Adjusting to Life with Type 1 Diabetes - A Personal Journey

My classic knee-jerk reaction to any challenge set in quite quickly. I remember not wanting to talk about diabetes with anyone. I wanted to do this whole ‘diabetes thing’ on my own. I wanted to equip myself with all of the knowledge I needed to minimize the interruption of what I seen as an ‘inconvenience’ – I remember I even bought the book ‘Diabetes for Dummies’ - thinking this would be the fastest route to ‘everything I needed to know’ – Turns out it wasn’t…

Advice which may help at this phase:

• Again it’s so important to remember that you are not on your own despite however lonely it can feel sometimes. Try to identify some people in your life who you can ‘let in’, even just a little bit. Agreed – they can never fully know what it’s like for you to live with diabetes (only you can), but they can provide you with support, love and care.
• There are also some peer support platforms (locally and online) which you may consider. Check out - https://thriveabetes.ie/index.php/diabetes-support-information/diabetes-support-groups
• While accessing diabetes education and becoming informed about your condition is certainly helpful – it’s important that you don’t overload yourself with so much information all at once so that it becomes overwhelming.
• Be kind to yourself with your expectations – managing a life-long health condition is not like studying for an exam that you can just 'ace'. There will be times when it feels manageable and other times when it may feel more challenging – this is not a personal failure but rather the reality of the demands of living with a condition like type 1 diabetes.

Phase 2 was certainly not sustainable and quickly led to the burn out experienced in phase 3. Let’s just say this phase involved a lot of sugar loaded drinks, late nights, pizza and taking some 'shortcuts' with the usual diabetes self-management routine. It was the most active (and exhausting) my social life has ever been – and yet the worst I have ever experienced my sense of wellbeing. Blood sugars ran high…mood was low… I hated this condition!

Advice which may help at this phase:

• Burn-out in diabetes is common (at least 1 in 4 with T1D according to Diabetes UK). It is usually defined by feeling overwhelmed and defeated by diabetes, feeling angry about diabetes, frustrated by the self-care regime and/or having strong negative feelings about diabetes, feeling that diabetes is controlling your life. It is typically associated with avoiding diabetes-related tasks such as blood glucose monitoring, that will confirm what you already know (eg: high blood sugars), whilst inviting a course of action (such as insulin injections) that you are reluctant to give.
• Feeling distress is a normal and valid response to the demands of living with a long-term condition.
• While avoiding distress is not always possible – learning alternative ways to respond to feelings of distress is important. Recognising that this is what you are feeling in the first place is such a vital first step.
• Give yourself permission to feel uncomfortable emotions like frustration and anger towards diabetes – they are a healthy response to its demands.
• Try to think of one self-care task you are avoiding which you could do today, and congratulate or reward yourself for doing it
• Talking to someone involved in your diabetes care about the way you are feeling about your diabetes is important (see phase 5 for additional support options).

This is by far is the most challenging phase for me. I use the present tense as I feel it is one which is never too far away – and has raised it’s head many times over the past few years. This is usually when I feel I ‘slip up’ in my diabetes management and my blood sugars are a bit all over the place. This has been especially since I have accessed diabetes education from the diabetes team already and felt as though I have a pretty good understanding of what it is I’m ‘supposed to do’.

When I am in my diabetes appointment with the team – it all seems so straight forward –“just adjust X, watch out for Y, remember Z…” however applying all of this knowledge into real life is not always so easy. I commonly experience thoughts such as “why can’t I just get on with it…”, “I am so careless”, “I’m going to develop complications – and it’s all my fault”. Being hooked by these thoughts and feelings can be pretty rough and can sometimes bring me further away from the life I am trying to live – eg: avoiding friends, becoming snappy with family, sometimes even avoiding my diabetes appointments.

Advice which may help at this phase:

• Instead of pushing away/avoiding these thoughts and feelings or getting completely hooked or tangled up in them – try to take a step back and simply notice them.
• Again – try to make some room for the discomfort that may go with noticing these thoughts and feelings. Remember that thoughts and feelings are not facts! They are also not permanent features and will come and go.
• When we notice that we are tangled up with unhelpful thoughts - we can try to untangle ourselves from this experience through some mindfulness based exercises (see - https://www.youtube.com/watch?v=r1C8hwj5LXw) which can help us to stay in the here and now instead.
• Try to treat yourself with kindness and compassion – you are trying your best, it is not always (or even ever) easy! Remember that blood sugar levels will never be perfectly in range as they are not 100% under your control – in fact it is reported that there are up to 42 factors which can affect blood glucose (see - https://diatribe.org/42factors) – so stop beating yourself up!
• Strive for balance in your life – your diabetes health is important, but so are your social relationships, rest and play. Try to give some time to each. Try working towards realistic goals that work for you and your life rather than perfectionistic standards.

This is the phase which I am most comfortable with. This is where life’s priorities and goals remain in focus and the presence of Type 1 Diabetes doesn’t blur the vision but rather forms part of the picture. Having diabetes does not have to define my life or who I am but it’s something I live with. Now this certainly doesn’t mean that I am happy about it but I am able to acknowledge it and accept that it’s not going anywhere.

Advice which may help at this phase:

• I think keeping my expectations of myself and my diabetes realistic has been helpful. There is no such thing as ‘perfection’ when it comes to diabetes.
• Be flexible – there will be some good days and some not so good. As the saying goes – “you can’t stop the waves…but you can learn to surf”.
• Stop always blaming yourself – or using high sugar readings as a stick to beat yourself up with. Your blood sugar readings provide you with the information you need to help make some decisions for your day – it’s just info, not a grade on a test!
• Worries about your health and possible risks of complications are all normal. But again, try not to get too caught up with these thoughts. We cannot control or predict the future – we can only work in the present so try to stay in the here and now as much as possible.
• Remember you are never on your own. Try to stay engaged with your diabetes team who are there to help and offer guidance and support (despite it sometimes not always feeling this way – especially in phases 3&4). Also, your friends and family can support you better when you let them in and talk to them about how you’re feeling.
• While feeling distress is a normal reaction to living with a life-long condition like type 1 diabetes – don’t be afraid to reach out for additional mental health support if you need it. This can help you learn to navigate both what you’re dealing with health-wise, and how you’re feeling about it. You can talk to a member of your diabetes team, your GP or reach out a mental health support service such as Jigsaw. Learn more about accessing Jigsaw services here.

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Sadly I don’t think I’ve ever entered this phase…so can’t comment too much on this – sounds amazing though so do get in touch if you have any insights to share ;)