Those of us who have invisible illnesses know what it is like not to feel validated in our illness. The old adage, "You can't judge a book by its cover" certainly applies. One of the biggest lessons I learned since my migraines and New Daily Persistent Headache (NDPH) started is that you cannot really know what is going on in people's lives just by looking at them. If I had a built in band-aid on my head that showed up when I was migraining or having head pain, possibly people would see I am hurting more often then they think. I do not want attention for my pain, but understanding. Sometimes the pain that others do not see affects my decisions.
"But you look so good" does not apply. Why not? Despite how I am feeling, I want to enjoy my life. My pain is always present, but that does not mean I always want to focus on it. So, I smile and I am "up" despite how I feel or the effort it takes. A smile on my face does not mean that I am feeling okay. But it does mean that I want to attempt to enjoy my life. People with invisible illnesses want to live too, despite the pain. So what you see, may not be the whole story.
When people do not understand that we are hurting despite our invisible illness, when they judge our book by the cover, it is important to remind ourselves that it is an opportunity and take it as such. Often people do not understand the facts of our disease and that it may not be or is not visible. If I had a friend with an invisible illness, I think I would want to know about her pain so that I could understand more of what she is going through.
In conclusion, others may judge our book (our illness), by our covers (how we appear). But, it is ultimately up to us to educate our family, friends, peers, co-workers, neighbors and strangers by letting them know what is really happening.