What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?
This is long… If you only have time for the TLDR (too long, didn’t read) summary click here.
The Things: Relentlessness. Unpredictability. Body Betrayal. The Unknown.
Relentlessness: I’ve always believed that I can do anything, stand anything for a finite period of time. Feel like this workout is too hard? There’s only another 10 minutes. Having a cold is miserable? But it will be over in a few days. Heat/Humidity is unbearable? It won’t last forever. [of course in NH it will be followed by months of bone-cracking cold but that too shall pass] Diabetes isn’t like that. Tired of pricking my fingers, my daughter’s fingers to test bg? Only need to do that another 8 times today, 12 times tomorrow, and the day after, and the day after, and the day after… There’s no end to it. We change her pump site every other day and mine every 3rd day. We each have a Dexcom site to change every 7-14 days as needed. Every meal and snack means bg testing, carb counting, bolus calculating/dosing. Every. Meal. It’s common to see PWDs online giving a count of how many injections they have done since their diagnosis, how many finger sticks, how many they will do in their lifetime. Those numbers are astronomical. Our daughter was diagnosed at 3 — that’s over 12,000 finger sticks so far. Think about her 10 tiny fingers. I’m somewhere around 30,000. It is the relentlessness of diabetes that makes me feel depressed and hopeless sometimes. It is knowing that our little girl feels that way sometimes already too. I can never give her an afternoon off from diabetes. Neither she nor I can ever take a break. That is exhausting.
Unpredictability: Damn it, Diabetes. When I do the exact same things two days in a row, I want to get the same results. I want to know that my daughter needs 1.4 units of insulin 10 minutes before the meal with a dual wave set in order to have an in-range bg 2.5 hours later. I would like to do my same workout and every time be able to use a combination of temp basal & a specific carb snack to have in-range bgs throughout. I would like to not have to change plans at the last minute, feel sick, interrupt a meeting, send my daughter on playdates or to school without pages of instructions… The unpredictability is so frustrating — this is the piece I wish there was a way to explain to others. No, everything isn’t “under control” – or, if it is at this moment it may not be later. No, the pump doesn’t keep the Bear at a stable bg. No, I can’t tell you what to expect while she is at your house. No, I can’t guarantee that I won’t need to take a break to treat a high or low bg. I think the Bear might be going through a growth spurt right now because her bgs are all over the board no matter what we do. At bedtime she is 113 and her CGM says double arrows down — drink a juice. 1.5 hours later, 380 and double arrows up. Next night 100 and double arrows down — 2 glucose tablets (only 8g Carb), 1.5 hours later 380 and double arrows up. Next night 169 and double arrows down — do nothing. 1.5 hours later 380 and double arrows up. At those highs, 1 night just correct — at 2:40 a.m., still high, correct, in morning still high. Next: correct + temp basal — at 2:40 a.m., still high, correct, in morning still high. Next: correct + higher, longer temp basal — at 2:40 a.m., still high, correct, in morning still high. This will probably go on for a few more days at which point she will start crashing with lows that will keep us up all night. Does this get emotionally wearing? YES IT DOES. Then, see “relentlessness.”
Body Betrayal: So far I think this one belongs just to me and not the Bear. About 6 months after my diagnosis I started having a recurring dream. In the dream I had T1 but I was at a doctor’s office for other symptoms. When the doctor haltingly told me I had [insert terminal cancer here] and had only months to live my reaction was never sadness, fear, anger… it was always relief. Thank goodness I won’t have to live with diabetes. That dream convinced me to start seeing a therapist who specializes in chronic illness & T1. [see “coping”] I hate that it is my own body that has failed me. I am envious of my husband and those around me who just go ahead and eat, their bodies figuring out what needs to happen in order to keep everything running smoothly. Very symptomatic low bgs are another betrayal. Last night I was in a meeting and I knew I was low so I treated but I stayed low and eventually my symptom of spasms around my mouth and stuttering kicked in. That leaves me feeling unprofessional, angry, frustrated, embarrassed. No one at the meeting would think badly of me but I hate my body at those times. I hate feeling out of control. Never mind how scary it can be. [and my struggles with hypoglycemic unawareness haven’t been helping]
The Unknown: Here we have a disease that it is primarily in our own hands to manage but our toolbox is sadly lacking. We have test strips that are giving us data that is suspect, CGMs that are sometimes 100 pts off from the less suspect test strip info, insulins that aren’t fast enough and that last both too long and not long enough, and all those other places in the equation? We don’t have that information at all — no readable data on hormones, stress, exercise impacts, environmental effects, emotional changes, electrolytes, hydration, or other things we don’t even know we need. There are some “x”s in our equation we can never solve for. So, good luck with that. The other unknowns that haunt me are complications, including sudden death. The list of things that could be in my future, my daughter’s future, and that the “future” might not mean when we are elderly but much sooner than that, are more than enough to weigh on mental health. And, don’t forget, the best way (though there are no guarantees) to avoid things on that list is to “manage” bgs well with that half-empty toolbox — doesn’t inspire confidence. Any d-parent can tell you that these fears for our children are so much bigger than the fears for ourselves. Being in fear for your child daily is a prescription for mental unhealth.
Coping: This is already way too long so I’ll go with fairly self-explanatory bullets for these 🙂
- Support – wherever you can get it. For me it is my hubby, friends, the DOC, therapist. I don’t see my therapist all the time but when it feels like things are going downhill I can set up some sessions with her to get back on track and refill my mental health bucket. I would love to have some IRL diabetes friends but that hasn’t happened yet.
- Healthy Choices – Trying to make good choices for myself and our daughter at least gives me a small measure of control. A lot of things I can’t control but I can choose to get some exercise, make sure I provide everything I can to give my daughter’s caretakers the tools they need, choose healthy food to put into my body, help the Bear balance out healthy foods with foods she actually likes… It’s hard to make healthy choices every time, but when I do I can feel good about what I am doing.
- Yoga – I’m not doing this now (though the Bear is) but when I am doing a regular practice this is one of the things that helps the most with the feelings of body betrayal. Seeing that my body can be strong, can do hard things when I tell it to helps me not feel as broken. I wish I had a regular yoga practice now, but in the meantime my outdoor walks help with this as well.
- Reading/Information – I try to stay on top of things relevant to our diabetes so that I can make informed decisions with our healthcare team. I need to feel empowered — I don’t want diabetes to run our lives and I don’t want doctors/nurses to run our diabetes. One of the only things that makes diabetes “better” for me than some other chronic illnesses is that I can manage it myself day to day — that makes me feel less helpless. Also, when I stay up to date on new technologies and medical research I don’t lose all hope that there will someday be even better ways to manage this disease and maybe even something close to a cure. I know it’s a lot farther off than the 5-year promise, but the advances are happening every day that makes it closer than it was when I was diagnosed.
TLDR (too long, didn’t read): Diabetes negatively impacts my mental health through its relentlessness, unpredictability, feelings of body betrayal, and the unknown. I cope by seeking support, making healthy choices as often as possible, doing yoga/walking, and staying informed.
As many others have said, I can’t speak for my loved ones. My husband has his own struggles around our diabetes and certainly the Bear has her own feelings about having diabetes herself and having a mom with T1. I think in families it can be very hard to balance out everyone’s different states of mental health. It is harder for me to help the Bear when she is having a hard time with her diabetes when I am also suffering from some burnout or sadness. I know the relentlessness of my dealing with diabetes stuff gets to my husband as well. We do the best we can day to day.