Opinion: Being diagnosed with type 1 diabetes as an adult

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.

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.

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7 Comments

  1. I’m right there with you on most of those points. Even though it’s the “same” disease the experience of being diagnosed with it in adulthood is vastly different. I know that if I’d had my immune system go haywire in childhood, there’s a distinct chance that I would not be here.

    You have nothing to feel guilty about! But I know it’s hard not to. Sometimes the Type A personality helps us stay on top of things and other times it makes us beat ourselves up.

    Reply

    1. Hi Rachel. It’s been too long! I was hoping you’d read because I really wanted to hear your opinion on things. Yes, the type A thoughts can be hard to battle. So glad to re-connect with you again.

      Reply

      1. I know that those of us dx’d as adults are in a minority and I do feel that our stories get swept to the side because we don’t elicit the desired response that you get when you talk about diagnosis in early childhood. You probably read my rant about that recnetly (http://www.probablyrachel.com/type-1-diabetes-not-just-for-kids/)

        In fact, I almost added in my first comment that childhood dx’d folks can’t understand adult dx issues, like romance & sex as well as parental relationship changes. When I made the comment that my mom is not a “D-mom” and couldn’t take care of my diabetes if she really wanted to, two long-time, childhood dx’d DOC “leaders” basically jumped down my throat about it. Every adult dx’d person agreed with me.

        I could fill up your comment section with my opinions on adult dx! I’m just glad my doctor stumbled on my dx with a “routine” pregnancy test so that I not only lived but got to meet lovely people like you!

  2. Hey Girl! I am with you on EVERY THING. Even on the workaholic point. Listen, I was diagnosed with it at age 25, (I am heading into my 14th year living with D in November.) Getting diagnosed turned my life completely upside down. One day you are fine the next you are like WTF. Sometimes I wished I had gotten it younger so I didn’t know any better and my parents could have taken care of it instead of me, then sometimes I think to myself no way, I could be living knock on wood with complications at age 12. Double edged sword.

    It sucks but, you know what, we can live long happy healthy lives just like everyone else.

    You aren’t alone IRL or Online!

    Hang in there girl!

    Gina

    Reply

    1. Hi Gina,

      Thank you for commenting. This blog has been so helpful in sharing my thoughts. Often it feels like I am alone in a little corner. I definitely can sympathize with what you said. One day is fine, the next everything seems to be going backwards. I want to advocate for more adult resources when it comes to t1d. Thank you again for your positive words. It means a lot!

      t1d’s unite 🙂

      Reply

  3. Hey, glad to see you here again! I will be honest – as someone who was diagnosed with t1d as a child (age 7), I have always said that if I were going to get it anyway, I’m glad it happened when I was young because I cannot imagine how hard it would be to change routine and build these new habits as an adult when I’d gotten used to doing my own thing. Remember that those of us dx’ed as kids had parents doing most of it for us at the beginning! BUT, that being said… I’ve had this for decades longer than those diagnosed as adults, and I’m sure that puts me at far more and earlier risk for complications. I think the best we can do is admit we don’t know what it’s like to be in the other person’s shoes and try to understand what life is like for “the other kind of Type 1s”!

    Reply

    1. So nice to connect again Jennifer 🙂 I completely agree with you. We will never know what it’s like to be in each other’s shoes but we are bonded. We should be here to support each other, sympathize and help each other live well with whatever type of diabetes at whatever point of diagnosis. I’ve missed you!

      Reply

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