Diabetes is a Family Affair

0:00 [Music]0:07 welcome to the mental health video0:09 series for people living with diabetes0:11 my name is Candace and I'm from diabetes0:14 Canada the immediate impact of diabetes0:16 on a family can be overwhelming what0:19 about the impact of generations within a0:21 family who have lived with diabetes how0:24 did the beliefs knowledge and attitudes0:26 of previous generations affect someone's0:28 ability to cope with diabetes IES in the0:30 present in this session we will talk0:33 with LNA Asam a person thriving with0:35 type 2 diabetes she will shine a light0:38 on the generational influence on0:40 thriving with diabetes in today's0:42 complex and everchanging world thank you0:45 cenace for your0:46 introduction well it's so great to have0:48 you here uh ludna so let's talk a little0:51 bit about how diabetes has impacted your0:56 family so0:58 um I wanted to let you know that both my1:01 grandmothers my paternal and my maternal1:04 grandmothers lived with diabetes and1:07 then my parents live with diabetes I was1:11 diagnosed with diabetes type two we are1:13 all type twos uh my sister however1:16 however had diabetes during her1:18 pregnancies and my brother who is much1:21 younger than I am was just diagnosed as1:24 pre-diabetic so it just is something1:27 that um my family and uh everyone1:32 associated with my immediate family has1:35 had to deal with thank you for sharing1:38 that lunna that is really uh interesting1:41 to hear about uh the people who've been1:43 impacted in your family by1:46 diabetes so seeing that this spans quite1:49 a bit of time can you tell us a little1:50 bit about how maybe the beliefs around1:53 diabetes um has changed within that1:56 context and what that has meant to you1:59 so when it comes to2:02 me I think generation after generation2:05 as we all received our2:08 diagnosis The Fear Factor has only been2:11 going in an upward Trend I think I'm2:14 even more2:15 fearful um now of having my children2:19 being diagnosed or my nieces and my2:20 nephews being impacted by2:22 diabetes I think the one thing that the2:25 on the opposite Spectrum I think the2:28 shame and the blame2:30 was perhaps the most for my2:32 grandmother's Generations when it came2:34 to my parents' Generations I think there2:37 was still a lot of Shame and blame2:38 around it but I think by the time we2:41 myself and my brother and my sister are2:43 now dealing with things uh we kind of2:47 understand that complex problems require2:50 complex Solutions and as much as2:52 possible we we're trying to to to take2:55 shame and the blame away however the2:58 sense of fear is perhaps more most3:00 heightened right now so my grandmothers3:03 also their view of having success in3:06 living with diabetes was to have no3:08 diabetes at all they wanted to get rid3:10 of the disease when it came to my3:13 parents I think an understanding of what3:15 critical conditions are while living3:17 with them was a lot more socialized and3:21 I think uh when it comes to me and my3:24 brother we kind of know that it is about3:28 managing diabetes about living the most3:30 fulfilling life about having realistic3:33 expectations about life of diabetes3:36 rather than I am unsuccessful if I am3:39 living with diabetes I'm successful if I3:43 live a life without diabetes that3:45 narrative has changed one of the other3:47 things too that has changed is um my3:50 grandparents really believed in uh3:53 complimentary therapies as someone who3:56 you know was of a certain generation uh3:58 the trust with medic4:00 systems uh perhaps was not as much as4:03 their trust within their networks and4:05 within the more traditional ways of4:08 managing diabetes I remember like them4:10 drinking really bitter juices every4:12 morning and things like that I thank God4:15 I don't have to do that anymore but I4:17 think um I think my parents generation4:20 was more like hey if anything helps I'm4:23 not going to to to to disregard it but I4:27 think with me and my brother we are4:29 looking for more evidence-based Su4:32 proven success methods to that we kind4:35 of um take on and that does impact your4:39 mental health too if you're trying to4:42 drink I don't know bitter Gore juice and4:45 cinnamon teas and your blood sugar4:47 levels don't stabilize uh for whatever4:50 reason the the the amount of4:53 self-blame I think is can be quite quite4:57 extreme and then um5:00 so these are some of the things um the5:02 other thing too because of globalization5:04 because of the modern world we live in5:07 um I think that my grandmothers had very5:11 um limited exposure to World Cuisine the5:15 amount of world Cuisine me and my5:16 brother have exposure to the amount of5:19 choices that we have uh while managing5:22 um you know foods with lower GI index I5:26 I I think we have we are a lot more5:28 socialized to to to Modern ways of5:31 managing our5:34 diabetes great thanks so much for5:36 sharing that mov so tell us a little bit5:40 about how this has impacted you um first5:43 we can talk a little bit about how has5:45 this impacted your mental health I5:50 think I really struggle the emotional5:54 load of knowing how this um can5:59 condition has been is is being passed6:02 around in my family I am really worried6:04 about my children's safety I'm worried6:06 about the health outcomes for um for for6:09 for my nephews for my nieces and also6:15 about also about dealing with opinions6:18 and judgments we don't live in a world6:19 all by ourselves so you know um there is6:24 huge amount of stigma associated with6:28 what what it could be causing diabetes6:31 how there's a blame that is to be6:35 associated with with it like taking it6:37 on myself um if I don't feed my kids6:40 right am I putting them at a greater6:43 risk there is a huge mental load6:47 on on my you know just just I have seen6:52 what it was like for my grandmothers who6:54 lived in India they were trying to and6:57 also they lived in southern parts of6:58 India where rice is a staple it was very7:02 difficult for my mother-in-laws to like7:04 you know avoid all carbs because that7:07 was the way to manage diabetes at that7:10 time like you know try to avoid all7:11 kinds of rice I7:15 however uh the fear7:19 of you know of eating wrong of feeding7:23 wrong7:25 of of creating a um a a space within7:29 your your house where your children are7:33 at a higher risk because of the way you7:35 are caring for them is a huge mental7:38 load and it is not just motherhood I'm I7:40 don't want to just say it is just the7:42 load of motherhood I know that my when7:44 my father was diagnosed with with7:47 diabetes too he really struggled with7:50 coming to terms with how this would7:52 impact my like his children right so um7:58 there there is a lot of like self-blame8:01 that goes on and there's a lot of8:04 um a lot of adjustment that needs to8:07 happen especially with my grandmothers8:10 like I really think that um their go-to8:13 mental health8:16 way coping method was to tough it out8:20 because asking8:23 for uh8:25 supports identifying as someone who has8:28 um you know8:30 those real emotional lows while managing8:34 uh a complex life it was so deeply8:37 stigmatized and it was associated with8:40 like you know being ungrateful there are8:42 all these cultural aspects of like you8:44 know of of Faith culture um and uh8:49 society that that really I don't think8:52 my grandm mother mothers had the choices8:55 that I have while managing my mental8:58 health I think my parent par generation9:00 they are they were the ones who open the9:03 doors they understood that not every day9:05 is going to be a good day there going to9:07 be you know some good days some bad days9:10 throughout our lives and um I don't know9:13 how open that that my parents were when9:16 identifying their mental health needs9:19 but I'm definitely sure that by my9:21 generation what has happened is I not9:24 only understand that there is there are9:27 good supports available I understand9:29 that it is a trial and error I9:31 understand that on on so many wonderful9:33 days when I am9:35 feeling like I need help I know what9:39 helps me by now I9:42 know who to ask for support and I am9:45 open to all forms of intervention9:47 whether it is therapy whether it is9:50 self-compassion whether it is uh9:53 medication so when it comes to mental9:56 health perspective identifying Liv and9:59 managing mental health have all been10:03 individual Journeys10:06 but it is not like the best you never10:10 get to choose the cards that you you10:12 have you get to play with in your life10:14 but I think uh because we going through10:17 it as a family we have strength in in10:20 companionship with each10:23 other thanks so much for sharing that10:25 Luda so in thinking about how the10:29 different Generations in your family10:31 have managed their diabetes differently10:33 according to their context at the time10:36 how has that impacted diabetes10:38 management for10:40 you10:43 though I think there is like an idiom or10:45 saying out there that says that the best10:47 time to live is now because I actually10:50 remember being in ninth grade and my10:53 grandmother boiling glass syringes and10:57 metal uh sorry GL metal needles and11:01 having little vials of diabet of insulin11:04 in the uh in the fridge and um you know11:08 testing her uh blood sugar levels her11:13 urine sugar levels and then my parents I11:17 they thought they had it so much better11:19 because they had access to Long acting11:20 insulins and um you know met metformin11:24 and all11:25 these the choices in how11:29 many interventions and therapies are out11:32 there has exploded so the amount of time11:37 that it took for my father to see11:39 someone who is an endocrinologist to11:40 identify the right interventions for him11:43 and then contrasting that with how11:46 quickly my brother was able to find um11:50 support and help of a qualified11:53 endocrinologist I have seen the change11:55 happen and of course that gives me that11:58 gives me hope hope for future you know12:01 the other thing that has happened is um12:05 my grandmothers they didn't have access12:07 to the kind of research we do what has12:10 happened what used to happen in that12:12 generation is if anyone discloses people12:16 would collect information from each12:18 other oh how do you manage this and how12:20 do you manage that do you feel thirsty12:22 do you feel sleepy what H like what is12:26 happening they would compare notes12:28 Within12:30 you know that Sisterhood of of of women12:32 that they would interact with those who12:34 were brave enough to share those who12:36 were open enough to share so they didn't12:38 have access to the the research so they12:40 were never like testing how fenric seeds12:44 were effective like there was no way of12:46 of scientifically proving the evidence12:48 so that was one of the things they their12:51 access to information their ability to12:54 separate information from12:56 misinformation um uh uh their access to13:00 the kinds of different treatments that13:03 we have their access to Internet I I I13:08 think internet is can be a great boom I13:10 think you can find great13:12 advice depending upon who you interact13:15 with and depending on your Instagram and13:18 your Tik Tok algorithms you can have13:19 access to some great information which13:21 is out there my grandparents did not13:25 have as much access to it they did not13:27 have the ability to separate information13:29 and misinformation and then uh my13:32 parents they had some amount of13:35 information but again um culturally I13:39 think I think that finding information13:42 from your peers listening into what your13:44 peers are saying uh cross referencing13:47 their the the the the researches uh that13:51 they hear about things that you know how13:54 how information is getting to them was13:57 very different and I think think14:00 um not only I not only do I have access14:05 to all this information because I you14:07 know I'm so I live in the now I also14:10 have great hope for future Generations I14:12 think there's going to be14:15 better research there's going to be14:17 better interventions there's going to be14:19 a lot better knowledge that Empower14:21 people in future uh hopefully as we work14:24 towards diabetes world without the14:26 effects of diabetes one day I do think14:29 that when it comes to management14:32 perspectives having the right attitude14:35 having the right having the right14:38 expectation and having the right14:40 information can really make or break uh14:43 the14:45 game I agree with you Luda I think that14:48 there's so much uh now that uh we can do14:52 to support diabetes management and I14:54 agree with you that there's a lot of14:55 Hope for the future so I want to ask you14:57 now about your diabetes management what15:00 kinds of things have you done that uh15:02 you you find work well for you in terms15:05 of managing your diabetes but also15:07 recognizing that managing diabetes15:09 itself does come with um you know as you15:12 mentioned an emotional load and can be15:14 challenging for mental health how do you15:16 manage that aspect as well how do you15:18 manage your mental health what tools do15:20 you use for15:22 that um it has not been an easy Journey15:26 understanding my own mental health15:28 understanding my needs and finding out15:31 what works for me um I like to set daily15:35 goals because I find that exercise works15:37 for me again I'm going to breakfast what15:39 works for me as what works for me having15:42 a set of goals where I know what are my15:45 minimum get getting done and you know15:48 what are like the big picture goals that15:49 if I get done today great I'll mark it15:52 down as a celebration but if I don't get15:54 it done today you know what tomorrow15:57 hopefully will be another day is a good15:59 um one of the things that I find helps16:03 me quite a bit is going out for for a16:06 Wheeler on the neighborhood and as you16:08 can imagine it is it is accessible to me16:11 only during like you know beautiful16:13 Canadian Summers it is not accessible to16:16 me during Canadian Winters so it's not16:19 something that I can practice16:21 daily the acceptance of the fact that16:25 you know there are going to be great16:27 days they're going to be good days but16:29 they're also going to be bad days in the16:31 mid so I think we Define a like16:35 understanding the definitions and moving16:38 some of the limits like hey it's not is16:40 it a bad day just because I have to do16:43 dishes possibly not is it a bad day16:46 because you know I'm going to have to16:47 shoot myself in my stomach and get my16:51 medication maybe not I I don't think all16:55 those things now um16:59 I've had to change my definition of bad17:00 days that's what I'm trying to say a bad17:03 day is not definitely a day where I have17:05 to have like no medication or things17:07 like that um so so learning to identify17:11 what makes a good day a good day what17:13 makes a bad day a bad day17:15 helps and then asking for help because17:19 you know sometimes when you are in those17:22 grayer17:24 days what I used to do is I used to17:27 either isolate or I used used to freeze17:30 or I used17:31 to not ask for help and I know now17:36 that everyone is more than happy to help17:40 you out I think this is the magic of17:43 humanity the beauty of humanity really17:46 is that I have found more people in my17:49 life who who are willing to hold my hand17:51 sit down with me and be like hey how can17:54 I be present so firstly making sure that17:57 you know who those relationships are17:59 investing in those relationships and18:01 then being able to give back when you're18:03 asked to hold someone's hand and sit18:05 with them um is a good idea um and then18:10 what I have realized is with my18:13 self-awareness came an um the18:15 realization of perspectives for me when18:18 I remember my grandmother saying I have18:21 sugar when they would disclose their18:23 diagnosis I know my parents say I manage18:26 uh diabetes but when it comes to me I18:29 would like to say that I'm doing the18:32 best that I can so I am a champion for18:35 diabetes management I think that really18:38 helps me in um framing my mental health18:43 I also use other tools in my toolbox I I18:47 like to I'm a maximalist when it comes18:50 to trying out things as someone who18:53 lives in a wheelchair as someone who is18:56 of South Asian origin as someone who is18:58 a mother as someone who is um living in19:02 a very complex world what I also have19:06 access to is is drugs and19:09 therapy um medication that can help me19:13 um when there is not enough sunlight19:15 when there is too much snow on the19:17 ground or when my baby is going back to19:20 University I know how that affects my19:23 mood I know how it affects my mood if I19:26 have not been able to go out and enjoy19:28 enjoy the beautiful day so I know19:34 that I'm not going to say no to a to too19:36 quickly without giving it its due I want19:39 it to be able to offer me help before I19:42 say hey this wasn't helpful and it's not19:45 like I will accept everything blindly I19:47 have said no to many things but yeah19:50 self-awareness is is is the key here for19:54 me that's so wonderful thanks again for19:56 sharing all of that it's so really uh19:59 beneficial I think for a lot of people20:00 to hear your perspectives so you've20:03 already talked a lot about the different20:05 ways that you uh handle your diabetes20:08 management and what works for you I'm20:11 wondering if you could talk a little bit20:12 about some additional supports and20:14 resources what other tips you might have20:16 for those who are watching this uh that20:18 they could use to help support their20:20 diabetes management and their mental20:23 health uh in my experience because of20:27 living um20:30 living um because of living with a20:32 physical disability because of using a20:34 wheelchair uh it puts me at a higher20:36 risk of developing pressure injuries and20:38 I think that is the reason why my uh20:41 doctor was completely on the ball with20:44 my diabetes management whereas when it20:48 came from my Mental Health Management I20:50 had to be the strongest Advocate that I20:53 have to be for myself I think the first20:56 comes acceptance that this is not normal20:58 nor Al what I am feeling these um21:01 feelings of helplessness this feelings21:04 of numbness these these are not normal21:07 healthy feelings uh I think there is a21:10 level of self-acceptance that comes21:12 first then asking for support then21:15 making sure that21:16 you convince your family doctor that21:20 this is important and it needs to be21:22 looked at is is um you know it's a21:26 partnership um and sometimes you have to21:29 invest more than the other but don't be21:32 afraid to be your own um your advocate21:36 for your both your diabetes management21:38 and for your me mental21:40 health the other thing21:44 is21:45 be be the support you need if your21:50 family came to you and I said hey I need21:53 more information on Diabetes you As a21:56 caretaker I would probably jump right on21:58 to the internet and be like this is the22:00 diabetes Canada info number this is the22:02 Canada diabetes Canada referral support22:04 numbers and stuff like that but22:07 sometimes we don't do it for ourselves22:08 it could be just because we dealing with22:10 so many things so I would just say hey22:13 support22:14 yourself um22:17 to go out there see what is available on22:20 our info um uh Ino line email them if22:25 needed call them if needed be your own22:27 biggest support22:29 the other things that have helped me is22:32 like I'm someone22:34 again who22:36 loves free supports that are available22:39 so whether it is going on YouTube uh22:42 finding out how to meditate uh learning22:44 how to maybe do some breathing22:47 exercises um then finding out what are22:51 the online counseling services that are22:52 available to you like I I know that most22:54 of the workplaces have eaps um that are22:57 available22:59 and then again know your the city that23:02 you're living in or the the geography23:04 you're living in and then I found a lot23:07 of supports through the the health23:09 websites that are out there they will23:11 usually send23:13 you to really good places again invest23:18 in that relationship with23:19 your primary care23:21 doctor don't be afraid to go on the23:25 internet find out what's available23:26 through the website and and then also23:29 explore what's out23:31 there thank you so much LNA for sharing23:33 all of your experiences with us and for23:36 shining a light on how um your family23:40 has dealt with the impact of diabetes23:42 over time and how that it has an impact23:45 on you and your diabetes management as23:47 well as your mental health I think our23:49 viewers will really find you know23:51 walking into your world and seeing what23:53 it's been like for you so valuable so23:55 thank you so23:56 much thank you so much candas and for23:59 this opportunity uh with diabetes Canada24:02 as someone whose Generations have uh24:04 lived with diabetes and managed their24:06 diabetes I want to say thank you for the24:09 work that has been done for how far we24:11 have come and from the future24:13 Generations it is always unclear who24:16 will need supports from diabetes Canada24:18 but we know that we're building for for24:21 a way to support all our future24:23 Generations so that is wonderful thank24:25 you so much for this opportunity24:34 [Music]