Dearest Diary,
It’s early November and after many years of pain and searching for an answer I FINALLY received THE diagnosis. Apparently I have Fibromyalgia. It wasn’t the best case scenario, but also isn’t the worst one either...Excited but also slightly upset, I took to my phone and immediately called my mom. You know, the person most people would think to go to first when something is wrong or exciting. Guess I should’ve thought twice.
“What’s up?”
“Well, I just finished at the specialist.”
“Mmmhmm...” barely paying attention.
“Am I calling at a bad time?”
“No, it’s just this is getting old. All you do is complain about your pain, your health, your this, your that. It’s exhausting. YOU’RE exhausting.”
“Sorry, I just wanted to tell you that I got a diagnosis,” I mumbled. “I have Fibromyalgia, just thought you’d want to know. Guess I was wrong. Sorry.”
“Oh good, now they can fix you. Let me know when you’re normal again. Until then, I just can’t with you.”
CLICK. I was devastated, but sadly not surprised. She has been avoiding talking to me for months now. Last time we spoke she complained for an hour and then told me she had no time to hear my “sob story” because it was annoying and old. Still emotional and slightly shaken I move onto the next. Instead of calling I decided to text my brother because I never know when he’s working. “Hey, I got my diagnosis, thought I’d let you know. It’s Fibromyalgia. TTYL.” My phone almost immediately buzzed after hitting send. “Yeah, I know. Mom told me you bugged her about it. Now that you know you can move on. So I don’t want to hear about it anymore.” I put the phone down. I don’t get it. I just wanted the people I care about to know what was going on. I listen to all of their issues constantly, but mine is too much? How? Unsure of how to feel or what to do I curl into bed, put my heating blanket on, turn on the T.V. and pass out until my boyfriend comes home from work. He comes in and gently wakes me up as he clearly wants to know the verdict. I’m almost afraid to tell him after the reception I got from my family. I have no choice though as he’s all I’ve got now. His initial reaction was shock and slight anger, immediately making me want to retreat and shut down. For several minutes we sat in silence not knowing what to do or say. Eventually he looked at me and said, “We’ll figure it out. We always do.” With a massive sigh of relief I began to sob and apologize for being too much to deal with, that my being sick is such a burden, and I’ll try not to bring it up anymore. He was so confused about my reaction. So I explained to him what had happened and showed him the texts- he was REALLY NOT happy at all. After some more discussion and comforting he suggested I reach out to a few of my friends and talk with them. And so, reluctantly and hesitantly I tried a few of the friends that I’d been close with throughout the course of my health ordeal. Two of them never even responded back and blocked me on social media. One posted a passive aggressive rant about “Having THAT friend who ALWAYS has something wrong with them and just wants attention for it.” And slowly but surely more people I thought I had as friends - friends that I had shared both good and bad with, friends I listen to and try to help if something is wrong with them, people whom I’d adored and appreciated - dropped off like flies at the end of the summer. I felt as though I’d been left to stand alone, and all while facing such an uncertain future. Just when I needed people the most, I felt the most alone. I had no idea what to do, where to turn, or even how to feel. My brain decided that numbly depressed was the best fit and so that’s where I sat for days. Hence a lack of diary entries. I had no clue what to write or how even write it. My moment of vindication quickly turned bitter-sweet. I FINALLY knew what was wrong for so long but then I lost everyone I thought was close to me and cared about me. So confused, alone, and coming up on Christmas I felt like my bet was to just disappear into “the nothing” for awhile. If I didn’t have my boyfriend, I’d have no one right now. Literally.
Ever wake up and realize everything you thought was a lie? No? oh, well that’s been my life for the past few weeks. Yes? Well, my heart and soul goes out to you because I truly understand how awful that really does feel. How empty it can leave you, especially this time of year. You know, when most people are surrounded by their loved ones. Well this year clearly I won’t be and processing that is so hard. No one wants to be alone for the Holiday’s; EVER! I woke up today wanting to shake this feeling and start shifting how I’ve been thinking about this situation. If I don’t start now I could wallow like this forever, and I don’t think I’d make it out alive if I did that. I thanked whatever higher power there might be for the little I do have in life that’s actually good: my boyfriend, dog, cat, and a diagnosis which gives us the ability to make a game plan, and potentially get some of my pain under control. Immediately I started to feel better and wanted to reach out to someone, but who? I did one of the scariest things I’ve ever done and posted on Facebook asking if anyone else I know has Fibro or knew anyone who did that I could maybe connect with. I had no idea how others were going to react or comment on my post. I almost didn’t want to know and so in that time while I waited, I put my phone down and distracted myself with other things (also I had a cinnamon tea). After going back some time later I was astonished at the amount of support and well wishes I ended up getting. It doesn’t mean I got no negativity or didn’t lose anyone else; because let me tell you, I did. However, I got added to some online support groups and found out a few of my not-so-close friends had it too. As much as nothing will replace who I lost during all of this I have some new form of hope and some new found support. I’ll miss everyone I lost dearly while I’m still mourning the loss of those relationships but I know right now maybe it’s what’s best for everyone. I have a few fiends that I can get together with over the Holiday’s and my boyfriend will of course be there. It’s not perfect but it is better than it was. If anyone else has lost family or friends over their illness I hope one day that they too find more support and know that they aren’t alone. Ever. Until next time, probably tomorrow.
Love Forever,
A