A cold, harsh reality of having a chronic, invisible illness is that people forget.
They forget that you feel awful every single day, no matter how you look on the outside. That it may ebb and flow, but that the pain and fatigue never goes away.
They forget that you're trying to not be a complainer, but that you truly have horrendous pain and fatigue, and are uncomfortable each and every day... whether you say anything about it or not.
They forget that you don't want to spend every waking, speaking moment of the day talking about your illness, but that it's still okay to ask how you're feeling and see if there's any way they can encourage and support you.
They forget that asking you "are you okay? you don't look so good" is just about the worst thing you could say. Especially to one who is also a hypochondriac with anxiety issues. I literally spent the rest of the day contemplating how terrible I looked and trying to hide my anxiety over it.
I also have the people who tell me encouraging compliments each week, who remind me that I look good and am doing better than I was a couple years ago. Which is truly remarkable and very kind.
Despite that the roller coaster of emotions that goes along with all of that is exhausting, I know it's just part of my life now. It's hard, but it's my new reality.
And don't get me wrong, I would never expect everyone to remember what my life is like now every second of the day. I don't want pity. I just wish people would remember sometimes. It's just hard to face the reality that I may look normal, but I don't ever feel normal.
I just read a post I learned about from the Fibro 360 Community on Facebook called The Invisibility of ME/CFS & Fibromyalgia which was a really good and helpful read. It's encouraging for those with chronic illnesses, and gives reminders to those without it of how to better understand what we go through. I highly recommend reading it!
Now like I said, I don't expect pity or sympathy... I just want to help others understand what life is like for us. It can often be very lonely, very depressing, very trying, and very frustrating... but we may not tell anyone in our lives what we're feeling every moment because we don't want to be gloomy and depressing all the time. We want to still live our lives. We want to still seek the best things life has to offer. I want to still honor God in every way I can through this and the body He has given to me.
I'm just sharing the dark, lonely road, and the harsh reality life with a chronic, invisible illness can bring. But I'm thankful for the love of Christ, and the goodness, grace, and mercy of God which is new each day. And I'm leaning fully on him to bring me through all the agonizing, stressful, draining, exhausting, confusing, depressing days. He carries me. That's all I need.