Oh, so you don’t work! That must be like a Vacation Every Day!
I saw you do a thing! You must be Fine!
I saw you left the house! You must be cured!
I saw you were on social media! You must be feeling Better!
Let’s look behind closed doors with some #SickSelfie and #MigraineSelfie pics. Not me smiling even though I feel horrible and in pain. Nope. Just crappy day selfies of bad days and it has been very bad days.
No one takes and post pictures like this because we look crappy and we feel crappy and no one wants crappy sucky pictures. But I did for this post and my Instagram linked to this blog… because it is Real. And I think maybe people need to see Real more often. Maybe that would eradicate the stigma we constantly hear.
Day 1 Example:
- On the couch all day. Literally. Not some of the day. Not most of the day. All of the day.
- High-level migraine using ice hat to try and lower pain level. It isn’t a day where I could use a triptan so I like to try ice to dampen the pain if I can. This ice hat is my best ice treatment. When it runs out I have 2 other ice packs to try.
- Extreme dizziness so on the couch all day and using a cane to get up for anything. Basically slept a whole Lot. Very hard to get up and about… felt very tired and hard to move about. Very off-balance with disequilibrium.
- Nothing was done all day. I couldn’t function at all.
- Fibromyalgia pain aggravated by not being able to move around a lot. That is the price I pay for resting too much.
Fun day, eh? What a Vacation!
Day 2 Example
- Another bad migraine day in a long string of migraine days since I get them every day. I tried a triptan this day, didn’t really cut it.
- More extreme dizziness that laid me out. Meant I napped a lot. And couldn’t function. Again. Again hard to get around, and had to use my cane. Lot of balance issues again.
- Again couldn’t do anything. No housework. No hobbies. No nothing.
- Again fibromyalgia pain aggravated my laying down that long but sitting up made me dizzier… so not much choice there.
It is like the neverending story. That day just ran into the next day and same sameness.
Point is people do not see our bad days or weeks or months behind closed doors. They do not see us laid out with heat packs or ice packs. With pain creams rubbed like so many places we might as well bathe in the stuff. Unable to do basic things and unable to distract from the pain. Exhausted and drained from just getting through it. Unable to sleep because of the pain. I skipped a shower/bath yesterday because I was just way, way too dizzy. This means I have to today before I get way, way too dizzy.
Sunday turned out a little better. I got out of the house for a bit but it did lay me out when I got home, as one would expect. Still got out and about for a visit with my dad… and that is a victory. Sometimes you gotta take what you can get.
This is what they see:
I still have a migraine, still dizzy and off-balance and not well… but I wanted to take a selfie because I had dyed my hair some days ago (I want a selfie of every random colour I choose to dye it- maybe I will get a selfie rainbow!) So I look fine. Well, I don’t look Happy per se since I am not really smiling that much but I do not look chronically ill. Even though in that first pic I was still in my PJs and had been all day- a sign of a bad day because for depression management I usually get dressed even if I go nowhere. And both of these have a filter because without it looks like I have not slept for years… it is just the pain that does that and the actual lack of sleep.
But seeing this on Social Media… seems to imply I am Okie-Dokie. All is good. Hanging around and chilling… like I am on vacation. But it is one picture. Not the two naps it took to get me through the day. Or the fact I could only do 10 minutes of housework and then needed to rest. Or couldn’t even read because I was too dizzy. None of that is seen in a picture.
Or sometimes they see this:
They see a decent day and the short period of time you went out and about… in this case to visit with my aunt and uncle. Notice… I am wearing sunglasses Inside and that should be a Hint I have a migraine that is not well managed and I am just dealing with it. But I am smiling. I have decades of experience dealing with chronic pain and chronic migraine… if I cannot fake a genuine smile by now, well, I wouldn’t have done nearly as well at work for as long as I did… and I can be happy and in pain… to a degree. (too much pain flattens emotions. Dampens them. Or… deepens them. But moderate or moderate-high I can laugh and smile and be happy, just not very functional).
Someone Sees this and they think ‘Oh she is out and about so she must be Feeling Fine or Cured’. Ah. No. I can and do, when things are decent, socialize for short periods of time about once a month… or once every two months. Because that is healthy for my mood and self. And self-isolation increases depression. But it is hard and some days literally impossible. And sometimes I leave early. And some days I cancel plans. But some days I do go out and about for a limited time. And that doesn’t mean I am not in pain… I am still in pain. And that doesn’t mean I am cured… that just isn’t happening. It means I am human and I am trying to do human things within the limitations I have.
This is not a pity party. This is a reality check for the healthy people out there.
We are coping the best we can but we do have limitations and we do have to pace. And we certainly have bad days. And we certainly have downturns in our health where our functionality is basically nill.
But we do cope. We do adapt. We do persevere. We find ways to do things differently and at a slower pace. Things and hobbies we can do to fill the time. Slower paced housekeeping. Slower paced errands. Sometimes pushing ourselves too much and needing to recover for days after that. Some of us have caregivers that help us immensely (my spouse, for example, does all the grocery shopping and all the errands). Our lives look different for sure but we do make a life.
I just want people to be very aware that what they see in pictures on social media is a Fiction. It is the best of the bestest. It is a fabrication. A facade. And we excel at presenting a facade to the world. No one out there wants to hear the minutia of our illness. The day to day crap we deal with. No one. But they should not for a moment believe we are living it up a home having a blast because we don’t work. I deeply wish I could work, for productivity and for financial reasons. And I can’t. And that sucks, a lot. This is not a vacation. This is not a party. This is not some smiling picture on Facebook. This is not that one picture you saw of us outside of the house. Day to day, we Work at coping with our chronic illness. Some days are very hard. Some days are moderately bad. Some days are not too bad at all. But we have limitations on all those days. And we have to pace on all those days. And what we can do on those days… is far less than people may think.
It is a good day for me if:
- I am able to do 15 minutes of housekeeping
- I am able to do 5-15 minutes of physio exercises or riding my stationary bike (not possible at the moment)
- Able at least take my turn making super which I have not in some time.
- Maybe do a little laundry
- Scoop the cat box
- Spend some time on 1 hobby
And that is a damn good day. Most people would think that is very little but that is my Best Damn Day these days. And I have had a very poor functioning span since the 8th of February… so no damn good days since then. Maybe some slightly functional days where I do 1 of those things. That I have done. But a lot of days where nothing gets done. And this happens. We have streaks of low functionality. It happens. I hope it gets better. It may not. I may have to adjust to this level… who knows.
All I know is that functionality is a spectrum from Functioning to completely Non-functional… and variations in-between there. And we have to choose what we are capable of that day based on where we are on that spectrum. That is the life we have. Deciding what we can and cannot do based on what our limitations are that day.
We do not want pity. No thank you. We want you do understand a realistic view of chronic illness reality. When someone can do something one day… doesn’t mean they can do it another day. When you see them out and about it can be hard for them and when you don’t see them… behind closed doors you have no idea what they deal with. Understand that a chronic illness is Chronic. It has Chronic symptoms that the person deals with all the time. They have very bad days, or bad bouts, and have what they will call ‘good days’ (a normal person would think that is a very, very sucky suckfest of a day). And functionality will vary erratically.
So never tell them how lucky they are for not working. Trust me, my budget doesn’t feel lucky at all.
Never say they must be feeling fine because they are on social media when that may be the only social interaction they are getting or the only distraction they are capable of engaging in.
When you see them out and about understand they still are dealing with symptoms and it may take them a lot of effort to be out and about… but being isolated is sometimes even worse… so do not assume that means they are all good.
This is simple stigma that you can eradicate by just Thinking about it. Because trust me, we will say we are fine and we will smile… because we are used to making all you normal people feel comfortable.