Lone Wolf

What’s the real truth about what it’s like to be chronically ill? No sugar coating anything here.
It’s extremely lonely and isolating.
Let me elaborate. Let’s say I feel great. I’m invited to an event later on in the week. On the Facebook group post, I click that I’m going. Days pass. The day of the event arrives and I’m just too tired to cook a dish, make a ugly sweater, wrap a present and put on a happy face like everything is dandy. In fact, I’m in agony and can barely even get out of bed. I end up alone in my room. My day consists of resting, eating, sleeping, going to the bathroom, taking a bath, and resting more. I’m isolated from the rest of the healthy world.
Let’s say for kicks that I felt fine to do everything I needed to prep, then go to the event. What do I talk about? Do I talk about the frustration of being put on a medication just to get off another medication? Do I talk about the utter exhaustion I feel or that I feel like a monster truck ran over me 5 times? Then when I do say something, I get talked over and ignored. If I have a glass of wine at said party, someone usually asks, “are you even supposed to be drinking, you know, with the medication you are on?” and inside I am pissed but on the outside I have to remain calm and I reply that it has been cleared by my doctor. Is it any of your business? Let me answer that for you: NO! Then for some reason someone always “jokes” and takes jabs at me. Then I end up welling up with tears in my eyes because I literally can’t handle anything else right now. I can’t handle any more negativity, ill will, or pain. I manage to keep my composure and slip to the bathroom for a few deep breaths, but I’m totally falling apart. Someone actually asks how I’m doing. I respond and they listen for the first minute until they start listening and participating in another conversation and don’t even remember asking me the question in the first place. It makes me feel like they don’t care. 
Honestly, I haven’t been to many social occasions lately. I’m talking months. You want to know the real reason why? I’m sick of playing this song and dance. I’m sick of others not expressing they genuinely care. I’m tired of not getting the support I need. I’ve found that my friends simply don’t get it and I don’t think they ever will. I’m not sorry that my chronic illnesses make you uncomfortable. One day you will experience a constant ache and maybe you will think of me. I hope you will wince at the support, love and encouragement you didn’t give me. I hope you think about all the times you judged me or make me feel less than. Less then a women. Less then a human. Less than all that I am. 
To make matters worse, I don’t always get invited to everything. Maybe everyone assumes I’m sick. This really makes me extremely sad. It’s difficult seeing photos of all your friends at an event and all I can think is that I was forgotten. Not even a text. Not a message. No phone call. Nothing. I try to put it out of my mind, but I can’t help but look at all those photos piling up with one thing in common: I’m not in them. 
Enough is enough. No more pretending. If I’m not feeling well, I’m going to tell you so. Too bad. I have no time for making myself fit into a group that I seem more like the odd puzzle piece out. I’m like the equivalent of the manufacturers defect puzzle piece. 
I want to have friends that I can have an honest conversation with. I want friends who simply listen and not judge me. I want to have friends I can relate to and that try to relate to me. I want to have friends who share similar experiences as I do. I want friends who tackle the same stressors like: how many specialists can one really have, balancing exercise and chronic pain, and how to be productive when you simply don’t feel your best. I want friends who support my advocacy work and even read up on my conditions. 
For now, I will enjoy being lonely snuggled in my bed with a glass of wine thank you very much.  


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