Not long ago in June, this post appeared on the site, My Diabetes Secret.
“Father’s Day was tough, because we’ve been trying for a long time, and nothing. I’m not a father even though I want to be. We have gone through IUI and nothing. We can’t afford more. And it appears that the motility-impacting culprit is diabetes, and the wonders of nerve damage. It doesn’t help when everyone else seems to be having kids, and my parents won’t shut up about it – especially in front of my wife, and it just breaks our hearts even more. I’ve accomplished many of my dreams in life, but this one… may have been stolen from me. And I feel mad that it’s a topic more men aren’t able or willing to talk about publicly, so we feel very alone in dealing with this. Yet, I’m not willing to share this publicly, and so I feel like a hypocrite.”
I saw that this came up at the recent Diabetes Advocacy MasterLab held the week of the Children With Diabetes “Friends For Life” conference held each year in Orlando.
That’s me. I wrote that.
No doubt, you can see that things aren’t OK as it relates to this part of my life. I’ve been married to a great woman for many years, and over the past few we have been trying to start our family.
A year or so ago, a reproductive endocrinologist told us that I was likely experiencing retrograde ejaculation thanks to long-term diabetes — you know, the wonders of nerve damage down there. Basically, this just means the pipes are somewhat crossed and instead of my swimmers flowing out the way they’re supposed to, the nerve damage has tightened up one end and so they’re swimming the other way, back into the bladder.
The irony here is amazing, since swimming was a part of my world when I was younger.
Seems God has a sense of humor, at my expense.
So, we’ve tried and spent some money on fertility treatment to no avail. I feel so guilty, so ashamed and embarrassed and at fault, like I’m stealing away my wife’s deepest desire right now to have kids. And it’s also one of mine… but yet, it feels as though diabetes has stolen one of my dreams.
It’s really tough when all you see posted online from friends and family are the “happy news” tales of people getting pregnant, or having new kids. Or posting pictures of their kids’ smiling faces. I really do love seeing these, and am happy… it’s just bittersweet at the same time, with all that we’re going through with not being able to have kids so far.
And from the diabetes side of the fence, as a guy with type 1 who wants to be a dad but appears to not be able to, that’s even more challenging. Especially when all the “infertility and diabetes” searches and info you come across online is about women with diabetes. And all the challenges they may face. The men are just a footnote, it seems.
None of this stuff is easy to talk about, and no one is sharing their stories online. Even in forums, it’s tough to find any specific men with diabetes sharing these stories.
One that truly stands out was posted on a blog in 2014, when “Mr. Diabetes Dad” Tom Karlya shared the story of Benno Schmidt (a news guy who was the featured face on dLife TV for awhile). While it’s not exactly the same issue 100%, and I’m not looking at a penile implant (at this point in my life, at least), the similarities are there with our stories.
When I first listened to Benno’s story, tears came to my eyes. And it happened to be in the middle of the night, and I sobbed. My heart so needed to cry about this, and so there I was sitting in my living room with headphones in and tears running down my face.
Later, once I collected myself, I thought about how brave Benno is for sharing such an issue that was so very personal. I can’t commend him enough for standing up and putting himself out there, with so much courage.
Here is Benno’s story: http://www.edcure.org/real-patient-stories/benno/
That courage of “putting my name to this story” is something I just can’t find at the moment… even though I so want to find others to share these stories with. To just not feel so alone. I’ve shared some of this a couple times recently at groups, and both times have been emotional releases and it felt so good to share this. One of them did have some fellow guys with T1 for many years, and it was a truly safe place to share and find that support.
And while all of that’s great, and I do hope more of that can materialize, it doesn’t take away the hurt and pain and stress this whole experience brings for me.
I don’t know what the future holds, and we’re giving it a break on the fertility treatments for now. Mostly, because it’s just emotionally exhausting and stressful, but also because it costs so darn much. And with not-positive results so far, we don’t want to keep throwing money down the drain if it’s not going to lead to anything.
We’ll evaluate our options and try naturally, and that just means I’ll have to cope with these mental demons inside my head that scream “FAILURE,” “INADEQUATE” and “DOOM” and try to see the light.
All I know is to basically just practice what Finding Nemo preaches: Just Keep Swimming (which again, strikes an ironic note).
But hey, Nemo and his Dad did find each other in the end, so… there’s that.