Hello, hello. I was diagnosed with T1 about 4 years ago, when I was 21. I’ve poked around in the forums, but was always nervous to post, or overwhelmed about the amount of information and opinions I saw when I came in here. I’m really conversational in-person in smaller groups, but posting online anywhere always felt like shouting to a big group of strangers, which, as an introvert wasn’t something I went running towards. Anyone else out there feel like that?
My diagnosis got hard about a year after I was diagnosed. The very beginning was overwhelming, but I did my research and went at it like a university class. I found in-person support groups. Then it got hard. I was living by myself for the first time, had my first full-time job, and was away from the strong networks of support I’d had in high school and college. And, I made a lot of close friends at the support groups, but I felt like they didn’t really understand my experience as a late diagnosis. I envied how involved their parents were. I envied the fact they didn’t really feel a 200 blood sugar and could “ignore” it (because my body felt every high and low, and felt it strongly). I didn’t find value in the adult endos I went to that knew so little about diabetes amidst all their other endocrine conditions. And, to top it all off, I felt like no one recognized or cared about the mental health side of diabetes. “How are your numbers?” helped with none of the anxiety, depression, fear, or overwhelm with the health care system that I was feeling. And most people didn’t know how to answer my emotional questions.
Things are much better these days. I’ve since seen some psychologists (UCSF was beyond awesome), moved closer to friends and family, and am doing a lot of “life” things that I love (one of which is working at DHF). But there’s still hard days. Most recently, I’ve been challenged 1) Feeling overwhelmed with the political scene because I care about a lot of issues, and am catching up compared to political science gurus 2) Had a really scary low blood sugar, which I thought I was “responsible enough” to never get, but we are humans, aren’t we? Thankfully my partner rescued me from that, but in the aftermath, the idea of “checking in” with someone every morning to tell them I’m awake (alive) is a hard one and 3) Someone I love that was a big emotional support for me just moved to New York, and this week I miss her a lot. On a happier note, it’s Friday, and I’m going to have a glass of wine tonight, and go on a hike this weekend
Thanks for sharing your story @TypeJones. I know the feeling of being diagnosed as an adult, I was 30 when I got the news. I didn’t interact with any support groups until I started to participate here. I’m also an introvert and am not very aggressive seeking out social support. I lurked on TuDiabetes for probably a year before I registered. I just read what other people posted.
I learned a lot during that year and decided to sign up and write a few comments. That was 8-9 years ago. I’ve found composing and posting here helps me understand my diabetes better. I know everyone loves say that your diabetes may vary and I can’t argue with that. But that’s not why I participate here. I’m here because there are people here who are like me, a lot like me.
Sorry to run off on a tangent! To answer your question, yes, I was nervous in the beginning. So nervous that I waited about a year before I even registered. I get much more out of this forum now, however. Being able to connect with others and help them to understand their metabolism can be gratifying!
I’m a big fan of support groups. When I was first diagnosed, I found a great group in an AOL diabetes chat room. (This was almost 20 years ago.) I am also introverted and sometimes find it hard to “connect” with people. This seems to be a really good group here and hopefully I will one day feel as at home here as I did in the other group. I enjoy coming here and learning from others and people here have a lot of knowledge.
During that early pre-internet era, I used the Prodigy service. I remember participating on the travel forums but I can’t remember if I looked at the diabetes forum.
Think about us - the people on the forums - not as strangers but as members of your (new) tribe. We totally understand what you are dealing with, many of us have dealt with the same things. You’ll find some of us with hysterical senses of humour (which helps as a coping mechanism), and understand when all you need to do is rant (especially if you start off by saying this is just a rant - don’t need solutions here, just ears). That’s cuz we get it. My online tribe have been so supportive as I have dealt with HCP’s (health care providers who have low opinions of patients. A favorite line I coined after one disastrous Endo apt was that there are HCP’s out there who firmly believe if you are Dx’d with any type of D, you have two co-morbidities Stupid and Lazy). One of the benefits of the wide range of people in the onlinhe DOC (diabetes Online Community) is that you can state where you are located, and get names of good, highly competent, HGP’s.
And remember, you can have a nom de plume and feel confident that your “true identity” will remain yours alone.
