Notes From Fighters Part Two!

Hey everyone! Here is Part 2!
 I asked everyone a question on one of my support group pages on Facebook.  I wanted to know if they could tell the world anything about their life with an invisible illness, what would it be.  I wanted to share some of the answers with you because most of them are how I feel too.  I have permission to share this information with you. :)

"I thought constant pain was a normal part of everyone's life. I thought I was lazy when I didn't have energy to do things because everyone feels this way, right? I thought I was embarrassingly clumsy and resentful of myself because I couldn't be more graceful. In short, I thought I was a bad person who wasn't "enough" because I thought everyone was like me. That I had some flaw in my nature because I didn't deal with it all as well as I perceived the rest of the world was." -Kamie E.

"Just because you aren't educated enough to understand what I'm talking about doesn't make it fake. I don't need your friggin' validation. The first time a doctor took me seriously, that was all the validation I needed to understand this wasn't just some flaw in my personality. It's people like you that made me feel that way in the first place." -Claudine M.

"I am sick and tired of being sick and tired. I would give anything to be able to hustle like I used to. I love to work. I was always considered a workaholic. I was a work hard / play hard kinda chick. I can't even hold a part time job now. I cannot even begin to describe how demeaning that is." -Becky C.

"That I am in constant pain, and just because I look normal, and I am up and moving around, does NOT suddenly mean that I can take u shopping, hang out all day, watch your kids, or go for a walk!" -Kris M.

"Just because I am smiling and up, pushing through the pain to have a normal life, doesn't mean I am healthy and feeling fine. You can't see inside my body to see all the aneurysms, the kidney failure, the inflammation in my stomach and intestines, the degeneration of my spine and joints, the severe weakness and fatigue....but I keep going everyday for my children and my family. I live life while I still can, but it doesn't mean I'm fine like everyone thinks." -Susan G.

"Just because I'm not talking about it doesn't mean I'm fine now- and if I am talking about it I am not whining. There are days I can't drive and days I shouldn't but do (and pray). I hurt. I can't think straight. My memory sucks. I can't commit to doing things because there's no way of knowing how I'll feel that day." -Lauri Z.

"I've pushed myself really hard the last few years including taking care of sick and dying parents, working three jobs at one time and one of them being starting a small business with my sister. I am not ok! Just bc I look fine doesn't mean I feel fine. I am NOT lazy I am tired of being in pain and being tired. It takes everything I have to get out of bed in the morning, pop everything back into place and try not to pass out from an elevated heart rate! I am NOT TOO young to have these problems!! And I am NOT too young to need these meds. If I didn't need them, I sure as hell wouldn't take them! I am exhausted even on my best days. Asking me to push past my limits or playing a guilt trip on me about whatever is important to you makes my life harder. I want to be there for everybody and all of their things but I just can't and it breaks my heart! Please, consider how I might feel before asking me to do countless things or making me feel bad for not being able to do them. And to my husband and family I have lost so many things in the last three years including but def not limited to.... My mom, my body and in that case also my career, my youthful appearance, my decision to possibly have kids, my mind, my time with my husband, my time with my friends and my ability to be carefree and so much more." -Mandy M.

"Just because I can do something, doesn't mean I should. I can be tough when I need to. But the long term damage that I'm doing to my body when I overdo is not fixable. Some day I might not be able to be tough when I need to be and that's scary." -Ally S.

"Don't abandon us because our illness makes you uncomfortable! We are still the same person that you know and love, but with some limitations now that we don't lke either.We need you; we still need people around and people to hang out with, and people to go places with. Please don't isolate us; this illness is isolating as it is. Don't stop including us, inviting us, or assuming we wouldn't want to or can't do something. Let us make that call. We don't want to be alone all the time." -Janie M.


"That when I wake up and my painlevel is only 5 means I have a great day because most of the time I wake up with 8 and that's my normal.  
Just because there is a smile on my face doesn't mean there is no pain. 
I got up this morning, took my meds, put clothes on, ate and took my meds, then I went to get the mail. Yes this all took me 4hours. 
And yes I am young but that doesn't mean I'm healthy.. I have better days but even then I am in constant pain.No there is nothing you can do and no way you can even begin to understand so please don't try and minimize my struggle.
It's sometimes a miracle I get out of bed." -Maarit B.

Part 3 coming soon!