WARNING: Super lengthy post! ...and sort of Tony Robbinsy at least a few times...But most of you are american, right? ;-)
Hello everybody!
A little over one year ago I was diagnosed with Type 1 Diabetes at age 33. The diagnosis had come as a total surprise, and it took me a long time to even realise what it actually meant. In a way, it was like a "re-birth" – so many things that I had taken for granted of what my life was did not apply anymore. Emotionally, physically, psychologically…you name it!
I was very lucky to find this community very early on. Since the day I became a member it was my number one place to turn to when I had questions, anxieties or just wanted to understand this illness better. No matter how little, how weird or how repetitive the question I posted, the feedback was always (ALWAYS!) helpful, informative and oh so supportive. After a while I started to feel almost guilty for asking for help all the time but not (yet) really feeling able to give something useful back to everybody who was kind enough to take time and effort to reply to my posts. As far as "technical" advice goes (insulin dosing, interpreting numbers, complications etc…) I am still a rookie.
Instead I thought maybe it could be helpful for some who are now at the stage where I was a year ago to collect some general and simple tips and tricks that helped me emotionally (?) to get through the first few months or years. I know this experience is different for everyone, and by no means am I claiming to be right on all of this, but here is what I did that helped me to deal with things – please forgive me for it being so long (and some of it probably very obvious), but I m german and we use a lot of words…
1. Information, Information, Information...
When I got diagnosed, I felt like I had lost total control of things, and the only way for me to could get some of if back was to read everything (everything!) diabetes related I could find. Books that helped me a great deal were Using Insulin by J. Walsh, Dr. Bernstein's diabetes solution, The book of better by Chuck Eichten and many more. And of course this community – the knowledge on here is unbelievable, there is literally no diabetes issue that has not been discussed, and when you cannot find an answer to a question you have, just ask, and people will be happy to help.
I also read what felt like thousands of medical reports, studies and trials that had been published on the internet, I know that sounds excessive and is not for everyone, but for the first few months that helped me a great deal with the control issue. After a while I had like my own (semi-competent) diabetes lingo going on, I knew all sorts of weird medical terms which made it almost possible to really understand these articles, and it might sound silly, but when that happened I felt like I started to "own" my illness. It changed the way I looked at myself as a person with diabetes. Maybe pride is the wrong term, but it is related to that. A sense of living up to a challenge and using the info I had gathered to kick diabetes' ass without "hating" the illness or myself for having it. ;-)
2. Information – but the right kind.
This is related to the first point I made. I only learned that around the time I had googled "type 1 diabetes" and "life expectancy" for the 30th time. There is SO MUCH bad information on the internet about this illness. Some of it is sensationalist and written only to scare people (usually type 2 diabetics), some of it is just really old and outdated and some is just bad journalism (presumably written by an intern). And it can be really depressing to read. After a while though you will recognise the good vs. the bad and the ugly and skip right past those sites.
3. Inspiration
This was a real life saver for me. Again, everybody is different and needs different things to be reassured of. For me watching youtube videos of marathon runners/gold medalists/sailing champions with Type 1 or 11 year old girls who manage diabetes with this amazing confidence ("check out my cool neon pink pump") or people like Dr. Bernstein who was so fed up with the way doctors treated his diabetes that he decided to study medicine as a grown man and now is one of the most renowned diabetes specialists around…it just really helps me gain the right perspective. But really it doesn't matter whoever you pick for inspiration, in my books everyone who deals with diabetes every day of their life deserves a medal anyway. It is just good to know if I wanted to, I could still become the next Miss Germany or Iron man 2016 or join the Jonas bothers… It could happen you know ;-)
Ps: DO NOT watch steel magnolias btw!
4. Connect with other people with diabetes
When I was diagnosed, I noticed I knew literally no one with type 1 diabetes. It is pretty rare to have it, and even rarer being diagnosed as an adult. So I felt really lost at first. And some part of me even felt like maybe it was my fault. I was all of a sudden different from everybody around me, and that made me feel very alone. It started being different when I got on tudiabetes, but I wanted to also meet some flesh and blood people with diabetes. Once again, different story for everybody, some people prefer not to share their illness with everyone, I can totally understand. But I ve always been someone who had to talk about the things that bothered me and mostly it made me feel better. So I actually wrote a big group email to all my friends and acquaintances, told them what s new (I am freelancing now, check out my website, oh, and also, I have diabetes) and asked them if they knew anybody who also had it. Many people wrote back, mostly really lovely replies, and I ended up making contact with 3 or 4 other diabetics. Talking to them, meeting them and learning how they cope every day, was really great.
5. Appreciate how diabetes might also have some "positive aspects"
There is a lot of discussion on the issue on this website. Most would agree that it sucks to have to live with this illness, day in, day out. So I would agree that it is pretty corny to try to sell the message to yourself that really its a good thing in disguise. But at the same time, there ARE a few things which have changed for the better for me personally since my diagnosis. And sometimes it helps me to remind myself of them. The most obvious one is that I m forced now to take good care of me, which I wasn't exactly a champion at before. I eat better, more regularly, I exercise more and I am less hard on myself generally. I have also learnt some things about myself. For example that I have real drive to manage my diabetes well. And when I am successful, I am proud. Also, I have a history of anxiety and panic attacks. It was really bad around the time of my diagnosis (probably related) and when I compare the two illnesses, I would personally say "give me diabetes any day!". There is one very unique aspect to this illness: You can have an immediate influence on it every day. YOU are managing it, you are the boss. And when you take care of it, you (and everyone else) sees results. Well, mostly. Having to deal with something like anxiety is the complete opposite: It owns YOU, it overwhelms you and it is very difficult to influence. Ideally I wouldn't have to deal with either of course, but to me comparing the two once again helped me gain perspective. Anxiety makes me weaker, diabetes forces me to be strong. I have no choice really but to take care of it. (Insert hulk roar here)
6. Take.Your.Time
When I first heard about my diagnosis, I wanted to understand everything and succeed in all of it. Right now! And when I didn't, or I wasn't doing it right with the carb counting, the insulin, the….., it became overwhelming. And I became frustrated. I m a year in, and I still know so little compared to some of these heroic people who got diagnosed as kids or had it for 20 yrs. It doesn't matter. The learning and understanding will come. A lot of the things I thought I would have to remind myself of all the time now come naturally. In my (little) experience, it DOES get easier. It IS manageable.
You will make a lot of mistakes all the time. It doesn't matter. As long as you are willing to keep at it, that really is half the ticket. And when you do make mistakes, don't be hard on yourself. You will do better the next time. And just because you have a bad number here or there does not mean you are failing at this. Or will make you sick later in life. It really doesn't.
7. Have a "support team" if possible. Especially when newly diagnosed.
Once again, everybody is different. To me it was very important to have a few very close people around me in those first few months. In my case it was my partner, my mother and my best friend. They offered love and support, and I took it gladly. It is ok to rely on loved ones when you have a crisis. It is a crisis, and its traumatic I believe. So don't feel guilty to rely on them much more than usually! For example I didn't want to be the only one who knew about all this diabetes stuff, so I asked my partner and my mom to read some of the books I had. I am grateful they were willing, and it made them understand my situation much better.
8. Challenge yourself whenever you feel strong enough
I have a tendency to avoid things that are too difficult. With diabetes, that can mean reducing your life to a "safer" smaller size, and that can be dangerous. Of course it is important to take it slowly at the beginning, but I had a phase where I was so scared of lows that I stopped doing certain things. Like going out dancing or swimming, which I love doing. I work as a photographer and I got scared to take on certain shoots because of the things that my diabetes might do. It was a very slow and long process to find myself back to normality. And thats ok I guess, but keep it in mind if you are like that too. It really worked for me to take it step by step. When I noticed travelling wasn't so bad if I prepared properly, I first went on a weekend trip, then visited a friend, then more recently travelled for 2 weeks to Italy. Every time something worked out well I tried to do something more challenging the next time. Yeah, they might all be baby steps, but thats totally enough. As long as you keep trying things out. (Always have a safety net or a back up plan though)
9. It is YOUR diabetes
To me that was something really important to understand. I wanted to do it all right, perfect really, but after a while I noticed there is all sorts of advice out there, some of it quite contradictory. What might be right for someone else, might not be right for you. Only your own experiences, gathering as much info as possible and your doctors can help with that. Your hba1c for instance, or which diet you choose, or how often you measure, or if you want to have a cgm…etc. .. I believe there is much more than one right way of managing diabetes. And you will find your own way with which you are comfortable, it just takes time and work. Once again, take your time. Be gentle with yourself if you don't have all the answers right away. You will figure it out.
I could go on forever, but this is already way to long to read in one go and not fall asleep. Maybe some others would be interested to add to the list from the things that helped them get though that first confusing phase…I really hope some of this helps –