I have been quietly observing some things in my autoimmune life and I think I’m ready to talk about it. I’ve been watching how different people treat me and interact with me for quite awhile now and it’s become quite interesting to me. I hope I don’t offend anyone by putting this out there, but my silence is no longer beneficial to anybody in this situation.
Everybody that knows and loves me was personally affected by my diagnosis. I was, after all, only given ten years to live due to an autoimmune liver disease, PBC. Some people were only mildly affected by it – friends, coworkers and acquaintances, etc. They had questions but not tears or major concerns. To them it is what it is, and I’m okay with that. Now, when it comes to my husband, as you can imagine, it hurts him to his core. This diagnosis has probably felt like the end of the world to him at times and he has no qualms about letting me see his true emotions about it. I respect him for this. Hell, I appreciate him for this. He’s real. He’s sincere. He’s hurt and scared to death, but he doesn’t push me away because of it. If anything, he has pulled me in closer than he ever let me be before. My diagnosis added something to my marriage… a closeness… a bond unlike anything I’ve ever felt. I know beyond a shadow of a doubt that this man loves me and will continue to love me like this until I take my last breath.
Outside of my immediate family, not many others pay attention to my health or ever want to talk about it. When I was diagnosed I was living with my sister. I had just come from the appointment and was quite upset to learn that I have a liver disease. I’ve never been a drinker so I was definitely in shock to say the least. When my sister asked me how that appointment went and I told her I have a liver disease, her words were, “Ha! Ha! You’re gonna turn yellow!” I’m not even kidding, y’all. Those words cut me like a knife and I’ve never really gotten over that. My sister has changed a lot since that statement, and I would never hold it against her. She has since found a spiritual path that better suits her and she is now a whole different person from the mean spirited woman who laughed at my death sentence. I have forgiven her even if I have not forgotten. And I love her dearly to this day.
Now when it comes to my parents, that a whole other story! I’ve told my father several times about my diagnoses over the years and he acts like he’s hearing it for the first time, every time. He does not suffer from any kind of mental deficiencies so that’s not it. He was a big drinker for a long time, but recently quit drinking. I wonder if he would remember if I told him again now that he’s not a drinker? My mother tries her best to be involved in my life, but she falls short of the mark. She doesn’t really understand what all of this means and she lives so far away that she doesn’t see my everyday struggles. With her being so far away, it’s easy to pretend that everything’s fine and that I’m okay, but really I’m not. Most of the time that I want to talk about my health, we quickly get off the phone. Maybe it’s a coincidence and I’m just overly sensitive to it, but it’s been a problem for me for a very long time now. Or maybe she’s scared to acknowledge that I might go before her… But sometimes a girl just needs her Mom.
I had a conversation with my Bestie yesterday and it really got me to thinking. I was ranting and raving about how people are pushing me away because I’m sick and dying and how it really makes me feel. She told me how she feels about me dying and that yes, she is heart broken over it, but she would never push me away or brush me off because of it. In that moment, I realized that in the three years since diagnosis, this woman… by best friend… my ride or die… my soul sister has NEVER ONCE told me how SHE feels about me dying. She’s never rushed me off the phone or changed the subject when we’re talking about it… Until yesterday I had no clue how exactly she felt or if it affected her at all. It was the most soul-crushing conversation that I have ever had with her, but I respect her for it. I respect anybody who is willing and able to share their feelings in an honest and sincere way with me. Most people can’t do that these days so that they block it out. They shut down. They refuse to talk about it. They don’t like to think about it. It’s like they feel that pretending it doesn’t exist will make it go away. I’m here to tell you that is absolutely NOT how this works. You will lose someone you love dearly and be left with nothing but regrets for all of the things that you never said. So grow some balls and tell people that mean something to you that you love them.