Finally! My third and final blog from Diabetes UK Professional Conference -Psychological and Emotional Support with Type 1 diabetes.
If you ask any Type 1 whether it is psychologically and emotionally taxing living with diabetes I think it’s safe to say 99.9% would answer yes. There’s an awful lot more to living with diabetes than meets the eye. As a Type 1 myself, I don’t think people understand the emotional demands diabetes actually creates in our day to day lives. I can confidently say that my diabetes has made me feel happy, sad, angry, frustrated, surprised and deflated just to name a few. It’s like you’re on a constant roller-coaster of emotion and you know you’re never going to get off of that roller-coaster.
Everyone deals with the roller-coaster differently and some are much better at that than others. During DUKPC Yvonne Doherty stated that; “Emotion is part of being human. It’s normal. Add in the burden of diabetes and there’s going to be heightened emotions. Emotions are fundamental to the human experience.”
Dealing with an extreme level of heightened emotions brought on by diabetes can be tremendously exhausting and it can really begin to affect you psychologically. People are wired differently and their outlook on life will be completely different to someone else’s. I like to think of myself as a very strong and confident woman. I do have some down days where diabetes really does test me, but I do find it easy to pick myself back up and carry on fighting. I guess being an Actor helps in abundance with that too as you deal with rejection quite frequently, and you learn to get over it and move on. However, that’s just me personally though. I don’t say this like it’s easy, it’s still challenging. I guess I just deal with it quite well. (Or so I like to think!)
I have heard from numerous Type 1s that during their diabetes appointments no-one ever asks questions like; “How are you actually doing?”, “How are you feeling emotionally?”, “How does your diabetes affect you psychologically?” I can vouch for this, as I don’t think I have ever been asked these questions myself either. Which when you think about it – it’s really quite concerning.
Yvonne Doherty talked openly about creating a House of Care which needs to be implemented into the system. She said “what we really need to do is to create a house of care that has emotional and psychological care at the heart of it.” I’m very sure that having that emotional and psychological support system in place within a diabetes capacity would certainly be beneficial. It would help to provide a more well rounded approach to diabetes. Not only focusing on the insulin calculations, the blood glucose readings and the HBA1c outcomes, but focusing on you as a person too.
For Type 1s with existing mental health conditions and diabetes there needs to be something put in place to support these individuals. It’s very difficult when you have diabetes and any other comorbidity because appointments are separated. There isn’t a through-line that covers all bases for the individuals needs. It’s as if the individual is seen as various different cases, opposed to one person who is dealing with multiple branches.
What I feel is extremely important when it comes to diabetes and psychological and emotional support is simply having a strong support system around you. Taking medical professionals out of the equation it’s so important to surround yourself with family, your partner, friends and other type 1s who really can keep you grounded and always offer a safe space to unburden yourself. I am extremely lucky to say that I have the most supportive family, fiancé and friends that I could ever ask for. They are always there to lend an ear if I need to talk about anything and they always make sure that I’m doing ok.
I also find that the online community of Type 1s is an extremely important group to be a part of. We are all in the same boat and it’s fantastic to see how supportive the community really is. There is always someone available to offer advice and support when necessary. It’s also great to see how the community sticks together in the face of negativity. Here’s an example…
I only found out in my last appointment with my Diabetic Specialist Nurse the reason as to why I’m supposed to inject 10-15 minutes before food. I’ve always injected after food out of fear that I would inject first and for some reason not be able to finish all my food – therefore resulting in a hypo later on. My DSN told me the reason for injecting beforehand is to cut down the after food spikes because my insulin takes 10-15 minutes to work. I can honestly say in my 12 and a half years of living with diabetes, no one has ever told me that before. Obviously I was shocked by my new revelation and posted a tweet on Twitter. I had a lot of responses to this tweet which were a mixed bag of supportive, people letting me know they already knew that and some people who didn’t. Then there was one. One particular tweet that really sparked fury in me and the other Type 1s. The tweet was supposedly from a “Dr” and it read, “A high carb diet is not as necessary as breathing air. If you want to keep your legs cut the carbs. Injecting insulin will cause increased insulin resistance.” Absolutely appalling. Why on Earth would you say something as insensitive as that to a whole community of Type 1s?! Is it any wonder that we are challenged mentally every day when we also have to deal with comments like this?
When you are living with an autoimmune condition that you know could potentially lead to some horrible complications, you really don’t need people making comments like that. I am so determined to live a long and healthy life and avoid any possibility of developing further complications due to diabetes. The thought that I might is always there and yes, it is very scary. For some, the fear of potential future complications is the most terrifying thing. That fear can really mess with you.
It’s important to talk about your feelings and it’s even more important that people ask you about them too. You should always feel like you are in a position to share your emotions. I find it extremely cathartic to talk about how I’m feeling and how diabetes may affect me on a day to day basis. I would never bottle up how I feel because I ultimately wouldn’t be able to cope with that overwhelming sensation. So, if there’s anything I can offer to any Type 1s who need a little helping hand when it comes to emotional and psychological factors, this is what I’d say:
- Talk. Don’t bottle things up, really try to open up to your medical team, family member, partner or friend who you trust. It’s so important to talk because without it there can be no communication for how you’re really feeling.
- Surround yourselves with positive people. These should be the people who care about you. The people who want to know how you’re doing and who are always willing to listen. They should also want to see you live your best life.
- Get involved with the online community and speak to likeminded people. Remember, we are all dealing with this together so who better to talk to than the people who know exactly what you’re talking about.
If you are ever concerned about your own mental well being or that of a friend/family member/partner then do contact your/their medical team. Like I always say, I am no medical professional, I only offer my own advice. I am always available to talk to if anyone needs an ear too.