My diagnosis smoothie is a not-so-healthy mix of guilt, frustration and…wait for it..an additional hit of more guilt.
At the last JDRF adult support group meeting I attended we got into the topic of what it’s like to be diagnosed as an adult. I was pointed out by one of the organization’s reps as someone who was diagnosed much later in life (29).
I was happy to share my thoughts on the issue, but more importantly, incredibly thrilled that someone else in the room was able to chime in with me in feeling the same.
JDRF in the exhibit hall.
Guilt: I haven’t lived with type 1 diabetes for very long. I’ve passed my two year mark but that’s it. The majority of t1d’s were diagnosed so much earlier in life. What right do I have to complain when I lived such a huge portion of my life free from the worries this disease brings?
I’m hyper aware of this fact and so when I’m around other type 1’s or even people who are curious about what it’s like to live with t1d, I watch myself carefully. I don’t ever want others to feel like I’m not acknowledging their long struggle with this autoimmune disease.
I’ve been through my fair share of struggle, heartache and pain. This did not happen to me at a time when I was still growing. Why can’t I get this down? Why do I feel so incredibly helpless at times? I have often felt guilty for feeling this way, not for myself, but for the loved ones around me who feel the ripples of t1d.
Frustration: Trying to explain t1d and that I was diagnosed at 29 can be a pain. As an adult, coupled with the misconceptions about the disease, I feel (FEEL, not that it’s in any way reality) like there is a judgement put on me when I proclaim I am diabetic.
“She must not have taken care of herself.”
For me- I equate the above statement with being lazy about my health. I know that’s not the case, but for some reason I cringe to even think that the word ‘lazy’ can be associated with me. I’m a self-confessed workaholic (but I’m getting better). Prior to being diagnosed I was the girl who stayed late at the office and checked her e-mails in the middle of the night. It has been incredibly difficult to own my disease because of my Type A, work-work-work mentality I have carried with me for many years.
A little more guilt: I know there are people in this world praying for food, water, the end to violence. I live in a place where I have access to insulin, doctors and amazing organizations like Connected in Motion. In the grand scheme of things, I know I have it good. I am free to live how I want, pursue my dreams and have the hope of a long life ahead of me. There’s a tinge of guilt for me when t1d gets me down and I complain or make note of my annoyance.
I left that meeting feeling a lot better about being diagnosed much later in life. I always knew it, but this time I felt it- I was not alone in my thoughts and emotions.
Irregardless of what struggle you face (a disease, a troubled relationship, a career dilemma) it always feels good to know you don’t walk the path solo. Others have prevailed and so will you.