If I can get across a single thing about an invisible illness it would be that even though you can't physically see what my illnesses are doing to me, that they have a serious impact on my life and are just as serious as the diseases that you might be able to visually detect. Over time I have collected quite a few labels for my illnesses: Endometriosis, Fibromyalgia, Inflammatory Bowel Disease, Rheumatoid Arthritis, Interstitial Cystitis, and even endometrial cancer. None of these illnesses will you be able to detect visually, except if I actually followed my rheumatologist's advice and used a cane to walk.
One thing that really gets to me is when people say "But you look fine/good/great". To me, my brain wants to take this comment out of context and says "Oh they are assuming that I'm not really suffering based on how I look". It's not that I don't appreciate the comment, it's that I've been down the road of people doubting my illnesses once too often to not wonder if this is what they are really thinking. When I go out, I go through great efforts to make myself look "good" and to put on the "happy face". I've learned how to pretend I'm well to the point of deserving an Oscar nomination. I believe in the "Look Good, Feel Better Program" that many of the hospitals run for their cancer patients. The premise is simple, if you look good and feel good about yourself for being able to look good, it can at least help to heal the spirit. If I displayed how I physically feel most days, I would not look well at all. Since society prefers to interact with healthy people, I attempt to play the role of the healthy, happy person and suppress what these illnesses are doing to me.
To honor National Invisible Illness Week, I'd like to share what some of these conditions are actually like for me when they flare up in my body. I'll try not to be too graphic, but give a glimpse as to what it might be like to live with these illnesses.
Endometriosis: I've lived with this one for 18 years now, but each and every time my endometriosis flares it reminds me of just how much I hate this disease. One myth about the disease is that it only causes pain during your menstrual cycle. I'd just like to say, at least in my experience, this is not so. The adhesions that have formed due to the rogue endometrial cells continue to pull and tighten on "things" throughout my cycle. I have pain during ovulation, which feels like sharp needle pin-pricks over my ovaries, and dull but gnawing cramping elsewhere. During my cycle my pain might be so bad as to make me violently ill or pass-out from the pain. Sometimes I curl up in the fetal position and just shake in pain. It's sharp, constant, gnawing, seizing, and hot pain. I have gastro-intestinal symptoms that flare up to the extreme during my cycle. This pain level could last as long as 9-14 days for me.
Fibromyalgia: I was diagnosed with this shortly after my son was born. When my fibromyalgia flares up, it really makes its presence known. I get pain that I describe as being from the roots of my hair down to the roots of my feet. It's sharp, and sometimes limits the range of motion that I have in my muscles. If someone were to even give me the lightest of touches in certain places (like my upper arms, my neck/back, etc) I could easily scream out in pain. I can remember once being sprayed by a garden hose with cold water and the resulting pain lasted 4 days. It felt like all my muscles were expanding at once, but painfully expanding to the point of being almost immobile. Even my feet are not immune to the effects of fibromyalgia, my feet often feel extremely hot during a flare-up, but they feel so hot that they actually feel "frozen" and yet all I want to do is stick them in an ice bath. With my fibromyalgia, I also get migraines which is quite common with fibro patients, as well as having sleep disturbances (well you try to sleep when all you want to do is take the skin off your body!).
Rheumatoid Arthritis: This is a newer diagnosis for me, which was determined after a bone density scan, an MRI, among other lab-work tests. I have been diagnosed with this illness in my hip. Shortly after my son was born I started to have serious problems with my hip "popping out of joint". This was so much more than just a muscle spasm. I can remember once being at the mall with my son, and going to get him into his car seat. My hip gave out and I collapsed but not before hitting and gashing my forehead on the side of the car door. I can walk without limping some days, but if this flare-up strikes, I am limping and people often wonder why since I'm so young. I wonder why since I'm so young as well.
For me, aside from dealing with the cancer, these illnesses are the ones that effect me the most regularly and tend to have the greatest impact on my quality of life. One of these illnesses alone is enough for a person to have to live with, but when you're diagnosed with multiple illnesses, which many chronically ill patients are, life seems to be a giant bag full of a variety of medicines.