A photo is so full of falseness. You cannot see my heart racing at 115 while resting. You cannot feel the pangs of shooting pain on the top of my foot. Or the burning feelings my hand has right now. My migraine has been on and off, but you can’t see. I can sit and smile at a camera up until I don’t notice it pointing my way.

I am not that person who posts for you to feel sorry for me. I post so that others understand, I know what it feels like to not look sick. And I know what it’s like to grin and bear it in front of loved ones. I know what it’s like to try to desperately appear normal when you are just battling the nausea that you’ve had for the past hour.

I know what it’s like to be tossing and turning, wondering when will you sleep.

I know what it’s like to be curled up in a ball on the floor, praying God takes away my suffering.

I know what it’s like to cling to faith, and have my faith tested, and to be angry sometimes because I can’t understand the big picture of such a long journey of suffering.

I know what it’s like going to doctors, and having your labs looked at, and words like “I wish I had labs as good as you.” And told I’m healthy and sent away because they are too busy with people with the clear textbook issues to deal with me.

I know what it’s like to be told to just meditate, listen to music and do yoga.

I know what it’s like to be treated like a psych patient.

And yet I don’t know exactly what it is like for you personally. And that’s why I share my story. So that others aren’t afraid to share theirs. I’ve only begun my journey and I’m sure it’s gonna be a long one. But I do know what it’s like to have such an amazing support group, and not only have my own friends rose above and beyond for me, but so has the spoonie community.

No matter how difficult the road is. Find that one thing that doesn’t dull your shine, and cling to it. Cause you’ll need it when you’re curled up at 5am wishing you weren’t alive. You’ll be wishing so much when it’s your 30th doctor visit for the year. You’ll be thinking irrational thoughts as you stare at however many pills you take to stay semi functional. You’ll sit there, and you’ll think…What’s the point? Why do we keep fighting only to be not taken seriously? Why fight only for tomorrow to be the same or worse?

And that’s when you’ll need whatever it is that you need to keep on moving forward.

Trust me, I know the feelings of hopelessness, I know the days where it feels like it will never change.

Never give up fighting. You are beautiful souls struggling to live with an ugly disease. It will try and strip you of everything. And some days, it may win some battles. Just don’t let it win the war.