Living With An “Invisible” Illness
Maybe you saw Ste Walker’s viral “rant” on Facebook last week. If not, here’s the link: Click Here
Ste Walker isn’t a celebrity; isn’t a professional or college athlete; in fact – I have no idea who he is or what he does for a living. What I do know about Ste is that he is incredibly brave and candid in opening up about his “invisible” disease.
While Ste appears to be an attractive male in his mid-twenties – his Facebook post addresses his “invisible” conditions that he experiences through Crohn’s Disease. These conditions, in his words, include:
- “I have a Hickman line, which is a line that comes out on my chest and rests in my heart. This is what is used to feed me on something called TPN as my stomach doesn’t work correctly.”
- “I have a ryhlls tube down my nose and into my stomach to help drain it, because my stomach doesn’t empty like a normal persons does.”
- “I have a scar that runs from the centre of my chest to the top of my pubic bone which is where I’ve been opened up 3 times in the last 2 years for major life saving surgeries.”
- “I have an ileostomy, or stoma as they are more commonly known, this is a section of small bowel that comes out of my abdomen which I then attach a stoma bag on to, to collect poo because inside my bowels it’s full of crohn’s disease, ulcers, strictures, fistulas, narrow sections, tumours etc.”
And the list goes on, including symptoms that are not just physical problems that he contends with everyday:
- “It’s not just these physical conditions I have to deal with and fight everyday, there is also a mental battle raging inside me all the time, not being able to eat a meal in 2 years, or only been at home for 4 weeks in the last 18 months, being away from my family and friends, seeing what my illness does to them has a massive effect on my mental state of mind.
Ste doesn’t post about his hardships looking for sympathy, but rather to express himself after being judged for parking in a disabled spot and using a handicap bathroom. He says, “just because I look normal and speak normal, that doesn’t mean I don’t have a major disability.”
And he does.
I understand Ste’s conditions first-hand:
I was also diagnosed with Crohn’s disease when I was sixteen. I know the looks I got from other students after dozing off in class, after spending the entire night awake, sick to my stomach and in tremendous pain. I remember talking to the school social workers about skipping lunch or throwing out my meals, untouched. I recall curling up on the floor of my bedroom in the mornings – overly exhausted from simple tasks like making the bed or blow drying my hair. The anxiety of more doctors appointments and blood samples, watching the scale drop, missing more school and seeing my parents worry. And although my symptoms became much more visible: losing hair, withering down to 79 pounds, yellow nails and dark circles under my eyes – I remember being questioned by those who wondered if I was just seeking attention.
As a cheerleading captain, theater performer and honor roll student – those who didn’t know me didn’t know what was going through; why I needed extra sick days, unlimited bathroom privileges, and extra water breaks during cheer practice.
While neither Ste nor I may not look “disabled” at a glance – we want people to know that not all illnesses are obvious to strangers.
Much like Crohn’s, addiction is often an “invisible” disease.
Many of the symptoms associated with addiction aren’t always clear to the naked eye, including:
- Loss of interest: What was important at one time to an individual in active addiction often goes neglected. Whether it be a relationship, a career, friends, or hobbies – all other interest take a back seat to obtaining drugs or alcohol.
- Depression: The use of drugs such as alcohol or benzos slow the central nervous system, causing isolation, fatigue, sadness. This accompanies feelings of shame, guilt, worthlessness and helplessness.
- High blood pressure
- Pancreas damage
- Liver damage
- Nerve damage
- Brain damage
It’s the conditions that don’t meet the eye that other people don’t necessarily understand – and then stems the remarks of disbelief:
“You look fine to me!” or “Come on, just have one drink – just one won’t hurt you!”
According to the Invisible Disabilities Association, it’s estimated that more than 125 million Americans have at least one chronic condition, and the biggest grievance those with chronic conditions have – is that their loved ones often do not believe what they are going through is real, because they “look fine.” And many of those with chronic conditions try to hide their pain and struggles – wanting nothing more than to gain complete control of their lives without limitations of their illnesses. The fear of stigma often means that these individuals prefer not to talk about their illnesses.
People with invisible illnesses such as addiction are often blamed, mistreated and judged. But how can we expect people with chronic illnesses to heal if others don’t want to acknowledge the illness? Society needs to start by recognizing and understanding invisible illnesses like addiction to drugs or alcohol are like any other conditions that affect various parts of the body. Until we are able to do that – those with addiction and other invisible illnesses will continue to be stigmatized.
Ending the stigma starts by sharing personal experience with illnesses – reaching out and building bridges to those around us; extending a hand to others with the illness, and opening up to those who may not yet understand. Addiction and chronic illnesses can make a sufferer feel isolated and alone, but there is healing in sharing, and freedom in telling the truth. Without awareness, there is little acceptance – but by opening up about your addiction, you’ll find more support than you’d believe.