Chronic Lonliness

I’ve been a type I diabetic for 30 years, which is hard to believe. Adding an official colitis diagnosis a few years ago, then having my colon removed while also finding out I have sarcoidosis was a lot to take on and manage.

Beyond the medical appointments, treatments, and management of my diseases; I find loneliness.

What I experience is not resolved by extra time with people or an internet connection. I actually think being alone outdoors helps, which seems counter to what I need. At times I’m not sure if loneliness is even the correct phrase.

I’m fortunate to have a partner and amazing kids that provide unequivocal support. They do not judge my moods or expect me to be perfect. Showing up and being present as much as possible is my goal.

I’ve always felt a good deal of guilt; my conditions are too much, they deserve better, and life without a chronically ill person would be easier for everyone.

Is the guilt and loneliness entangled?

I’m thankful for the life we have built. Our house is chaotic, loud, and dirty. Just the way we dreamed it up years ago. I may not always be the husband or father I’d like to be, but I keep showing up and remain present.

Being seen and being heard, although uncomfortable for some is something I long for as a chronically ill person. I don’t need suggestions of what to eat or theories as to why I’m, “not fixed”.

My hope is to be seen and heard.