When I began dating my husband Tom I couldn't have told you the purpose of the pancreas, let alone the difference between Type 1 and Type 2 diabetes. An ever-growing epidemic in the United States, Type 2 is typically the result of diet and lifestyle choices and largely preventable. It's a disease that we've unfortunately become accustomed to hearing about on a regular basis. But what about the millions in this country living with Type 1? They seem to have been lost in the discussion.
Both diseases are a result of problems with insulin, one of the hormones the body uses to regulate blood sugar and derive energy from food. But that's where similarities end. Very simply put, Type 2 diabetes has to do with insulin resistance. The pancreas produces it, but the body doesn't use the insulin properly. Type 2 can be managed through a combination of diet, exercise and medication before (if ever) resorting to insulin injections. Meanwhile Type 1 is an autoimmune disease (often diagnosed early in life - in Tom's case at 2 years old) in which the pancreas stops producing insulin altogether. Type 1 diabetics rely on insulin injections to lower blood sugar. Insulin is not a cure; it simply allows a person with Type 1 to stay alive.
The complications of Type 1 diabetes are grave, both short and long term. Administering too much insulin can cause low blood glucose (hypoglycemia), which can lead to seizures, coma and in extreme circumstances, death. On the opposite end of the spectrum, not enough insulin can cause very high blood glucose which can lead to diabetic ketoacidosis (DKA), a life-threatening condition in which the blood becomes too acidic. The longterm complications are equally terrifying: blindness, kidney failure and limb amputation to name a few.
Life with Type 1 is a perpetual, exhausting tightrope act. The goal is to achieve optimal blood glucose levels without going too high or too low. But despite constant finger pricks to check/re-check blood sugar, meticulous dosage and timing of insulin boluses, counting carbs and considering a myriad of other factors, it is virtually impossible to mimic the human pancreas. Factors that impact blood sugar include and are not limited to: all food (healthy or unhealthy), stress, imperfect timing and/or dosage of insulin, dehydration, exercise, weather, sleep (too much or lack of), inconsistent schedule, hormones, caffeine, illness...the list goes on.
Tempering my anxiety over Tom's disease while being a supportive (but not overbearing) partner is something I work at on a daily basis. Lows in particular are a constant struggle for me. After having the disease for over 33 years, Tom has developed a dangerous condition called hypoglycemic unawareness in which he can no longer feel the symptoms (shakiness, lightheadedness) that serve to warn of a dropping blood sugar. I worry he'll go too low while he's driving, while he's sleeping, when I'm not there. I worry about everything.
I often think about how unfair it is that Type 1 diabetics never get a break from the burden of such complex, unrelenting disease. One can't take a pill and forget about it for a few hours. Imagine having to manage a disease without a rulebook - it behaves differently for each person and under each circumstance. Type 1 requires attention and action 24/7, so it's easy to understand how one might feel burned out or isolated. I've told my husband that I wish I could take his place, even for a single day, so he could know the freedom of life without having to think about blood sugar.
All this being said, to know Tom is to know the happiest guy on the planet. I marvel at his strength, his commitment to his health (particularly when it's not easy, which is most of the time), his childlike joy for life. His absolute refusal to give in to bitterness. Every single day with Tom is filled with adventure and belly laughs. Yes, Type 1 is always there, looming, but never able to define him. He won't let it.
Documenting life with Type 1 has been cathartic for me, and I hope can bring some awareness (however small) to the plight of all Type 1 diabetics and their families.