About The Faces of Invisible Illness Project:
Faces of Invisible Illness is a journalistic project designed to visualize the invisible
elements of chronic, invisible illnesses. This project showcases a variety of different
chronic illnesses and chronic pain conditions. On the surface, simply looking at
someone, it’s not obvious that the person is suffering or trying to manage their health
conditions. They seem “normal”, “healthy”, and/or simply “don’t look sick”.
With chronic/invisible illness, sometimes, there are good days and sometimes there are
bad days. Sometimes there are flair ups or exacerbations.
Danielle’s goal is to document wide variety of chronic illnesses and conditions, all of which are
inviable. Danielle wants to highlight the true emotions of the struggles each person faces and
showcase the reality of these conditions, even if they appear “normal”. There are layers
of emotion in these images. Each image emotes the feelings of pain, sorrow, despair,
frustration, discontent, that each person suffers, underneath it all. Not everyone is open
about their health, but I wanted to capture the true essence and vulnerability of these
people.
This project is not only designed to help bring awareness and educate others about
invisible illness, but it’s also to help inspire other chronic illness and invisible illness
warriors out there. This is a celebration of strength and resilience. Life is hard to begin
with. Adding additional health complications and challenges makes it even harder. The
amount of strength, courage, resilience, grace, bravery and endurance battling a
chronic, invisible illness is harrowing.
These are your friends. These are your family. These are your neighbors. These are
your coworkers. These are your community members. These are fellow humans. These
are warriors.
Danielle hopes to educate all about these different conditions and illnesses, while providing a
glimpse into the daily challenges. Beyond this, she wants to highlight and emphasize the true emotion and feelings of what it’s like to suffer from specific conditions.
As an artist and journalist, Danielle wants to raise awareness, educate, enlighten, empower, and help give people a platform to share their stories and voice. She wants people to know they’re not alone, even when it seems that way sometimes.
Danielle, herself, is a chronic/invisible illness warrior. She has long been private about her health but now, through this project, she feels it’s her calling to help others raise their voice and share their stories.
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 Chronic/Invisible Illness Warrior, Alyssa Phillips.
The duality of appearing “normal” and what the eye sees
v. the raw reality of what you don’t and can’t always see.
(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?
“I have 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.”
Describe your experience with Idiopathic Intercranial Hypertension. 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.”
What types of treatments and therapies do you have to do each day?
“I take Lasix, which is a diuretic that helps regulate the excess spinal fluid in my head. I undergo routine spinal taps to drain the excess spinal fluid from my head. I routinely receive nerve block injections in my head and neck. Beyond this, I take preventative and abortive/rescue migraine medications such as Emgality, Ubreverly and other anti-inflammatory, non-opioid pain medications. Since none of these on-going medications truly control the pressure or pain, I also rely on more osteopathic treatments and therapies. These include osteopathic manipulations, acupressure, spineworx, neck brace, aromatherapy, ice packs upon ice packs, and more.”
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.”
For more information about IIH, please visit: https://ihrfoundation.org/