I've asked some very special people in my life to write about what it is like to have a daughter, family member, friend, girlfriend in their life, who has cystic fibrosis. I did this so people could develop a new frame of mind about loving and living with someone who has a chronic illness.
I've come across many people who view my disease as unfortunate, depressing, and ultimately feel that my existence is a burden on others. This is NOT how my life should be idealized. In fact, it's purely insulting to my loved ones and I.
The first writer to contribute a brief summary of what it has been like to have me, a CFer, in their life, is my ex-boyfriend, Eric. I asked him to write because I wanted every perspective possible. In my dating experience, I have found that it's very hard for other people to want to be with someone with a chronic illness. It's all very pathetic to me, however, I get that some folks aren't emotionally willing and able to care for someone with a disease like mine. Eric was different in that none of this was ever even a thought for him. He supported and loved me for me, not because of my disease.
Below are his own words of what it was like to be my significant other...
"I was asked to write about my experience about dating someone who was diagnosed with cystic fibrosis. To be truthful, when I met her, I had no idea that she was any way different than any other girl I have ever met. I couldn't have been more wrong but not in any way that had anything to do with her illness. She is outgoing, social, funny, spontaneous, and very pretty. She cares about her friends and she cares about herself, and she was never afraid to tell you her opinion. When we first started dating, I didn't even really know what it was to have CF and I never knew what the symptoms were. She was very upfront with me and told me what was going on. In finding out about the illness, I remember going with her to the hospital when she had to get IV treatments and getting results for PFT tests. I remember her getting very excited or very concerned based on those test results. But through every roller coaster ride at the hospital, I always knew she would be ok. I cant explain it or quantify it in any medical way, but she really was/ is full of too much fire for me to think of any other outcome. While we don't date anymore we remain very good friends. My family loves her and my friends love her and they always ask how she is doing. And the thing that makes me happy is that they are generally not asking about her health. While they know she has an illness, and certainly that is a concern, but they don't see her as ill. And I love that."
At 25 years old I finalized my will. I welcomed this challenging process in a casual, nonchalant, even humorous manner. How else could I have handled such a morbid situation? The documentation took me about a week to complete. During this time I was pretty stable and comfortable with the planning. However, after it was completed, I succumbed to the Goddess of Wine and let the tears flow. I grieved my own hypothetical death.
I’ve compiled a satirical list of things to be prepared for when planning your death:
I hope you’ve gathered some valuable life lessons or in this case, death lessons. All in all, we shouldn’t take death SO seriously. It literally happens to everyone. Call me “morbid,” or “creepy,” or call me “death positive.” I don’t really care. Every life should be honored and legacies should remain, but death shouldn’t be so tragic.
Being recently diagnosed with the mood disorder, bipolar II also known as bipolar light, I’ve come to realize the roots and reasonings of my previous behaviors and actions. Having bipolar II is much different than bipolar I. I start by establishing this because the second I mention bipolar, people often misconstrue the meaning and aren’t aware of the different types. Bipolar II consists of episodes of severe depression and mild manic symptoms. Bipolar I is when a patient has extreme manic and depressive episodes. Basically, I have the low, low’s without the super high, high’s.
It’s no secret that I’ve battled bouts of depression. I’ve experienced four major episodes. My depression is cyclical, meaning I have recurring episodes every few years. This has been the case since I was 15. Sometimes I can recall depressive episodes happening before then, back to the age of 8.
Childhood anxiety and depression is terrifying, naturally. No child should have to endure that emotional pain and disturbance. I’d have night terrors, trouble sleeping due to the sheer fear of closing my eyes, obsessive-compulsive thoughts and habits (i.e. sitting at my table counting to 100 everyday before class began in the first grade), anxious thoughts about my loved one’s safety, any emotional disturbance making me physically ill, and more. I was an 11 year old girl carrying the fears of an overly-stressed, middle-aged being, relying on verses (that I did not understand, what-so-ever) out of my Precious Moments Bible to bring me comfort.
As I grew older, my symptoms of depression started getting more severe. Dramatic weight loss, major fatigue, loss of interest in just about everything but sleeping, etc. Sometimes I'm too tired to be sad. The physical toll depression takes is just as painful as the mental and emotional parts. Sometimes it's even worse.
The anxiety takes ahold of my thoughts. They race so quickly. My brain thinks of things I don’t want it to; scary things, and it doesn’t stop. I try and distract myself with pleasant thoughts like visions of pretty flowers and lyrics to sweet songs but nothing sticks. Times like these are when I have to dig out my bible and dive right in… Of course, now I have Google to help me out with verses I still can’t quite grasp.
On top of those lovely anxious thoughts, my social anxiety can get OUT OF CONTROL. To keep my thoughts and my voice relaxed when talking to someone else, I fidget with my hands, fingers, and jewelry (hello, that’s why I wear so many rings). If I focus my anxiety onto my hands, I have more flowing, normal thoughts while conversing with others.
Then, there is my mania. Mwahaha.
Oftentimes, anxiety evokes or develops into manic episodes. My manic episodes aren't severe as stated in the first paragraph, but definitely creep up on me pretending to be “fun and spontaneous” ideas, when they’re truly impulsive, dangerous, and unhealthy behaviors. Learning the difference of the two is the fun part.
Since my diagnosis, I have been backtracking my previous decisions and evaluating from which of the two reasons they were made. So far, most of them have been classified as the oh-so-fun, impulsive, dangerous, and unhealthy manic, me. I never really knew that this mood, a.k.a mania, had a rhyme or reason. I honestly just thought that mood was part of my personality. What made me, me.
This is where it might start sounding a little confusing. You see, that manic mood is still what makes me the person that I am, but there’s a thin line to that edginess. A line that I now know is very unhealthy to cross. The medications that I have been prescribed to stabilize my moods makes me pause and really evaluate my decisions and tactics when reacting to situations. I consider actions and behaviors that will positively impact me as healthy, where as the other ones that will negatively affect me as, not so healthy.
Yes, this all may seem so easy and simple to you as the reader, but to me, none of these thought processes ever processed! It’s humorous to me now. Not so much that I look back and think that my old train of thought was a complete joke, but that I never had the tools to realize that there was actually a biological answer to the (cough, cough) problems I was having.
After becoming quite acquainted with my mood disorder, many things have been brought to my attention as far as treatment. Bipolar is nothing to cope with alone, especially since you’re already isolated in the bubble that is mental illness. I said, “you’re” because I’m assuming that if you’ve read this far you’re still intrigued and want insight to how the disorder really feels, or you have mental health matters of your own. Either way, no one’s judging here.
The National Alliance on Mental Illness states that 1 in 5 adults in the US experiences mental illness in a given year. That means that when you’re at school, work, hanging out at a bar, or in any other public place, you’re going to run into someone who has experienced mental illness. So that means we should all probably be a little kinder and warmer to others considering the facts.
People need people to survive.
Above is a diagram of all the symptoms and manifestations that occur in people with cystic fibrosis.
Personally I have experienced and developed the following:
- Vitamin A, D, E, and K deficiency
- Chronic cough
- Mild clubbing of the fingers/mild "barrel chest"
- Inguinal hernias (left and right) due to the pressure and intensity of coughing
- Gastrointestinal bleeding (recurring)
- Bronchitis & recurring lung infections
- Hemoptysis (blood in sputum) due to broken blood vessels in airways and scar tissue in lungs
- Decrease in lung function
- Insulin deficiency (hypoglycemia) due to abnormal pancreatic functioning
- Chronic fatigue
- Sweat glands producing salty sweat due to the sodium chloride correlation of CF
Some patients with CF show different symptoms with different severities. No patient is alike, therefore it is important to know each individuals case and experience with the disease.
I've been spending some time writing an intro to this post but I have deleted everything that I've come up with, so I'm just going to jump right into it...
Why am I still here, when this other person is not? How is that fair? A lot of times I am not compliant with my treatments and medicine, yet I am still healthy. Why? Other CFers make sure to do their treatments three to four times a day, yet they struggle to breathe. Why?
These are some of the questions I ask myself too often. I struggle with the emotions of survivor's guilt almost everyday. These emotions turn into mental blocks which can become debilitating. If I am not careful, these questions and emotions can take ahold of me and ruin my day. Anyone who has struggled with any sort of trauma in their lives, knows the kind of feelings I'm writing about. There is no magical piece of advice that anyone can give to make these thoughts disappear. The only thing that we can do is to train our brains to catch our thoughts and turn them into positive motivation. Self-awareness and acceptance has led me to counteract these guilty feelings because I hold the key to my future. I was born with purpose, along with every other living being on this earth.
At 14, I saw my first pediatric psychologist who specialized in counseling kids with chronic and fatal illnesses. During our first session, she taught me how to redirect my remorseful thoughts. Her advice for me was to write down all of my dreams and goals in thorough detail. She recommended that I sketch a floor plan to my dream home, start a list of future baby and pet names, plan my dream wedding, etc. Her ideas sounded a little crazy to me at the time, considering I was barely a teenager, but I went home that evening and started a journal. I found that her advice actually worked. After every entry, I felt as if my dreams were in reach and that one day, I could actually turn them into a reality. With further therapy and soul searching, I realized that I, along with everyone else, was born with passion and purpose. I can feel the fire within me; It would be a tragedy if I let that energy burn out.
There are so many things that I still have yet to experience that are on my bucket list. I shouldn't feel guilty about living out my dreams. No one should! I also believe that every being passed, sends off an energy to the next. There are so many people with CF that have left this world way too early, but I know that they would be disappointed if I stopped doing what I loved because I felt unworthy. They'd want me to continue to beat the odds. I will be apart of the "Cure Found" generation as well as make a positive impact on the lives of other people living with cystic fibrosis.