I Feel You

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This was originally posted to my blog, Diabetes Odyssey.

Lately I have encountered a lot of diabetics who are struggling with the emotional trauma diabetes can bring. It’s normal, most, if not all, diabetics go through it. I’ve rarely met a diabetic who wasn’t emotionally traumatized by their diabetes in some way, and those that say they’ve never struggled emotionally I tend to suspect are just burying some level of hurt.

Most of the time a diagnosis of diabetes comes as a sudden surprise. You go to the doctor because you don’t feel well (or are having a DKA emergency) and the next thing you know the doctor is giving you a diagnosis of a life-altering, incurable disease.

Who wouldn’t struggle emotionally with that?

It doesn’t matter your age, it doesn’t matter if it’s type 1 or type 2, what matters is that it’s happening to you, it’s sudden, and you can’t run from it or just take some pills and be over it in a week or two.

It’s forever.

Then comes the learning. And the life changes. Learning to prick your finger several times a day, learning to poke your body with needles (if you’re on insulin), learning to eat right, learning to balance everything so your blood sugar doesn’t go too high or too low, dealing with doctor visits, lab work. Dealing with all the money and insurance involved.

Who wouldn’t be overwhelmed?

Learning about all your risks is most definitely frightening. Being bombarded with warnings and precautions over possible complications of heart disease, neuropathy, retinopathy, amputation, blindness, kidney failure…and so many other things.

“Take care of your BG or you’ll die of kidney failure.”

“Be good or you’ll go blind.”

“Eat healthy or you’ll lose a leg.”

Who wouldn’t be depressed, angry, scared?

The feelings of failure become a huge weight. Always being told to keep your blood sugar in line as if it’s actually easy to do. Every time you go too high or too low you feel like the worst failure on earth.

And it happens a lot, because it’s not easy. It’s practically impossible to have a normal blood sugar at all times when you are diabetic. No one can be perfect! If we were then we wouldn’t be diabetic!

But no one seems to understand that. So we just go on feeling like failures.

The feelings of loneliness are the worst. No one understands diabetes unless they are diabetic. No one understands how it feels, no one understands the constant work involved, and no one understands that it affects mind, body, and soul.

You just feel so alone in your suffering. But you aren’t, believe me, you aren’t. There are many, many of us diabetics out here that feel the same way you do. We go through the same struggles you do. And we’re here to go through it with you. We’re here to listen, and we do understand.

I feel you.

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@Tamra11,

Thank you for sharing your insights. You are so right, we aren’t alone! Cannot even tell you how many real panic attacks I had the first year being diagnosed. From obsessively worrying that I would drop too low without feeling it and pass out while driving my kids or getting too high with a DKA issue. To top it all off, I was just getting my bearings with my diabetes, my a1c was low which increased my fertility, when I got pregnant a little after my first year of diagnosis. My husband and I were planning on having 2 more children but 2 was the max while diabetic for me. I’m on my 2nd T1 pregnancy (4th child) last one. There is nothing more stressful in the world than feeling the weight of responsibility of diabetes for yourself and then for a little life growing inside you for which the diabetes can potentially negatively affect. I have been literally scared stupid to eat things, just strange behavior because I was afraid I would go too high and my baby would be hurt by my bad choices. Then the doctors, the doctors are bad enough on me personally, but the obgyn’s can get really crazy when it comes to that baby. All for good reason, but seriously, I feel guilty enough for having diabetes at all, why don’t you just finish me off! I feel ten times worse before I go into that office over a couple of high numbers that were most likely out of my control. I feel like I have to be scrapped up off the floor I feel so crappy.
I tell you, this diabetes will make you go crazy if you let it.
I remember the first time I used my glucogon kit on myself, I was at 40 and dropping but still coherent, just barely.
My kids were scared and standing by me (my husband was at work) while I sat in a chair in the kitchen with my phone nearby and gave myself the shot. I had my husband’s number up on the screen for my son to call him in case I passed out. For 5 months after that, my a1c was horrible because I was terrified of dropping below a certain number. In my mind, I would rather be high than low. My endo didn’t understand at all. She was clueless as to what was going on. Every diabetic should get a mental health counselor assigned to them so they don’t go insane trying to deal with this by themselves.

I’m also the first born child in my family and a harsh perfectionist so I totally get the whole BGs have to be perfect, which its impossible for them to be perfect. When I have a high number my mind game goes to, did I do this to myself ie was this my fault OR was it really out of my control. Sometimes I never know because I can’t possibly know everything and every reason why my blood sugar is high or low for that matter.

Seriously, we all need to GIVE OURSELVES A BIG, FAT BREAK! If that is possible. We are way harder on ourselves than any doctor, specialist, friend, or family member ever is on us.

Thank you for being so transparent and authentic,

Busybee

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Tamra, as always another heartfelt post that resonates!

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busybee… wanted to let you know that I have gone through this very same thing and feeling exactly what you are going through … and all of us are. The loneliness is overwhelming. My Mom kept me on a strict diet but she constantly told me that I could live a “normal life” if ONLY I would just stay on my diet. My Dad was angry that I was depressed at age 16 and said to me that he just couldn’t understand why I was so depressed. He of course had to work hard to provide a living for myself and two brothers so I was ashamed of myself afterwards and pushed it all down inside of me. At age 16 I had already had diabetes for 8 years. I married at age 18, got pregnant and gave birth to a beautiful baby girl who had jaundice at birth. Was told it was from the diabetes. At age 20 got pregnant again and 6 months out went into premature labour and had another little girls with multiple handicaps. She had respiratory distress at birth… lost some oxygen from passing twice but they were able to get her breathing again. She was put into ICU but her breathing was very labored and my husband and I were told she wouldn’t live. Three days later they decided to check her glucose (wondering what took them so long to do so) and found her glucose to be ONLY .7… that is less than a “1”. The only reason they checked it was because she was going into cardiac distress. So they immediately gave her glucagon and was able to bring my little girl back around. From the oxygen loss though she suffered many disabilites. The hypoglycemia was a by product/condition of my brittle type 1 diabetes they told me. So when they are making you feel like crap … and I know that feeling because they did it to me over and over… just know though that THIS is what can happen to your little girl/boy. It doesn’t help how it made ME feel though because I felt like it was all my fault that my little girl went through this and I didn’t need them to make me feel any worse so I know your feeling. My little girl only weighed 3 lbs. 11oz, was hearing impaired, blind in one eye and was only 15 3.4" long, suffered from many bone deformities, was classified as having Caudal Regression Syndrome, McKussicks and was unable to suck a bottle until she was almost 3 months old. I was told that I should enjoy her as long as I had her because they thought I was too naive, cared too little for myself so why would I care for her, and many other hateful things they said to me. Today my little girl is 37, lives on her own in her own condo that SHE bought, takes the bus where ever she needs to go outside of my transporting her when I can, pays her own bills and does her own shopping. She is only 4ft. 5" tall, has to wear hearing aids in both ears, glasses and yes she still has hypoglycemia but she is a little fireball that nobody messes with. Just wanted to share this with you just to let you know that I too suffered some horrific criticism but it made me stronger for my daughter whom they thought wouldn’t live long. Did nothing for my own self esteem but put that on the back burner to get both both of my girls grown. Today… YES I feel like I am nobody and did nothing right BUT I AM STILL HERE. :slightly_smiling:

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another post, that i always like,.

i love yours blog.

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@Sharona,

Goodness, my heart aches for your hard experiences in life. Thank you for sharing them! I don’t know why, but its the difficult stuff that we endure through life that makes us who we are and better in my opinion. I just don’t like having to go through the hard, painful stuff. Your story is so encouraging.
All my kids were jaundice at birth, the doctors have contributed this to 2 things, my husband’s Chinese heredity and my diabetes although they cannot explain why the diabetes completely causes jaundice.
I’m happy to report that at all my children’s births, seems to be common practice now for diabetic deliveries, nurses check baby’s blood sugar immediately. Sounds a little insane they wouldn’t think to check your daughter’s immediately. Sounds like their mistake, not yours.
I hear your story and think how on earth could you think you did anything wrong?! Seriously, you only did what was in your control. Medically speaking, a lot of your daughter’s disabilities sound like they are from premature labor which isn’t really caused by diabetes. See this is my big issue with doctors (obgyns), I love them on one hand and become easily infuriated with them on the other. I’ve met some awesome ones and some truly crappy, scum of the earth ones. Scientists don’t really even know to some degree what diabetes does cause in a baby- mothering passing on to child in womb. Some of the things doctors used to say in the past was completely untrue and made their patients feel horrible because that’s what they believed of science at the time. I have had doctors threaten me with things that never developed just to scare the crap out of me and for what? There wasn’t anything I could do other than monitor my blood sugar and take care of myself to the best of my ability.
RIDICULOUS!
You are an awesome mom and did everything you could with what you had. Taking care of children with disabilities is incredibly difficult and you did it successfully with children who grew into independent adults.
God bless you! You are somebody incredible and I am so honored to read your story.
I bet you can say that you weren’t the same way your mom was towards you, to your daughter with hypoglycemia, eh? God knew exactly the kind of mom your girls needed to be healthy and happy. You are the perfect mom for your kids, no matter what you feel your mistakes are.
Thank you,
Busybee

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So real! So inspiring! Thank you for your stories.

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Aw busybee I don’t know how this one slipped by me other than I forgot my password. Thank you so much for your encouragement. We just have to encourage one another as you are right… doctors don’t know it all but if you have a good one in your corner then treasure her/him! I do now so I am happier. I guess on my Mom she did the best she knew how to do for me. I was her only girl (two brothers) and she somehow knew how strong I had to be so maybe it was her way of “toughening me up”. She used to cry when she gave me the shots as a little girl so I know she cared. The premature labor was from Hashimoto’s that I have that wasn’t controlled back then. It should have been closely monitored but it wasn’t. The Jaundice is common among diabetic pregnancies but you are right… WHY? What is the precise medical reason? Maybe someone else knows. In any case thanks a million for answering me back even though it has been a long time ago.