One of the best ways I've ever heard living with a chronic illness described is a guy who said it was like living in a world where everyone had a self driving car that no one had to do anything with to get to function really well, but then one day you wake up and suddenly you have a manual car, and you have to put in all this extra work and effort just to turn it on, and go a few blocks while everyone speeds past you. Unfortunately for those living with chronic illnesses, they cannot be prevented by vaccines or cured by medication, nor do they just disappear. Most will have some period of remission for months or years, but will eventually get sick again or learn to live with chronic pain, need to alter or increase their medications, have surgery, change their lifestyles, or it may lead to an early death due to complications. From my experience and the experiences of my friends, here are 10 things you learn living with chronic illness.
1. You learn to live with never ending fear/anxiety
Most people fear the possibility of getting sick or dying somewhere far off in the distant future, but when you know you are already essentially sick for life, you know that to fear such things is your reality. You sit and wonder sometimes when the next thing is coming or when you develop something minor, if it's the gateway into something major. There is a constant battle to quiet these thoughts or suppress them for your own sanity. You also have fears when it comes to dating, starting new jobs, and meeting new people because it means you have to sometimes expose your illness to them and share things that you may not even be comfortable sharing to explain why it is you're constantly sick, or take medications, or may need some time off from school/work/activities.
2. Your illness doesn't care what day it is
So many days that should have been fun, great, exciting days, birthdays, events, hangouts with friends or family are often RUINED by chronic illness. Your body doesn't know it's your birthday, whether you have an important meeting, whether you have finals in 2 hours, or whether or not it's your best friends wedding that you're in...it...does...not...care. It is one of the heart breaking lessons you learn early on.
3. You hear the same stupid advice/anecdotes over and over
"Just be positive" is literally my favorite. People say it like it's supposed to solve everything...if only you were just a little more positive, you wouldn't be in so much pain or so sick you can't get up from bed. When is the last time you had, say, the flu, and you were like, you know what, despite my 104 fever, getting the chills, and coughing up a lung, I'm going to put a smile on my face and walk around like nothing matters. Face palm. People who are irritatingly healthy all the time, love to give you the same old tired anecdotes and "helpful" advice about how to manage your illness that they saw in a movie or read in a Pinterest post that one time or tell you, "if it were them, they would blah, blah, blah." Skip the advice and just be there for us and be a friend.
4. You learn to loathe your insurance company/pharmacy
A lot of people have gotten injured or sick that one time and had to deal with hospitals and doctors and pharmacies, and it was annoying, but that was it; one and done. For those with chronic illness, it's a constant crazy battle sometimes week to week or month to month for just about everything. They decide one day they don't want to cover your medication or a procedure you need, or you switch doctors and they lose all your files, or you're dealing with a government that's fighting the insurance companies at every turn, or you have to sit on a phone for hours of back and fourth for approvals, or you go to the Pharmacy and stand in a very long line to pick up your medications and they aren't ready...again.
5. You learn who your real friends/family are
It's nobodies fault that you are sick or that you'll get sick, and it certainly is not fun sitting by the bedside of someone who is sick or having them cancel on you 20 times. When you are out of remission and at your lowest and sickest, you see who really is going to be by your side or at the very least understand that you're not just cancelling plans for the fun of it. You learn to cherish those people, and trust and love them above all else because they understand that you don't have a choice to be where you are, but they do, and they've chosen to be by your side when you need them the most.
6. You know the stages of chronic illness very well
When things are good, you cherish every second of the good times, but when things aren't or even if they are, most take a couple laps around this cycle. It is really hard knowing you have this elephant on your back that can wreak havoc on your life at any minute. One moment your life is going well, you're in control, and the next, just about everything is out of your hands and you have no clue what the next hour or day or even year will bring you. Depression, anger, and isolation are very common.
7. Hope is a double edged sword
When you are chronically ill, you always want to hope for the best and that a cure will come in your life time in time for you to be able to do something with it, but that hope is also a double edged sword. Every well meaning friend and family member will send you literature and links to this or that Dr., or latest book, or new research, or holistic holy man that promises that they have the cure. Welcome to the land of disappointment and frustration. For a lot of people, you have to put on your skeptical hat, and delete those emails and decline those trips to the desert to get cured over the weekend because they will lead you to a lot of headache and heartbreak if yet again something doesn't work.
8. Your bank account is a water bucket with holes in it
Even if you are lucky enough in life to have insurance and even luckier to have a great job that pays you really well and provides you with good insurance, the costs of life long medical care and medicine are astronomical. A one week stay in a hospital or one surgery could buy you a luxury car or put a healthy down payment on a house in a ritzy neighborhood. The financial burden is one that on top of everything else, you have to constantly deal with and manage while some doctor tells you, "stress will only aggravate your condition." LOL, really?!?
9. You learn your limits
You have to sometimes develop a new way of living your life. There are days I would love to go out and hang out with friends or go for my usual run and I can't. When you ignore your body, you can pay for it dearly and never more is this true living with chronic illness. Your body, even when in remission, is constantly fighting with your help, to stay that way. Stress, diet, lack of taking medications, doing too much...a lot of things can provide the triggers for your condition to get worse OR you can literally be doing everything right, and you still get sick! Learning to take a step back and listen to your body and alert those around you that, you just can't today, becomes really important in your fight to stay as healthy as possible.
10. Remission is everything
With chronic illness you can endure weeks, months, and years of being sick every single day. It can be an absolute hellish nightmare, but if you are lucky enough to know remission, even if you only experience it for a short burst, it's like coming back from the dead and being told you can start fresh. You cherish those moments more than anything else because you know how quickly it can end, so you learn to really use your time and do and be everything you can when you have your health.
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