Arts/Literature

ArtSunday: "trapped in our bodies" – coping with Chronic Fatigue Syndrome through photography

by Sarah Allegra

There are an unusually high number of suicides in those with Chronic Fatigue, and I can understand why. Combine the physical problems with the mental ones, plus society’s blaming you for your own disease and you have a perfect storm of hopelessness. Sometimes I think of Chronic Fatigue as nature’s form of water torture. Anyone can endure a little while of it; a day, a week, but as it drags into months and years… it can become unbearable.

At some point in either my late teens or early twenties, I developed Chronic Fatigue Syndrome. It was an insidious slide down into the disease. It crept up gradually, and I was in denial for years before I finally admitted I had it. I can only remember one time in recent memory that I didn’t feel the oppressive burden of dragging, deadweight fatigue. At the beginning of 2011, I had a nasty, infected cat bite which required antibiotics and steroids to treat. For three days on the steroids, I felt normal. I felt good. And then it slipped away again.

While calling the illness Chronic Fatigue is certainly a step up from the “yuppie flu,” as it used to be known, it really doesn’t capture the essence of it. Calling it “Chronic Fatigue” brings to mind fragile,Victorian ladies with too-tightly-laced corsets who need to have constant access to fainting couches because they are just so delicate. The reality is that we’re constantly being crushed under the burden of our tiredness. There is no escape from it. There is no respite. You are just bone-weary, soul-breakingly exhausted every day. Every day. Every day.

Chronic Fatigue is an illness which is still mostly not understood, either by the medical community or by the population in general. Currently, the best guess seems to be that it is an auto immune disorder, which would make sense to me from how I have experienced it. My body is attacking itself in a continual state of civil war. My immune system is compromised, and my body damages quickly and takes far longer to heal than normal. My muscles get strained over things that seem absurd, like driving my car, or cleaning the toilet. Activities which should not result in months-long aching muscles which refuse to ever quite heal. In a bitter irony, though I go through every day continually exhausted, sleep remains elusive. I go to bed at night and lay awake for hours, despite every pill, supplement and treatment I have tried.

We are trapped in our bodies, longing to be free and partake in the activities we once loved. I have missed so many dinners, parties, and celebrations. I have lost jobs and friendships and opportunities because of this illness. I am forced to live an exceptionally quiet life, and ration out my remaining energy as frugally as Scrooge. No energy can be wasted; I have none to spare.

Yet, as bleak as the future often looks for us, there are faint glimmers of hope. The medical community is slowly, achingly slowly, coming around to the idea that this is a real, physical condition. There are trials being done, mostly in countries outside of the US, where they are a bit more open-minded about what constitutes a disease, and some have shown positive results. I don’t know if any kind of treatment, let alone a cure, will be found in my lifetime. But I am cautiously, guardedly hopeful about it. Because the only other option is to completely give up hope and become another statistic about the high rate of suicides in Chronic Fatigue sufferers. I am not willing to do that.

In some ways, there seems to be very little I can do to help myself or the other sufferers. But what I can do is create art. It is a small thing, and it may sound impossibly lacking in usefulness, but I have found that it is the greatest weapon I possess. That’s why I started my photo series on Chronic Fatigue, called “Enchanted Sleep.” I wanted not only to document what we with Chronic Fatigue feel and go through, I wanted to do it in a way that healthy people could relate to. I wanted to validate our experiences and reflect them in a visceral way to those who had never felt them.

The series has been a challenge. I am only using models for it who have either Chronic Fatigue, or our sister disease, Fibromyalgia. That, of course, adds in difficulties of not only finding models with the illnesses, but finding times when both they and I are feeling well enough to go out and take some photos. Many of the images in this series are self portraits, not only because of the convenience of using myself as a model, but because it gives me a chance to channel my anger and sadness and frustration into something positive. Something that might help another sufferer. Something that might finally make it click for someone who has never understood before.

In the end, it comes down to hope. While I try to busy my mind and not think much about medical treatments or cures, I cannot not hope for them. Even if I bury the desire, it is there; a quiet, small ember in the core of my being. If I had no hope, there would be no art, no series. I have to hope that my photos will not only make the sufferers feel validated and understood, but increase awareness in society in general. I have to hope that someday, the population will not accuse us of not trying hard enough. I have to hope that the medical community will not misdiagnose me as depressed and anxious, and try and sweep me under the collective rug. I have to hope that some day I will feel better. I have to hope that eventually, we will all be made well again.

These are my dreams. And while sleep may forever remain an elusive, fickle beast, unwilling to be tamed, I always have my dreams. No sickness, no doctor, no day so steeped in weariness that I break down and sob, can take them away. They are mine to shelter and share. And I hope they have touched you too.

 

Sarah Allegra is a Los Angeles-based fine art photographer specializing in conceptual and self-portrait imagery. A self-taught photographer, she has also indulged in other forms of artistic expression – from painting to songwriting – since she could first hold a crayon. Her photography is darkly mysterious, deeply symbolic and other-worldly. Drawing inspiration from music, books, fairy tales and her own personal demons, she strives to tell compelling stories and express real emotions through her work.

Her work can be seen at her site, sarahallegra.com

33 replies »

  1. Thanks for this, Sarah.

    In an odd way, I kind of envy you. I have a couple incurable conditions of my own, and one of them, my doctor has explained, is very similar to another disease that has an extremely high suicide rate. While things have actually been better of late, I think my working assumption for the past couple of years has been that eventually the one condition will kill me or the other will require me to do it myself. Even when you’re winning that battle, even when you decide that is not an acceptable way to go (or even think) it’s always in your head.

    You can work it out, at least a little, through your photography. I’m a writer, and I have no real idea how I would go about doing the same. I assume that somewhere out there is a combination of words and phrases that would articulate what I’m feeling at a given moment, but I’m damned if I know what that combination is. It’s like when I have this idea in my head that is perfect for a poem, but I can’t find the words to communicate the picture, the concept.

    I’m sure you’d probably trade in your photography skills in a second to be rid of the CFS, but since you can’t, I’m happy that you have some tools that help you express some of what you’re confronting.

    Again, thanks for sharing this with our readers, and best of luck. I hope they find a cure for you….

  2. I would urge anyone who is suffering from CFS to find a Lyme-literate doctor and be tested. CFS often has an undetectable underlying cause that IS physiological. There are LL doctors who are using a protocol of herbs and nutrients to successfully treat not only the underlying causes of fatigue caused by pathogens like Lyme, but these herbs successfully treat the symptoms as well.

  3. Merely curious, but why no male models in your artwork? Was this deliberately done or are we seeing a symptom (as it were) of an illness that’s simply not accepted for men? Rest assured I’m not calling you a misandrist but are there any studies showing if CFS (or fibromyalgia) may be more genetically predisposed to affecting women or if men are less likely to be diagnosed with the disease? I have noticed there seem to be a lot of commercials now running for “testosterone replacement” drugs (or, at least, drugs that simulate the effects of testosterone) and, when you mentioned that the days you used steroids, you felt better–more like your “normal” self. Do men suffering from CFS simply get diagnosed with “low t” and get testosterone patches and other similar treatments while women just need to “get a new hairdo”*?

    *Courtesy of “The Golden Girls.” When Dorothy goes to see one doctor about her suffering from continual flu-like symptoms, he largely dismisses her as she’s getting older and she should do something like get a new hairdo. According to the doctor, when his wife was feeling “down,” she simply got her hair done and “it worked wonders” for her. After Dorothy sees another doctor who thinks she’s suffering from a “recently-discovered” (this was the late 80s/early 90s) ailment, she’s dining with the rest of the giirls but Dorothy (IMS) bemoans the name of Chronic Fatigue Syndrome since it doesn’t sound like something serious. Rose suggests “Zbornak Syndrome” but Blanche says that sounds like a chess move; she suggests “Devereaux’s Disease.”

  4. Simply AMAZING!!! I wish I lived closer—-I have fibromyalgia and would LOVE to take part in what your doing! These illnesses need way more attention in the news than they are getting. There really needs to be more research and funding. I run a Fibromyalgia/ CFS webpage on facebook with another woman. It might be small but the more out there—the better I say! ABSOLUTELY LOVE your work! Its STUNNING and BEAUTIFUL!!! Keep it up. Where else can I see these pictures?

  5. Hi Sarah,
    One of the books I found very helpful for me dealing with my fatigue from Hep C and cancer is “How to be sick – A Buddhist Inspired Guide for the Chronically Ill” by Toni Bernhard. Dealing with chronic illness is a mental marathon. Studying and practicing mindfulness has also helped. And ART. Always ART.
    We mourn and grieve the possibilities our illnesses have taken away and open to the new possibilities our illnesses have given us.

  6. Cudos to you Sarah; for both finding a way to cope with CFS and enlighten society at the same time. Either is difficult, and you have the courage to do both.
    You are on the right track with your thoughts on this being an immune disorder. Dr Nancy Klimas has been working with CFS patients in Miami, FL for many years and has recently opened her own clinic. The clinic is assisting in some of the testing being done in Norway with CFS patients and Rituxan (used to suppress B cells in the immune system). As a male suffering from CFS I have been tested for “low T” , thyroid, etc. The only tests that I have red -flagged have all been immune related.
    You are right, sleep is elusive, and your portrayal is fascinating. Episodes of sleep paralysis and associated halucinations that are the result of dreaming while in the twilight of sleep have been with me throughout my CFS. Medical research has shown that the immune system is on a circadian rhythm that has a sharp peak in the first few hours of the sleep cycle. Not only do the spleen and lymph nodes have this internal clock, but each individual cell has a sharp response to infection in this time period. This is why even with something like a cold virus, people often feel the worst of it around bedtime.

  7. Sam- Thank you again for your help and support! You know, I hadn’t thought about it, but I would have a REALLY tough time choosing, if I had to, between being well and photography. Photography has become such an important, integral part of my life, I’m not sure I could let go of it, even to feel better. But, since I’ll likely never have to actually make that choice, it’s all hypothetical. I hope you are able to find some way to work through what you deal with through art. Perhaps writing isn’t the way to go for you, in this particular case, though you are a wonderful writer. In any event, I hope we both wake up one day no longer needing to deal with these issues at all 🙂

    Anne, yes, finding qualified doctors is paramount, and something I’ve had a great deal of difficulty with. I know Lyme and CFS have a lot of overlapping symptoms, and Lyme can be tricky to nail down, so it’s always worth looking more into.

    Joseph, the reason I haven’t used any male models in this project is simply that I don’t personally know any men nearby who have CFS. I do use male models in my work, but for this series, I’m only using models who have either CFS of fibro, and I just haven’t yet come across any men with it. You’re right, that it is more frequently diagnosed in women than men, and you raise some interesting questions as to why that might be. What an interesting story about the Golden Girls! I had no idea 🙂 I think we all need to group together and come up with a more suitable name!

    Marcy, I wish you could participate too! I’d love to get the link to your FB page so I could join it. If there’s anything I can do to help with your page, using photos, etc, I’d be more than happy to! Feel free to send me an email (sarah@sarahallegra.com) if you’d like to talk about it. And also, you can see much more of my work at my site: sarahallegra.com Thank you!

    Carrie, Thank you for the book suggestion! I’ll be looking it up on Amazon. I’m continually amazed at the things art has the power to heal, even though I’ve been involved in art all my life 🙂

    Tricia, Thank you! I’m so glad you liked it.

    John, Thank you! I’m sorry that you also have to deal with the same problems, but I’m glad the article rang true for you. Interesting info about circadian rhythm! Hopefully some day we’ll all get some answers and sleep sweetly every night. 🙂

    • I think the thing that has to be frustrating for people is that our medical technology is so advanced that we sort of expect that there’s a diagnosis and a cure for everything. When the doctor explaining my inner ear condition to me said “there’s no cure” part of me was sort of stunned. Then she said “we can’t do anything about the symptoms, either” and I felt like I was living in the Middle Ages. It just doesn’t seem fair, somehow.

  8. There’s already a better name for it: myalgic encephalomyelitis (ME). Story I’ve heard is that they changed it to “chronic fatigue syndrome” after the outbreak in Tahoe, when the CDC (and insurance companies) got involved.

  9. This is a brilliant as an out let for your frustration and anger. I’ve just started blogging about my mystery disease and I’ve found that it’s a great way to relieve all the emotions that can build up inside.
    Just out of curiosity have you had you blood clotting factors tested? I’ve been trying to find out what my illness is for the past four years and my primary health care provider was putting it down to CFS however, I’ve had just come out of hospital after being rushed in with blood clots in my leg and lungs. After a series of tests they are now looking for a blood disease like Hughes Syndrome or a chronic inflammatory disease akin to rheumatoid arthritis. Just some thoughts on some underlying causes.
    Once again, great post!

  10. Lisa, Thank you! So glad you liked 🙂

    Sam, YES. That is indeed a big issue for me. Even if it’s silly, you feel cheated somehow that modern medicine can’t help you.

    Susan, I have heard of calling it ME, but I think it’s slow to catch on because of it’s intimidating and difficult-to-pronounce syllables. But perhaps we should all start using it anyway 🙂

    Bobby, I’m glad art has been such an outlet for you! I don’t remember if I’ve had my blood clotting factors specifically tested, but I can’t remember the question ever being brought up, so I would imagine that my blood seems to clot at the normal rate. I hope your doctors figure out what’s ailing you and are able to fix it!

  11. As a fellow sufferer, I could fully understand your message. Your pictures are breathtakingly wonderful! Take a look at the website for the National CFIDS Foundation. They’re all volunteer and have made some great discoveries. I’ll be sharing your words with others.

    Vickee

  12. Thank you for posting this. I have been suffering with CFS for 2.5 years now. Your experience pretty much runs parallel to mine. I really like your pictures, especially the one with the sword and scales – sums up the illness perfectly!

  13. Vickee, Great, thank you for the info! I will definitely be looking them up. I’m sorry you understand from personal experience, but glad it rang true for you.

    Batty Nora, Again, I’m sorry you have gone through the trials of CFS yourself, but it is reassuring every time a fellow sufferer tells me they connect with what I do. Thank you very much!

  14. Sarah,

    Lovely and expressive work. Your words and photos have done an great job of communicating the struggle of those with CFS. I have decided to not hope in western medicine for a cure. It seems that whole community is focused on addressing symptoms only, as that promotes more pharmaceutical sales. If there was a cure we would eventually not need prescriptions.

    I keep praying, hoping and researching for cures and treatment alternatively. Having some herbs for my thyroid is helping a bit.

    Love and Hugs

  15. Hi – I have had M.E./CFS since early 1975, & for many years had the sleep difficulties you mentioned. What has helped was drinking a cup of Chamomile Tea (with just a dip of a peppermint teabag, to help the flavour) – I only had to do it for a while, but it must have ‘retrained’ me to be able to get to sleep. Still have all the other problems, but it may be worth a try for you, too.. 🙂

  16. Hi Naomi, Thank you very much! It really is gratifying to hear other CFS people telling me they can relate to work.

    Nanette, yes, I very much agree with you. Although I cannot quite make myself stop hoping, I do think western medicine has little to offer, and may not really be that interested in actually curing us. As you said, then we wouldn’t be dependent on their medications anymore. I’m glad to hear the herbs you’ve been taken have helped; do you mind if I ask what they are? You can email me (sarah@sarahallegra.com) if you’d like to talk herbs 🙂

    Rob, Interesting! I do like tea, I’ll have to try that. Thanks!

  17. bone-weary, soul-breakingly exhausted- you nailed it on the head there! My back muscles seize up when hanging laundry away! I have had CFS for almost 4 yrs and it is baffling to me! I do have a +EBV though they say that is a controverisal cause- but I can attest that it IS a cause…

  18. you nailed it on the head when you said “bone-weary, soul- breakingly exhausted”!! My back muscles seize up when hanging up laundry! I never feel rested going on 4 yrs now… so hard with a 4 yr old child!

  19. Your article is only surpassed by your photos. The article is a wonderfully educational piece for those non sufferers…better yet, the non believers. For us, the knowers, the photos are thought provoking and a graphical representation of the truth.
    I fear though. I’m not sure which way my thoughts are directed through your photography. Some are bright and contain the hope for that flittering, elusive light that may be ahead. Others are dark and show the ugliness that we, the informed only know. I, myself, look longingly at the pile of pill bottles on the floor and see the light through those.
    I too would like Naomi to share the information on the herbs. At this point I would give up, not only my photography, but all I own for peace at last.

  20. Jackie, I can’t imagine how draining having a child must be! Sending you restful thoughts 🙂

    Thank you, Dave! There definitely is a mixture of hope and sadness in my photos, since they are both emotions I fluctuate between, sometimes on a daily basis. Hope has to win though, or else you have nothing to keep you going. I hope we all find relief from this disease.

  21. beautiful pictures.i have had fibromyalgia for 12 years now and some days are harder than most.my girls and hubby keep me going and i have a part-time job that helps.my hands and legs are the worst and now have to get cortisone shots for my hip every 8 months or i can’t walk and yes the fatigue is getting really bad but i hope like you that there will be if not a cure at least some thing that will provide some relief.

  22. I can relate to this and my deepest sympathies go out to all with the conditions mentioned. I was diagnosed with CFS/ME a few years ago. I am a fine artist hoping to graduate this summer. Currently I am trying to express any feelings towards CFS/ME through my art work. The satisfaction of still being able to create is the self fulfillment I hold on to.

    Lovely work, keep hold of hope!

  23. These images are beautiful and capture some of how it feels, for me, to have CFS. They’re uplifting in that they suggest possibilities outside of what the body can do. x

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