Your Support System Is Everything

Having a strong support system is vital to surviving mental and physical health issues. For most of my life, my family has been my rock, my everything, the ground on which I stood.

But something happened that shook that foundation. Something that was only officially reconciled two days ago--and I really wish we'd talked about it much sooner. That just goes to show, however, that everything changes. Talking to one another is so important. Holding on to grudges never solves anything, it only exacerbates your hurt.

In order to tell this complicated story, I'll have to skip forward a bit from where I left off. I'll fill in the blanks about my #endometriosis getting much worse, and how my favorite job had become a nightmare. I think it's really important to include my struggles with endometriosis, because so many women struggle with this disease and getting diagnosed. It took me four different doctors, going to three different pain specialists, and nearly dying from a very preventable issue. I would love to hear my fellow #endowarrior 's stories about their troubles being diagnosed and treated--I'm sure they're similar to mine.

It was around age 19 or so that I really started to have problems with pain and ovarian cysts. I had had horrible cramps since my period started at 14, but it had become unbearable to the point where I was throwing up, curled in the fetal position, breaking out in cold sweats, and even going to the ER for pain management. My doctor was referring me to pain management specialists for trigger point injections in my abdomen, which of course did nothing (this wasn't a muscular issue). She gave me pain medicine and told me to exercise more, and I'd feel better.

By this time I was working at a local hospital as a phlebotomist, and studying medical laboratory technology. This job was very physically demanding, and I loved it. I would go to the gym down the street before, go to work, and go to the gym on the way home. I was in the best shape of my life, trying really hard to keep up with my schooling and feel better.

After a couple years I switched doctors, because I just wasn't getting any better. My new doctor sent me to the Mayo Clinic, and they diagnosed me with #Fibromyalgia (a disease I honestly didn't think was real, like many doctors and nurses I worked with), and possible #endometriosis , but they couldn't be sure without a #laparoscopy , which they didn't feel the need to do there and then. They suggested my OBGYN should perform one, which I passed along, but she didn't feel it was necessary, so on to doctor number three.

In the mean time, I was getting a lot sicker. I couldn't eat anything, I was having a lot of pain, and my eyes and skin had taken on a grey pallor. I'd had several hospitalizations and CT scans, but they couldn't find anything wrong besides dehydration, a fever, and elevated white count. They actually started putting me in rooms with a camera to make sure I was eating because I'd become skeletal, I'd lost so much weight.

Eventually my doctor decided it was time to do a laparoscopy. What should have taken 45 minutes ended up taking about three hours. My mom was in the waiting room, and when the doctor came in, she said his face was white and he looked like he'd seen a ghost. She jumped on him and asked what was going on. He told her that I did indeed have endometriosis, and it had completely covered my appendix and stuck it to my abdominal wall. My appendix had *ruptured* some time ago, which explained some of my severe pain, and definitely explained the fevers and high white count. He said it was spongey, which apparently the appendix is not usually. He told her I had maybe three months left with it like that before it broke through the adhesions and poisoned me.

So that's a scary thought. My mom cried a lot after that. I definitely didn't think I was about to die, and that thought changes you, at least for a while. I was already pretty responsible, but I stopped drinking and partying with my friends (which lost me a lot of friends, but there ya go), and became more serious about work and school. Sometimes no matter how well-intentioned you are and how hard you try, things don't work out, but that's a story for later. Now for the rest of this support system revelation:

So, not long after I recovered from this surgery, I was over at my sister's house hanging out with her and her now ex-husband. They were both drinking, three sheets to the wind, to be exact. My sister was talking about how glad she was that I wasn't dead, and out of nowhere she said "Dad and I were convinced you were faking it til you almost died, then we were like 'oh, shit, she's not lying'".

I saw red. I set my drink down, said "what the fuck?" and left. I don't remember if she called after me or if her ex did--I was too angry. I told my mom about it the next day, in tears, and said I wasn't going to talk to her or dad for a while. And I didn't. My sister told me and my mom she didn't want to know anything about my "medical stuff" anymore because it made her too upset a while after that, but I wasn't telling her anyway, so that was fine with me.

Anyway, there was a time a couple years after that when I was living with my parents and my job had become a very #hostileworkenvironment , and I just couldn't handle the stress, and the pain, and I was hysterically crying in my room--like the kind of crying that shakes your entire soul, where you can't breathe, and your gasping sobs are basically silent after a while because you just have nothing left.

I could just barely hear my mom and dad talking upstairs. It was more like my mom yelling at my dad--something about "yes, it really is that bad! Go down and talk to your daughter!"

I tried to stop and compose myself when I heard him come down the stairs, but I just couldn't. He sat down on my bed and just rubbed my back. He didn't say anything. He didn't have to. Just having him there and having him finally see what I was going through helped more than he could ever know. Our relationship was still strained, but it was a little bit better after that.

I've talked about the relationships with my dad and my sister in therapy. I've talked about them with my mom. But I never thought to talk about them with the two people that I needed to talk to. In our family, we don't talk about things that really bother us. We bury it deep and just let it go. But this was a life-changing moment for me. In a time in my life where everyone was telling me I was crazy, and everything was all in my head, or telling me I was just straight up a liar, and needed to get over it--my own family, who I thought I could always count on for love and support, was basically laughing at me behind my back. My dad, my favorite person since the day I was born, didn't trust me. Was making fun of me. Was mocking my pain.

Except, as it turns out, maybe they weren't.

When I decided to start this blog and podcast project, I turned to my sister for advice because it's basically what she does for a living. She was super supportive, and told me if I need any help to let her know. She helped me with podcast platforms, picking a name, etc...

A couple days ago, I told her I was planning on talking about the time when she and Dad didn't believe I was sick, and how much that hurt me, but I'd include a footnote that we were all ok now. I asked her if she was OK with that, and what she told me completely threw me for a loop. She said she didn't remember saying that at all. She said she didn't remember not believing I was sick, but she remembered not knowing what was wrong with me and not wanting to believe it.

I am not going to lie, when she told me this, it made me so angry. I told her that when she said it she was drunk. That she actually told me she and dad thought I was lying. That I'd carried it with me for years and it had really hurt me. She said some stuff about not being able to imagine meaning it the way it came out, and how she's sorry for making me feel badly, but that she always believed something was wrong, but she didn't want to believe it.

We made up with platitudes of "it was a long time ago, so it's fine, I love you", etc...but then she brought it up again saying "telling me after it happened would have been better". How could I have told her if I thought she was cognizant of what she was saying? I just found out in that moment that she didn't remember. She told me again she loved me and always believed me, and some stuff about how she didn't think Dad felt that way either.

I came away from that conversation still feeling angry. I know my sister loves me, and I love her too, but I felt a little cheated. I called my mom to talk about it. I yelled for a little bit, not at my mom, just about the situation. To me, it felt like my sister was just saying "sorry bout it, but I don't remember so I didn't mean it". Well that's all well and good for you, and the platitudes you gave me like "intention doesn't always land" and "your feelings are valid" just sound empty. (this is how I felt directly after.)

My mom had friends who had problems with alcohol and had had similar experiences with them not being able to recall conversations or events, even when they were sober. That’s the nature of the disease.

We talked about how my dad and sister had acted and/or reacted during that time. She told me they were terrified. They wouldn't talk to her about me at all. She said it didn't seem like they were stubbornly not talking about it because they didn't believe me, it was more that they had convinced themselves it wasn't true so they didn't have to deal with it. Like they couldn't handle the fact that I was so sick with *something* that I might actually die. They weren't trying to be mean about it, it was just denial.

That made a lot more sense to me. All the anger went out of me by the end of that call. All I wanted to do was hug my dad and my sister. Unfortunately they are thirty miles away, but hopefully I will see them soon. I can't take back all the resentment and anger I've held onto for these last ten or so years. I didn't cut them out of my life, but it was always in the back of my mind when I saw them or talked to them--you don't believe me...

I guess I have a lot to talk about in therapy on Wednesday...