I am cross-posting and emailing this =everywhere=… so apologies if you end up seeing it more than once. 
[Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at invisibleillnessweek.com. If you are interested in blogging a post like this one please go here: http://invisibleillnessweek.com/?p=2301]
30 Things About My Invisible Illness You May Not Know
1. The illnesses I live with are: endometriosis and fibromyalgia. These days, the former is not a daily problem, but the latter is a daily problem more often than not.
2. I was diagnosed with it in the year: endometriosis can’t really be diagnosed without a surgical procedure to go in and see what’s going on; my last surgery was in 2002. My fibro was diagnosed in 1998 or 1999, i can’t recall.
3. But I had symptoms since: with both endo and fibro, it’s hard to tell when the symptoms started. My periods have always been painful, and they started when i was 13. I remember feeling a lot of general aches and pains since i was a child, but those could have just as easily been caused by the sort of childhood i experienced. The fibro really ramped up when i was 19 and in college, where the pain started to become drastically disproportionate to my experiences.
4. The biggest adjustment I?ve had to make is: honestly, i’ve had these things for so long, i don’t remember living without them. So the adjustments weren’t how i lived with them, but rather how i lived with other people while living with these conditions. Learning how to ask for help was a pretty big one for me.
5. Most people assume: … i have no idea. I can imagine that strangers might assume that any external signs of problems (the occasional limp, awkward gait or other signs of pain) might be due to my size… but that could be me being sensitive about my weight. I can imagine that some of my family might assume that i’m overreacting or being too sensitive… but that could be a misinterpretation on my part. I can imagine a lot of assumptions, but honestly i’ve found that it’s better for my emotional well-being if i don’t take the opinions of strangers into account, and if i recognize that family members still love me even if they don’t always understand what i’m going through.
6. The hardest part about mornings are: wanting to sleep more, but having to get up because it hurts too much to stay in a horizontal position.
7. My favorite medical TV show is: non-existant. I don’t watch television.
8. A gadget I couldn?t live without is: the computer. Since going out is both mentally and physically uncomfortable, it gives me other means of connecting and communicating with the people i care for.
9. The hardest part about nights are: falling asleep. Sometimes it’s hard to find a comfortable position, and i =have= been able to pull my back out just by changing positions in bed.
10. Each day I take __ pills & vitamins. (No comments, please) – it varies. When i was in my “pretend i’m a guinea pig” phase, the number was anywhere between 5 and 20. Currently, in the morning i take omeprazole for the perpetual heartburn, vitamin D, lysine (if my mucous membranes are feeling raw), omega-3 oil (if my aches and pains are particularly bad), and evening primrose oil (if i’m feeling hormonal or crampy); in the evening, i take one 50mg tablet of Elavil (generic: amitriptyline) to help regulate my sleep cycles and treat the sleep disorder issue that plays chicken/egg with fibro.
11. Regarding alternative treatments I: have tried damn near everything, because for ages it was impossible to find a doctor who didn’t say, “oh, just lose some weight and you’ll be fine.” Some of the more notable experiments include: massage, chiropractics, yoga, exercise, a variety of different types of diets, 5-HTP, cayenne, glucosamine (don’t try that one if you’re allergic to shellfish, yikes), magnesium, probiotics, the guiafenesin protocol, turmeric, yerba mat?, and a score of other things i’m forgetting.
12. If I had to choose between an invisible illness or visible I would choose: i honestly can’t say. On one hand, a visible illness might make it less necessary for me to constantly explain myself; on the other hand, an invisible illness means that i am less externally defined by a projected image of =any= sort of illness. In this case, if either side of the visible/invisible fence seems greener, i can assure you that i know exactly what it’s being fertilized with.
13. Regarding working and career: i don’t have many options. I need some kind of job with low/minimal physical requirements. For the past decade or so, this has translated into tech support jobs. Currently, i’m between jobs, as outsourcing is the bane of my existance.
14. People would be surprised to know: i don’t really know how to answer this one.
15. The hardest thing to accept about my new reality has been: …? No idea how to answer this, because my invisible illnesses have been with me for 15-20 years.
16. Something I never thought I could do with my illness that I did was: walk a mile without needing a day to recover. Amitriptyline has done wonders for me.
17. The commercials about my illness: are things i’ve heard people complain about, but don’t often see (that whole “don’t watch telly” thing). I have seen one commercial for Lyrica, i think. It involved a woman writing something in a diary at one point, and i remember laughing (sarcastically, mind you) at the beautiful and regular handwriting: i know a lot of people with fibro who can barely write legibly because it just hurts too much.
18. Something I really miss doing since I was diagnosed is: … there was a very long period of time between the onset of symptoms and actual diagnosis, and an even longer period of time between diagnosis and successful treatment. So i’d be talking about missing things i haven’t been able to do since high school. I guess i’d say i miss riding my bike, but that has more to do with my not-bike-friendly locale and less to do with my ability to actually ride a bike.
19. It was really hard to have to give up: the friends who didn’t understand that no, i really DID want to hang out with them, but was feeling too ill to go out that night… or the night after that, or the night after that, or the night after that.
20. A new hobby I have taken up since my diagnosis is: knitting and crocheting. Sometimes it hurts, and sometimes my hands make funny rice krispy noises when i’m doing it, but it makes me feel productive and useful. I can’t clean the house, but i can make hats and afghans that will keep the people i love warm.
21. If I could have one day of feeling normal again I would: start the morning with a good jog through the neighborhood, meet a friend for coffee at a nearby cafe, take a 5 mile hike through the woods with a picnic lunch, take a stroll through a museum or art gallery, clean the hell out of my house, have friends over for dinner, and go to bed to have gymnastic sex with my husband before falling into an undisturbed and restful sleep.
22. My illness has taught me: how to live with it instead of around it. It takes up a lot of space, and living around it means barely living at all. Living with it means i have to make a lot of sacrifices and compromises, but i’ve learned to be okay with that. For the most part. It has also taught me that health is neither a guarantee, nor is it a moral issue. Chronic conditions are NOT some form of cosmic punishment. 
23. Want to know a secret? One thing people say that gets under my skin is: (i have to pick ONE?) I dislike anything that someone says that either directly states or implies that fibromyalgia is something that you can “think your way out of”. This isn’t mind over matter. This is an honest-to-goodness real and valid physical condition with real and actual neurological components. Just because YOU haven’t done or read the research doesn’t mean it isn’t out there or that it hasn’t been done.
24. But I love it when people: understand that my not being able to keep up with them isn’t in any way indicative of how much i care for them.
25. My favorite motto, scripture, quote that gets me through tough times is: “This, too, shall pass.”
26. When someone is diagnosed I?d like to tell them: “You are NOT ALONE.” Invisible illnesses are incredibly isolating, as is pain itself.
27. Something that has surprised me about living with an illness is: how many other people i know who have similar conditions.
28. The nicest thing someone did for me when I wasn?t feeling well was: … there is no One Thing. It’s all lots of little things. My husband does a wonderful job at so many of these things, describing them and listing them is a post unto itself.
29. I?m involved with Invisible Illness Week because: i think it’s important.
30. The fact that you read this list makes me feel: hopeful that you might understand me better, worried that i might scare you off, and terrified that you might think i was making any of this up.