A Love Letter to Chronic Illness

Anger, resentment, fear. That’s what I mainly feel when thinking about my disease. It’s a pain the ass, it needs constant, unrelenting babysitting, it’s expensive. It gets in my fucking way. It hurts and makes me feel sick. There is no cure. The cold truth is that my life expectancy is 13 years shorter than a “normal” person and the risk of complications as I age is high (neuropathy, blindness, kidney problems, other auto immune conditions, heart disease, stroke).

But that’s not a love letter, is it? I was recently challenged to write a letter to my disease that celebrates it and gives thanks for the blessings it has brought me. I have a lot of anger I’ve been carrying for 17 years now and starting this feels clumsy and really uncomfortable. The hostile thoughts are here and writing anything positive almost feels like betrayal. With saying that, I’m at a point where I want to find a way to forgive and accept what is mine. I need a new way to think, I’m not getting anywhere swinging at the giant wind mills that will never be defeated.

Life is strange and opaque and serendipitous. I was diagnosed at 13 years old and was determined to tell every doctor to go to hell and do exactly what I wanted to do, regardless of treatment protocol. I heard doctors whispering to my mother that I would “accept” my disease better if I attended a summer camp that exclusively hosted campers with my same ailment. I could hang out with kids “like me.” I was horrified. I strongly believed (and still kind of do…) that people with my issue are weenies. They’re scared little shells of people who don’t like to adventure or suck the marrow from life. I especially despised them at 13 — I saw myself as a this worldly and mature teen (lol)who was going to party and take risks and do teen things no matter what. I remember cussing at my mom, telling her I was. not. going. The reality is I was 13 and couldn’t do a damn thing about it. I got on a bus that summer full of eye rolling and disdain.

Seventeen years later, I’m married to a boy I met there. I know, I know, ridiculous, right? In my defense, 90% of the kids there were class A nerds, sheltered kids who had been helicopter-parented since day one and were scared of everything. My parents found it especially hilarious that I came home with boyfriend I met at camp.

The question I ponder sometimes is would I have met ES if we had both been healthy kids? I really have to think not: we lived on opposite sides of the valley, had no mutual friends, came from extremely different socio-economic backgrounds. I struggle with this — did my disease bring me my best fortune? Did I find the love of my life as a direct result of being damaged? ES is my best friend, truly, and we’re deeply in love. So, to the cells that won’t work, to the DNA that’s damaged, thank you for leading me to him.

Even though ES and I are partnered for life, as I said, I have a shorter life expectancy than other healthy women in my area. This isn’t a good thing on the surface, but I have been forced to recognize my own mortality a lot earlier than most. I know that I don’t have a guarantee of a long life, and even if I do, it might be held hostage with health problems. Knowing this, it’s easier to gain perspective and to make decisions on what I value. I look around at people who devote their lives to their careers, who spend time and energy chasing bigger houses and nicer cars and I feel secure in my struggle to live more simply and with less. I know that when I die, I will not wish that I had spent more time at my desk. I’m naturally a Type A / Workaholic disposition and I think that my disease has tempered that and helped me to be more grateful for what I have.

Knowing that there are no guarantees for me has led me on adventures that I treasure. I’ve traveled, I’ve lived out of the country, I’ve said yes more often than my super pragmatic brain would have agreed to. Even now, I’m planning a trip to a tiny island in Nicaragua that will take 2 days of travelling by plane and boat to reach. I feel like I have to go now, because if I wait…the ability to travel far to remote places might evaporate. Naturally, I’m cautious and I plan and I wait. I’m grateful that I’ve had something that forces me to act a little quicker and with more recklessness.

I’ve written in other places that I struggle with depression. People in my shoes have a higher instance of depression and it seems the jury is still out on whether the depression is brought on by the constant low grade stress of managing a chronic condition, or whether there are some chemical / biological / hormonal issues resulting from my disease that lead to disruptions in mood. Regardless of whether the depression is related to my illness or whether it’s environmental or genetic, I believe I got treatment faster because I already had a relationship with a children’s hospital and my mom got referrals from physicians she trusted.

There have been periods where I’ve had to battle fiercely to get my mood back, get my marriage back and get my life back. It’s been hard, and I don’t wish the experience on anyone. But. I’ve met a lot of wonderful people in treatment and I’ve learned a lot about myself. I’ve come to appreciate my depression — without it I don’t think I would have the same creativity or appreciation for beauty. I believe I am stronger and richer because of my dark days.

Working through depression has also forced me to come to terms with my disease. This whole letter is an assignment from my therapist. Diabetes may have led to depression, but depression has forced me to confront the diabetes. Many people with chronic health conditions never really come to terms with them. At least I am doing the work. At least I am trying to be a better person and to love myself. I think that comes from treating the mental illness that I have.

In the past year, I’ve made a lot of progress in managing my disease. I’ve been reading a lot of books and experimenting with different eating styles. I think my control is getting better. At the same time, I feel like I’m getting better at accepting who I am and loving my own body and mind. My 30th year has been a very positive journey and it’s getting easier to cool the hot anger I’ve always carried. I am learning to embrace and celebrate all facets of myself — the dreamer, the diabetic, the depressive.