You didn’t cause it. You can’t cure it. You can’t avoid it. You can’t ignore it. You can’t control it. You try to manage it while concealing it from the “normal world”.
Cystic Fibrosis (CF) is often called the invisible disease. Invisible illnesses are conditions patients have that are not obvious when looking at them. People with invisible illnesses face a lot of prejudices. Accused of faking, lying or exaggerating they are often misunderstood.
“Just because you cannot see a person’s illness doesn’t mean they don’t have one. Someone may look “OK” when they really are not. Invisible illnesses often have no cure with patients having to take medication for the rest of their lives to help control and manage their symptoms.”
Take a look at me for instance, coming from an outsider’s point of view. If you saw me walking down the street:
He was walking with a group of friends when I spied him. I noticed him immediately because of his short stature. At first, I thought what is this young boy doing hanging out with these older kids. The closer he came I realized that he wasn’t as young as I thought, in fact, he was mature and probably the same age as his friends.
They seemed very comfortable with one another laughing and joking as they sauntered along. He had a presence and seemed to have no problems keeping his stride even though his legs were much shorter than his friends. Little did I know at the time that he was a warrior; born with cystic fibrosis he challenged life on many levels.
Other than his size I had no idea that he was struggling just to breathe. Living with an invisible disease you quickly learn how to compensate. No one wants their disease to own them. As I watched them disappear down the road an old lyric came to mind.
You can’t judge one by looking at the other.
You can’t judge a book by looking at the cover.
Oh can’t you see, oh well you misjudged me.
I look like a boy, but I have C.F. undercover.
You can’t judge a book by looking at the cover.
There’s a story behind every person, a reason why they are the way they are. Think about that before you judge someone. There have been times that people have doubted me when I was not well. I’ve been told, “you look alright to me, what’s wrong with you? What’s your problem?” What they don’t understand is that they’ve got it all backward; I am not well, rather I am faking being well.
Before my lung transplant, I frequently had chronic chest pain caused by excessive coughing. Coughing was my body’s natural mechanism to try and rid my clogged lungs and airways of thick sticky mucus. Coughing helped to relieve the tightness living inside my chest. At times it felt like as if a slippery serpent was wrapping its scaly body around my lungs, strangulating and constricting my breaths. The wheezing that would escape from my lungs would be a hiss of a rattle.
The cough woke a fiery dragon, burning the lining of my lungs. If that wasn’t enough to suffer through, my stomach muscles would feel like a punching bag. The sheer pressure of coughing weighted my shoulders down and caused a deep stabbing ache between my shoulder blades. This is how I would start my day, in constant pain. I hid in the pain, showing no outward signs of the torture I was battling. The physical pain was hardwired into my system; I simply faked it pretending to be well all the time.
I appear as I want you to see me. I paint on my ‘I’m OK’ face every morning before my day and walk around with a smile, but the truth is that I am in chronic pain, always struggling, but you will never see that because I do not want to appear in that light. You may believe I am faking being sick, but I am actually faking being well, and people need to not be as quick to judge.
The only person who could detect I was getting an infection was my Mom. She could see through my smoke screen. She by-passed the “I am fine mom, don’t worry” or “No, we don’t need to waste our time going into clinic the team isn’t going to find anything.” Her radar was incredibly accurate; before I knew it I would be in the car heading for the hospital to be admitted for a two-week course of heavy duty intravenous antibiotics.
With breathing restrictions, physical activities weren’t always easy for me.
There have been times when I needed oxygen 24/7. The sheer act of walking was a major task. I used my disability parking permit when I was out. Several times I returned to find handwritten notes tucked into my windshield stating that I abused the system. Nasty little sentences slamming me for misusing a disabled parking space. Why would someone as young and healthy as me require a disabled parking pass? In fact, I remember once coming back to my car only to find a note which read: “Someone in their prime age, has no use to abuse a benefit like that. You should be ashamed of yourself”.
Many of those living with an invisible disease’s can relate with this experience; even though you know you’re sick, you know as soon as you step out that people will see your lack of a wheelchair or crutches and do a double take of the handicapped spot you’ve parked in.
Yet the truth is that about 96% of disabled people have what are called an invisible illness. Because they’re invisible, people assume we’re faking all the time. The scariest thing is that many painful chronic illnesses go without acknowledgment or recognition from society, even disability circles. It can even get to the point where the illness controls that person’s life. When it’s such a major thing to that person, it’s not helpful when people dismiss it as a fabrication.
“I didn’t realize disability had an age limit… someone should really tell my body that.”
Thinking on this topic, yet another painful memory floats up inside my head. I was learning how to drive. It was a hot humid summer night, my older brother Chris had taken me out for a lesson. We had stopped at a McDonald’s for ice-cream. Returning to my car I saw a woman make a gesture to her younger daughter regarding my size and the fact that I was driving. She openly pointed to me, motioning her hands to emphasize my small stature. While she was mocking me behind the wheel she was laughing. Not only did this make me feel disrespected it also made me mad. I secretly wanted to go over to the woman and tell her how insensitive she was. I wanted to educate her about CF and tell her how fortunate her daughter was to be healthy. But instead I got into my car and drove away. This memory sits with me. The worst thing you can do to a person with an invisible illness is, have them feel like they need to prove how sick they are.
Depending on the mutation of the gene, Cystic Fibrosis can play a large part in children’s growth. Ciliated epithelial cells in the person that have a mutated protein lead to abnormally viscous mucus production. The poor growth in children typically presents as an inability to gain weight or height at the same rate as their peers and is occasionally not diagnosed until investigation is initiated for poor growth. The causes of growth failure are multifactorial and include lung infection, poor absorption of nutrients through the gastrointestinal tract, and increased metabolic demand due to chronic illness.
Nutritional failure in cystic fibrosis is multifactorial. Malabsorption of fat, protein, and fat-soluble vitamins is a result of insufficient production of pancreatic enzymes, which can be exacerbated by bile salt abnormalities in the presence of concurrent liver disease. Progressive pulmonary infection can lead to increased work of breathing, reduced appetite, and increased caloric needs from inflammatory catabolism. Other factors that affect nutrition include cystic fibrosis–related diabetes mellitus, altered motility of the gastrointestinal tract, and small bowel bacterial overgrowth.
Pancreatic insufficiency results in malabsorption and maldigestion of nutrients and fat-soluble vitamins. In fact, cystic fibrosis derives its name from the cysts and fibrosis noted in the pancreas of patients with the disease. Pancreatic enzyme replacement therapy (PERT) and optimization of nutritional deficiencies can prevent growth failure and improve other outcomes in patients with Cystic Fibrosis, including quality of life, resistance to infection, and chronic lung disease, which can lead to longer life expectancy. The type of the genetic mutation causing cystic fibrosis determines whether a patient is pancreatic-sufficient or pancreatic-insufficient, although approximately 85% of patients are pancreatic-insufficient by the age of 1 to 2 years. Pancreatic sufficiency in the setting of Cystic Fibrosis is a risk factor for recurrent pancreatitis, and recurrent pancreatitis can often be a presentation for the diagnosis of cystic fibrosis
CF has me forever ensnared in a childlike body. Short stature, thin, I will be the eternal kid due to the mutation that prevented my growth. My body wasn’t getting enough nutrients at the time I hit my growth spurts and puberty. Being in my body isn’t always easy. Even though I am a grown man I struggle to live life as “normal” as possible. It’s made daily tasks a challenge as well I feel like I’ve missed out on parts of life. As I journey throughout life I’ve learned to adapt. Blend in and even though what seems like a simple task I have taken on the challenge to overcome it.
Living with an invisible illness, it’s difficult and often pointless to try to explain to someone who has no idea of the daily struggles you face. Feeling the pain, feeling unwell, feeling awful on the inside whilst looking perfectly fine on the outside is a hard act to keep up. Putting on a brave face for everyone wears you down. There are many forms of invisible illness other than CF. The invisible sufferers include Anxiety, Alzheimer’s, Chron’s, Depression, Diabetes, Epilepsy, Fibromyalgia, PTSD and many different kinds of Cancers.
Just because you can’t see it, doesn’t mean it doesn’t exist.
We learn not to talk about it! We’ve learned not to talk about our illnesses. Out fear out of disbelief, patronizing phrases or yet another unhelpful answer, and because we’re sick of being made to feel over-dramatic as if it’s all in our head.
We need someone who’s willing to listen. When I say listen, I mean really listen. Not give us answers to make us feel better at the time or daft answers that, while I’m sure are said to be helpful, only make the situation worse. We just want a friend who’s going to say ‘I’m here for you’ when we need them most
“Ask questions before you judge me. I’m happy to share my story and want to educate others. My challenges/pain is real so if you don’t understand, get to know me.”
The best thing you could say to someone with an Invisible illness is to tell them “you believe in them”. Believing is acknowledging you understand what they are going through. Today we have no reason to judge anyone as we don’t know what their story in life is. Judging a person does not define who they are. It defines who you are. So remember to keep an open mind.
We may not look sick, but turn our bodies inside out and they would tell different stories.