Thursday, December 4, 2014

The Faces of Invisible Illness


Invisible illness is everywhere and you don't even know it. People with an invisible illness look normal on the outside, but in the inside they're hurting and dying. No amount of help from the doctor seems to help, there are very few or no medications to help what's happening, and doctors don't believe what's being told to them because they can't see it. Family and friends think you're faking or over exaggerating what you're experiencing and people couldn't phathom why a healthy looking person would need to stay in bed all day. But nobody SEES what you're experiencing!

While we may not have wheelchairs, braces, oxygen tanks, or major visible ailments, we have other secrets that we hide from people very well...malnutrition...dehydration...vitamin deficiency...nerve damage...cysts...chronic pain...vomiting...skin rashes...and so muh more. Sometimes people wonder why a person doesn't divulge their invisible illness to others. It's because we so often hear, "well, it could be worse", "you don't look sick", "maybe you should try these herbs. I bet you'd get better then!" But those words hurt. We know it's coming from a loving place, but it's not helpful. Trust me, we've tried everything! Nobody would ever dream of saying those things to someone with ALS, MS, or to someone confined in a wheelchair; but someone with an unknown, unseen illness is somehow fair game. 

I asked some of my invisible illness friends what they would like healthy people to know about livin life with an invisible illness. The vast majority of them want people to know that there are no simple fixes or no fixes at all for their illnesses. "Sometimes battles of invisible illness can't be won. Meds won't just magically make us better," Madison says. Anna agrees by adding, "the medicines I am on don't "fix" me. They just make life slightly bearable." So often we feel burdensome to those around us and we don't want to bring people down, so we plaster on a happy face, even if it's to our detriment. "We are more likely to fake being well then fake being sick. Even in the hospital I tend to act less sick of I have visitors," explains Tasha. But, at the end of the day, just know that we're doing everything that we can! "I've been dealing with this [illness] for a lot longer than anyone knows, including myself...That I don't WANT to obsess over my illness...that I'm doing my best," April advises. 

It's very well known that October is Breast Cancer Awareness Month--so we paint everything pink. We know that December 1st is World AIDS Day--so we paint everything red. We know that November is No Shave November--so the whole world becomes a hairier place. And we've all shed a tear over a Jerry Lewis Telethon--or two. But did you know that August is Gastroparesis Awareness Month? Or that August is Dysautonomia Awareness Month? Or that Invisible Illness has an Awareness Week (September 8-14)?!

Today I am going to help you put some faces and names to some illnesses that you may have never known existed. I encourage you--GREATLY--to look them up and educate yourself about them. 

This is Zoe. She has Lyme Disease, chronic migraines, chronic nausea, and undiagnosed stuff. The picture is 2 years old. She says "I was 110lbs in this picture and am 5'9", so I'm pretty tall. It was painful being this skinny. I have since gained some weight, but still battle with nausea and chronic nausea and migraines."

This is Tara. She has Gastroparesis, migraines, nerve pain (I have a metal plate and screws in my neck) the surgery didn't help much, PCOS (polycystic ovarian syndrome), severe depression disorder (MDD), anxiety, antisocial disorder, and am a recovering self-harmer. "I've been a self-garner since I was 12 years old and I am now 31 years old. I've decided that I no longer am going to let that control my life. I am 110+ days clean."

This is Emma. I have sarcoidosis. I've had three lung surgeries to remove masses from my lungs. I also have Gastroparesis, IBS, GERD, fibromyalgia, and spinal injuries from a previous abusive relationship. 

Chanel (age 23). I battle multiple illnesses though I look like your average healthy young woman. I have an autoimmune disease known as MCTD, comprised of of many seperate conditions: systemic lupus, systemic scleroderma, polymositis, dermatomysitis, and Sjgorens. As a result of these debilitating conditions, I am dependent on a feeding tube for survival. This disease had prompted many secondary conditions, including severe Raynauds, Malabsorption Syndrome, Gastroparesis, Dysautonomia, severe GERD, and many other illnesses that riddle my body, though they are not visible to the average bystander. I am in an invisible war with my body every second of every day. 

Gastroparesis, IBS, neuropathy, GERD, chronic migraines, chronic vertigo, possible POTS, bilateral subluxating patellas (really, I think I have hyper mobility issues). 





 





No comments:

Post a Comment