The end of May approaches warmer weather greets us which means more outdoor activities. Let me set the day for you. After a cold long winter, there are many people taking advantage of these summer-like days in May by either sitting on a patio taking in the sun, socializing with a group of friends, or simply strolling through the park with their dog. The sun is shining giving everyone that extra happy feeling. A gentle breeze cuts through the sweat perspiring off your forehead giving you that extra push to be a little more physical. With the arrival of good weather, I don’t want to miss a single day, I take every advantage to get outside and enjoy my surroundings. Even the simple things like walking with the sun in your face, enjoying a stroll through the park, and sitting on a bench people watching, just to be outside is very healing until……
A slow gradual tightness dances through my lungs, it spreads instantly throughout creating a sense of strangulation with each breath. My breathing constricts becoming shallow I can feel the throbbing and pumping behind my ears. I no longer hear the surrounding sounds that were clear a moment ago, but now muffled noise leads to confusion.
My Heart begins to pound as if I just got off a treadmill however I’m standing still in place. With each BEAT/THUD felt my heart races faster out of control, the shortness of restricted shallow breaths starts to set in. Anxiety floods my mind, a sense of hopelessness washes over me as I realize the vessel I live in is no longer strong enough to be my operating system.
With the lack of oxygen to fuel your body, you can feel a crash of darkness setting in only to hope in the back of your mind that the foggy cloud of panic and confusion that has overtaken control of your mind and body will dissipate just as the sunrise does on a misty morning.
I can’t get control, the panic sets off a mental distress of confusion in the brain, too much going on and my thought process is overwhelmed. My mind begins to feed off of the bits of anxiety that is settling in. Cold sweat creeps across my back, (why this, why now?). Survival mode kicks in, don’t let anyone see or discover what is happening. Meanwhile, I struggle to control my breathing. “Come on you got this”, I silently scream at myself, yet no results, less and less air is slipping into my lungs. You tell yourself to sit down, you try and gain control. You take a look, is there somewhere to sit, a quick glance confirms nothing in site.
“Live damn-it, just fucking breathe”. If only it was that easy. Take a breath, a deep breath as deep as you can exhale! Repeat, trying to slow down the beat you feel and hear drumming in your ears. Your pulse is strong but your will to live and persevere is stronger. Let your body know you want to live. Come on Dan get a grip of yourself, my mind repeats again and again! The drumming slowly fades away I’m back to the weak shallow breaths I’m used to. The dampness in my t-shirt is the only evidence left of what just happened. My body is still on overload, I slowly start to go into rest mode. I take a step back, find somewhere to sit down and rest. The confusion of lost clarity begins to lift with each full new breath entering my lungs.
I have always hidden these attacks from others but now I think WHY? I have always considered it a weakness but in realization, I should be telling someone in case the situation gets worse and reaches a point that I cannot recover from.
I am scared, almost all the time. But I never tell anyone, I can’t afford to. I’ve made myself believe that I have to go on pretending. I am generally a confident person, I try to keep my disease invisible, and I hate to admit that I have a weakness. When I was younger my experience with mental health was brought to reality by the instabilities that my brother and father struggled with. I never thought it could be a part of my life; I never truly understood what was going on or thought I could help.
Unfortunately, I am not alone mental health issues are quite common in chronic illness sufferers.
Research has shown that patients suffering with chronic disease (defined as a condition that persists longer than three months) often have anxiety and depression. It is estimated that up to one-third of individuals with serious medical conditions will experience depression. Depression can be a common complication of Cystic Fibrosis.
You have a chronic illness yet you thought your mental health wouldn’t be affected. You may tell yourself that everything is gummy- drop rainbows with flying unicorns of joyfulness. However our lives are unpredictable, circumstances change, suddenly you wake up one day to discover the walls crashing in around you. These episodes force yourself to take another look and reevaluate your situation.
The build-up of anxiety from living with a chronic illness such as cystic fibrosis can make the playing field a whole lot different. The mental battles/panics and pain we live with are real and can be very hard on us. Managing your mental health is just as important as any other treatment and regiment that is prescribed by your team. The main goal is to live as much of a “healthy life” as possible by following routine treatments that help keep a CF’er out of hospitalization. However, there are times where we will feel captive in our own surroundings leading to situations that leave us mentally confused and depressed. We are often left feeling weak and sometimes exposed, preferring to hide what’s really going on in our lives.
Interestingly May is the awareness month for both Cystic Fibrosis and Mental Health.
Cystic Fibrosis is the most common Autosomal Recessive life-shortening disease among Caucasians. Studies exploring the prevalence of anxiety and depression in adult CF patients are few. Those that have been performed show inconsistent results and rarely include comparisons with general populations. The prevalence and degree of anxiety and depression that were investigated in adult CF were found higher than the general population. These results have lead to a new screening process that is now being used during clinic visits.
Chronically ill patients wonder whether their chronic illness is making them depressed or is their depression making them ill?
Living with a chronic illness is tough, dealing with changes in mobility, low immunity and never knowing how your body will be on any given day can take its toll. It can be difficult to maintain balance living in a body with a chronic illness that is trying to kill you physically while battling the mental stresses of daily life.
Anxiety and depression of the “bad days” diminish our best attempts at living positively. We are often left feeling weak and powerless, sometimes lifeless.
Mental health is an integral and essential component of health. It is a state of well being in which an individual realizes his or her abilities to cope with the normal stress of life. The individual is able to work productively and make a contribution to his or her community.
I used to believe I had it all figured out, however I was totally wrong. As I get older there are more issues that I need to deal with, struggling with everything from financial to mental to physical and emotional complications adds incredible stress to my life. Increasing numbers of CF patients are now surviving into adulthood. Like myself, this new group of CFer’s are experiencing more and more mental health issues.
Although depression and anxiety are common in CF, the stigma associated with mental health issues often make people less likely to talk to about them.
Depression can be overlooked by doctors when dealing with the bigger picture of a patient’s disease.
Over 6,000 CF patients aged twelve through to adulthood, and over 4,000 parents, found that depression and anxiety were two to three times more elevated in patients with CF and in parents of children with CF.
New guidelines have been developed for screening and treating depression and anxiety found within the Cystic Fibrosis-related community. Patients 12 years and older should receive annual screening for depression and anxiety. Parents of caregivers of patients aged 0-17 years of age should be offered annual screening for depression and anxiety. The purpose of these screenings are now just as important of measuring height, weight, chest x-ray, and PFTs. This is a stepped process for prevention, screening assessment, and intervention. It can include talk, therapy, medication or any combination of the two.
The difficult part with diagnosing depression and anxiety in patients with CF is that most side effects are already common issues found in patients with CF/chronic illness. This often makes a diagnosis difficult.
Most side effects are:
Mixed emotions, loss of energy, feeling hopeless and worthless, loss of things that are enjoyed, problems concentrating, problems making decisions, irritability, sleeping more than usual, trouble falling or staying asleep, unexplained aches and pains, stomach aches or other digestive problems, loss of interest in sex, sexual problems, loss of appetite and weight loss, weight gain, thoughts of suicide, suicide attempts.
CF individuals who suffer from depression are less likely to manage their treatment plans, tend to have worse lung functions, have a lower body mass index (BMI), experience more hospitalizations, often have higher health care costs and experience a lower quality of life.
You can’t manage everything on your own, and pride should not get in the way of happiness. Although it may be difficult at first try to find the right person who understands the multi-level effects that CF can create in our minds. Finding a friend or professional counselor you can trust is imperative. Take the time to invest in yourself.
Dr. Henna Macciocchi doctor of immunology states, “It’s important to remember that mental health and physical health are inextricably linked. People with chronic illness can, therefore, suffer from poor mental health (and vice versa) as a consequence of the illness itself and of the diminished quality of life. Looking after the body is one of the easiest ways to take care of the mind. The importance of a physical lifestyle for someone living with CF is highly important, as it’s a form of keeping the lungs active and healthy aside from being a form of physiotherapy.
Pain is depressing, and depression causes and intensifies pain. People with chronic pain have three times the risk of developing psychiatric symptoms. Vise versa mood-anxiety disorders and depressed patients have three times the average risk of developing chronic pain.
Either way, depression worsens chronic illness and has been linked to higher rates of disease-related morbidity compared to patients without depression. Those with depressive symptoms tend to experience a diminished quality of life and have almost two times as many days of restricted activity or missed work. From a survey of 1,100 patients, 49% of those suffering from chronic illness are on antidepressants, according to a study published in the “Western Journal of Medicine”.
As hard as it might be to admit what is going on with our feelings or mind the human body is a study in staggering complexity. More than 37 trillion cells all working together create our walking, talking and thinking organisms. But for all the body’s amazing biologic mechanics, there are still a few unfortunate quirks that evolution has yet to iron out.
When I was younger it wasn’t always easy explaining to people what Cystic Fibrosis was let alone pronounce the word, as not that much was known about the disease. Telling someone to just Google or show them a meme wasn’t an option nor did they hand out booklets telling you how to introduce yourself, let alone live with the disease.
In my younger days, living with CF was both mentally and physically challenging. A lot of people and kids would come up to me/stare and ask why I was so short or what was wrong with me when I couldn’t stop coughing. My cough was terrible, wet, throaty; distinctive of a 75-year-old chain smoker. It was all consuming and totally uncontrollable, practically always producing phlegm. I would sound like I was drowning, gurgling in mucus, until I couldn’t breathe.
So many times I would plead with my body to hold in the cough that would knowingly set my lungs aflame. I would desperately try to contain it until I could find a location by myself avoiding the questions of what’s wrong with you, or the laser-eyed stares from onlookers. Not only was this terribly embarrassing to me but it also took a toll on my mental ability. So many times my heart broke as the power of this disease was exposed to the public.
One-third of mental health issues begin at school, differences in environment/surroundings, self-esteem, social identity body image, all lead to kids being bullied.
It’s not just kids in the playground that can leave a toll of hurt. Exposure to the adult world can be just as devastating. I now understand that kids at an age of curiosity don’t always understand the entire situation. But growing up it was also the adults who asked unnecessary personal questions. These hurtful comments often deeply scarred me and many will be trapped within my mind forever. The staring, critical quips made by some adults made me feel alienated from society. No one living with or without a chronic disease should ever have to suffer through this trauma.
It was because of these negative reactions that I felt I needed to hide my CF from the “outside world”. What would people say if they saw the drugs I took, the daily inhaled medication or physiotherapy required to help clear my airways. Hiding all this took a toll on me mentally. I understand that adults can be as curious as children however they should learn to practice desegregation.
These questions and comments can leave a child/adult questioning themselves. What is wrong with me? Why am I different? Does my image really matter whether I am short, tall, fat or thin? Does my cough bother you? All these questions affect your perception of where you truly fit within society.
Living an active teen-life can often be challenging for those with CF/ Chronic illness. The time consumed in managing life-sustaining therapies can lead to loss in weekend outings with friends/ family or the socializing at school/events. Recurring hospitalizations due to infections also interfere with a normal social life. Combining this with being a kid/teenager can lead to immense mixed emotions and feelings triggering panic attacks, anxiety, doubt, and depression.
Memories from our youth can leave a permanent negativity in our minds. These deprecating impressions make us feel different, guilty that there is something wrong with us. It takes a toll on our self-esteem, our confidence, questioning where we fit in. Something I learned along the way was, we often cling to memories as if they define us. However, it is our actions that ultimately define who we are. It took enormous willpower to learn how to ignore the comments and looks I received, now it is just natural to disregard the rudeness.
Many describe living with mental health like being on an unpleasant roller coaster ride. The unexpectedness is daunting. When will the cart accelerate? Can you survive the gut-descending fall? The uncontrollable mixed feelings in your mind wanting to get off the ride while feeling you’re a burden to others. You would rather help others around you than face your own concerns. It’s an illness that affects every single thing segment in your life. A word, sound, action, location or event can bring on a surge of panic and anxiety, initiating that depressed feeling of loneliness or hopelessness that washes up within.
Struggling to live with CF and Mental illness can make daily routines very difficult. In addition to normal occurrences, we have other things dragging us down. Watching lung functions drop without control wondering if they will ever go back to previous normal limits. Watching our loved ones worry as we face these battles never knowing what the next day will bring. It is not easy saying no to friends and family. The fear of missing out never knowing if we will get another chance to experience the moment can play havoc with our minds. Waking up at the beginning of the day feeling as if you’re in a fog lacking clarity or focus makes it difficult to complete normal tasks.
Living with CF doesn’t just mean there are complications with the lungs making our breathing difficult. There are different mutations that negatively affect the body including the pancreas, liver, nose sinuses and sweat glands just to name a few.
Some CFer’s suffer from pancreatic issues. Thick sticky mucus creates scarring on the pancreas. This scarring prevents the pancreas from producing normal amounts of insulin which results in type 1 diabetes. In the “CF world” we call this CFRD (Cystic Fibrosis Related Diabetes).
The American Diabetes Association (ADA) warns of the problems that can happen when patients with diabetes have depression that is left untreated. They note that the stress of managing diabetes on a day-to-day level is real, and can make people feel sad and isolated. Depression and diabetes can easily spiral into a vicious cycle. “If you are depressed and have no energy, chances are you will find such tasks performing regular blood sugar testing too much”, writes ADA. “If you feel so anxious that you can’t think straight, it will be hard to keep up with a good diet. You may not feel like eating at all. Of course, this will affect your blood sugar levels, “which will affect your diabetes, which will affect your depression, which will…. you get the picture”. Research shows depression increases the risk for diabetes, and diabetes increases the risk for depression.
My new motto is you cannot pour from an empty cup. Taking the time to refill and refresh your mind, body and soul is not only nourishing but also creates positive energy when dealing with those around you. Don’t be afraid to say “No”! Listen to your body. It can take a long time to understand that there are days where you may need to lay down all day to recharge, don’t feel guilty about it. There are ways to help control living with CF and mental health together such as joining a support group, talking about your problems with people who have the same experience can help you feel less alone. Don’t spend time worrying about your “expiration date” everyone has one just because we are born given a scientific age doesn’t mean you are that “stat”. It’s best to make the most of it without focusing on when and how it will end. Take the best care of yourself to exceed that stat.
Many people with depression withdraw and isolate themselves from others so spend time with people that lift your spirits as well get outside and make time for things you enjoy for at least 30 minutes every day. Avoid alcohol, drugs, caffeine and cigarettes, which can increase anxiety levels, very importantly continue your treatment plan.
Practice good sleeping habits, do your best to get enough sleep. Go to bed and wake up on a consistent schedule and avoid staying in bed when you’re not sleeping.
While these habits are not a substitute for professional care, they can help boost mood performance.
Don’t be afraid to ask for “Help”, there is such a stigma around mental health issues that many people are often afraid and embarrassed to admit they need help. CF causes scars both physically and mentally that we have to deal with on a daily basis and there should be no shame in asking for help. Understanding mobility is the key to freedom, independence and ultimately happiness.
More than 80% of people with depression and other mental health-related issues show improvement with treatment. This is also true if depression is related to chronic illness or the side effects of medicine.
There is a toll on anyone living with CF, not just the body the mind and soul. Doubt creates anxiety and fear, fears that we may not be in control. Someone once told me that depression is the antithesis to anxiety, that when the body gets too much feeling it shuts down the ability to feel at all as a defense mechanism.
Ultimately we are the authors of our lives, we may not be able to have control of the plot but what we do with the characters is up to us. There are days living with CF where you feel like your lungs are drowning you. Anxiety rises as your heart rate increases, you’re slowly slipping under that wave as the water fills your lungs and the panic hits you straight on. The only thing you can try to do is remind yourself to “just breathe”. This may sound easy to most as breathing comes naturally however what would you do if you had to fight to breath? Imagine someone is chasing you up a steep flight of stairs, you are out of breath yet you know if you stop you are in danger. You’re winded you feel as if someone has sucked all the air out of your lungs, your body freezes as you try to grasp your breath but you don’t find it. Fear and pain set in how can you escape? Someone with CF never escapes. Struggling to breathe is terrifying. We encounter these episodes all the time. We learn how to try and steady our gasps until we gain some control over our damaged lungs, always fearing the next attack to come.
In light of Cystic Fibrosis/ Mental Health awareness month coming to an end, I leave you with this, living with a life-threatening illness usually comes in hand with depression and anxiety.
Because the awareness month is over doesn’t mean either of these illness just disappear or heal themselves. The people that live with these conditions continue battling for their lives every day knowing some days are good and others are bad. They both are a battle against themselves.
Behind my smile, there’s a story you would never understand. I’ve fed you bits and pieces of my life to help shine light into what it’s like living with CF; however I’ve only just skimmed the surface. What I have done is let you glimpse down my rabbit hole, this hole gets a lot deeper. My hope is you will walk away with a little more insight into the immense world of disabilities and mental health.
I want to share this topic with all the Cystic Fibrosis/ Lung Transplant family’s and Worriers/Salty Girls out there who aren’t always sure how to deal with our emotions. The feelings of uselessness, confusion, anxiety and depression are real, you’re not alone you have every reason to feel like this at times. We are different, our disease takes its toll however, we can’t change how we were created but we can try and create a strong positive mindset. Our lives mean we face adversity on a daily basis. We have to think of ourselves as warriors as we learn to overcome and find the strength to exceed even the darkest moments.
The Un-knowing of knowing can be a dark place. There are days that I feel totally dead inside, the fight has been extinguished with exhaustion, confusion, hurt and doubt. The realization of a fallen wish or thought has at times evoked thoughts of death.
At times my current state of mind rambles along feeling as if, night is day, day is night. It’s like living in a complicated yet comfortable zone. I get to observe all the plastic skeletons that we hide while we rest.
Despite all, I will constantly bathe my mind in the positive light that maintains “nothing is impossible”! I will show them you can transform strong will and determination into life itself. Learn to be yourself without fear of discrimination, let the observer label you as they will. As long as you act on your own accord and follow your own beliefs confident in your own identity you will be beyond judgments.