I was excited to find on Facebook today that this week is Invisible Illness Awareness Week. Which was exciting for 2 reasons 1) I have an “invisible illness” (cystic fibrosis) and 2) Now I have something to blog about besides my frustrations with antibiotics and how yucky they make me feel.
I figured for this blog, I would write about the “invisible” things about me that people may not realize are happening every day. Besides my short stature, wide ribs, and constant coughing, most people wouldn’t guess that I have CF. Would I prefer it that way? I’m not really sure how to answer that question. In one way, living with an “invisible illness” has its perks. I can go on living without too many people pitying me, I don’t receive nor expect any special treatment (I get doors slammed in my face by the person ahead of me as much as the next person… and I’m okay with that!), and most of all people get to know Lauren and not the-girl-with-that-deadly-disease.
However, some days, its frustrating to live with an “invisible illness.” Why? Because occasionally its hard to communicate to friends and loved ones that as cheery as I may seem, I’m stressed out about my lung function tests, I can’t think straight because of my fevers, I WANT to finish my meal but I just can’t stomach it with all these medications, I want to stay out late with my friends but I don’t want to sacrifice how I feel tomorrow, my head hurts, I’m grouchy because I only got 8 hours of sleep instead of 9 or 10, I’m worried about my future, I’m sad because people with my own “invisible illness” are dying, I haven’t done my treatments yet today so my lungs feel like cement, or simply some days, that I’m exhausted physically, mentally, emotionally which goes way beyond “tired.”
Often, I get the question from caring and concerned loved ones: How are you feeling? OR How are you? And I know that the inflection in the “are” tells me that they want to know how my health is, and that it’s not just a polite gesture. To tell you the truth, I almost always say “I’m doing well!” And to tell you another truth, that’s usually not 100% true. Of course, I’m very honest about my health to my doctors and to my Mother, she can bet that if I say I’m feeling good… I am (and I’m going to get improper grammatically with the use of “good” and “well” here so brace yourself). It’s tough living with a chronic illness, because everyone who is supporting you wants you to be feeling good. And the majority of the time, I am. But compare my “good” to your own “good” and there’s probably a large disparity. “Good” for me is coughing up mucus, “good” for me is being tired by 3 pm and not by noon, “good” for me means that I only have to remember to take 10 medications instead of 15. So by “healthy people standards” I’m rarely ever feeling “good,” but for me… good means only that it could be worst. And then there are the days when all I want to do is curl up in a ball and go to sleep but I’m flying around in 100 different directions. Ask me one of those days how I am, and I’ll tell you I’m good, but really my head is about to explode. I may be good one day, tired the next, sick the next, and back to normal the next. I find it easier to just go with the “I’m doing well” response because the nature of CF is hard to explain. Imagine if when asked how I am I said “Well, I have a life-threatening illness, I cough a bazillion times an hour, my body is exhausted from fighting off a deadly bacteria in my lungs, I was up late worrying about my doctors appointment tomorrow, and I’m wicked hungry but can’t eat because I have no appetite. So I’m feeling like sh**” That sort of response usually elicits a response of pity, which is not what I’m about. So “I’m good” usually will suffice!
There are so many other things that affect the way I live my life that most people don’t even expect. Like the question, which is often asked in an interview: “Where do you want to be in 10 years?” To a normal person, they might picture themselves with a family, a dog, and a couple kids. They might see themselves working, traveling, etc. But when I’m asked that question, I think that in 10 years I’ll be 6 or 7 years away from the median life expectancy for CF. I think… well in 10 years, I want to be alive and I’ll be happy. And it ends there. A family would be nice, a house would be great, but how can I think that far into the future when my future is so uncertain? As morbid and negative as all of this might sound, that is the nature of this “invisible illness.” I can be as hopeful as I wish, (and don’t get me wrong…I AM hopeful) but the harsh reality is always there. As long as people are dying “young” with CF, I will not be able to ignore that fact.
And of course, there are all of the things that living with an illness like CF has blessed me with. I try to work one of those lessons into many of my blogs, but I’d like to reiterate those lessons here, just so I don’t forget and the people reading this don’t forget that as hard as all of these “invisible” problems are, I have learned so much from them. For one: having CF has given me my ability to see life for what it is: beautiful, short, and full of many gifts. I know how to appreciate days when I really am feeling well, and not waste those days when I can help it. Having CF has shown me who my true friends are, it has shown me how much a family and extended family can come together to support me, it has shown me that true love doesn’t waver in the face of adversity, and it has lead me to appreciate the people in my life even more than I could possibly have if I were healthy. CF has taught me how to be strong. It has taught me that a poor grade on a paper, a bad meal in the dining hall, the Red Sox sucking, a busy day, traffic, insults, drama, etc. are all but small problems which should not be dwelt upon. It has taught me how to handle those things that are beyond my control with grace. And sometimes, those lessons may be invisible too. What I often don’t say is how frustrating it can be when people don’t appreciate their lives. I never tell someone who is complaining that they have it easy. I don’t scream at people who don’t take care of their precious bodies. I don’t roll my eyes when people go on and on about how horrible bronchitis and pneumonia is and say “try living with it every day.” No, these are things I hold in, not only because it would be rude to say such a thing, but because I’ve learned that you cannot learn these life lessons by reading my blog or by hearing an inspiring story: you have to experience life in order to learn from it. This is one of those lessons that I’m starting to understand as I mature, which leads me to the point of this blog.
I am so lucky to have learned all I have from living with an “invisible illness.” Including the fact that the way people feel and view life in general is often invisible. You don’t have to have an illness to know that. It’s easy to plaster on a smile through the tough stuff, to hide your past, to keep your own personal backstory behind the curtain. As important as this week is to spreading awareness about invisible illnesses, I think we all have a lot to learn from it. Everyone has some degree of invisibility with the way they feel, their worries, their experiences, their outlook on life. And unless they reveal these secrets, they are as mysterious as the next person. So be careful: Just by looking at someone, you’ll never know what they might be dealing with, you’ll never know if “I’m good” is the truth, and you’ll never know exactly how that person sees the world. Each person is unique, whether they dye their hair pink or not. However, its hard to always see the uniqueness that we all possess. And that is both the shortfall and the beauty of our invisibility.
The Spoon Theory An awesome story about explaining how you feel to someone who might not understand