“I personally wish that my diabetes healthcare professionals had asked me how are you going more often. Not how are your blood sugar levels going. Not how is your diet and exercise going. Not how are the number of hypos you are having every week going, either. A new diagnosis is a huge thing to deal with. A little empathy and understanding would have gone a long way in helping me to acknowledge that sometimes it might be okay not to be okay.”
On Monday evening, the attendees at #DX2Melbourne took part in a live webcast discussing the emotional, psychological and mental elements of living with diabetes. The panel was joined by psychologist Lisa Robins, who has experience in diabetes clinical psychology. I was actually thrilled for the opportunity to address this topic at an event of this scale.
Again, I am only relaying what I heard and talked about as honestly as I can recall…
It was quite interesting to hear one member of the panel comment that during earlier times he thought he was doing okay, but looking back on his journey today he has second thoughts. I actually feel the same way. I never thought that it was okay not to be okay, or to consider the impact that type 1 diabetes can have on my mental and emotional wellbeing. Today, I have no hesitation in saying that I felt isolated, emotional, not very well supported and in hiding from my condition.
Who was offered psychological support when they were diagnosed? A quick show of hands from the panel indicated two or three out of eleven. I shared with the panel that I was visited by a social worker in hospital. At the time, I felt relieved to feel normal and energetic once again. I felt that she was pressing for something that wasn’t there. However, how great would it have been if she had:
- Taken my word that I was fine.
- Highlighted some of the symptoms that I might expect further down the road.
- Pointed me to what other people with diabetes are doing to feel well with diabetes – weekly OzDOC chats, Twitter accounts, closed Facebook groups, forums, in person meet ups and peer support.
- Left me her card if I did feel that I needed that professional support.
17 year old me would likely have still ignored it, but I digress…
How do we best approach the issue of mental health? It’s something many of us prefer to stay silent about, and treated like its something to be ashamed of. A lot of us like to prove that we are stronger than diabetes, and in doing so we might ignore our vulnerabilities.
The consensus from the panel was that our healthcare professionals don’t take the time to simply ask “how are you going?” in reference to emotional health. The panel suggested that we need to normalise psychological support within diabetes, building it into our annual checklist with our eyes and bloodwork and feet. I’d also add changing the word ‘health’ in mental health to ‘wellbeing’ or ‘wellness.’
I was also thrilled to hear other panel members praising informal peer support. One panel member shared that in the absence of psychological support, it was peer support that had aided her mental wellbeing for so long.
Personally, online communities were the first form of connection I had to anyone else with diabetes. There is so much knowledge out there that helped me to become better engaged in my diabetes management. Those communities were my bridge to finding in person peer support, both of which help me to maintain relatively good emotional wellbeing today.
Touching on the stigma from healthcare professionals associated with online communities, panel members commented that it was more accessible, and no different from going to a coffee shop. One gem was that online communities complement, rather than replace psychological support.
Diabetes burnout was the next topic, and the panel pondered ways of how we identify those triggers that might suggest we need to take a step further.
I did ask Lisa how well she thought our healthcare professionals would be able to pick up those triggers and refer to adequate support. She was very confident, especially in reference to a GP. My personal view is that the right healthcare professional would be able to identify those triggers, so it’s definitely important to shop around and have healthcare professionals on your team that are meeting your needs.
Instead of trying to fix everything, one gem from a panel member was to instead focus on one element that you can fix. When I’m feeling burned out I might turn off my phone for 12 hours, go outside to ease my mind or go to bed early so that I feel more rested. Take small steps.
Another panel member talked about diabetes as extra years thanks to modern medicine, and all of the wonderful things she’s been around to experience.
Without a doubt, this was the highlight of my time at DX2Melbourne, and a topic that really did need to be discussed. The live webcast will be available on demand in a couple of days, once the camera crew (yes, there was a crew filming us) processes it all together. I will keep you posted.
If you’re in Perth and would like to connect with other type 1s and learn more about mental health in a supportive environment, then I highly recommend that you come along to this event on Thursday, August 24.
Disclosures: Abbott covered my travel expenses from Perth to attend #DX2Melbourne. I was put up at The Blackman Hotel on Monday evening, and was fed and watered across the duration of the event. There was a lovely goodie bag with a FreeStyle Libre reader, two sensors and some branded stationery. There was no expectation that I would participate in this webcast if I did not wish to, nor was there any expectation that I would blog about the event at all!
I’ll never forget the social worker who came to visit me in hospital, a few short days after my diagnosis. She asked me if I was feeling anything in particular after my diagnosis. Angry? Depressed? Wanting to talk? She even asked if Mum and Dad needed to leave the room. I had to convince her that I was feeling fine, as she didn’t seem to want to believe me.
It still frustrates me today that this was the way that these emotional issues were dealt with.
Having the social worker come in like that made me feel isolated. Her presence, and her questions that day were based on assumptions that I did not appreciate. I didn’t feel like a normal patient. It didn’t make these issues feel normal. Even if I was feeling something that day, I certainly didn’t feel comfortable discussing it in front of a stranger who thought she knew me.
What really frustrates me, is the fact that I had been surrounded by medical professionals for days in the hospital. Doctors, nurses, dieticians, specialists. Yet I can’t recall one of them asking me how I was. I don’t mean my blood glucose levels. Or the hospital food. Or why I didn’t eat my white bread sandwich before bed. I mean how I was feeling after a diagnosis with a condition that would affect me for the rest of my life.
The healthcare professionals I was surrounded by at the time were the ones I felt most comfortable around. While I certainly don’t expect them to fill the role of a counsellor or a friend, I don’t think it’s too much to ask them to look at the whole patient. To simply ask something like “how’s it all going.” To show some empathy, where necessary. To help me feel normal, and understood. Sometimes, that’s all we need. Other times, they can help us find greater support.
During last Tuesday’s OzDOC chat, there was a debate over whether patients felt that they were on the same level as a healthcare professional during consultations. I believe that this is a very individual issue, that comes down to both the patient and the healthcare professional.
Some patients contribute to feeling on the same level as a healthcare professional. They are very motivated, switched on, and not afraid to speak up or search for what they want. However we are all different, and not everyone is as vocal in nature.
This is where it is the responsibility of a healthcare professional to make the patient feel on the same level. Some healthcare professionals I have encountered certainly don’t seem to live in the real world where day to day management of diabetes is concerned. Some lack the ability to look beyond what’s written in the charts for an explanation.
Yet other healthcare professionals are able to discuss diabetes management in a very supportive and constructive manner. They are able to motivate the patient and praise their self management behaviours. They are able to see the whole patient.
When emotional wellbeing is prioritised in my diabetes care, I feel motivated to improve on what is contained in my chart. My healthcare professional only needs to put down that chart for a moment, and take a look at the whole patient sitting in front of it.
Today is day 2 of Diabetes Blog Week, an annual event in the diabetes community created by Karen at BitterSweet Diabetes. Here is today’s prompt:
We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)
Being diagnosed with diabetes as a young adult has presented it’s own unique challenges. I had already lived a significant portion of my life without it, which I am extremely grateful for. However, everyone around me knew me without diabetes. It wasn’t just automatically there, which made acknowledging my diabetes publicly a very difficult task. It essentially entailed a new conversation and fielding a whole lot of questions. It’s a risk, and sadly some people react insensitively. Even today, many people still don’t know, or remember that I live with diabetes.
I was diagnosed at an age where I wanted to manage my diabetes myself. I didn’t want to burden others around me with my diabetes. I was, and still am extremely stubborn. The more time that passed, the more I closed myself off. I didn’t talk about diabetes. I struggled to even acknowledge what was going on in my head. I distinctly recall moments where I was struggling with the frequency of my hypos. I was slamming my fists into the wall, and then getting emotional and comfort eating my way well out of hypo territory behind a closed door.
I was very self conscious around my diabetes. I wanted to be seen as normally as possible. I didn’t want to be seen as the sick, “diabetic” kid. I didn’t want people to see me managing my diabetes and pity me. There were times where I didn’t want to test my blood sugar levels in front of others. I’m still very self conscious about injecting insulin in front of others.
Beginning this blog 18 months ago was a big step out of my diabetes comfort zone. I quietly began following other people with diabetes online. I nervously stuck my head into OzDOC chats. I began sharing more about my diabetes than I ever acknowledged in my own life.
Much to my surprise, I began genuinely connecting with other people online. I became extremely interested in diabetes. I became far more motivated around my own management, and standing up for what I want from my healthcare team. I entered the pumping world yesterday, as a result of a decision that I made happen myself. I had the privilege of travelling to Sydney last week, and making some online to in real life connections.
Today, I am still fiercely independent in managing my diabetes. The specifics around my diabetes is still a very personal topic. I don’t often talk about what’s going on with my numbers, my food, and other individual elements of my day to day management. I set the agenda, and my family respects that.
I am, however, more motivated to talk about my diabetes in a broader context. About what I expect from my healthcare team. Elements of my management that I’m hoping to make changes to, or do better. Talking about how diabetes makes me feel. Commenting on the news, and the politics around diabetes. My blog posts are often the subject of dinner table conversations, too!
Today, I am not so afraid of talking about my diabetes in front of others. I comfortably bring it up when it adds value to a conversation. I feel much more confident in the way that I express myself around my diabetes, that I no longer feel so conscious or so pitied. I feel that I am so much more of a “switched on” patient, and in a much better place with both my physical and emotional health.
I feel that the progress I have made with my diabetes over these past 18 months has been so worth it.
To read other posts related to today’s prompt, click here.