What it's like to live with a Chronic Disease

What it's like to live with a chronic disease?

by Andy Lipman



The author has 43 years of experience living with chronic disease.

Want to know what it's like to live with chronic disease? Well, here you go.

The promise of a cure

I often wonder what it would be like to go a day without having to treat cystic fibrosis. I sometimes have dreams of doctors telling me to blow up your therapy machine, flush all your pills down the toilet and kick your inhalers to the curb because you've been cured. That dream slowly turned to mere fantasy when every doctor's appointment became like Groundhog's Day.

"When do you think there will be a cure?"

"7 to 10 years Andy."

The following year...

"When do you think there will be a cure?"

"7 to 10 years Andy."

5 years later...

"When do you think there will be a cure?"

"Well, Andy..."

"Let me guess...7 to 10 years, doc?"

Eventually the 7 to 10 years sounded less like the time till a potential cure and more like a prison sentence.

Am I scared?

People with other chronic diseases tell me they remember when they didn't have those diseases." I am unable to have those memories but sometimes I think it's better that way. I didn't have a huge transition into chronic disease by getting a doctor to diagnose me while I was old enough to fear for my life. I know many people including my own wife who have been diagnosed with diseases like cancer and I can't even imagine the Hell that goes through their heads. My introduction to CF was an encyclopedia article. I knew I had a disease but I didn't realize how deadly it was until I read my median life expectancy.

So in short, am I scared? You're damn right I am. But I've learned to focus less on the fear and more on the appreciation of everyday that I do get. I've also learned to use my disease for good. I can raise awareness, help others and even use this platform as a therapy for myself. I tend to personalize my disease by giving it a face and feelings. I like to say that everyday that I wake up, enjoy my day and go to bed is a victory over my villain. I'm a very competitive person so to know that I will be faced with the same bullying competitor for a lifetime is highly motivating.

How do you live with a chronic disease?

I live one day at a time. I don't tend to focus too much on my future though I always wonder if today will be the last day that I will be feeling good for a while. CF comes on so suddenly that I can be feeling pretty well one day and be sick in bed the next. Everyday is a schedule. I have to examine my plans and figure out when I will have time to do three sessions of 30 to 45 minutes of therapy. Actually it's reversed. I make my plans many times based on when I plan to do my therapy. Packing for trips is exhausting. Not only do I have to deal with the anxiety that I forgot something but I have to pack at least 2 bags of medical equipment and medicine. That takes care of my carry-ons. On the bright side, it allows me to board a plane early along with everyone else with visible diseases. I look like that guy who took the handicap spot at the local store and has to fake a limp in order to validate why I needed the space. Cystic fibrosis is very much an invisible disease. Unless you're the mother, father, brother, sister, wife, husband, son or daughter, you rarely see all that goes into staying somewhat healthy with this disease. My daily routine consists of taking 40 pills, doing two hours of treatments and doing multiple inhalers and aerosols. I go to the doctor quarterly and am often on oral or IV antibiotics.



My life may not be "normal," but it's all I know.

"You inspire me. I could never do what you do."

I'm often told "You inspire me. I could never do what you do." I tend to disagree with the latter but let's start with the former. It's flattering that I inspire you but it's also a little bit overwhelming. I don't want to be treated as a symbol of awe but rather just someone like you that will do anything possible to stay healthy and live a long life which brings me to the second part of that statement. You could do what I do if you had to in order to stay alive. I see people all the time that work out for two hours a day or go on very strict diets. The only major difference between me and you is if you stopped working out you'll probably just get a little flabby or out of shape. If I stop doing what I need to do, I'll die. I know that's a big difference but believe it or not someone like me may still look at you and say "Wow, that's impressive." I think people who are diagnosed with something later in life understand this from both viewpoints. They used to look at others and say they could never do that and yet when they are put in the position, they do that and a whole lot more.



Each of us is one phone call away from going from being inspired to the one doing the inspiring.

What's one piece of advice you would give as a chronic disease sufferer?

For one, I don't suffer. I just temper my expectations on how I live. In other words, I don't just drive off one day and move to California with just a suitcase of clothes and my dog Spike. I can't do that with all that I have to pack and my treatment schedule the way that it is. It's nearly impossible to find a good CF center so once you find one don't do anything to jeopardize losing it. Also I would never name my dog "Spike" but that's neither here nor there.

My advice is not for only those with chronic disease. It's for everyone. Live your dreams and love your life. Sounds simple and it is. Sometimes achieving your dreams is filled with obstacles. That doesn't mean you can't get there. It just means your journey may be a bit different. Heck, my dream was to have children and my wife and I unfortunately couldn't do that the "fun" way. We had to spend lots of money, deal with emotional distress and face the physical pain of in vitro fertilization (IVF) in order to even have an opportunity to reproduce but thankfully the stars aligned and we have a 10 year old girl and an 8 year old boy. There are other avenues too including adoption and surrogacy.

And as far as being able to "live your life," technically we all have a chronic disease. It's called life. We each have it, there's no magical cure to prolong it and we will have a lot of regrets if we don't enjoy the moments. I often say that everyone breathes but not everyone lives.

What would be your advice to your 18 year old self?

I'm going to actually change the question to what advice would I give my 8 year old self because it was at 8 that I thought my life was over. That's when I read the encyclopedia. That's when I thought I was going to die. That's when I first faced the uphill battle of living with a chronic disease.

I remember crying myself to sleep that night I read about my prognosis. I thought life wasn't fair and that I wasn't going to live to see any of my dreams come true. Well, here's what the soon-to-be 43 year old me has to say to that kid.

Dear Andy,

I know things don't seem very favorable but I promise that if you work hard, your dreams can come true. And it's ok to get down. Don't let anyone tell you otherwise. All I ask is that you seek help when you are down. A day or two is normal. A week or two is not.

You need to know some things. While it may not seem it, life is fair. In fact, it's very fair. You had a sister that didn't even live a month. You want to argue with her that your life isn't fair?

Never fear failure and don't feel high and mighty when you achieve success. Andy, I hate to be the one to tell you but you're an addict. The highs and lows are dangerous to you and your family.

Don't worry so much about how long you're supposed to live rather worry more how you live. Don't be fearful about how different you are rather be more concerned with how much you try to be like others.

And finally, I have a feeling you will some day meet the perfect girl for you. She will be one special girl and not just because of the way she handles your disease but also because of the way she handles everything in front of her. Don't screw that one up.

Oh and if you happen to have a daughter and you get a chance to name her after one of the Braves pitchers, don't name her "Glavine" or "Smoltz."

Stay positive!

43 year old Andy




I do as I'm told.

And finally

The most important thing to know about someone with a chronic disease is that we may not like the fact that we have it but many of us have embraced the fact that it is part of who we are. How much of who we are is up to the individual. I've made my cystic fibrosis platform a prominent part of my life but I understand that others prefer privacy regarding the subject. I find that talking about CF and especially joking about it, makes it easier to live with it. Still, there is a time and place to discuss such things. I do believe that awareness is a 24 hour a day, 7 day a week job and if even my presence in a room starts a conversation then that's a definite step in the right direction.

I hope that all of you are well.

Live your dreams and love your life!

Best Wishes,

Andy