What is an invisible illness?
Personally, I don’t consider myself sick or even chronically ill, but I do feel like I have an invisible condition (actually conditions). I’m pretty sure that there are a number of us with EDS who do not identify as being “sick” and honestly, I don’t want to. I do not care to prove my suffering to others, nor do I care to have people believe me. I started talking about EDS and my personal journey more and more, because I saw how much misunderstanding there was in the medical community about Ehlers-Danlos syndrome and the conditions related to it. And I saw how many people were suffering.
I am human and I do care that people, especially those I’m closest to, have some sort of understanding and empathy. And I really care that people outside of the chronic/invisible illness communities, understand that those with Ehlers-Danlos syndrome and other chronic, invisible illnesses MUST be taken seriously and not dismissed. Just because most symptoms can’t be seen, doest not mean that they are not real or severe enough to impact daily life.
There are times when I do have to stop and say, “Ok, I’m done. I need a reset.” Thankfully, it doesn’t happen that often. When it does, it’s usually when I’ve been burning both ends of the candle and my body shows me signs that it’s had too much, despite my best efforts to ignore it.
Over the years I’ve learned to become incredibly self-aware or as my sister would say, “You are just so in tune with your body.” I think that was her way of nicely saying that I pay attention too much to the needs, signs and subtle changes in my body; however, it’s always served me well and there’s a definite line between obsessing over every little thing and actually making yourself worse, versus knowing how to take care of yourself well.
Ignoring issues or waiting too long, especially if you are not on the offense and trying to prevent health issues, can cause devastating ramifications. And so many times, it’s just too late to do anything. I could never look my kids in the eyes, knowing that I was diagnosed with something terminal, or had a terrible complication due to EDS, and had ignored the signs of potential issues — all because I was too proud to admit what was really going on. If life-threatening illnesses or complication do arise, I want to ensure that I’ve done everything in my power to keep myself as strong and healthy as possible, in order to help prepare my body to fight like hell.
So, if I do not consider myself sick or ill, what do I think of all these different chronic, invisible diagnoses that I have? I think of them similar to my fair skin — something I was born with, something I can’t change, but something I can do various things to live well, strong and healthy with. I can also control my attitude – it is what it is.
Why get upset at something you can’t change?
Getting upset over something you cannot change is wasted energy in my opinion. I do recognize that all these various diagnoses are invisible, similar to many different secrets that you hold tight inside. For me, living with various invisible conditions is a game to see how good I can hide them. I prefer to show strength, reliance and perseverance on the outside, versus constantly feeling like I have to prove what I know are several true diagnoses, all caused by one underlying condition, on the inside.
In the world that I live and work in, conditions like Ehlers-Danlos Syndromes are considered “invisible” because the signs and symptoms of these conditions are not usually noticeable. An invisible illness is defined as: “invisible disabilities are disabilities that are not immediately apparent. Some people with visual or auditory disabilities, who do not wear glasses or hearing aids, or discreet hearing aids, may not be obviously disabled. Some people who have vision loss may wear contacts. A sitting disability is another category of invisible impairments; sitting problems are usually caused by chronic back pain. Those with joint problems or chronic pain may not use mobility aids on some days, or at all. Most people with RSI move in a ‘normal’ and inconspicuous way, and are even encouraged by the medical community to be as active as possible, including playing sports; yet those patients can have dramatic limitations in how much they can type, write or how long they can hold a phone or other objects in their hands.”
Additionally, invisible illnesses are described as “chronic illnesses and conditions that significantly impair normal activities of daily living. In the United States, 96% of people with chronic medical conditions show no outward signs of their illness, and 10% experience symptoms that are considered disabling.”
With invisible illnesses, the disability is many times not noticeable. Symptoms are hard to explain, even harder to understand. Many of these conditions are way more common that previously believed. Often, people with chronic, invisible conditions are judged, ridiculed, dismissed, and not taken seriously because their symptoms cannot be seen, and the majority “look” perfectly fine.
Ehlers-Danlos Syndrome (EDS) is considered an invisible illness – a condition that is not obvious from the outside, despite so many facing a Pandora’s box of complications on the inside.
EDS is just one invisible illness, others are Lupus, RA, Lyme Disease, PCOS, Fibromyalgia, thyroid and endocrine conditions, Chronic Fatigue Syndrome (CFS), conditions that cause Chronic Pelvic Pain (CPP) & so many more.
No one has the right to judge how much someone suffers, solely based on how much that person is able to do or not do, if support aides like a wheelchair or braces are used, or how much that person openly discusses their suffering. Most importantly, no one can judge how much someone suffers based only on how they look. Looks can be incredibly deceiving.
The truth is that we really have no idea what battle someone else is fighting, because we have never walked in their shoes. However, what we can do is offer unconditional love, support and good distractions. People with invisible illnesses, want to be heard, understood and feel normal.
Here’s how to show your support this week:
The founder of Invisible Illness Week, Lisa, asked me if I would participate. I am more than honored and excited. I will be speaking (virtually) on “Fighting for a good attitude” on Wednesday, September 30th at 11am PST/2pm EST.
The discussion/chat will take place on the Invisible Illness Week FB page.
There’s also a 2015 Photo Campaign! Help us share the reality of all the little things that are each day of living with illness. See instructions and details & how you can join in: Invisible Illness Week 2015 Photo Instructions
Invisible Illness Week Resources:
- Invisible Illness or chronic illness? written by Lisa of Invisible Illness Week via Huffington post
- What to do when you feel invisible by Deepak Chopra
- 6 things people facing serious illnesses would rather hear you say
- 22 Secrets of people who are waiting for a diagnosis
- How do you deal with relatives who do not understand your chronic illness?
- Invisible Illness: When Others Can’t See Your Pain