Patients Diabetes (Type 1)
Topic of the discussion
Posted on 11/3/19 8:47 PM
Type 1 diabetes, like most chronic conditions, can challenge aspects of life and make one feel frustrated.
What is the most frustrating or difficult part of living with T1 diabetes or T1 diabetes management? Is it the lack of support or understanding from others, the need to closely monitor BG levels, the cost and access to medications, the need to monitor diet, etc...
Share and show support!
Beginning of the discussion - 11/3/19What is the most frustrating or difficult aspect of living with type 1 diabetes? https://www.carenity.us/forum/diabetes-type-1/living-with-type-1-diabetes/what-is-the-most-frustrating-or-difficult-aspect-of-living-with-type-1-diabetes-1302
Posted on 11/3/19 8:58 PM
There isn't one thing that is frustrating... its the entire living with the disease that is frustrating; however, I would not say the frustration is so much that it makes life not enjoyable. I would say the continued access to medications and supplies is worrying and causes anxiety, especially the high cost.
Posted on 5/19/20 7:36 PM
@m1964jets I agree with this.And for me it's almost like societal understanding (or lack thereof) of diabetes that is annoying as hell. People just assume that type 1 is the same as type 2 and if I just "stopped eating sugar" or if I lost weight it would just "go away". So annoying.
Posted on 6/24/20 8:58 PM
This may seem a bit trivial, but I always seem to have low blood sugar at the most inconvenient times! Sometimes I just don't want to have to get out of bed to deal with it! 😂
Posted on 7/8/20 4:40 PM
@jndr11 haha I definitely know what you mean! 😂
I think for me my issue is along the lines of what @dbtsgoaway said, it's the general lack of understanding. Sometimes people who don't know me very well or strangers (in the case that I'm somewhere public and need to inject) will make comments or jokes that are completely awkward or inappropriate. I think sometimes they're well intended, but people just don't know how to act around people with diabetes. No, I'm not "shooting up", that joke was maybe funny the first time I heard it in high school, but now 25+ years on it's not anymore!
Posted on 7/8/20 4:49 PM
Hello everyone, thank you for participating in our discussion! You all bring up some great points! Let me tag some other members who can also weigh in on this.
Hello members, how are you today? Have you seen this discussion?
What is the most difficult or frustrating aspect of living with type 1 diabetes? Is it related to your diabetes care and management, or is it related to something external? Do you feel like the general public is informed about diabetes? What do you wish they knew? Feel free to share here!
@peanutsmom4365 @Julies @Mary123 @Khicks @PollyannaPam @testingtestest @Kafuller @Myterridoll19 @Jamiescott2010 @Debjohnson59 @tiasdaddy @Wishicm @vilpertti @Aliciaborroto @davaida25 @Harleydills
Posted on 7/8/20 9:30 PM
Hi and thank you for including me in this. The lack of availability of proper equipment to have the best control. I'm on medicare and it's nearly impossible to afford my pump and CGM supplies. I stretch them and suffer the consequences of higher A1Cs. I wasn't told properly about the equipment when switching companies from Medtronic to Tandem/Dexcom because they were the only ones covered at that point. My CGM was no longer rechargeable so im supposed to buy a new transmitter every 3 months, when the battery runs out. I'm able to stretch it longer but there are times like now that I cant afford another and having terrible swings. I feel like all the insurance companies, including Medicare the past couple years, are criminal. They give poor or no information... or worse say everything is covered then months later find out things weren't. That's when I'm stuck with a big supply bill and can't order more until it's paid off. I live on disability due to lupus and am on tight budget. Cant even live on my own because I cant afford it. All my money goes to healthcare. I lost everything including house and nice truck because of my autoimmune diseases. But it's the Diabetes that is so financially draining. When you are sick it's too much to deal with. I often think of just stopping my insulin, having a great meal and drifting away. It's too much... plus the pain. Chronic pain from neuropathy, inflammation of joints and they are taking my opioids away. It's so overwhelming and I'm an or shall I say was RN.
So much more to say but need to stop crying. Thanks again for asking for my experience... this is just a tip of it. Pam