The issue arises when photos become an expectation.
If someone goes for a hike and happens to see a rare bird or wild animal, there is this expectation of a photo. We can't seem to just tell stories of what we have experienced anymore: we have to prove it really happened.
Even worse than that, it has become so common to edit, photoshop, alter, or even entirely fabricate pictures and videos, that even if there IS proof, it is mistrusted immediately.
We live in the time of: "Pics or it Didn't Happen".
How does this relate to illness?
Have you ever had to call in sick because you were legitimately vomiting for four hours straight overnight, but not been believed? Has someone ever doubted what you are saying, assumed you 'drank too much', were 'exaggerating' or just plain lying about feeling unwell?
I mean, we know where the mistrust comes from: people who call in sick just because they want to play hooky, people who fake illness to get out of a class or big presentation, those who are hungover or just simply feel lazy, etc...
But how many of us actually think to take photos or video during our worst moments??
I first started taking pictures, and even sometimes video, of when I was particularly ill when I was working in an office with an entire room of people who doubted every single time I mentioned being ill. I do agree that, at times, the issues I was having were hard to believe.
The most common complaint (that I knew about) was that, if I had an appointment, I would 'skip out' on work for several hours longer than my appointment should have lasted.
Of course, explaining that specialist appointments often last several hours wasn't enough. It wasn't enough to explain that if I am late, they would give my appointment away, but that the physicians themselves are usually behind by at least an hour. (Specialists deal with many complicated patients and simply need more time, in waves that are difficult to predict). Then, going over my issues usually takes 2 or more hours with a new specialist or one I see rarely. Then there is driving to and from the appointment, finding parking, and maybe stopping at a drive-thru to make it through the rest of the day - if I didn't feel too guilty to make any stops.
It sounds bogus. Especially to anyone who has only ever had to go to their family physician once a year or maybe even a few times for random issues. It makes no sense to someone who has never seen the 'chronic' and/or complicated side of healthcare.
That is when I started taking pictures.
Pictures with captions like 'still waiting' with a clock in the background. Pictures sitting in the waiting room in a hospital gown or about to get a scan or bloodwork done. Then in the vehicle - 'finally done, on my way back to work', smiley face, facepalm, eye-roll, sleepy face.
God forbid if I actually went onto social media while I was waiting. Oh man was that ever an argument. It was better to take a book with me instead anyways - since going on social media during work hours (even though I had to wait and could not do my job from the waiting room) was an abhorration.
Then came the videos.
I have to admit, I still hate trying to take pictures or videos when I am in the thick of any severe episode. It's not like I can even manage to physically do it myself anyways. It doesn't happen very often, and if it does happen it can be during those 30 seconds of calm in between puking fits. Really, who wants, or even THINKS, to document those moments? I began asking my husband to take photos or videos of my worst episodes. He forgets too - we have much bigger issues to be concerned about than having him videotape me while I am bawling and nearly screaming for help.
But then if you tell people what happened, it is incredible how many people don't believe it.
Pics or it didn't happen right?
It couldn't have been that bad or you would have passed out from the pain.
I'm sure the doctor didn't say that.
There's no way you were diagnosed with that, you're too young.
That illness is too rare for you to have.
It probably wasn't as bad as you think.
You couldn't have been in that much pain.
Seriously, you ate nothing but fluids for 7 days? That's impossible.
Finally, tired of being doubted all the time, not only did I start taking pictures, but I also made sure I ordered my medical records. So if anyone says 'there's no way you have that many different illnesses', or if they look at me like I am lying about some of the episodes I have gone through, it is all right there on paper.
Don't believe I ended up with 2 IUDs in my uterus at the same time?
It's in my medical file.
Don't believe an NG tube ended up causing an ulcer?
In my medical file.
Don't believe that I was diagnosed 100% with Ulcerative Colitis, and then ALSO diagnosed with Crohn's Disease later on after abdominal surgeries?
Don't believe my SI joints are eroding?
Don't believe I have Hereditary Angioedema?
Don't believe I needed my gallbladder out or my large intestine out?
Don't believe I have spent entire DAYS vomiting every half hour or so?
Don't believe I have cracked ribs from vomiting before?
Don't believe I was forced to do a pregnancy test and refused a thyroid blood test when I kept losing weight dramatically?
It's all there. Medical file. Witnesses. Diagnoses. Test results. And some photos.
It is just a shame that we live in such a time when scams and scammers are rampant. This whole idea of having to prove anything we do is ridiculous. Who wants someone videotaping them when they are going through a medical crisis that requires hospital intervention?
On one hand, it becomes a valuable teaching tool. I have seen epileptics videotape themselves directly before having a seizure - to show people what it is like for them, but to also prove that they suffer from that disease. (Of course, some people still like to claim these videos are faked). I have had friends feel obligated to tape themselves when having severe tremors, allergic reactions, seizure-like episodes, fainting spells, etc... just to prove to a doubting physician that they are, in fact, happening.
I keep trying to remind myself to visually document my worst moments, but then I only remember after I am through the worst of it. When I was having a severe gastrointestinal reaction to a medication in the ER, I wish we had taken video of how horrendous it was. But it was so terrifying that I was very seriously just trying to make it through the next five minutes. The last thing on my mind was to have someone tape me while I truly believed I might be dying.
When I have these frightening throat swells that affect my breathing, all I can think about is trying to make it to the hospital before my throat entirely obstructs and I suffocate. Want to know how many times I have remembered to take video of how I sound and seem during these episodes? Zero. Zero times.
Having chronic illness can mean having to expect and get used to being in 'crisis mode'. It means understanding that one complication could require emergency intervention, hospitalization, or even urgent surgery. It is having one foot out the door always ready to go to the ER, having specialists on speed-dial, having a favourite EMT, even a favourite hospital & emergency room.
It means lots of experiences that are very nearly unbelievable, and an expectation from others than if you can't prove it, maybe you are just lying.
My advice: document when you can, ask for copies of medical records every couple of years, and always remember that people doubting you does NOT trivialize what you have been through.
