Diabetes. It’s taboo.
Mental health. It’s taboo.
Put it all together… and what do we have? Our current situation in diabetes, healthcare, (and society in general). And maybe- well probably- my situation.
We have a world where when asked “how are you?” you are supposed to say “fine” or “well” or “great.” You aren’t really supposed to be honest if indeed you aren’t okay- except in those rare occasions where you have the golden people in your life who want the real answer and know if you aren’t being truthful (shoutout to those wonderful souls).
People don’t understand either. There are myths about both. There is shame around both. There is stigma everywhere we look. There are insurance issues and advocacy issues and access issues. (The list can go on)
And not enough people are talking about them and being honest. This isn’t some rare thing out in the world, yet- there’s a lot of radio silence.
Put the two together, and we have a double whammy.
No one wants to talk about either of them- we have to remember the voices we are hearing in the community are just a small percentage of the actual people in the community. So many people aren’t being represented.
No one really talks about the two together.
So yet again- I’m finding myself and many others getting talked at…. without little input from us… Hearing a healthcare provider tell me to “get over” the OCD part of me that is tied to my blood sugars… Do you think I don’t want to? or that I’m not trying?
and not a lot is done for it.
and apparently burnout means giving up to some people…
and not enough people are educated on either or the two together.
and there are some resources for kids- but what about adults? (well mental health is still limited)
and what about resources for loved ones? Siblings, friends, parents, caregivers, significant others, siblings, etc.
Now there is talk that if diabetes wasn’t a thing- neither would mental health for people. (but recently I talked to someone and they shared that it is important to keep this in mind- but shouldn’t be the end all be all- I guess I’ll see where the research goes?)
Why isn’t mental health just an automatic part of care? and not just for a chronic illness or a not so great life event?
And not just at diagnosis (or the time of the event) but later- because people aren’t always ready- and from what I’ve seen- people need it later on most of the time)
Especially in the teen years. speaking of which…. Apparently teens are rebelling and they just don’t want to take care of themselves- but maybe mental health is at play? Maybe it is actually typical teen behavior (which I understand can be scary)?
But we shouldn’t be silent. We shouldn’t let people talk about us or at us without joining the conversation. When we google diabetes and mental health- more should show up- especially so that people can have the moment of me too’s. (I recently googled and was a little saddened at what I saw- and a lack of blogs especially or the same voices again and again).
So you should share your story- at least what you are comfortable with- it can take time to do so and you don’t have to share it all- I spent a long time not being honest- but it’s what I’m working on.
Hi- I’m Mindy- there’s a lot to me. I have Diabetes, ADHD, Anxiety, and OCD, but I am not ashamed. I do not “suffer,” I conquer and thrive (maybe with some bumps along the way). I am proud of who I am. It makes me who I am. It makes me stronger. I am thriving. I am more than those labels. But I will not be silent and pretend that they aren’t a part of my life and identity. Medication is looked at with shame- but I take it for anxiety and ADHD. We don’t talk about it enough. We hear that “It’s all in our heads. Suck it up. Get over it.”
I freak out for no reason. I can barely pay attention some days to save my life. Late at night I have to make sure my mind doesn’t spiral. The domino affect really impacts me- I get upset or stressed about one thing and then it spirals from there. When my BG is above 200, the OCD tells me to check it every 20 minutes AND constantly look at my CGM- which makes me fight against not rage-bolusing. At one point this spiraled into over 18 different basal rate patterns, and it took me a year to get down to 8.
If I’m especially stressed or upset, I have to check all of the time especially if it is out of my normal routine. Finals and difficult times of the year- are a struggle. I don’t have a certain number of times that I need to check- it is until I feel satisfied- Did I lock the door? Sometimes I walk out or away and have to walk back- and turn the nob again and again- when I was in a dorm- I’d ask hall-mates to check and text me. Let’s just say- I barely use a straightener now, and I am so glad- because that one was the worst- I started taking a picture of it OFF and UNPLUGGED so I wouldn’t look again and again. Oven? Toaster? Coffee maker? etc etc. Anxiety medication has definitely made this better.
Every time, I get up and leave- I HAVE to check my surroundings again and again- usually looking at the “key items” in my bag to prove to myself I have them- I have missed getting off of a train because of this- phone, ipod, keys, CGM, insulin pump (even though it is attached)- CHECK.
Sometimes the anxiety swallows me whole, and I have to fight to pull myself out- often happening at night.
I’m also a fighter. I am on a journey and have no idea what I’m doing. I have a past that creeps up sometimes, but I am resilient. I have a lot of self-doubt and self-esteem issues- but I’m working on it. I struggle to ask for help due to my pride, but I’m not ashamed of asking for help. I’ve been to counseling several times- sometimes it’s worked. sometimes it doesn’t. I get angry that the diabetes community points fingers at each other- we’re all in this together. I know that my BG plays a role on my mental health- which is why I strive to manage it the best I can. But that my mental health also impacts my BG. And sometimes there isn’t really an impact. I get upset that people treat diabetes complications as failure- or that someone didn’t try or care enough- or it’s the end of the world- people are thriving. I get upset that people with diabetes get talked at- can we change that? Advocacy and survival mode can be exhausting. I’ve seen first hand that mental health can impact my diabetes. I learned the hard way, but self-care is a must. I’ve had diabetes burnout- and had moments of I hate diabetes- but that doesn’t mean I gave up. I was tired. I go a million miles a minute and sometimes run myself into a wall. If I don’t write something down, I forget. If there are a million parts or many ways to start- I never know where to start or what to focus on. I lose track of time. I also get into tunnel vision. I have an alarm for all of my medications and lantus and when to go to bed or to leave somewhere. Which lets talk about the fact that I get really anxious and upset if I’m running late, but when the ADHD got worse- this became a constant internal battle. I can never keep my room clean.
I’ve also worked really hard to get better at some things and know my triggers. But there are still more triggers to discover.
I’ve been hurt and probably have hurt people. I’ve known pain. I’ve lost people. I’ve had things happen that I didn’t want to happen. I didn’t know where I fit in. Sometimes I really miss my dad, but I’m also grateful for all of the memories and lessons I have.
Sometimes I have good days- sometimes I have bad days- Sometimes they are neutral.
I have a hard time asking for help. I don’t have a great relationship with my blood family, but I made my own. I’m trying very hard to do what’s best for me even when people don’t agree. I love my tattoos. I’ve made bad decisions and had bad habits. Food is always a struggle.
I’m always changing and experiencing things and happy to meet new people.
I’m grateful for the people I’ve met along the way- who have impacted me- even the ones that didn’t stay.
But at the end of the day- I’m still me- interwoven with the good and the bad and the I have no idea what I’m doing.
Mental health and diabetes- so taboo. But many of us are living with both of these every day, and even if you only live with diabetes- mental health is still important.
I’m trying to navigate this thing called life and making sure that people know there’s more to the story. Don’t let anyone belittle your story or experience.
Shoutout and photocred (of me among some of my favorite self-care methods (rafting) to the amazing Edward Fieder that amazing diabadass behind The Faces of Diabetes. (Check them out!)
Hey you! Yes, you!
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