Window seat on a Qantas flight back to Melbourne after a busy few days at #ADC19 and to say that I am exhausted doesn’t touch the sides of how I am really feeling. It’s been a busy conference, but then, when are conferences not busy? I’ve spoken to a lot of people, sat in a lot of meetings, heard a lot of sessions. But that’s just the usual way conferences go.
My exhaustion started before I even got in a cab to the airport on Monday. And really, that exhaustion isn’t just about the sore legs, the lack of sleep or the mental overload of trying to digest stats and presentations, or wandering around a huge conference centre.
I’m so burnt out right now. Not diabetes-wise; advocacy wise. I’m weary. And I feel so, so beaten that I almost ache. I feel like I am at the edge of tears a lot of the time because everything feels like such an effort.
This is a challenge when working in, while living with, diabetes. Even when my diabetes is impacting as minimally as I could ever hope it to (thanks to the Loop god/esses again), the big world of diabetes is there in a way that, at times, crushes me. I used to feel like this a lot more when I had to spend so much time justifying to co-workers the value and importance of the work I and my team were doing. That’s not the case now, but there are still times that it all does feel like it is too much.
And when I feel like this, things that usually would barely be a blip on the radar are weighing me down. I usually am ready to take on whatever is thrown at me, or whatever I see that needs the PWD voice to interject, but right now that actually feels like a burden. A relentless burden where my efforts are misfiring or yielding hardly any benefit. The fire that is usually ignited in my belly feels like instead of fuelling my enthusiasm and passion is instead giving me heartburn.
Right now, being in this advocacy space is making me feel hopeless. I know that there are always allies that truly do believe in what I believe in – the value of the PWD, the need for us to be heard, the value and vastness of our experience and expertise.
But the voices of those who don’t necessarily feel that way are especially loud at the moment. It’s the HCPs who still (STILL?) question the right for PWD to be wandering around and on the stage at diabetes conferences, the comments about how the value our lived experience doesn’t equal the weight of scientific evidence, the messaging that I keep seeing everywhere I turn that misrepresents diabetes and actually does PWD a disservice. It’s the idea that others think they can dictate to PWD how we need to see the safe places we have created, or tell us that because they can’t back up with data when we say a technology, or a service or a program helps us, it is not valid or deserves funding. It is being confronted constantly online and offline and at every opportunity, when really, if we say we feel a certain way about living with diabetes, we actually do have the right to have that unchallenged.
And right now, I don’t seem to have the energy to try to counter that.
I tried to explain to someone the other day why I rarely let something that I see as being negative towards PWD go by. I know that it would be easier to ignore a lot of the crap and let it just slip by. I know that being angry is tiring. But that isn’t enough for me to not respond.
Usually, I have the resilience and robustness to address whatever the issue, and then whatever gets thrown back at me. I don’t think that I am the only one who can do this, but I do know that often I am one of the few people who actually is at the table while it is happening. Once, where I was the only PWD in a meeting of HCPs someone told me that I didn’t need to have an opinion on everything and I pointed out that actually, as the only PWD in the room when others were making negative comments, I actually do. And that it was in my position description, so I was simply doing my job.
I am tired. I really am.
Having my tribe around me this week has helped – it always does. But even with this support, and the laughs and the knowing looks and the understanding, I’m feeling beaten. (I am so grateful to have had them around this week…I’m not sure how I would have otherwise coped…)
I know it’s a phase but this time I don’t know how to locate the strength I need to get back to where I like to be. Or to push down the doubt and imposter syndrome that shoots up alongside this sort of advocacy burnout. That’s what happens – just as with diabetes burnout – we start to second guess out efforts and wonder if what we are doing is enough or really has any point. There is a point – I know that. There has to be. Because the personal investment is vast and really, there is no other choice but to keep on keeping on.

Grateful for my tribe.
10 comments
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August 23, 2019 at 6:05 pm
Alex Erskine
Do turn off (to the extent you can); enjoy an hour, a day, a week of HOLIDAY; and chocolate! We PWDs need your advocacy!
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August 24, 2019 at 12:36 am
Jeann
Sending you lots of hugs, Renza and a shoulder to lean on.
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August 24, 2019 at 6:02 am
Cathrine
Wish I could be there for you. You give us all so much with your honesty about living with D.
Saw my endo this week. He has no interest in anything I have to say. Just cuts me off and shakes his head in disapproval.
I want to shout, “I USED TO BE SOMEBODY. I’VE DONE WONDERFUL THINGS WITH MY LIFE! I’M MORE THAN THIS!”
I actually feel sorry for him because he has no idea what to do for any of us.
You could always take a gap year! : )
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August 24, 2019 at 10:07 am
StephenS
Wow, I completely understand how you feel, and I wish I could make it suck less. I can tell you that there is an ebb and flow to these things, and I suspect your outlook will improve over time. I’m grateful you’re in the rooms you’re in, because there are a lot of them that a lot of us can’t get into. And you are making a difference, even if it’s not always among the people who most need to listen to you. Thank you for your honesty. #IHearYou
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August 24, 2019 at 10:49 am
Min
Renza! You are a gem, albeit a very burnt out gem, you need a break and I have wondered how you navigate all of this without crashing your diabetes into a brick wall. its time to do nothing but wrap yourself up in a blanket on the couch with movies and nibbles and good coffee. You make an amazing difference Renza. I know what it feels like to be a person who has morals, who believes in equality and fairness for all and I know what its like battling people who have power that they misuse, its the most frustrating and exhausting time trying to get someone to understand your clear as crystal understanding on living with diabetes or living with any challenging quandary. I find this across the board with people not just on the topic of diabetes. Life is full of hierarchy BS, so high they cant get their heads out of their stuck up butts and see things from ‘a real’ persons perspective….on a human level where there are actual feelings, real knowledge and harsh experiences and lots of fears and hopes and dreams. I have total regard for people who live with challenges and no regard whatsoever for what such people put us through in the system that was established to help us. its questionable at times whether it does help. Take a break and gather up your usual strength. Best wishes.
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August 24, 2019 at 1:05 pm
Rick Phillips
We have “this who are you in Arthritis” as well. I think it is worse in the Arthritis community. But I get it. I have seen the awful dismissal we as patients receive. We have to remember, it is still our disease, we hire them to help us, not the other way around.
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August 24, 2019 at 3:18 pm
Min
spot on Rick Phillips and a perfect reminder that we do hire them and can also fire them. x
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August 24, 2019 at 4:34 pm
Jo Sader
Well said Renza, having spent some time in other industries I think it’s fair to say that healthcare has a long way to go in being “consumer centric”. Keep advocating, it’s the only way that value can be created for PWD. It helps those working in the space develop true insight. Better value means better outcomes for everyone.
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August 25, 2019 at 1:38 pm
Bernard Farrell
I hope for your this passes before long. Take time for yourself and relax. Hard to do I know. Let me know if there’s anything I can do from afar.
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August 30, 2019 at 1:05 pm
Glenda Maddern
Appreciate you Renza
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