"You're not sick. You look fine."

So I was told in the summer of 2013. I was interning and boss was not having any of it. I was struggling with the humidity of the season with fatigue, headache, and weakness. Boss demanded to see my medical records. Not only is that a HIPAA violation, but also it is incredibly invasive personally. Yet this response - of disbelief, of scoffing, of dismissal - is common. If you were to scroll through my photos on any media, you'd see an engaging mix of my smiling face, the few where I am tired/weary (usually captioned with an explanation), and an overall life filled with flowers, mini-adventures and my family. I do look fine. You'd have to scrutinize pretty closely to see the bags always underneath my eyes; the lines growing at the corners of my eyes and mouth; the slight droop on my right side of my face, most noticeable in that my lips are a little lower on the right. But even these are hardly noticeable to my loved ones. More noticeable is the weight gain, though that is pretty fairly attributable to my having gained the 'married 30' (you gain weight if you're in a happy marriage, according to some studies; and, as I am very much in love with my husband,..).

And there's the rub: chronic illness, autoimmune illness, is deceptive. You can even feel fine, be getting stronger and then...whomp....there it is: fatigue, headaches, nausea, pain (of all types. another post on that later), weight loss or weight gain, swollen joints, difficulty moving around, difficulty even breathing. Unless the illness is serious, terminal, or has already taken its toll (I think of ALS and MS as two key examples), you cannot see a person and determine whether they are unwell. To a standard observer, most autoimmune sufferers - or, as they are colloquially known now, spoonies - look as functional as the next person. To further illustrate this, let me relate to you the story of the photo on Spoonie in an Empty Bowl: me and the butterfly. My husband acquired for me a pass to the local aquarium. I was spending so much time downtown for my varying appointments (and we only have the one car) that I needed to be able to go somewhere besides the local Starbucks. We have also used it for date days on weekends.

In any case, one of my favorite exhibits is the butterfly gardens. I went with my husband, feeling strong. We always pause in the gardens, to people-watch, to butterfly-watch, to see if butterflies will land on us (they almost always land on him first). I was feeling self-conscious again about my weight gain, so I armed myself with a coordinating top and really pretty skirt (blue and pleasant to touch) - it boosted my confidence! (plus watching butterflies fly is uplifting of its own accord) But - The night before I had struggled to sleep. Insomnia is considered a symptom of some autoimmune disorders, but it is not clearly understood why. Because people also don't sleep well when they are stressed, don't sleep well when they consume certain foods, don't sleep well due to hormonal changes (though more often in women, men can also experience changes; and those who are transitioning in gender as well), it's difficult for doctors to determine the root cause. What you don't see in the photo is my taking my husband's arm as we walked around, sighing in relief as we get to some of the darker exhibits (I am photosensitive, which means too much light can cause pain), resting at certain points to maintain energy levels, his asking me, "Are you okay?" as we navigated through the heat. Or that I was feeling weak on my left side - the closest hint is I am supporting my wrist in the photo. I posted the photo wondering what people would perceive. I had a hard time posting it, though I did (and always want to) want to share my enthusiasm for the aquarium. To me, the shadows under my eyes were clear - like someone tattoo'd permanent purplish-blue eyeshadow in the wrong place. It felt like I was starting to look like an alien; no matter the amount of rest or sleep I got, the shadows never disappeared.

When I gathered my courage to check, I found the comments were: "You look so well!" "You look good!"

**** The reason I write, and the reason a more thorough account of my history will be shared here eventually, is I want others to know it is hard fighting not only the illness ( or illnesses; it is not unusual for autoimmune disorders to come in pairs or triples), but the world at large. It comes up in general virtual encounters like I described, or in getting harassed for walking slowly on the sidewalk, or if you have a disability sticker and get bothered taking one of the closer spots nearer the store (has not happened to me yet, but I know some who have been). It comes up when you look for employment, trying to figure out how much to reveal or not to reveal when you know taking your energy into account is significant, but you also have bills to pay. It comes when you are employed, trying to balance paid time off with the difficulty of getting up from bed. It shows itself in thousands of little ways, and I want you to know you are not alone. It is a difficult fight, but if we unite and keep communicating and keep pushing for change, it can make the small battles easier, and the larger war - for cures - more fathomable.