The aches, the pains, the all-over feeling of restlessness, the low fever, losing hair on your head, while gaining it everywhere else, especially where it shouldn’t be. The feeling that something is not right, but you can’t properly explain it, so you suffer in silence, your skin crawling, the swelling head, the pain getting so unbearable that you can’t help but shed a few tears, just to relieve the pressure. The endless frustration of trying to articulate how you feel and what you’re going through, as you watch your body and mood change every day in front of your eyes, but nobody else seems to notice. Why can’t they see it??  Why can’t they understand that when you say you’re “tired” it doesn’t mean you’re just a “little sleepy,” or “being lazy.” It’s more like a fatigue that’s so soul-deep, you can hardly walk a block without having to sit down, for fear of fainting. Your eyes start to see dark spots, and you go dizzy and nauseous at any given moment.

 “What’s wrong with you?” they ask. “Why are you so unhappy?” “You don’t look sick.”

 Until one day, when the other shoe drops and all of those symptoms you’ve been trying to explain suddenly start becoming more visible, and the doctors FINALLY start to see what you’ve been trying to tell them all along, and so do your loved ones, except…they still have no clue how to treat this dis-ease that’s taken over your body, mind and spirit, like a raging succubus. They can only throw a litany of over the counter medicines at the symptoms, and maybe one or two prescription drugs with REALLY terrifying side effects (like cancer, or death) at the problem, with still NO real clue what is wrong with you, and no cure.

 And then it gets worse, and eventually you might just end up in the hospital, or have another equally frightening health scare. Then they give you stronger drugs and recommend a change of diet, and exercise. Once you’ve cheated death you feel such a temporary high, you feel invincible, so of course you are temporarily in remission.

 Then it all starts again. The endless cycle of ease, and then a gradually growing sense of dis-ease. Several months suddenly turn into fifteen years, and you still haven’t found a way to beat this demon that’s within you. You read about the fairy stories of “miraculous recovery,” after a diet of quinoa and kelp, and a radical new supplement, that’s the holy grail for former sufferers of the same dis-ease you have, but now they’re healthier than ever, and have the testimonials and picture evidence to prove that their magical tonic actually works.

 Except that it doesn’t, really. Maybe they were on a temporary high too, after their last crash and burn experience. You don’t usually hear case stories ten years after the original claims, do you?

 I’ve had so many ups and downs over the last fifteen years, since I was first diagnosed with the dis-ease, that’s robbed me of time, untold sums of money, and my quality of life. And I’m still not much closer than I was in the beginning to finding a long-standing remission. The longest I get is six months, before the sickness starts creeping back in, though I’m rarely ever completely devoid of symptoms. It becomes a tamped down version for a brief moment in time. ‘Dis-ease lite’, if you will.

 I know this all sounds terribly depressing, but the thing is, if I wasn’t writing about what it’s really like living with an autoimmune dis-ease, someone else would be suffering in silence too, feeling alone, and probably scared, if not depressed and hopeless. So by writing down my real feelings and true experiences, isn’t that somehow giving a little more hope to someone else?

 I’m hopeful that sharing my story will help those who don’t have this dis-ease be a little more understanding and compassionate towards those who do have it, and maybe more supportive too. After all, we need each other, especially with the way this world can be today.

 Above all, I am a resilient and resourceful person, and I WILL find a way to heal myself enough so that I can get back to at least some semblance of the active, lively person I once was, but maybe an even better, kinder and more patient version of myself. A person who listens to others, especially those who say they are sick, but “look well.” It starts with me.