Kirsty Higgins, Psychologist chats with Reality Checkers about
Fear and Anxiety with Diabetes

[copyright] Diabetes Portal [R]

Kirsty Higgins, registered psychologist in Melbourne discusses with us the emotional impact of diabetes, especially fear and anxiety. Kirsty brings invaluable insight to our discussion as she is specialising in diabetes through her research and practice and has also had diabetes herself for many years.

KATE (MODERATOR): Kirsty, as you are aware, a member of the Reality Check community recently passed away. Those who knew Beck in Melbourne and Adelaide were of course devastated to lose a wonderful friend. And many who hadn’t met her did know her through her many posts on our website. We understand that Beck’s diabetes was a factor in her untimely passing away. Can you please explain to us some of the feelings we might all have, as people with diabetes, on learning of another person with diabetes’ passing away?

KIRSTY HIGGINS, PSYCHOLOGIST: As with any loss, there is such a range of emotions that people can experience and there is no 'right' or 'wrong'. But this incident I am sure has been especially difficult for many of you and has probably raised a lot of anxieties in yourselves in regards to your own health, and has possibly also brought to the surface a lot of fears that may normally be under the surface when coping with a chronic illness that can have severe consequences. I think it would be important for people to talk about how the experience has affected them, as it's so different for everybody.

SARAH: Hi Kirsty - I kind of felt numb. And I felt bad about that. Other people said they were crying.

KIRSTY HIGGINS, PSYCHOLOGIST: Sarah, feeling numb can be a common response in the grieving process. Everyone goes through this process in a different way and at a different pace. There is no 'normal' way to grieve. It's a very difficult thing to go through and it sounds like this experience may have been even more difficult because of the other fears it may raise.

DAVID: I had known Beck only for a short period of time, but we chatted online about 3-4 times a week. For myself, Beck was someone that I could confide in in regards to ANYTHING, no matter what. When I found out she had passed away from another friend with D, I was so shocked that I was almost speechless (which for me is a BIG thing) Beck was always able to make me feel better about whatever was going on in my life. Even some really big stuff. I miss her sooooo much.

TASH: Same David.... Chatted to Beck online... and the mobile...I miss her you know?.. she always made me laugh

KIRSTY HIGGINS, PSYCHOLOGIST: It's good to see that some people are able to remember the positive things about someone that has passed away. It is said that the grief process is coming to an end when you are able to move from feeling the pain of loss to just remembering that person in a positive light and enjoying those memories.

DAVID: I suppose tho that I’m not that afraid of dying from D, as I had a very severe attack of DKA over a year ago (BSL: 80, body temp: 25 degrees, 8 Cardiac Arrests, Renal Failure and Multiple Respiratory Failures)

JAMES: How did that happen David?

DAVID: James: I was going through a lot of emotional stress at that time. I wasn’t looking after my D. The person that I’d lived most of my D life with - 4yrs worth - was of the opinion that D wasn’t a big deal. So with an ex-gf causing me stress, my job causing me stress, having a cold, and not looking after myself, I hit the roof. But this isn’t about me. James if u want to know more, after words ill go into detail for you :)

JAMES: David: I'm sorry your ex felt that way? All my ex's have been very supportive.

TASH: I didn’t have a lot of fear about D before Bec died... I mean I knew it had complications and such.. but just kinda got on with it really... but now I worry... even when I know its not logical *sigh*

KATE (MODERATOR): Tash's comment is very interesting. Can we address this issue of feeling that you know you shouldn't be terrified of complications, but you still are?

TASH: I just find now... I cant sleep thru the night... i mean i know that beck’s hypo was due to continuous hypos the day before... I know that logically... but how do I relax again and tell myself I don’t need to test repeatedly throughout the night... that’s what I struggle with most...and I know its stupid

JULIA: We tell ourselves we 'should' think and feel this, and 'shouldn't' that, intellectualising our emotions. This is where I've come unstuck in accepting and managing my diabetes.

SARAH: Me too Julia! I get upset and frustrated, then upset and frustrated at myself for feeling like that.

JULIA: Why do so many of us believe that we shouldn't be as worried, or as scared as we obviously are? Where did we get the idea that this condition doesn't have to be a big deal?! And that we are somehow failing a basic tenet when we are fearful?

SARAH: Julia - From our doctors telling us to get on with it? And from there being very nearly zero acknowledgement of the emotional impact of diabetes?

KIRSTY HIGGINS, PSYCHOLOGIST: Julia, I believe that because there is often an upkeep of people being 'discrete' with the physical management of their diabetes, that this can sometimes carry over to the emotional management of the illness: people feeling the need to not be overt and openly discuss the difficulties that they have with the illness and it IS difficult to manage. This is important to be open about.

KATE (MODERATOR): That's helpful thanks Kirsty. Do you think by just being a bit more open. Telling our friends/partners when we can't get the sugars up or down. Are frustrated at the blood test lottery etc, we'll be looking after our head much better? Sounds so simple on paper/screen!

JULIA: Yes Kirsty. My ex even told me that "well, everyone else seems to manage OK". We are taught from such an early age not to draw attention to ourselves, be selfish, make a fuss etc, it's no wonder so many of us are unable to admit to feeling scared, and that we need to share this with someone.

MEL: Julia-yep I love that bloody everybody else who copes ok and then you actually find out that many of us are living lives of quiet desperation

JULIA: I've found I'm not so quiet about it now Mel! But desperation is a very apt description. I am now talking with a psychologist attached to the Diabetic Centre I attend - I would hope that all those who need this assistance have it available to them.

MEL: I guess chatting with other ds can help too like here or RC or in person.

DAVID: B4 I had my DKA, I never knew another person with D. Since I’ve been on RC, I’ve had better control, and a better life with D. Knowing/talking to other ppl with D is a MAJOR help to me.

MEL: Kirsty- Isn't it normal to have some level of fear when coping with an illness?

KIRSTY HIGGINS, PSYCHOLOGIST: Yes it's certainly normal to feel some level of fear when coping with a chronic illness. It's when this fear becomes intrusive in your daily life that it's not, and when this is happening it's important to address it, access your supports, etc.

MEL: Kirsty - As you would know, diabetes is very intrusive into your everyday life, sometimes I think the ideal diabetic would be obsessive compulsive.

Kate: I have had diabetes for 16 years and have just been diagnosed with obsessive compulsive disorder and believe me it makes you more obsessed with your d than anything else

KIRSTY HIGGINS, PSYCHOLOGIST: Mel - Diabetes can be very intrusive, and this is something that can be overwhelming, so I think it's also important to focus on how diabetes is NOT intrusive, at what times are we able to go about our lives without it interfering to the degree that it sometimes does? At what times have we felt in control?

KATE: Hi - I was wondering why Bec couldn’t manager to raise her bsls?

LYNDAL: Hi all sorry I'm late. To interject re why beck couldn't get her bsl's up. She had severe hypo unawareness on top of quite a lot of other serious health issues for example she'd had lymphoma

KATE (MODERATOR): Kirsty - Can we talk specifically about being scared of overnight hypos. Even so scared that you have trouble getting to sleep? What would you recommend to someone feeling like this?

TASH: I just want some advice on how to get a good nights sleep again... don’t have many D mates to chat with...except RC... and feel stupid asking really.... but I miss sleeping through the night...and what I hate most is I seemed to have formed a habit now of waking every 3 hours to test... after Beck died I set the alarm to test... then later decided Id try sleeping thru again... but no luck...now I wake on my own and cant sleep again till I test...even if I know I’m feeling ok

KIRSTY HIGGINS, PSYCHOLOGIST: If you are having a real fear of overnight hypos, and this sounds pretty anxiety provoking, it's important to try to identify your thoughts around that fear, and try to be specific, what exactly are you afraid will happen? What is the thought process leading up to this? What thoughts lead you to this particular fear? Once this is identified, deal with these thoughts as hypotheses, not facts, test them out in your mind, has this happened before for you? How many overnight hypos have you had? Have you woken up in the past? You want to be able to disprove your theory and this should hopefully help to alleviate some of the anxiety.

JULIA: Night time hypos - I haven't had one but I live in constant fear of one, as well as daytime ones too! And therefore run myself too high, and wake myself during the night. Being alone and responsible for two young children doesn't help this fear of course.

KIRSTY HIGGINS, PSYCHOLOGIST: Was that helpful for you Tash? Does it make sense what my last comment was re: overnight hypos?

TASH: Yeah I guess.... look I don’t mean to sound like a complete moron...but I came here tonight to try and sort my sleeping out... and well... what you said... it makes sense.. I know why I test all night... coz I’m scared of overnight hypos... what started the fear?... beck’s death!.... have I had them before... yes...but nothing bad... but that don’t seem to make any difference to my thinking at 2am *sigh*.... I probably sound like a whinger...I don’t mean to.... I just hate being nervous about sleeping.. and I’m annoyed at myself for letting it get this bad... so is there a 'magic shot' I can take or something to cure my stoopid brain? *weak smile*

KIRSTY HIGGINS, PSYCHOLOGIST: No magic shot I'm afraid Tash, and overcoming this anxiety won't happen quickly, it takes time, but it is important to test those thoughts that you tell yourself. Do you journal? Perhaps writing down you fears, anxieties, thoughts at night before bed may help by putting them down on paper. And don't be too harsh on yourself. You are going through the grieving process and it's very difficult. You are trying to manage your diabetes at the same time, also very difficult. You are doing a great job by opening up to others about how you are feeling. That's a courageous thing to do that takes real strength.

MEL: If it's any consolation I had overnight hypos 3-4 times a week for about 2yrs before I started pumping. I woke up with jellybeans in my mouth and no idea how they got there -there really has to be other complications and weird things happening for you not to wake up from a hypo.

KATE: I used to hypo lots during the night too until I started a new insulin Lantus.

KIRSTY HIGGINS, PSYCHOLOGIST: Something else that may be helpful with fear of hypos is checking your blood glucose awareness. Before you check your sugars, estimate what it might be, and then see how close you are. This may increase your confidence in how in tune you are with your body, and if you aren't as accurate as you would like, keep a diary of your estimated and actual tests, what cues you might have missed and what you can learn from it.

MEL: But estimates etc don't help when you have overnight hypos.

SARAH: You won't believe this but I was walking down the street last week and had this moment where I though all of a sudden that diabetes was not impacting on my life at that moment whatsoever? It's hard to explain but I just had this moment of being very relaxed about it. Maybe 4 years without having to do an insulin injection (pump) ... but I do think I run my sugars too high just to be safe. Do others do this? And perhaps I've dulled myself into acceptance that this is the best compromise.

DAVID: Sarah: yes I tend to run my levels a tad higher than "accepted" levels, just to be sure. today went for a long walk with my flatmate, so i injected less that i would normally just in case.

SARAH: David - I don't mean when necessary, I mean aiming for 10 instead of 6 all the time, as then I know I won't hypo.

KATE: yes I do run my sugars a little higher too not only do I worry about having a severe hypo but I do heaps of exercise so I tend to feel more relaxed if they are a little higher.

DAVID: Sarah: I can understand the feeling that running at 10 instead of 6 is better. I would rather have a HBA1C of 7.5 - 8 then 6. Not only is it 'safer', but it also allows me to live a more enjoyable life by not having to exercise all the time, and by being able to eat some 'naughty' food every now and again.

SARAH: Thanks David. As a man, you're unlikely ;) to be planning a baby anytime soon where a1c has to be below 7 for a long period prior to conception, and during pregnancy. Contemplating that complicates my feelings and fears I think.

NATALIE: How often is "normal" to have hypos?

KATE (MODERATOR): Hi Natalie - That would be a great question to take up on the Reality Check discussion board. Or even do a search there to see if it has been discussed recently.

LYNDAL: I think a lot of people have been unsettled by Beck's death because there has not been much information available about it. She was known by many people on RC but still a stranger to many who don't know about her many health challenges. Healthwise she wasn't in the same boat as most of us but most of this was unknown so it's come very close to home

MEL: Yes I think that's a really good point Lyndal.

KATE (MODERATOR): As we come towards the end of the program, does everyone feel like they have a few more tricks up their sleeve? Or do you have things you've done for yourself to manage your fears and anxieties which you would like to share?

KIRSTY HIGGINS, PSYCHOLOGIST: I think it depends on where people are at emotionally and how much impact their state of mind is having on their daily lives and their diabetes. I recommend anyone who is having real difficulty to access professional supports where available, and for everyone to just tap into their supports. Reality Check is of course a great support. Tell those close to you that you're having a hard time. Spend some time journalling to get it down on paper. Just take the time to take care of yourselves!

SARAH: I've found over the years I've learnt to answer my friends/family's random questions better and explain diabetes in a way that doesn't have them feeling sorry for me, but does have them understand the complexity. That helps me feel supported and less anxious as the people around me pretty much 'get it'.

JULIA: Tricks up my sleeve I don’t yet have. But please, I would encourage everyone to voice their fears or concerns to educators, endos and GPs as well as friends and partners. I find I feel safer when I have confided my concerns out loud to those I am with.

KATE (MODERATOR): Kirsty, thanks so much for joining us tonight. It's been a really valuable opportunity for us to share our experiences and we really valuable your unique insight of being able to combine the professional and the personal perspective on diabetes.

KIRSTY HIGGINS, PSYCHOLOGIST: I think everyone has done a great job being open about how they are feeling, just remember to use your supports when you need them!