I couldn’t have come across this at a better time. Thank you.
Having had T1D for 25 years now, I get hung-up on what I could have done with my life had I not gotten diabetes. When I was 13, there was a lot of flooding around the town I lived in. I had to wade through chest-high flood-water and was guiding a inflatable raft with my mom and sister on it, so we could get to our car parked along the highway. A month later, I started loosing weight and not eating as much. By December, I was diagnosed with type 1 diabetes. I honestly believe something in that dirty flood-water triggered my immune system to kill off my Beta-cells. There isn’t a day that goes by that I don’t regret wading through that water.
So, I compare myself to what I could have been, and get really depressed about how much of my life (atleast 1.5 hours/day) I’ve been forced to devote to managing my diabetes. When you carry a burden like that, you are pretty much condemned to mediocrity. The reality is that you’ll have to work twice as hard as other “healthy” people to obtain the same level of success in life.
Hey Jess. I go through periods when I feel and think EXACTLY the way you have described. The last two weeks have been like that. But two days ago I learned about TypeOneNation and this site. It doesn’t change the fact that I have T1D or that I have to deal with it all day, every day. It sucks.
It DOES, however, help to know that the people here are going through the same thing and that we all have our rough times. It gives me encouragement to know that I’m not alone. I understand that staying negative isn’t helping AT ALL.
So right now, I’m going to take some of the advice that has been offered, get off my ass and go swimming for the first time in a month. I’m pretty sure I’ll feel better about life when I’m done. And then I’ll check my BG, take insulin, eat and REPEAT over and over. That’s what I have to do to stay alive and healthy. That’s what ALL of us T1s have to do. It still sucks though.
Thanks to everyone here for the words of encouragement and support. Peace.
Hi, Jess @MrEntropy.
When I read your post several days ago I was really struck by your pain. And, to tell you the truth, the pain in your post was a bit overwhelming. I had to close my browser and walk away from the computer for a while. I came back to your post several hours later and composed a reply; I didn’t post it. My reply simply failed to communicate what I was perceiving.
I believe that I have finally processed what I perceived in your post. And what I perceived was tremendous “grief,” grief about what “might have been.”
Before I go any further in my response to your post, I want to share a story. This is the story of a woman I did therapy with more than thirty years ago. It is a story of trauma and grief, much like your story.
The woman I am referring to was a pretty thirty-two-year-old black woman who had worked in an underground mine. When I began therapy with her she always wore turtleneck long-sleeved sweaters, even in the heat of summer.
It was unusual for a black woman to work in an underground mine. Especially a woman who looked like she ought to be walking the runway in a fashion show, rather than wearing steel-toed boots, khaki pants, and a khaki shirt, in a hot, dusty, underground extractive mine.
What made her story even more unusual was she was trained as a power engineer. In the mid-1980’s, hers was a very unusual role for a black woman.
To say the least, many of her white co-workers didn’t like having her working underground. She was the subject of racial and sexual harassment. But she was bound and determined to work her job as the competent engineer (and person) she was.
One day her supervisor told her to move a 5700 Volt, three phase power line from one mine tunnel to another. She was told that the boring crew needed to move a machine and the power had to be moved. As was standard procedure, she asked her supervisor if the power line was disconnected. He assured her that it was. As it turns out, the power had not been disconnected.
My client put on her required protective equipment. Then, as she touched a wrench to the first connector, the 5700 Volts arced through her left arm and out the sole of her left work boot. The arc burned the flesh from her upper arm leaving the bone of her arm exposed. The arc knocked her unconscious and threw her across the mine shaft.
Over several weeks the woman explained to me that she hated to look at her arm. She had undergone repeated surgeries, first to graft muscle back on her bone and, then, to cover the muscles with skin. Her skin grafts had lost their pigment. She was obviously disfigured with blotchy white skin grafts running from about her left elbow up her arm to the base of her neck. The grafted muscles gave her arm a very unnatural shape.
The client told me she wore long-sleeved turtlenecks to keep people from staring at her arm. She eventually admitted that the turtlenecks helped her “ignore it,” too. As we talked she told me she had withdrawn from all her friends and family. She had ended a long-term relationship with her boyfriend. She eventually said, “I guess I just want to be alone.”
I explained to the client that I felt she was experiencing a combination of post-traumatic stress disorder and “complicated grieving.” Over a period of several weeks we began to “unravel” the emotional effects of her trauma and made good progress. At the end of a later session I asked her to wear a short-sleeved shirt to her next session. I encouraged her to wear a light jacket over her shirt so she wouldn’t have to worry about people staring.
When the client came in the next week we chatted for a minute, then I asked her to take off her jacket. She was very hesitant, but, given that she trusted me, she revealed her injured arm. We chatted for a couple of minutes more and then I asked, “If you were to talk to your arm, what would you say to it?” In a moment she began to cry as she looked at her arm and “told” it how it made her feel “ugly” and disfigured. She told her arm it had “ruined her life.” Through her sobs she repeated many of the things she had told me in earlier sessions, this time addressing her frustrations to her arm. In a few minutes she fell quiet as tears continued to stream down her face.
After a few moments I asked, “If your arm could talk, what do you think it would say to you?” She began to sob openly, and she then began to describe the pain of being burned, her loss of consciousness, and the smell of burning flesh that she still couldn’t get out of her nose. She then described the pain of months of repeated surgeries and the persistent fear that she’d never use her arm again. After several minutes she fell back into silence as tears continued to stream down her face.
In a moment I asked, “If the electricity had arced to your chest, what would have happened?”
She looked up and said, “It would have killed me!”
I then said, “So your arm insulated your heart from the electricity? It got between your heart and the live voltage?”
She looked puzzled and replied, “Well, yes.”
I then said, “So your arm saved your life?”
Suddenly she began to sob and rock back and forth. She began to tenderly rub her disfigured arm and soon began to say to her arm, “You saved me. You saved me. You saved me. I’m so sorry I’ve been so mad at you. You saved me. You saved me. You gave yourself up for me. You saved me.” She continued to rock in her chair, rubbing her arm and crying for several minutes more. Then she fell quiet again.
It was time to end our session. I gave her a few minutes to compose herself and asked, “Are you okay to end for today?” She looked up, smiled, and said, “I think I am.”
Then the most interesting thing happened. She stood up, threw her jacket over her right arm, grabbed her purse and walked out of the office. A week later she came back for her next session wearing a sleeveless blouse. We continued therapy for three more weeks and then this marvelous young lady announced, “I’m ready to start living again.” I wish I knew how she was doing today.
Jess, here’s the point of this post. Grief can sometimes get “complicated.” And, for some, grief is brought on by “trauma.”
Now, a “trauma” can be a specific event, like being electrocuted by 5700 Volts and losing the tissue off of an arm – that’s an “obvious” trauma. And we are all aware that people who fight in wars can experience trauma and then develop Post-Traumatic Stress Disorder (or PTSD). But a diagnosis of a chronic medical condition, like T1D, can also be a “trauma,” and it can lead to development of repetitive and “intrusive” thoughts that cause us to feel depressed and “steal” our life away (i.e., “condemn us to mediocrity”).
I believe what I perceived in your post was tremendous “grief,” grief about what “might have been.” And I wonder if that grief is the result of the trauma of your diagnosis of T1D.
You don’t have to live this way forever. I would encourage you to talk to your physician and see if he/she is aware of a competent therapist who is skilled in treating grief that results from diagnosis of a chronic illness. That may help you begin to ease your depressive symptoms, and help you begin to pursue a life that is more like what you hope to have.
Will it be easy? No. It’s a boatload of work to live life well, even if you don’t have diabetes. The only way to find out if you are mediocre or not is to, first, begin to resolve what appears to be trauma-induced grief and, then, work your butt off at living well. I’ve been living with T1D for more than 60 years now. I give it 15 minutes a day. That includes any diabetes-related negative thoughts. I hope a competent therapist can help you develop a similar way of life. But the only way to get there is to pick up the phone and make an appointment to visit with your physician about your depressive symptoms. Then begin therapy with a competent therapist.
If you don’t try, mediocre wins.
Best of luck to you!
Thanks for the advice Bill. I’ve pushed myself really hard to get where I am today. I’ve gotten to the point where I find it difficult to care about much anymore. To be honest, I’m exhausted and burned-out on my career, my diabetes, my marriage, everything. What do I get for all my hard work? I get shit dumped on me on a daily basis, and very little respect or appreciation from my boss/coworkers and family. I am stressed out and feel like crap half of the time because I can’t get off the T1D BG roller-coaster. I try to put on a happy face and not complain too much, but I’m really starting to lose it. It is getting harder and harder just to get out of bed in the morning. I’ve talked with a therapist before, and tried getting on anti-depressants once before. I don’t really like the idea that I have to talk to a therapist or might need meds to be happy, but I don’t like where I’m going, and need to change something.
Thanks again for chatting.
Sounds like there are several layers to your frustration (but you know that). As for the BG roller-coaster, you seem well aware that that effect can really exhaust you, and can make your mood pretty funky. If you can find a way to get it to “smooth along” at, even as high as 140mg/dl, you’ll likely feel a tad better, and you’ll have more energy. But you know that, too.
Sometimes you just have to get really frustrated with things before you can finally find the energy to yell, “STOP!!,” and then make some changes. I hope that you can help yourself do that. It’s no fun feeling as bad as you seem to.
I wish you the best!
Hey Jess. I can certainly relate. Have struggled with depression/anxiety for YEARS!! Then DIABETES! WTF! This was NOT the life I had planned!!!
First things first, find a good therapist. Even if it’s just to vent. Maybe meds will help, maybe not.
When I went back into therapy, I was struggling with back/leg pain from a herniated disc, I had just been (mis)diagnosed with T2 diabetes (it was really LADA) and my job had taken a turn for the worse. I was a wreck. Are things better now? Yes. The pain is under control through exercise and a good Chiropractor. The anxiety is usually manageable, and the T1 is under control. Do I self medicate to numb the worst symptoms, yes…I’m working on that. One thing you might explore is Ketamine infusion for severe depression. I did it last year. Meds don’t make you “happy”, but they can make you function, which in turn can help you see a brighter future. I’m glad I found this forum. I’m glad you’re here. Don’t give up. Tomorrow will probably be better. If not, maybe Friday. One day at a time. One foot in front of the other. Peace. SW
#preach …I have diabetes – IT DOES NOT HAVE ME.
I am so glad to see this topic addressed. Two years ago I was at a conference and one of the panels was about how we as healthcare providers should stop referring to patients as diabetics and start saying patients or persons with diabetes. I’ve had T1 x 46 yrs and honestly, I guess I’m just use to it and never gave it a second thought. After hearing the presentation, it made sense that having diabetes shouldn’t be the biggest part of my identity. That I’m not a migrant from the planet Diabetesmellitus. When I came back, I talked to colleagues and co-workers about this and most treated it as a good but novel concept. I consciously stopped using the term diabetic but it’s been a very long struggle with co-workers, family, and friends. Even when I tell them I find the term personally annoying when they refer to me, it doesn’t register. For now, I’ll keep trying to do my small part and hope it will start to catch on.
Saying I have diabetes or saying I am diabetic can be extremely frustrating at times and is a medical term used for generations for doctors and families to use to inform others of a medical condition a friend or family member has. I’m out being sarcastic when I ask what other term(s) are people to use? I ask this because my granddaughter has Cystic Fibrosis, though I don’t want it to define who she is, the fact remains she has it and those in her life, parents, family, doctors and friends have to encourage her not to let it define her and at the same time help her understand she has a health condition that needs to be tended to. Again and not sarcastically, what is society to call people with diabetes, Cytic Fibrosis, club foot, P.O.T.S., fibromyalgia or any type of chronic disease?
@sryoungman…While I do appreciate that the term diabetic has been used over multi generations, and speaking for myself, the term has always made me feel singled out and different from others, especially as a child.
It has nothing to do with acceptance and or encouragement from family, friends, and healthcare providers. No matter what the situation, when I’m referred to as diabetic, people either pity me and or make wrong assumptions about my physical condition. When I was expecting my first child, I constantly heard everything from “diabetics don’t or shouldn’t get pregnant,” to “aren’t you afraid your baby will turn diabetic?” Imagine if your grand-daughter was called a “cystic” or her mom was asked, “what if your baby is born a cystic?” Do you see what I’m getting at?
Society no longer refer to mentally challenged people as retarded or people w mental illness as crazy or nuts, so what’s so hard about saying person with or person who has diabetes?
I understand the feeling of being different and no one else being the same. I was the only person in all the grades I graduated with diabetes. I was 18 when I gave birth to my daughter and the doctor tried scaring me out of having her with the same question you mentioned along with my body was still growing and changing and my age was the worst time to get pregnant. My first thought was aborting her and after talking to my parents and hearing my dad tell me it was my choice but it was also his grandchild and he wanted me to have it is what stopped me from aborting my daughter. Even with the number of complications I have had, burnouts and frustrations I feel good when I take the time to stop/think of the few things I have done/accomplished after growing up hearing diabetics can’t/shouldn’t do these things. I feel good when I, husband, daughter and friends can educate people about diabetes because of what they have learned knowing me. Sorry si long, in the end, whether you or someone else says "you are " a diabetic, you’re still in the same group of persons or people who live with diabetes. I am thankful for all the times my parents told people I had diabetes to let them know what needed to be done if something happened to me and that taught me not to be afraid telling employers or companies I have volunteered with. It informs those people I may look like everyone else on the outside and not to assume that I am because I am and many others are different though it cannot be seen.
I just realized that I have been in the “trap” for most of my 45 year T1D. it, along with several tramatic experiences in my life, have caused me to have some mental as well as physical problems today. I am getting older now and starting to see how many years of poor management of my diabetes is showing with my neuropathy, nerve and other problems.
I have always thought that the word diabetes was a little bit depressing. I think I would prefer the word to be changed. Let’s call ourselves, “LIVABETICS”, that sounds much more positive and encouraging to me. What do you think?
Although it is unfortunate, people are defined by their diabetes. I define myself by it. I know there is more to me than my insulin pump, I still let myself be defined by it. I’m about to begin the college process, and I embrace my identity as a diabetic because it sets me apart from the thousands of other students interested in journalism and other activities that I am. I wear my pump visibly and write articles on living with diabetes, so most people know me because of my T1D.
It is also hard to not be defined by it when your friends and peers always check in to make sure you are allowed to eat that slice of cake or if you don’t like chocolate because of “your diabetes.” We are put into a box for our certain dietary restrictions, but people only view diabetes as people with eating restrictions when it is so much more than that.
I’m used to the diabetes and am welcoming of the community it brings, but people need to ask better questions about diabetes and create more positive conversations.
Hey Emma. College is a GREAT experience or at least it was for me. I went into it pretty newly diagnosed. Do what you want, but you don’t have to be singled out and the only one etc. I’m asking a serious question here, who do you feel the need to be so open and public with it? I’m curious because I have taken the opposite approach and it has worked.
I AM NOT defined by it. It’s just part of me I have to deal with. I don’t tell anyone unless there is a reason they need to know. Not because I’m ashamed of it or feel inferior in any way, but As you say, people misunderstand it and stick their nose in based on assumptions and ignorance (like your chocolate cake example). Why bother? I keep it to myself and do what I want. I want to be judged by who I am not by what chronic condition I have that other people do not understand. Honestly though, how much do you know about epilepsy or Chrons Disease or any other chronic condition? I’m sure I have misconceptions about them.
I can only think of a few things in the last 41 year that I wanted to do but didn’t because of this.
Do what you want, but maybe in some new situation like maybe college try the opposite approach and don’t tell and see if you like it better. You can always change back.
Best of luck in college and don’t forget to have fun.
Are you kidding me? This is utterly banal. That anectdote sounded a bit too contrived. The term diabetic is in no way a ‘trap,’, negative, positive, or anything else. It’s merely a description of a condition that one lives with and manages.
This is absolute rubbish, and nothing more than a contrived and trite attempt at a pep talk.
hi @Slaz Russell, it is totally OK if you disagree, We try very hard not to directly attack one another because the purpose here is to help each other. ok?
Hi, Russell @Slaz,
As @joe said above, you are entitled to your opinion. As for you calling me a liar ("…a bit too contrived.", etc.), you don’t know anything about me, the work I have done in the past, and the way I live my life. Liar? No, that’s not me. All of the vignettes included in this thread are about people who I saw as part of my practice. The vignettes are very condensed, but the facts are just that, facts. They are not lies. Lies don’t help any of us, whether they are in a social media forum, a social organization, an advocacy group, or in government. Lies build mistrust, and mistrust can prove to be the downfall of any effort that attempts to make life easier for people. In the case of Type 1 Diabetes, many of us need all of the help that we can get. Lying won’t help any of us. And neither will insinuations that someone is dishonest when you don’t know anything about them.
Human beings are “analogical learners” - we often figure out how to solve problems by comparing our new circumstances to things we have experienced in the past. “Storytelling” (i.e., in this case, the act of relating facts in the form of a narrative) is a very powerful method of helping people begin to understand their circumstances, especially when they are confronted by circumstances that are totally unfamiliar to them. The story (its details) offer an “analogy” that gives people a “frame of reference” (i.e., “this” is like “that”). With that “frame of reference,” they can begin to understand their new circumstances, and can, then, begin to find a way to adjust to their changed lives. In the vignette that is some posts above, I was responding to Jess’ (@MrEntropy) expression of what appeared to be grief, and offered a story of how another human being found a way to begin to live after a life-threatening event left her permanently scarred, both literally and figuratively. A diagnosis of Type 1 Diabetes has a similar effect on many people.
Russell @Slaz, you are welcome to have your opinion about anything that I post. But what I post will never be “contrived” as you have suggested. My posts will always be based on having lived with Type 1 Diabetes for over 60 years, and my work with many, many people who have found themselves confronted by difficult situations. If you find that “banal,” that is your opinion.
I wish you the best as you manage your diabetes.