May 12th is Invisible Illness Day; a day to bring attention and awareness to illnesses and diseases which don’t manifest obvious outward symptoms for the world to see. If someone has the measles or is in a wheelchair, you can tell that just by looking at them. Diseases like fibromyalgia*, Chronic Fatigue Syndrome*, Crohn’s Disease, Multiple Sclerosis, mental health problems, Complex Regional Pain Syndrome, Celiac Disease, Ehlers Danlos Syndrome, lupus, rheumatoid arthritis, Lyme disease and the one I have, myalgic encephalomyelitis* (ME for short) are considered invisible illnesses. Mental health problems fall under this umbrella, as well, and often go hand-in-hand with physical ailments such as anxiety, depression, PTSD, bipolar disorder and many others. This is by no means a comprehensive list, just a few examples.
Crack of Doom, © Sarah Allegra. A detailed shot from my latest ME-related self portrait. Scroll down to see the entire image!
According to Wikipedia and the 2002 US Census Bureau, 96 percent of chronic illnesses are invisible. This adds in an enormous extra challenge in obtaining proper medical care and treatment, as well as being misunderstood by the population in general. If people don’t know that there are quiet, private, hellish wars being fought every day by millions of people all over the world, how can we ever expect our treatment to improve, let alone find cures?
That’s why May 12th is so important. We, the sick, need people to understand, to care, to help us advocate when our treacherous bodies won’t allow us to. Awareness is the critical first step in any change happening.
Why is it so important that we treat ME? What makes our disease so special?
The Blue Ribbon, © Sarah Allegra. Model: Katie Johnson. An underwater image I shot to use our blue awareness ribbon theme as much as I could!
It can be fatal. People die from this. If not from the disease ravaging our bodies for years and decades, then it often comes by our own hands as we can no longer endure the daily pain and torment. The rate of suicide among people with ME is not known exactly, partly due to the stigma surrounding suicide and the lack of accurate diagnoses, but it is estimated to be anywhere from 26 to 53 percent in the US. The average suicide rate in the US holds pretty steady for the general population at around 11 percent.
No one should have to live like this. As someone who has what is considered only a “moderate” case of ME, I can tell you it’s a living hell. The pain is nearly constant, sometimes to the point where I am in tears and desperately wishing to die. I have migraines more days than I don’t. It takes away all the plans you had for a normal, fulfilling life. Careers, hobbies and passions are snatched away from you. You either simply cannot expend the energy on anything non-essential, you lack the basic funds to sustain most pursuits because most of us can’t work or your brain is compromised by what we call “brain fog” and you’re unable to focus on and accomplish anything. Brain fog is a condition similar to when you have a fever and can’t concentrate or think clearly. Sometimes it reaches new heights where people suddenly can’t spell, remember their names or understand their native language. Most days it’s more like mentally wading through a bog — or the Swamp of Sadness — at least for me. Because our immune system is busy fighting itself, we live with very little functioning immunity. If a cold, flu or other illness comes along, we will almost certainly get it. This often means that if I do manage to actually see other living people, I can pick up a bug while I’m there and am “double sick” for a period after.
A Thousand Battles, A Thousand Victories, © Sarah Allegra. A Viking-inspired self portrait in defiance of the horror ME has brought into my life.
Chronic illness almost never strikes alone. Other physical health issues like blood pressure and weight problems occur far more often than not. Mental health deteriorates rapidly in the face of unending pain and suffering, especially when compounded by doctors and a society which dismisses you and your problems. Remember how we talked about the high rates of suicide among those with ME? This is a big part of the problem.
We deserve to live happy, fulfilling lives, just like everyone else. When you’re constantly in pain, always exhausted and unable to think clearly, this doesn’t leave much room for whatever kind of life you wanted for yourself. And when I say exhausted, I don’t mean that we’re tired because we didn’t sleep well the night before (although one of the harshest ironies of ME is that while you’re exhausted all the time, you frequently have insomnia and whatever sleep you do get feels completely unrefreshing). I sleep for 11 to 12 hours every night and I still wake up feeling more tired than when I went to bed. On a good day for me, it’s like how other people when they have the flu. A constant, crushing weight that makes the slightest exertion a Herculean effort. On bad days, all I can do is lay in bed and drag myself to the bathroom periodically. Sometimes even feeding myself is a challenge. I might have to choose between feeding my animals or myself, because I don’t have the energy for both. And of course the animals always win; they’re my responsibility.
I am mostly house-bound and I require help with the sorts of tasks I used to take for granted. Forgot something at the store? No problem, just go back tomorrow! Nope, not with ME. Any time I take a trip outside my home, I have to plan at least one full day of recovering at home from it. If it’s something at night, someplace noisy or an extra stimulating activity, I must plan on two to three days recuperation at least. (But frankly, late night, noisy, stimulating activities happen EXTREMELY rarely because of the damage they cause later.) When I do gather my strength to photograph models, that is my exertion for at least the entire week.
Living With The Tombstones, © Sarah Allegra. Model: Katie Johnson. An image about how invisible we are, society’s projections upon us and how close to death we feel.
ME is extremely isolating. You can’t just go hang out with friends. You can rarely make it to family functions. A few years ago, I had to miss a surprise birthday party thrown for my own mother, something which still upsets me still today. I was just too exhausted to go and I knew that if I REALLY pushed myself and forced myself to go, I would pay for it for a very long time. (Thankfully, she is very understanding since she has a milder form of ME, herself. But still, ME took my mom’s birthday party away from me.) Chronic fevers and sore throats are a new normal for me. How are you supposed to plan for lunch with a friend when you know that at least half your week is going to be spend feverish, in bed, fitfully sleeping, unable to do anything at all, but you don’t know which days it will flare up? How am I even supposed to make it to doctor’s appointments like that?
The effects of loneliness are still being studied, but it’s being taken more and more seriously by the medical community. Some argue that it’s as lethal as smoking 15 packs of cigarettes per day. That’s a looooooot of cigarettes.
The grief is unending. You grieve for the normal life you once had. You grieve the hopes and plans you made which now are out of the question. You grieve the relationships that wither as you’re unable to tend to them. You grieve making the simplest plan, like taking a shower today, and finding that, no, you don’t feel well enough for that after all. Every time you think you’ve reached the end of what ME can take away from you, it finds something new to rob you of. Its cruelty never seems to have an end.
ME is vengeful god. If you violate any of its insane decrees, you WILL be punished. Probably for a long time; sometimes forever. There have been cases where someone with ME did just a little too much one day, they spent the next day in bed… and then they were never able to leave it. For the rest of their lives. At the same time though, if you try and do as little as possible, your energy supply will shrink and you’ll be worse off, too. Damned if you do, damned if you don’t.
Silenced, © Sarah Allegra. Model: Travis Weinand. Inspired by the doctors who don’t take us seriously and everyone who thinks we can’t have anything wrong with us because we “don’t look sick.”
We are massively underfunded. Right now ME received approximately $5 million a year in funding from the United States government. To put that in perspective, that’s about the same amount given to researching hayfever. Male pattern baldness gets FOUR times as much. HIV/AIDS, which is comparable in both frequency in the population and severity of illness, gets 600 times that amount. I’m not saying that HIV/AIDS patients shouldn’t receive that much; I think they should! I’m saying that ME needs to be recognized at all levels of society and government as the deadly, hellish disease that it is and get proper funding as well.
Out of all the doctors I’ve seen (more than a dozen), only ONE had even heard of ME before I was their patient. This is not okay. Doctors are not well educated about ME; if they miss one day of class, they may miss out on it entirely. Given its seriousness and how many people it affects, this should be something every single doctor learns about. It’s estimated that 15 to 30 MILLION people around the world have ME, with 80 to 90 percent of those cases being undiagnosed. Since the majority, 75 to 85 percent, of the cases affect women, it’s taken far less seriously. I personally know a woman who had been diagnosed with “conversion disorder” (that’s what they call female hysteria today) and I myself have been told by a previous GP that I was simply “anxious and depressed.” The irony was that I was currently on anxiety medications and antidepressants, so if that really was my issue, then clearly the meds were not working well enough. But that doctor didn’t care anymore, she just wanted to get me out of her office and to stop bothering her with my irritatingly persistent issues. Thankfully, both my “hysterical” friend and I KNEW that we had things physically wrong with us. If we had given in to those diagnoses, we could have easily killed ourselves by pushing ourselves too hard, as our doctors wanted us to do, by having our hearts fail, catching something our frail bodies could not fight off, getting so brain-fogged that we walked into traffic or any number of terminal scenarios.
Shades of Dreams, © Sarah Allegra. A self portrait about brain fog and living with ME.
I had a number of different images planned for this May 12th, but I’ve also been dealing with possibly the worst ME flare I’ve had since I first came down with it 13 years ago. Since the middle of March, I have spent at least half of each week (often more) with a fever, a horribly sore throat and other cold/flu symptoms that make anything not absolutely essential fall by the wayside. At one point, I had only one clean shirt left because I’d worn all my clothing and hadn’t had any energy to do more laundry. Each time I planned an image, I would realize after more and more days of being stuck in bed and feverish that I no longer had time to complete the photo I wanted and came up with a new idea. Then that new idea became too big to take on, so I came up with another idea. And on it went until we got to the point where we are now. But I wasn’t going to let May 12th pass without adding something new to my Enchanted Sleep series on living with ME. Thank you to Geoff for his generous help in getting it done at all!
I want you: you, who are reading this right now, to #GoBlue4ME! Why blue? Because that’s our disease’s awareness ribbon color. What does “going blue” mean? There are any number of things you could do to go blue. I created a couple images that you could use as your profile photos for May 12th, or even this whole week (or more!). You are more than welcome to download them and use them however you’d like! You could dress all in blue and post a photo or video of yourself with the #GoBlue4ME hashtag on any of your social media accounts. You could get a bunch of blue balloons, take a photo of them and use the hashtag on them too. Take a photo of blue flowers! Create a makeup look featuring blue, spray your hair with temporary blue coloring, pop on a blue wig; anything blue works! Post it online and use the #GoBlue4ME hashtag!
For makeup artists, I’m issuing a special challenge. You can see in the self portrait I shot here that I used shades of blue for everything, even foundation! You don’t have to get quite that extreme (although you get an extra gold star if you do!), but I challenge you to create your best, fiercest look featuring blue. I know you can do this!
Shades of Dreams, © Sarah Allegra A self portrait about brain fog and living with myalgic encephalomyelitis.
And please, pass these around! Share the links, videos and images with anyone and everyone! We have to make a lot of noise to get the change we so desperately need. You have my full permission to share far and wide! If you take up the #GoBlue4ME challenge, let me know! I’m very excited to see what you come up with!
One last note, your going blue does NOT need to happen on or before May 12th. Keep doing it as long as you’d like to! The longer we can keep the word spreading, the better.
Want more info? Want to take action? MEAction has you covered! MeAction is a fantastic site where virtually every actionable step a person can take has been collected, along with reports on research, definitions and help available to sufferers. Here is a great overview of the disease and statistics.
You can find info about the #MillionsMissing campaign and how you can join here! This movement is named for the millions of people around the world who are affected by ME and missing from their jobs, their children’s lives, their own lives. Read about the multitude of ways you can easily get involved and show your support!
Watch the excellent documentary Unrest created be Jennifer Brea, herself suffering with severe ME. I adore this documentary as it not only covers our poorly understood disease but also has extremely engaging human subjects and documents the challenging relationship between Jen and her caretaker-husband which is reflective of the love lives so many of us have. I got to help with the Kickstarter for the film, so I’ve been a fan of it for a long time! It is available on Netflix, DVD, BluRay and many other streaming services.
Watch the informative documentary Forgotten Plague, created by Ryan Prior, a young man with ME, as he searches for answers and treatments and documents his own life and the lives of others with ME. It is available on Amazon Prime, iTunes, DVD and BluRay.
Sign a petition!
Donate to MEAction to help them in their many quests!
Download these images and make them your profile photos for a day or more!
Thank you to absolutely everyone who has and will participate in this! You are helping so many more people than you know. I thank you from the deepest recesses of my heart.
And now… this year’s brand new May 12th image!
Crack of Doom, © Sarah Allegra. A self portrait for my Enchanted Sleep series on living with ME.
This self portrait is drawing from the historic plague doctors and the iconic masks they would wear. I recently finished re-reading a favorite book of mine, Doomesday Book by Connie Willis, part of which takes place during the bubonic plague of the middle ages. No mask-wearing doctors appear in it, but the thought was fresh in my mind. That combined with the current Covid-19 pandemic, the scarcity of masks, thinking about immune systems and how easily they can be gotten around by a determined germ… and this was the visual that came to mind.
Of course, a May 12th image wouldn’t be complete without it tying in to my experience with having ME. This year, I asked myself, how could I explain what it feels like to have an incurable illness to someone who’s never experienced such a thing? For once, a large portion of the world has actually had a small taste of ME, due to Covid-19. The way Covid has forced you to stay inside, rarely see other people, isolate, protect yourself from any potential germs, taken away your livelihood, these are all hallmarks of nearly every chronic immune-compromised illness. Except that for us, social distancing will never end. Our isolation will never end. We will never go back to work. This is our reality for the rest of our lives.
This is not the life I want to live. No one wants to live forced into a cage, denied the things that make life meaningful and enjoyable. But still, this IS my life right now. Until a cure can be found. I’d gladly take even a treatment. But the medical world has almost nothing to offer me or the millions and millions of others with ME. I cannot break this cage; I cannot pick the lock and let myself out to freedom. But I can scream inside it. I can shout and bang on the bars until someone notices; until enough people notice. And once they notice, they will start demanding freedom for us too.
And maybe, someday, I can actually leave this dirty, nasty, bug-infested prison and feel the sun on my face again before I die.
Shades of Blur, © Sarah Allegra. A self portrait about brain fog and living with ME.
I would like to leave you with this last thought in these times of pandemic. Covid-19 is a very serious and deadly threat and every possible action should be taken to heal those who have contracted it and to find a vaccine. But we are able to focus on more than one thing at a time. It’s entirely possible that many who have been afflicted by Covid will, with weakened immune systems, go on to develop ME or other health issues. The Millions Missing may grow substantially. But for those who have escaped its clutches and remain healthy, please… remember us. Your lives may go back to normal. You may go back to work, seeing your friends and enjoying life. But our quarantine will never end. Remember how frustrated you felt having to stay inside and not being able to do anything fun or meaningful? That’s our life, forever. If we can come together and work this quickly to devise testing, treatment and a vaccine for Covid-19, the same thing can be done for ME and other invisible illnesses. Don’t forget about us when you get your life back. We’re never getting ours back.
Image created by Original Art 4 ME: https://www.redbubble.com/people/originalart4me/shop
*[There are various theories and arguments about whether ME, CFS and fibromyalgia are all the same disease or different. You’ll find as many disparate opinions as there are sufferers. It is my personal belief that they’re probably all the same thing, or at least all very closely related. Some people are extremely militant about using the “correct” name; I find it more important to help people understand by using the name they’re most familiar with. I tend to use them all interchangeably depending on the situation and who I’m talking to, but if I had my druthers, I’d simply call it ME and be done with it.]
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Mythic Pictures 