As I’ve gotten older (and seemingly wiser), I’ve come to realize that certain things are common sense as they relate to living with a chronic illness. It has gotten to the point where I take them for granted – I know this because from time to time I’ll drop in on cystic fibrosis Facebook communities, or groups, to get a flavor of what the CF world needs, and I always see newcomers to the disease discussing things that are real head scratchers. For example, the other day I saw a CF mom post something about trying to figure out a way to attach a pill case to her phone, so she’d always have meds available for her kid – since we never go anywhere without our phones these days. While the idea on the surface may sound convenient, it probably isn’t the best idea to stick medication onto something that can heat up without any warning.
It’s common sense.
But then it hit me – not everyone has 24 (I found out I was diagnosed at age 2) years of experience in dealing with the disease like I do. The mom posting in the group had no prior experience with what she was asking for. That doesn’t make her wrong, it just shows her unexperienced with new situations. Newcomers need to figure out strategies that work for them, just like I’m constantly evolving my own strategies as I get older.
So here’s my list of common sense things for people dealing with chronic illness.
- Follow directions
The labels on the pill bottle, the lifespan of a nebulizer or the guidelines on feeding tube use are all put in place to HELP you be safe and successful when using a medical device. Everyone loves cutting corners, especially when we get comfortable with a routine or procedure we put in place, but we have to remember why certain things run the way they do. The bottom line is that a lot of what we are using when it comes to treating chronic illness is synthetic, or not naturally occurring in our bodies, so if we want all this shit to work correctly, follow the directions. Don’t stick a pill case onto your phone, and make sure you replace the nebulizer filter whenever the manufacturer dictates.
- The first responder
There will come a time in your life, or your son or daughter’s life, when you will be out in the wild with your chronic illness. You’re going to leave the nest, and it can be a little terrifying. You need to designate a first responder – ultimately someone that you can trust (enough) to help you if you need it. There is no shame in feeling dependent on another person, because, really, it’s the nature of the life we live. There will be a time when your health and safety will both be compromised, and you’re going to need someone to rely on unconditionally. In college, my first responders were my roommates and sister (who also went to BC with me). You are going to need to open up about your CF and teach other people about your care, so that when you can’t do it, those people can provide for you.
- Plan ahead
Organizational and management skills are necessary for life with chronic illness. Ironically, I think that allows people with CF to be so successful in the workplace. Spontaneity is a luxury for us with CF. I’m not saying it can’t happen, but it can be difficult to really flesh out. Ultimately most things need to be planned or organized. Nothing is worse than going to do my treatments only to realize that none of my nep-cups have been cleaned and sterilized. That happened to me all the time in college. Next thing I knew, I was sterilizing, then waiting for everything to dry, then finally asleep and hour and a half after I had planned to be after finishing my treatments. Time is not something we have enough of in a day to let little things like this slip. Organization is a skill you must perfect, and then pass on to your kid.
- Not every little thing is CF related
A little cough or a sniffle doesn’t have to be CF related. Normal things that happen to “healthy” people are going to happen to people with CF or chronic illness too. We get seasonal allergies, the common cold targets people with CF and not every cough indicates a pulmonary exacerbation. Parents, please don’t react negatively to every single cough. It’s a good way to annoy your son or daughter.
- Go to a trusted source
We cause ourselves quite a bit of anxiety when we go to a third party source for an answer to a medical question. When something definitely isn’t feeling right, it’s important to get a good answer, one from a doctor or a medical team, not something from the Internet. The doctor can be a scary place, I get that, and sometimes knowing too much is even worse, but I’ve always said that knowing is better than guessing. Don’t think that just because I have CF, I am an expert. I am not going to be able to give you an answer as to why you are coughing up blood. I know why it happens to me, I can guess why it’s happening to you, but I may not be right. Talk to the right person.
- Ask Questions and take notes
Sort of related to the last one, but different in its own way; you have to communicate with your medical team. One of the most difficult things about going to the doctor is remembering everything that is discussed. Clinic appointments can be high stress situations for families and patients – no one likes to be reminded they are sick. The good news is that this problem is starting to change across the country, but it isn’t everywhere yet – medical centers are sending detailed summaries (instructions, prescription notes, recommended time of next visit, etc.) of doctor visits to patients via email as soon as they leave the clinic. I’d like to see this happen everywhere sooner rather than later, but for the time being it just hasn’t happened yet (including my clinic). So that means, you, the patient, need to be proactive. Take notes in your phone, on a piece of paper, ask questions of your doctor about the discussed plan, ask questions about your short term and long term future – whatever may help you remember the clinic appointment to the best of your ability, and also give you some peace of mind.
- Trust yourself
I have a general rule: if I don’t have a good feeling about something, I don’t hesitate to step away. In a practical sense, my parents taught me this principle when I was younger. If half of my schoolmates were sick during cold and flu season, yet still showed up to class, they never hesitated to pull me out of school for a day. I have learned to apply this value in different ways. It’s kind of like, “if you don’t have something good to say, don’t say it,” but in real life. With enough experience under your belt, your gut feelings should lead you down the right path. Ultimately, when you step back, though, you need to figure out why you didn’t have a good feeling about a situation in the first place. Understand what’s going on and move forward.
- If something seems easy, it probably is
As it turns out, it actually is pretty easy to use a feeding tube or reconstitute Colistin (antibiotic). Don’t doubt yourself because something appears to be difficult, because not everything is!
- Ask for help
Conversely it’s okay to ask for help, this can be a hard life, not everything is as easy as reconstituting Colistin. Go find the help you need, it’s out there! For example, at the Boomer Esiason Foundation we provide financial aid for CF patients via college scholarships and transplant grants. We also have dozens and dozens and dozens and dozens of educational videos designed to help make your life with CF easier. We don’t put them on YouTube for the hell of it – they are there to guide you through life with CF. Talk to a friend if you’re having a tough time. Let your doctor know that the stress of all this is a lot to handle. Help is out there, you just have to look for it.
- Don’t let frustration morph into anger
I struggle with this one a little bit, but it is worth saying. It’s frustrating when you get sick or when your son or daughter gets sick. Don’t turn that into anger. Channel that energy in a positive way, because the consequences of not doing that can be severe. Nothing can be more isolating for a young CF patient than when a parent outwardly shows frustration AND anger as a result of the kid getting sick. 99% of the time, the CF patient is not at fault for getting sick, and guess what, we know it sucks to get sick. These things happen well outside the realm of our control. This is the life we live and the sooner you can accept that, the easier it will be.
- You have to be willing to give up certain things
I have always said that life is about creating a collection of memories that you can look back on and be proud of. That doesn’t mean you need to get out and there run yourself into the ground. Certain battles are worth fighting, while others are not. If you know a trip or an event or an activity is going to directly influence your health, then figure out a workaround. Look at it this way, every Spring/Summer I travel a ton for work. This year just happened to be more than usual. On top of that I usually go up to Canada for a weekend in April to play in a rec league hockey tournament just for kicks. Even further, I had a bachelor party and a wedding to travel for in May. I knew that my health (and wallet) depended on me giving up at least one trip. Since my work is a responsibility those absolutely had to stay on the calendar, and one of my best friends was getting married, so I couldn’t give up the wedding and trip to Austin for the bachelor party, so unfortunately I had to let the hockey trip go. It wasn’t an easy decision, but I knew it would pay dividends and allow me to travel to my other commitments. Based on past experiences, I know that travel is an easy place for me to get run down and develop a pulmonary exacerbation. You need to figure out what works for you and what doesn’t.
- Laugh at it
This shit doesn’t have to be so serious all the time. It’s going to be funny when you’re kid wakes up from sedation after a procedure (thank God we didn’t have iPhone cameras when I was younger), or when a CF fart comes out in public, or when the feeding tube leaks all over somebody else. It’s okay to have a sense of humor about some of these things!
Let me know if you have any other common sense strategies for dealing with chronic illness in the comments!