About The Faces of Invisible Illness Project:
The Faces of Invisible Illness is a photojournalistic and educational project designed to raise awareness for chronic illness and chronic pain conditions that are not always visible to the naked eye which is why the term “invisible illness” is used. The goal of the project is to make invisible illness visible through contrasting images of what the naked eye sees v. what the naked eye does not see. Just because someone’s chronic illness and pain is not visible to the naked eye and they “don’t look sick”, does not mean that they aren’t sick. They are sick and this project shares the stories and lived experiences of those suffering from and battling various invisible illnesses, some rare, and some without a cure or effective treatments. All conditions are pervasive, debilitating (chronically and/or dynamically), and take a tole on the lives of those suffering. The project also highlights health care disparities that exist in accessing healthcare, treatments, disability benefits, and the many barriers those living with chronic illness and pain face each day. For some, it can be the struggle of trying to find a doctor to take symptoms and pain seriously; and/or affording life-saving and/or sustaining medications, treatments, hospitalizations, surgeries, medical equipment, mobility aids etc. There are also many who struggle with hopelessness because there are no cures or effective treatments for some diseases and conditions. This project depicts these experiences with people who have bravely and voluntarily elected to share their stories. The people featured are your peers. Your friends. Your family. Your neighbors. Your coworkers. Your community members. Your fellow humans.
Danielle is an invisible/chronic illness warrior herself, and is passionate about healthcare advocacy in raising awareness for invisible illness, rare diseases, funding medical research for new treatments and cures, and advocating for affordable and equitable access to healthcare for all.
If you’re interested in sharing your story and participating in the Faces of Invisible Illness project, please reach out. Send Danielle a message here to start chatting.
Portraits of Invisible Illness Warrior, Alyssa Phillips.
(click to enlarge each individual image)
Pictured above is Alyssa Phillips, MBA, MS, a whimsical artist, jewelry craftsman, business owner, cat lady, and fashionista.
Here is a candid interview with Alyssa about her daily life living with a chronic/invisible illness.
What invisible chronic illness and/or chronic conditions do you suffer from?
1. Hypermobile Ehlers-Danlos Syndrome (hEDS) "Which is one of the 13 different types of Ehlers-Danlos Syndrome and it's a genetic connective tissue disorder that affects the entire body by causing various issues depending on the person. For me, some of the symptoms I experience are joint pain, sublocation of joints, cartilage pain in the rib cage, and slipping ribs to name a few things. There are also many comorbidities that come along with hEDs that I have listed below and that complicate my daily life even more. My comorbid chronic illness conditions include:
2. Idiopathic Intracranial Hypertension (IIH); it also is referred to as Pseudotumor Cerebri. In the simplest of terms, I have extra spinal fluid that builds up around my brain and increases cranial pressure for no reason. This leads to daily severe pain basically from the neck up. It affects my vision, my memory, depth perception, hearing, and more. The excess pressure around my brain makes my body think I have a size-able brain tumor. There is currently no cure for this rare disease.”
3. Neuropathic Postural Orthostatic Tachycardia Syndrome (Neuropathic POTS) "It's a subtype of POTS where there is damage or dysfunction to the small fiber nerves and those regulate blood vessel constriction in the limbs and abdomen and because of that it leads to reduced vagal constriction and blood pooling, rapid heart rate upon standing, and that can lead to passing out. It also causes extreme fatigue, brain fog, and small fiber neuropathy."
4. Mast Cell Activation Syndrome (MCAS) "It's a condition where mast cells, which are a type of white blood cell, release chemicals too often or in response to non-harmful triggers such as allergies, so your body thinks it's having an allergic reaction to something when it's not. Some symptoms can look like skin rashes, hives, shortness of breath or wheezing, allergy issues like runny nose or itching, fatigue, panic attacks, memory loss, brain fog, joint pain or swelling, generalized widespread pain, headaches, irregular heart rate, and treatment can require antihistamines and an epi-pen."
5. Tethered Cord Syndrome (TCS) "It's a neurological disorder where your spinal cord attaches to your tailbone and that limits the movement of your spinal cord and causes your spinal cord to stretch abnormally, and if left untreated, this can lead to neurological damage.
6. Gastroparesis "It's a condition that affects the stomach muscles and prevents proper stomach emptying, which causes stomach pain, extreme nausea, feeling full after a little food is eaten."
7. Ankylosing Spondylitis (AS) "Is a form of arthritis that occurs in the hips and spine. The start of my AS started with the fusing of my sacroiliac joints which are located at the base of the spine where the spine joins the pelvis."
8. Occipital and trigeminal neuralgia. "They are both a type of nerve pain that affect different areas of the head and the face. Trigeminal causes severe facial pain and occipital causes severe pain in the back of the head and neck."
Describe your experience with these conditions. How would you describe your pain?
“I have three different types of pains, which are not mutually exclusive. All of which are dependent on the pressure levels in my head. One of the pains is constant. Always there, by default, no matter what. It’s a dull ache, all over my head. From there the pain can vary, it can escalate depending on the day, and the amount of activity and movement I exert.
The next pain type is a throbbing pain. The throbbing is like heavy heartbeat of pain in my head. It can happen at any time without any rhyme or reason. Sometimes it can escalate from constant dull to throbbing for no reason, sometimes it can escalate because of too much exertion, or just happen in tandem without cause. Often, I have to stop and brace myself to keep my entire body still, in hopes that maybe the throbbing will lessen with hasted movement.
The third and worst type of pain is what I call “ice pick” pain. The ice pick pains are often added to the above mix of pains. These sharp episodes can just happen out of nowhere. Spirts of sharp pain, that feel like someone just walked by and stabbed me in the eye and temple area of my head with an ice pick. This intense pain is all consuming and can cause me to shutter, hold my head, and have me cradle it in my hands. In some cases, the pain can get so extreme and severe, it makes me vomit and wail uncontrollably, asking myself “why me”? Even in my worst hours, I know I have a support system, and that I can get through the extreme pain spirts.
Another noteworthy aspect of my pain is the atmospheric pressure in the environment around me. The atmospheric pressure directly affects my pressure and pain levels in your head.
I never know what the day will be like and what combination of pain types I will have, and to what severity they will be. Every day is a toss-up. I never know what the day will be like. Most days I ask myself…. Will I have to cancel plans? Will I be able to get anything done? Will I be able to fill customer orders that day? Will I be able to do the dishes? Will I be able to make dinner? Will I be reliable that day? Will I have to back out of something that day?
The unpredictability of the severity of my pressure and pains makes it difficult to plan things and ultimately impacts the flow of my life. My pain is further complicated by the comorbidities listed above, some of the symptoms of the comorbidities are extreme fatigue which feels like every muscle in my body is exhausted and weak and it feels almost impossible to get out of bed; brain fog which feels like mental exhaustion and like I can't concentrate, I lose my train of thought, the right words don't come out and I'm slow to process information; constant nausea; cartilage pain that feels sharp and is experienced frequently in my sternum; joint pain that feels like a dull ache across all my joints which makes movement painful; fainting and dizzy spells; allergic reactions to things I've never been allergic to before which can be rashes, shortness of breath, and tightness in my throat; tremors; and trouble sleeping from all of the wide-spread severe pain.
What types of treatments and therapies do you have to do each day?
“For the idiopathic intracranial hypertension (IIH) I take Lasix, which is a diuretic that helps regulate the excess spinal fluid in my head. In the past, I've tried routine spinal taps to drain the excess spinal fluid from my head, I've also tried nerve block injections in my head and neck, along with preventive and abortive/rescue migraine medications such as Emgality, Ubreverly and other anti-inflammatory, non-opioid pain medications and have had no luck with them. Since none of these treatments were effective in controlling the pressure or pain, I have relied on osteopathic treatments and therapies such as osteopathic manipulations, acupressure, spineworx, neck brace, ice packs upon ice packs, and more.
In March 2024, I got spine surgery to release my tethered cord. My tethered cord was luckily caught early before any mobility in my legs deteriorated. I'm lucky in that respect. It helped a myriad of issues I had from the waist down.
I have routine physical therapy exercises that I do to help manage my hEDs. I also take medications for my neuropathic POTS and histamines MCAS. For gastroparesis it's lifestyle changes like eating smaller meals, eating more frequently, walking after you eat, not laying down for two hours after you eat.
I haven't found any treatments effective for my IIH, occipital and trigeminal neuralgia yet.”
What’s a typical day look like for you?
“Each day I normally wake up around 2 a.m. to take more pain medication, switch out the ice packs that I sleep with, and then try and lay back down and get a little bit more sleep, if I can. Somedays I can, some days I strike out (It all depends on the pain levels). I usually get out of bed around 7 a.m., take more of my medications, and get a new ice pack. I get set up on the couch where I have a "nest" as my husband calls it. I have a bunch of pillows to support my head and neck, heated blanket, tissues, medicines, and a variety of homeopathic therapies I cycle through.
My days vary greatly as in how much I can accomplish. On my worst days I can end up at the ER. Though it’s very rare that I go there since there is not much they can do for me, since I don’t take opioids because they don’t even help.
I try to eat some breakfast, but eating is a slow process for me. I try to graze throughout the day because I am rarely hungry because of the pain and often nauseous. My pain levels dictate my day. Somedays I try and do a few hours of crafting at my home-studio, where I make jewelry for customers. After a few hours of exertion, the pain usually starts to build, and I need to rest. Somedays I can get the pain down enough to create for a few hours, while other days the pain renders me frozen. To sum it up. my days are scheduled around ample rest and recover time so I can complete daily tasks—if the pain allows.”
What do you wish people knew about your health and invisible illness?
“I am in pain 24/7, even when smiling and having fun. When I do fun outings and hang with friends there is a recovery time after because I do my best to hide the pain from those around me. It’s a real adjustment and struggle to feel like enough because I can't live my life like "normal people". I need to depend on other more than what's normal makes me feel like a burden to those I care about.
Dealing with chronic pain, especially invisible illnesses really take a toll on your mental health. It’s hard to feel like a full person, an actual adult when you rely so much on others and can't do things in the ways the world and society expects you to. I am extremely hard on myself because of this, though I am working on being kinder to myself; it's a difficult habit to retrain.
There are no cures for any of my conditions and it's a hard pill to swallow because I have to re-adjust my life to work around my conditions, not the other-way-around, and it's difficult when your body holds you back from doing things that others might be able to do. "
More information about these debilitating conditions can be found here:
https://www.ehlers-danlos.com/
https://thedysautonomiaproject.org/dysautonomia/
https://www.mastcellaction.org/
https://gutscharity.org.uk/advice-and-information/conditions/gastroparesis/
https://spondylitis.org/about-spondylitis/overview-of-spondyloarthritis/ankylosing-spondylitis/