had been high all day? How is it possible that my empathy sometimes feels tinged with a little resentment and anger, despite knowing the burden he has to deal with every second of his day. How can I even voice my frustrations, fears and feelings about diabetes when he is the one carrying the weight of it?
But just quietly, I hate diabetes. I don’t have diabetes, but I hate it.
Herein lies my passion to validate and support those who journey alongside people with diabetes.
Research abounds on how diabetes affects those who actually have the condition, and in no way do I wish to come across in way that makes it seem like my ‘lot’ as a partner of someone with diabetes is remotely comparable to what someone with diabetes has to face each and every day. However, the challenges faced by those who live with and care for someone with diabetes are not commonly discussed, unless perhaps in reference to the parent-child relationship.
I wonder if the reason we avoid discussing the impact diabetes has on a partner is because we don’t want people with diabetes to feel responsible or to feel worse about their chronic illness. I most certainly don’t want my husband to have to carry my worries about his diabetes, as well as having to manage his own.
Maybe that explains why, when I Google search ‘my husband has diabetes,’ the forum world overflows with partners looking for support. There’s a secret community of people searching for others like them that might be able to offer simple understanding, support and connection.
I’ve often wondered if it is just me that tries to push aside anxiety when my husband is having a sleep in. I start to think the worst. Has he had a bad low blood sugar level overnight? Part of me wants to shake him to make sure he is indeed just sleeping, but that defeats the point of his sleep-in. So, I just bury my worry and then hide my relief when I finally hear him get out of bed.
Am I the only wife that wakes in the middle of the night to check on my husband if he has had a bit too much to drink prior to getting into bed? Surely I’m not the only partner of a person with diabetes that worries about the future?
Will my husband die a lot earlier than me? Will my husband have to shoulder a grave complication of diabetes like kidney failure or amputation? Then selfishly I wonder if this will stop me from living a fulfilling retirement. I try to bulldoze these internal fears, but they still crop up as potential realities I might face.
Some validation has been given to those who trek the diabetes mountain with their partners. Studies have identified numerous challenges faced by partners of people with diabetes. Partners struggle with emotional strain from the fear and distress over diabetes symptoms and complications resulting in care giver burden. In research involving 317 type 1 diabetes partners it was found that over 60% of the participants experienced some form of diabetes-related distress. It is clear that being a partner of a person with diabetes has its challenges.
It’s hard work.
It’s exhausting.
It’s emotional.
It’s unpredictable.
Yet, despite the impact diabetes has on partners, their support has been demonstrated to improve diabetes-related outcomes and optimize diabetes management.
I hope that by acknowledging the emotional burden on partners we can begin to transition traditional approaches to diabetes education and care to include and address the needs of the partners of those with diabetes.
The work and commitment of partners needs to be saluted and celebrated and I wish I could ‘high five’ all those who give of themselves each day to support someone else's diabetes journey, despite fears and insecurities.
But back to reality… Last night my husband rolled over in bed and his insulin pump cannula fell out. The extreme frustration that emanated from him, although not directed at me, made me cower.
I felt like screaming, ‘Hold on, wait a minute, I’m an unwilling participant in this battle!’ However, given the love I have for this man and knowing how diabetes constantly weighs him down, I held in my feelings, got up out of bed to retrieve a new cannula and helped him get his insulin pump connected again.
The value of the partner — it cannot be understated.
If you’re a ‘diabetes partner’ it’s okay to struggle at times. It’s normal to have fears and worries about diabetes and how it impacts on both you and your loved one.
Let’s cut ourselves some slack, give ourselves some praise, pat ourselves on the back and encourage and acknowledge our efforts, whilst we remain committed to being strapped into the ‘diabetes roller-coaster ride’ alongside our partner with diabetes.
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