When I first started dating my husband, I did not share much about my Systemic Juvenile Arthritis. There are a few reasons for that… Growing up in an abusive household, talking about my illness would only start a one-upping contest or, the complete opposite, smothering. You couldn’t ever tell which reaction you’d get, either. Another big part of it all was that I didn’t have the language and medical knowledge to really explain what I was going through, thanks to not receiving medical care.
Disclosing that I had an illness wasn’t really an issue in my mind because he would either be amazing and stay or freak out and leave. Introducing someone who hasn’t had a run-in with many chronic illnesses to types of autoimmune-based arthritis is tricky, though, and I didn’t want to scare him away.
Fortunately, since I didn’t know that much about my illness, he and I were able to learn at virtually the same time. I was able to use the first blog I ran to share that information with him in a way that I could handle.
Talking about my own emotion-related issues has never been my favorite and, at the time, I was really bad at it. It start to frustrate him after a while. I didn’t want to be a burden, and that want was so strong that I was putting up walls. It made things really difficult for a while.
One day we were driving after eating lunch and we were listening to 10,000 Maniacs. T put on a song and told me that it was how he thinks about me often:
Why let your shoulders bend underneath this burden when my back is sturdy and strong?
Speak to me. Let me have a look inside these eyes while I’m learning.
Let me. Please don’t hide them just because of tears.
Let me send you off to sleep with a there, there, now stop your turnin’ and tossin’.
Let me. Let me know where the hurt is and how to heal.
Spare, spare me. Don’t spare me anything.
Trouble me, trouble me. Disturb me with all your cares and you worries.
Speak to me, and let our words build a shelter from the storm.
Let me. And lastly, let me know what I can mend.
There’s more, honestly, than my sweet friend, you can see.
Trust is what I’m offering if you trouble me.
I totally cried. I hated it at the time because I was really against showing my emotions like that. It worked, though. This really changed how I shared information about my illness with him. I still don’t share everything, especially since I carry additional baggage due to my childhood.
Even with all of that, though, my husband shares the load. He holds me while I cry, rubs my knees and shoulders, and does whatever is within his power to help me feel better. This usually ends up with me laughing until I cry which is a type of crying that I can handle.
Talking to my husband about my illnesses and researching together what is or might be happening has helped us become a stronger couple. I share more about what I’m going through and, because of that, we work together better. It has helped him to open up about his depression with me, too. We have gone from simply being boyfriend and girlfriend to not only husband and wife but partners in our health.
And that has made all the difference.
A young adult thriving while living with chronic illness, you can read about Kirsten’s illness journey at Not Standing Still’s Disease. Make sure to check out Chronic Sex, all about Quality of Life issues with chronic illnesses and join her for #chronicsex chats Thursday nights at 7 pm Eastern on Twitter.