On Halloween, 3 years ago, I found myself hospitalized for three days with a new Type 1 Diabetes diagnosis (after being bullied, ignored, and misdiagnosed multiple times by doctors for about 9 months). I was hospitalized with blood sugars so high, it didn’t make sense to the doctors that I wasn’t weak, vomiting, unable to walk, or in a coma. Practitioners were scared for me and I was pretty calm about the whole thing; I kept being told “this is going to change your entire life!” and I kept thinking “okay, whatever.” At the time, I was just so grateful not to feel completely awful physically and emotionally with “no reason” as I had been for the better part of the year, that incorporating shots into my day-to-day seemed like an easy fix.
Recently, I discovered in a meditation that I had another undiagnosed condition, another autoimmune disease in addition to Type 1 Diabetes. After a rather traumatizing experience previously attempting to convince doctors that I knew something was wrong with my body, it took me months to even make an appointment and go. I’ve experienced chronic, widespread pain for the last five or more years, increasing in severity and length of flair-ups over time. It was always something I could find an explanation for, until it really wasn’t. It took being married for someone to notice and say to me, “You are in pain every day. You don’t have to live a life of pain.” to realize that I was indeed living in pain every day, justifying or ignoring it. Then, this answer in meditation came and I was certain that I had Fibromyalgia. It’s shocking to me that amount of mental stress and fear that going to the doctor brought, and thankfully my wife could attend with me and encourage me to stay strong in reporting my symptoms of pain. Fibromyalgia is incredibly difficult to diagnose, until all other autoimmune diseases and other illnesses are ruled out, but the doctor confirmed it was likely after my very first appointment with her. This round of visits I was not so calm or peaceful about the diagnosis. While it brought me relief of uncertainty, it also brought a feeling of unfairness and questions about my purpose in life. There is this theory an acupuncturist told me about research connecting Type 1 Diabetes showing later in life after traumatic events. There’s also research connecting Fibromyalgia to developing because of traumatic and/or stressful life events. I obviously didn’t desire or request this aspect of the human condition, so it’s a struggle to see how past traumas only beget more trauma. Currently, I’m still struggling with this new diagnosis and how to transition to responding and attending to the needs I have to reduce the chronic pain symptoms in my daily life. While, this is not a permanent situation, it is long-term and with a life dedicated to joy and healing, I know I will find balance and ways to manage how I show up in the world.
Recently, Chronic Babe posted an article about the condition Lupus with the question, “what 8 things do you want people to know about your invisible illness?” and I felt compelled to respond in time for the anniversary of my Type 1 Diabetes autoimmune disease diagnosis.
1. It’s exhausting.
It’s exhausting managing diabetes. My brain is constantly running the numbers. I carry around multiple types of insulin and my blood glucose meter with me everywhere. I wake up, check my blood sugar to ascertain if I’m at a good starting point to function, give myself a shot to start the day to cover the small secretion of sugar that my liver pumps out and then determine what kind of food I can eat for breakfast. This part can be tricky, because if I start the day with low blood sugar and plan to bike to work, it means I won’t make it without my blood sugar dropping and feeling sick. So I have to eat carbs to produce a level that I can afford to physically exert myself with. But I also have to be careful not to eat too many carbs so that my blood sugar levels run high and don’t regulate. Then, I have to do this again for lunch and dinner: check my blood sugars by pricking my finger, decide how much food I am going to eat, prepare my shot, stab myself, and eat only that amount I decided. Every body is different and every body has a different ratio of carbs versus 1 unit of insulin. Think about what you eat in a meal… can you tell me how many times 15 grams of carbs is repeated in it? That’s how many units to take if you’re operating with my personal ratio! (It’s actually 17, but who can do that math as quickly?!) Now, so far things seem a little simplistic, however, did I mention that the effects of exercise can stay in your body for 24 hours? Did you know that stress or a menstrual cycle or a cold virus can dramatically affect your blood sugars as well? Sometimes, it’s hard to keep track of all the variables when they are absolutely invisible and you are left with blood sugars roller-coastering and wreaking havoc on your day. I have to be constantly aware of what foods I am putting into my body, even tiny snacks or tastes while cooking, counting, processing how it relates to my current blood sugar and what I will be doing next in the day, and more. This is only part of the stress, because when those blood sugars are anywhere outside of the “normal” or desired range (80-120), then my body has symptoms that make it hard to function or actively participate in responsibilities.
2. HIGH versus LOW
Sometimes, even when I feel I am doing everything right, like my numbers must be spot on, I can be drastically wrong. For example, my blood sugar was running high one morning, even though I hadn’t eat anything and checked hours prior when it was in the normal range, so I “corrected” (which means to give myself a unit of insulin for every 50 points above the normal range I am) in addition the amount of carbs in my meal. Digestion is supposed to last about 1.5-2 hours which at that point I should have eaten all my carbs designated by insulin usage so to not have an overlap. At times, this is the point where a diabetic can drop to a low blood sugar. I went from high blood sugar of nearing 200, to 51 in a span of two hours, though I counted everything right. Low blood sugar personally treats me shittily. I am nauseous, shaking, sweating, heart palpitating, nervous, anxious, panicked and depressed that my body has betrayed me in this way. People have been known to faint or be so shaky they fall over – this does not discriminate by place, it could happen in dangerous situations, waking up in the middle of the night confused, or just in your average workplace.
To recover from LOW BLOOD SUGAR, an individual must ingest carbs. Doctors recommend 4 oz of juice because they can’t confirm you won’t accidentally bite your tongue when trying to eat something, but second best is fruit or simple carbs that process rather quickly. I carry fruit leathers or fruit snacks for these emergencies (unless I eat them and forget to replace in my bag). After 15 minutes (of feeling really awful, mind you), you’re then supposed to check your blood sugar and see if you need to correct even more. Those fifteen minutes of feeling weak and ravenous and exhausted and shaky feel like forever. And when they’re over? Often, I feel tired as if I had exercised extravagantly, taking hours to feel back to my normal self. There are days that my blood sugar can ride a rollercoaster and leave me feeling physically, emotionally, mentally, and spiritually exhausted, leaving little capacity for social events because of the hurdles I invisibly traveled through already. HIGH BLOOD SUGAR is very different, but shows some of the same symptoms. Usually I get moody, headaches, sluggish, sleepy, and cranky. The effects of HIGH BLOOD SUGAR are long-term, as they irreparably damage your organs, eyesight, sense of feeling, and more. Sometimes, I gamble with preferring to be in a state of higher blood sugars because I am terrified of dropping low while at work, or while biking, or while doing something important. I’ve heard horror stories of diabetics fainting off their bikes, passing out and landing on something sharp, etc etc.; however, this is damaging to me in long-term physical ways. This is another stressful mental and emotional battle that I am constantly aware of. The perfect range is a moving target that is incredibly difficult to find and maintain.
To recap, to treat low blood sugar – I need fast-acting sugar. To treat high blood sugar, I need insulin. When I eat and put carbs into my body, I need insulin to counteract.
3. I COUNT CARBS, not sugars.
Total Carbohydrates is what matters to me, which includes the various types of sugars that a food contains. Labels on processed or packaged foods label this for me, but homemade foods are trickier to count for my ratio planning of insulin units to take. Sugar-free snacks and the like still contain sugars that my body responds too! Technically, I can eat whatever I want (if I had a nickel for every time someone said “but you can’t eat that!”…) as long as I respond with the appropriate amount of insulin. Homemade foods or food at restaurants can be harder to estimate, so I am supposed to check my blood sugar again after 2 hours from my original shot to adjust as necessary. Simple carbs like fruits (again, if I had a nickel every time someone told me fruits are not carbs…) take affect on my body quickly, while complex carbohydrates (like breads and starches) take longer to infiltrate my system. Insulin usually take about fifteen minutes to take affect, so I have to eat immediately after giving myself a shot.
4. Everything you think you know about diabetes is wrong.
Let me say that again, everything you think you know about diabetes is wrong – including comparing me to your grandmother with late-onset diabetes (also known as Type 2 Diabetes) and what you saw in Steel Magnolias. This half-information and those stereotypes keep me from feeling safe in public, from doctors and nurse practitioners giving me correct treatment, and from telling my employers of my condition for fear of being misunderstood and/or let go.
5. Yes, it hurts.
It’s odd to me how many people say to me in response to learning about my chronic illness, “I could never give myself a shot.” Maybe I would have thought the same thing years ago, but I have to give myself multiple shots per day to survive, to live a life of quality, to not feel horrible, and to lengthen my life span. More than shots, though, the finger pricking to test my blood sugar hurts immensely. There are so many tiny little nerves in our fingertips and now my fingers are riddled with little tiny holes that I can’t avoid seeing. I have to intentionally hurt myself multiple times a day to live a better life. I often hesitate beforehand. Sometimes, I even avoid checking my blood sugar and/or eating any food because I can’t stomach the idea of stabbing myself yet again. But, it doesn’t go away just because I avoid it. It still hurts every time.
And more than that, the affects of low & high blood sugars also hurt. On top of that, I also struggle with a chronic pain condition of Fibromyalgia. Both of these individually and together provide reasons for anxiety and depression, which I also struggle with. It all hurts on a physical, emotional, spiritual, and intellectual level. Some days, I barely think about that latter aspect of the pain, but some days are riddled with thoughts that I cannot escape it… ever.
6. I’m not going to get ‘better.’
Diabetes doesn’t go away. It is not magically going to go away. There is no cure.
There are many, many amazing and smart and clever and helpful ways to manage the autoimmune disease, including but not limited to insulin injections, exercise, dietary restrictions, talk therapy, spiritual counseling or practices, and creative outlets. Even with all of these, it’s still not going away, but I can attend to my needs in ways that help me live a quality life. There’s an idea that having Type 1 Diabetes can make you more susceptible to other autoimmune diseases, colds, and viruses because of having a compromised immune system. I don’t know if this is proven, but I do know that it is true for me, considering the new diagnoses of Fibromyalgia, but also that I get sick (colds) easily and retain those effect for a long time.There’s this wonderful concept called the Spoon Theory created by Christine Miserandino
. The idea is that everyone gets the same amount of spoons to complete their day. For some who struggle with chronic illness or disabilities, invisible or not, a simple task may take more spoons than it does someone without those conditions. This Halloween, I went out and had a wonderful evening. However, the evening borrowed spoons from my next day which means a day in more physical pain–and I don’t drink alcohol, so this isn’t a recovery that is impacted by such play, but more so my body being compromised by own body. I highly recommend looking into the Spoon Theory Game
to get a glimpse into how and what everyday activities can be a struggle for individuals living with chronic conditions, more so than even myself.
7. Am I lucky?
I read this article
about how women experience a dramatic increase in invalidation of their real life pain and I wonder if I’m lucky to have had only a 9 month span of being undiagnosed (2 x misdiagnosed). Not only that, but I had insurance at the time (and even still now) and can receive medications and help as I need it. My whiteness plays a large role in that as well and I definitely received a difference in treatment when I used Medicaid in comparison to when I had/have Blue Cross Blue Shield… different treatment from the same exact practitioners.
Furthermore, I am supported by a wife who understands what I am up against and how my medical condition works, what triggers are, and how to respond in all varying degrees of my health.
I’m not brave. Brave seems to insinuate I have a choice in this matter. Which, I suppose in some ways I do. I could choose to ignore my medical reality and responsibility, but to keep living a quality life I have to pick my fingers 3-6 times a day, which hurts like hell, and give myself 1-4 shots a day. It’s more often than not, depressing and annoying and frustrating. I spend a lot of time thinking about food and how many units that is (hoping I’m estimating right) and how many shots and the number game with unknown variables and it hurts and it’s forever. So at best, I’m neutral about it and don’t feel brave. When you suggest a ‘cure’ or that I’m going to get better, I hear something entirely different
. It suggests that I don’t know the best research and practices (as this is my everyday life), but also that I am not trying hard enough or that it’s my own problem and you don’t want to hear. You probably don’t mean it like that, but being upbeat or positive about an invisible illness isn’t always possible… and that is okay.