I started to make this a post on Facebook- then it grew and grew until it had a life of it’s own so I am dropping it here. If you have anything to add- drop it in the comments. I am sure I missed something so I look forward to added perspectives. Now here we go!
Let’s talk for a moment about Invisible Illness. It’s called Invisible for a reason. You may see a change in our gait, you may see that we are moving body parts with care or more stiffly, you may see that we look…puffy (that’s swelling friends- not water weight) or any other subtle change. Here’s the thing- what you see is only an infinitesimal part of what’s going on.
Let’s say that we were to brace (not cast because nothing’s really broken) up the parts that are hurting or use the assistive devices that we are in need of to move around. Here’s what one of my flares may look like, from top to bottom:
- 1- We start with a neck brace because not only does the neck hurt from Degenerative Discs but moving it impinges on the nerves and cause numbness from the neck to the fingers.
- 2- Next, we add slings to immobilize the shoulders on both sides because the shoulders hurt to raise or lift anything.
- 3- Wrist braces on both sides because both hurt but the right is worse than the left so anything we can do can be done left-handed.
- 4- We can’t brace ALL of our stiff and aching fingers because that would be ridiculous so instead we carry hot/cold packs to minimize swelling and/or stiffness.
- 5- If possible, the lower back should be braced down to the S1
- 6- There is no brace available for the hips that would allow both to be braced and since it’s bilateral (though the right is worse than the left thanks to those pesky bulging and herniated discs in the lower back) a walker or cane is necessary- but wait- with both shoulders and wrists in pain we can’t push/lift the walker!
- 7- Hey- GOOD NEWS! The Knees are in okay shape as long as you don’t have to kneel down on them!
- 8-Next are the ankles. Let’s brace the left because it’s worse than the right and just thrown an ACE wrap the right for support.
- 9- When wrapping that right ankle, be sure to wrap all the way down to the toes because while both feet are swollen and painful the right foot is so swollen our regular shoes won’t even go on those feet. Another option would be compression sleeves and a boot- or two.
- 10- Finally, since those shoes won’t fit and your hands don’t work, be sure to wear some slip-on, or velcro-close, shoes that make up for their lack of any semblance of style with comfort geared toward swelling.
I would be remiss if I didn’t add that often there is more than one illness involved- so in my case you may have bronchitis/shortness of breath during this thanks to the RLD or, if it’s the Fibromyalgia that’s in an accompanying flare you can’t stand to be touched because even a hand to steady you can feel like you are being hit with a baseball bat.
Now- close your eyes and visualize yourself or a loved one in this situation and commit it to memory. Can you picture it? Now- if you saw a stranger that looked like this your first thought would be something to the effect of “Damn- I wonder what train hit them!” or- “Poor person, glad I am not them!” If it were you- would you get out of bed? If you got out of bed would you go to work/school/social events?
Okay- now let me throw in a capper. Pain is exhausting. Exhaustion exacerbates pain. It’s a real bitch of a self-feeding cycle.
Here’s what- many, many, of us feel like this every single day. Many more of us are blessed enough to have ebbs and spikes in our Chronic Illness journey which means that some days we feel “okay” (for us) and some days that freight train runs right over us and we are subject to a “flare”. The only kicker is that a flare can happen in an instant and we never know when/where/what we will be doing when it hits or when it will end. We can only endure it as best we can.
Most of us function through the pain every single day. As years pass living with chronic pain, often our tolerance for the pain increases so that what a “normal” person considers an 8 on the pain scale is our 5 and our 8 is a “normal’s” surgery with a butter knife and no anesthesia. We do our best to live our lives to the fullest- knowing that we can no longer keep all of the balls in the air. Whether it’s in our social life, our home life or our work life, we can’t do everything that we would like and that at some point we will disappoint someone that we care about- we can only hope they understand. We also know that by just looking at us, people make judgments about how we look, what our capabilities are, how motivated we should be and more.
So please, the next time you see someone, (whether you know them or not) before you decide that they are; lazy, malingering, antisocial, undeserving or any other negative judgment that you feel is your right to make, picture yourself in the description above.
The next time you are disappointed in a friend for not making or keeping plans, a colleague for not moving as quickly as you would like at a task, a family member for not hosting whatever event- remember that visual.
Unless you are in our skin, you have no idea what we are dealing with and I, for one, would not wish it on anyone. Thanks for making it this far and I hope it gives you a glimpse into Invisible Illness and Chronic Pain.