I have to admit that writing about diabetic complications has been the hardest thing for me to every write about on my blog. I know for me personally I have felt like a failure because diabetes is winning and I am viewed as a failure. I knew deep down that my own family views me differently after complications. No one wants to talk about my up coming eye surgery or any of my concerns or fears about things. I always expected that within the diabetic community there would be more support when it comes to people who are dealing with complications but I have found the opposite to be true. I have seen diabetics called failures by other diabetics, treated a lesser because they have failed not only themselves but their families as well. I know I have received nasty messages in my inbox from my blog from people who don't want me to blog about complications.
The whole reason I started my blog was because when I got hypoglycemia unawareness I could not find a blog dealing with it or much information that I found to be even close to accurate. So I knew several years after that when i was goggling that there was a need to discuss complications. I have never been so scared and alone as when I went through my diagnosis of both my complications. Honestly the only thing that kept my sanity during my Diabetic Retinopathy diagnosis was blogging about it. Having a complication feels like you are lugging around a thousands of bricks with no end in sight. I know that no diabetic wants to talk about complications and I understand that.
I also have learned so much from my experiences that I feel not sharing them would be a terrible thing because if I can help one person I have accomplished my mission. I know I am hopping that I can help one person to feel normal, or just understand what they are going through that is a wonderful things in my mind. I know there will always be people who will disagree with me on this issue. I will continue to blog about my life because I feel it is important. I know some people don't want to read about complications but the fact is that they have a way of sneaking up on you. I know my hemorrhage in my eye happened quickly.
I know through all the obstacles I have faced this has been incredibly difficult to be viewed so harshly by other diabetics. I really always thought of anyone one who would understand would be another diabetic. I have seen on forums, websites, twitter and other places diabetics treating those with complications in a very negative manner. I know I really wish I could freely speak with everyone about my complications but we are not there yet. I have to thank you to my readers because I feel that you don't judge me but understand.
I know I wish the DOC would talk more about complications and created more of a support network for those who are facing complications. I know when I was feeling so alone with my complications it would of been nice to have had more support. I am fortunate because I blog and I get support through all of you. I am still flattered that you take time out of your busy days to read my blog and I thank you for that. I think the Hope online conference this year was a step in the right direction but I also experienced the downside of it as well. I know when I was tweeting my thoughts during the sessions I got some very nasty direct messages which was a little shocking to me. Hoping some day that we all could be supportive of each other regardless of complications or not.
I am sorry you got negative feedback about your complications. My husband has become blind in one eye and has retinopathy in both eyes. He also has severe nerve damage and pain in all four limbs from neuropathy. And like you, he no longer feels his lows. I created my blog because I needed a place to vent. I needed to have a place to "scream" when things got rough. I have to take care of a disabled husband at the age of 29 and do things for him that I shouldnt have to do, like put his socks and shoes on. It's not fair. How dare anyone degrade you for talking about the complications. I'm sorry you had to deal with this.
ReplyDeleteThanks Sandy. It was quite shocking but I know how scary things can be but I did not expect how I was treated. I love sharing my story and I am glad you share your story as well. It is interesting how many people blame us when there is so little know about complications. I know I just meet a 4 year old who has complications and I don't think it was related to his parents not doing a great job.
ReplyDeleteA 4 year old!!!???? Wow. Yes, I know complications are related to control, but I have seen and heard way too many things that lead me to believe there is way more to it then just controlling the numbers.
ReplyDeleteYes a 4 year old. I have also meet others as well who have only had diabetes several years and same thing. My theory is that each persons bodies handle diabetes differently. I have also heard of one guy who did not test blood sugars for ten years and no complications.
ReplyDeleteHi Tarra!
ReplyDeleteSo sorry that it's taken me SO long to read this.
I'm also sorry that you've been on the receiving end of some nastiness - as if life with diabetes itself isn't nasty enough.
It's my opinion that nobody dealing with complications should be made to feel it is their fault. Nobody here chose for their pancreas to fail, and very few understand just how hard living with diabetes is. It's unfair, difficult, unpredictable, and so much more.
I'm shocked that people with diabetes would come at you in such a way, and I have to wonder if they have any complications themselves.
I think that conversations about complications need to happen, and I think people with complications need to feel safe about having those conversations. The DOC should be a place where you feel comfortable doing so, and I'm so very disappointed to hear otherwise.
I have a lot of love for you, Tarra, and You, Sandy, caring for Vince the way you do. Please, don't let the crazies/haters deter you. We need you to talk about it. There is good that comes from it, even if there is pain involved in getting there.
Thanks Scott. I know it threw me off as well I did not see the nastiness coming. I will keep on talking about it because I feel I need to break down some barriers but it is much tougher than I thought it would be. Thank you for getting so many to start to discuss complications. I always appreciate your support Scott.
DeleteI don't understand why the DOC would judge you harshly due to complications?! If there is any lesson and support we as diabetics need is that diabetes is nobody's fault, and our bodies are clearly imperfect! I agree, there are plenty of people who have "luck" "good genes" or whatever on their sides, and good control doesn't hurt, but it is NOT A GUARANTEE that someone in great control won't get complications. Every diabetes is different in every body. I wish you only good things and thank you for sharing your stories- no matter how difficult it is. The voices of the few in the DOC are not the voices of ALL of US. xoxo bug hugs
ReplyDeleteI think the DOC like anything else has people in different places and that creates people who are bitter or angry about their diabetes and I am sure my blogs posts are the last thing they want to see. Good control is no guarantee I could not agree more. Thank you for the encouragement. I plan on continuing to speak out and even if it means nasty comments because I believe we all have a place in the DOC community. Thanks for the hugs it is appreciated.
DeleteFor some reason, my very long reply didn't post (neither did my attempt at a shorter reply). They say third time is a charm, so here we go. Reader's Digest version of my reply: Diabetes sucks! Complications suck! Mean people suck! Yup, that about sums it up. Keep writing and keep sharing!
ReplyDeleteI think you summed it up pretty well. Thank you Sue.
DeleteHi Tarra, met you briefly at FFL. Thanks for sharing. I also believe that, in a lot of cases, it's just a genetic predisposition to certain things. It's sad but true. You know, just like a friend who has high cholesterol but eats right and exercises. Or an uncle in his early 80s who's smoked since teen years and always eat food out of cans and yet has a clean bill of health. I'm sorry you're going through this and getting negative feedback. I wish you the best. ~Ivy
ReplyDeleteFFL like was such a great experience. It was nice meeting you Ivy as well. Human bodies are an interesting thing in how they can handle certain obstacles better than others. Thank you for your support.
DeleteI have hypo unawareness most of the time. I wear a CGMS because of it. I also have early stages of retinopathy. I support you in writing about it. Life happens. I've had diabetes for 27 years. I'm fairly healthy compared to some, but complications, even small ones, come with the territory. I'm glad you share. Thank you.
ReplyDeleteThank you Cara it can be so scary when you don't find others experiencing the same complications and just want to talk about it. Thank you for sharing your story with me. I plan to continue to share because I feel so strongly about doing so.
DeleteSweatheart, I have T1D too, and anyone who has LIVED our life need to not judge, as we are judged too much ourselves and should very well know how difficult one single day is. I am a friend of Scott Johnson and I am SO GLAD I read this. Don't stop talking Tara, this is your coping skill and your release. People are allowed to have their opinions but how you have to manage your T1 might be a little different but we are all the same here in the same boat. I hear all the time "Diabetic complications" and really, it is a coin flip. I may get some i may not, i may try as hard as possible and get them all or i may not try and get none. It is not 100% up to us what happens with the outcome or complications of our diabetes. Sounds like you are doing the very best that you can, despite anything else other than T1 might be. Hang in there, you CAN DO IT and the haters, especially those T1 should really look into the mirror, as no one is alive without flaws. Unless you LIVE it with us, you don't fully understand no matter how hard you try. I promise to not be a hater, but a LOVER and supporter! You got this!
ReplyDeleteWell said and well put. The community should be better than that and most of us are :)
ReplyDeletePlease share it all. The good the bad and the ugly - that's diabetes.
Thank you Scully. I am not mad at the whole DOC but I am upset that some prefer to insult others who have obstacles. Most of the DOC is incredible. Diabetes is so many things at times it can be difficult to handle it alone that's why I blog.
DeleteTara,
ReplyDeleteI am sorry that you received backlash when you shared your thoughts on twitter or any where else. I have noticed in the past few months that more and more people are sharing information about complications through blogs, tweets and photos on Instagram. I hope the sharing leads to education-complications does not mean people did not manage their diabetes. Keep sharing. Please do not allow ignorance stop you from telling your story and helping someone else.
Hugs
Thank you Cherise. I have noticed more people sharing which is wonderful and I can't encourage people enough to do so. I have seen so many things even on diabetic websites where people with complications are treated very harshly by others. Hoping by increasing our communication about complications will help. Mind you I was not a perfect Diabetic and had several bad years in my teens and early twenties so I know I played a role in where I am today. Thanks for the support it is so appreciated.
DeleteTarra, I'm so sorry you've been treated poorly by the DOC. I am a parent of a child with type 1, diagnosed 3.5 years ago and has a diabetes alert dog as well. I completely agree with you that we can't stick our heads in the sand, and we absolutely need to SUPPORT those who have complications or have a more difficult time managing diabetes. One thing I've learned is that diabetes is different for each person, and having an "easier" time of it doesn't mean you're smarter or better, it just means your diabetes is different from someone who is having a harder time. Hugs!
ReplyDeleteThank you Michelle it was just several people but I was not expecting it so it really hit me hard. I know having a Diabetic Alert dog you get nasty comments at times so it happens. I just expected more from these members of the DOC. I have spent my whole time with Diabetes being considered the old school term brittle. Thanks for the support Michelle and the hugs.
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ReplyDeleteBeloved Tarra:
ReplyDeleteI'm lucky... in my diabulimia support group here on FB we talk about complications ALL the time, with NO judgement and all the support and kind words you could ever wish for.
I guess seen through the eyes of someone with a obsessive compulsive psychiatric disorder exacerbated by T1 diabetes, I have a unique perspective on 'failure' and certainly on how I (and others) are treated within the medical community AND the diabetes patient community (I refuse to call myself diabetic, I do not identify myself as my chronic illness. I am NOT a disease).
I have had people 'go off' about my complications, attempt to get all 'holier than thou'... until I tell them about my struggle with my eating disorder. Until I tell them about the young women who have DIED from complications BECAUSE of this eating disorder.
Interestingly, people quiet down and really LISTEN, and with my ability to shatter that killing silence related to the disorder with assertiveness, I feel like I'm breaking down barriers to appeal to their (and my own) humanity.
Let's not treat complications as failures. We ALL know that even with 'perfect' control, there's no guarantees! It's up to genetics, metabolism, and who-know-what-else? Don't shove it under the rug and pretend it doesn't exist. Have some compassion, LET someone share their story; you might learn something valuable, and not just about blood sugar control. You may learn about courage, steadfast refusal to give up, vulnerability, strength, grief, hope... take a deep breath and just let it be.
HUGE hugz to everyone! Hope you're having a great day!
Thank you Amy for your perspective. I have had my own issues with eating disorders so I understand how crazy that is as well. Complications are so difficult and adding people who don't understand usually equals the holier than thou attitude. I have experienced it first hand. I think not matter what is happening it is so easy to consider yourself a failure. I know I am not a failure but it can be so easy to blame yourself. I am hoping eventually one day there will be less of the attacking more of the understanding.
ReplyDeleteAmiga,
ReplyDeleteI am running into your post today and I can only say one thing: THANK YOU! Thank you for the courage and the bravery to share your challenges.
I know this may sound simple to say but hard to do, but please ignore the negative comments. It takes a lot to live with this condition day-in-day-out and people with diabetes know it... they should know better not to judge ANYONE because of complications, because we all know well that "your diabetes may vary".
Sending you a HUGE hug. Take care and may your Retinopathy become nothing more than a bad memory very soon.
Thank you Manny. It really took me several months to get the guts to write about what happened but I knew I needed to say something. Thanks Manny for the big Hugs. I am ignoring the comments and will continue to talk about complications. I am defiantly hoping the Retinopathy will be a distant memory very soon as well. Thanks for supporting so many Manny.
DeleteOMG Tarra, you're a rennie?! Me too! I just discovered your blog thanks to Scott Johnson. I talk about my main complication all the time, and no one has ever said anything to me about it? It's plastered all over all my profiles and my blog. It's the reason I blog, so no one else has to die like I did. If someone gives you trouble, you let all of us know, and we'll set 'em straight. :)
ReplyDeleteOh I am defiantly a Rennie. I am going to the big TRF in the fall and I can't wait. Thanks Rich for the support. I was so shocked that they would attack me but I know it was because they are fearful. I will let everyone know if it happens again but I have a feeling it won't.
DeleteSo sorry for your trouble Tarra. Maybe my perspective will help a little.
ReplyDeleteI don't believe I have ever separated complications as distinct from my diabetes, but there is a broad range of severity. Some complications are hardly discussed or acknowledged but on a yearly basis I have had my fair share and without diabetes - they would be nonexistent. While I have not suffered from permanent retinopathy, nephropathy or neuropathy - I have been type 1 for nearly 40 years and my list has included frozen shoulder, gastroparesis, pregnancy complicated by type 1 with hospitalization for 3 months (support by respiratory machines, and intravenous water and food) before the birth, but it took me 6 months to recover and I wasn't well enough for work. My daughter is healthy and 13-years old today but I have experienced thousands of hypos in front of her since she was an infant given that "tight control" is the only way I might live to see her graduate from college. I have suffered a range of serious to mild infections and major flu and virus caused by poor immunity. Managing moods from highs and lows have been among the most challenging aspect of the condition and mild depression has been a significant part of my life both in teenage years and adulthood. The burden on my partner has been significant although he is uncomfortable admitting this fact since he has watched me (with sadness and horror) strive to overcome type 1 since we met 18 years ago. He is strong because he "sees me as strong", but it is still a burden. Here's another fact - many people with type 1 diabetes hide! That's right I know dozens of people (there are thousands) that have t1 diabetes who refuse to even admit to the public that they live with the condition. Can you imagine the stress? There's a MAJOR complication for you. Sure diabetes doesn't define me (or anyone) but it sure it has a major impact on quality of life, who we are and what we will become. Isolation, denial, and many other coping mechanisms are also complications of type 1 diabetes (and type 2 diabetes for that matter).
Please don't bundle the DOC into one. It is a vast community that is not regulated and there are a wide array of opinions most of which I take with a grain of salt. If I need real expertise or opinion I seek out my trusted team of medical practitioners, friends with diabetes and members of families who live with the condition, say a mother of a child with diabetes. The diabetes tribe is completely disjointed and people speak all the time without thinking about the feelings of others or how what they say might be misinterpreted and even misinformed. Some feel that because they are able to reach tight control (without details on how they are getting there) that they are then in a position to read everyone "the riot act" which is foolish and unintelligent. How they think that arrogance is a method for mentoring or understanding - I'll never know! There is a great deal of work to do in the community although I believe organisations such as JDRF and DRI act the most responsibly when it comes to ethics, standards and support. Interesting that the most healthy psychosocial aspect of diabetes support and information comes from families, parents, doctors and organisations that look after the needs of type 1 in the young. For most t1 adults my sense is isolation and denial dominate life. This negativity is often threaded in comments made online.
Be strong, and feel free to feel weak too! I often write about the truth in living with t1 (In June I wrote about a major, major hypo seizure that would have killed me if my husband hadn't been with me) and even though I am professionally connected to diabetes, I am an outlier for sure. The only way diabetes is ever going to get the attention it needs if we are honest about the toll it has on our lives. I speak out about the truth because it is so much harder to pretend. Keep in touch.
Thank you for your comment. I am not really bundling the DOC into the issue but this is something I have experienced and seen others experience in forums and chat rooms related to diabetes so I had to say something. I know complication will vary just like Diabetes. I am try to ignore comments but when someone sends them directly too you it can feel like you are being attached from my perspective. I also have meet so many awesome people in the DOC as well but there is also the one's you say are living in denial which I agree with. I know I just want to be able to blog and not feel like I am going to get attached for it. I feel my blog should be a safe place for me to vent or share my personal journey as you do with yours.
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