One of the biggest complaints I hear from those with chronic illness is that it is an Invisible Disease. Whatever it is for you: Lupus, thyroid disease, chronic pain, migraines, or peri menopause, the fact that people are only concerned with what they see can leave us with the feeling that others either don’t believe us or think we are making mountains out of molehills.
Some of the things we hear are:
“You don’t look sick!”
“So glad you are recovered.”
“I’m tired too; everybody is tired. Don’t make a big thing out of it.”
“You look fine to me! Why can’t you just…”
Just because you can’t see our pain or fatigue or brain fog or <insert invisible issue here>, doesn’t mean it isn’t there. Chronic pain doesn’t cause bruises. Depression doesn’t show on the outside. Migraines don’t leave scars. Chronic fatigue doesn’t come with circles under our eyes…well, maybe sometimes, but there’s this incredible invention called MAKE UP!
Silent Pain is a poem I wrote that explains a bit about how we feel about the pain part of it, but I had an interesting experience the last six months that I’d like to share because, while I had no idea it would relate to this issue, I found it perfectly described the invisible part of chronic illness.
As I told you in previous posts, I have had three surgeries in the last six months. The first was to remove my left ovary and tube. The second was to remove all the rest of my lady parts as they might have also contained cancer cells and the only way to know for sure you don’t have any more of this type of aggressive cancer is to look at everything under a microscope. Although I’m only 5′ tall, I’m not small enough to fit under a microscope so they took it all out. Good call, Doc!
Those scars are all on my stomach. I have four small incisions/puncture marks and one very long smiley face well below my belly button. Since I will never again in life wear a bikini or midriff top, nobody but my dh and myself will ever see those war wounds. However, when I returned to church and met with friends and went out about my business, I ran into people who really didn’t ask how I was doing or thought that because I looked ok, that I was feeling fine. Well, a radical hysterectomy takes six to twelve months to completely recover and I am only four months as of this writing. I still have numbness on my stomach, the fatigue is something that is said to last a while, and the hot flashes and other meno symptoms are the stuff of legend. But every time I was asked how I was and I tried to tell them that I was still tired or having issues, they dismissed them sounding as if I were making it up or milking it for all it was worth. Well, I’m kind of used to that having had many chronic illnesses since I was a kid. So…
My next surgery was a month after my hysterectomy. However, this one was much more minor. With my hysterectomy, I stayed in the hospital three 
days and wasn’t able to go out for two weeks. With my parathyroid surgery, I went home just hours afterward. Recovery time is much shorter and I had no real pain. Never took any pain pills. Yet, when people see me at church or out and about, they can see the red, inflamed smiley face on my neck which makes it appear that I have swallowed a tennis ball after someone slit my throat. NOW they ask me. NOW they listen when I say I’m still tired after having three surgeries back to back. NOW they are understanding.
My surgeons have been incredible. All of my surgeries and doctor visits were handled quickly, decisively, and with compassion, but they didn’t solve the underlying problem of chronic illness. Now that the surgeries are behind me, I am going back to my regular drs to finally address the most frustrating issues of my health. They may not be life threatening, but they greatly diminish my quality of life. Know what I noticed? Most of my appointments are now marked by the doctor saying things like, “Let’s try this” and “Let’s wait and see” and the ever popular “We’ll handle that at another time.”
I’ve said this for years: Modern medicine is INCREDIBLE at solving things like broken bones and diseased organs, but not so much at solving chronic illness. As long as they can see the problem, they know what to do to solve the issue. My wisdom teeth were impacted, my wrist had two big cysts, my gallbladder was diseased, my uterus had a huge fibroid tumor, my ovary had a large cyst, my parathyroids had growths, but my fatigue and pain don’t have a visual marker.
Perhaps one day medical professionals will discover a visual marker for pain, fatigue, depression, and brain fog. Maybe there’s a microscope in the near future that will be able to see a frowny face on our genes. Until then, we have to accept that what people (or doctors) cannot see, they cannot have compassion for. But those of us who deal with invisible illness have compassion for each other and that’s why this blog exists and I pray you don’t feel as alone as you once did.
“Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand.” -Isaiah 41:10
There are a lot of commonalities between how other people deal with grief and with chronic pain. Most are understanding and compassionate for a time and then they move on (which is fine, it isn’t their burden) but then they expect you to, too. Or their attempts at being helpful are focused on how you need to change your perspective, cling to Jesus or whatever, with no real understanding that that is exactly why you are able to go forward each day.
That’s right. I hadn’t thought of grief, but depression and grief are similar with respect to this issue.
It would be nice if people could “see” pain and “extreme fatigue” but they can’t and too many people think someone else should “be over it” when they themselves have never experienced what the other person is going through.
Of course not everyone is like that *thinking someone should be over something or that they are not in as much pain or stress as they are but too many people seem to be like that, or maybe it’s just they don’t know what to say, so they maybe think it will make someone else feel better somehow if they try to lessen how bad a situation is by saying something like “well at least…” or “that was a long time ago, you should be recovered by now..” or anything similar.
But some things don’t really get better we just get better and not mentioning things that are bothersome because unless someone else is walking in our shoes or even sometimes if they have, there seems to be an unrealistic expectation that everyone can recover or cope with whatever is going on in their life better than they can or at least as well as someone else seems to be.
When I was writing on yahoo I wrote a poem called “I’m Fine” if I can find it I’ll share it, but basically the poem says what someone wants to hear that someone is fine but really the individual is not fine. 🙂
Oh, Anna! I would be honored if you’d share your poem here!
I’ll try to find it, the computer I had it on crashed but I did print out a lot of things I had online. I’ll see if I can find it, it may take me a while though because everything in here is a mess.
I know too well how people minimize my major chronic illnesses like Fibromyalgia, but then if I wear a wrist brace at times because of an old injury, people will go out of their way to see if I’m ok.
I tell them the wrist pain is nothing compared to what I go through daily.
Another perfect example. Thanks for sharing it, Tanya!
That would be wonderful! Thanks, Anna!
Hey just wanted to give you a quick heads up. The words in your article seem to be running off the screen in Opera. I’m not sure if this is a formatting issue or something to do with internet browser compatibility but I figured I’d post to let you know. The style and design look great though! Hope you get the issue solved soon. Kudos|
I have no idea what Opera is and I’m not a techie so I’ve no idea what that means for the site. It’s a common theme so it should be fine in any browser.