Being Chronically Ill is a Full-Time Job
Last updated: January 2023
Being chronically ill is absolutely, without a doubt a full-time job!
Obviously, the severity of a person’s disease will dictate how much time, energy, and money is spent on “coordinating” everything that goes alongside living with a chronic illness like inflammatory bowel disease. But still, regardless if someone has the mildest form of IBD, any intelligent person would still need to go for routine colonoscopies way more than your average person.
There are also other tests and procedures that come even if a person only needs to see their gastroenterologist once a year for a check-up. Blood work usually comes with that check-up which alone means an appointment, taking time out of your schedule, possibly fighting with insurance companies over the correct place to send the specimen, and there often are out-of-pocket expenses. AND THAT IS JUST FOR BLOOD WORK.
Imagine what someone who has moderate-severe Crohn’s Disease or ulcerative colitis and is a frequent visitor of the hospital, has needed to undergo multiple surgeries, continues to need to make doctors' appointments for follow-ups and/or possible complications, tests, procedures, blood work, imaging tests (and there are many for IBD!), the list goes on… needs to deal with.
Many IBD patients need to either inject themselves weekly or every other week in order to keep their disease in remission, or go for infusions every month-two months. Plus, there are other pills and medications (some are even enemas!) that need to be taken depending on a person’s individual disease needs. Not to mention any supplements, vitamins, nutritional drinks, etc that either a doctor has recommended or the patient feels can help their health.
I don’t think people realize how hard it is to be sick
Not just for the obvious reasons like it can impede on your life and cause pain but there is so much “behind the scenes” that goes on that is impossible for someone who hasn’t experienced it themselves or is the caregiver of someone who is chronically ill to really understand.
It is hard, though. Physically and emotionally. When you are physically ill, in pain, cannot focus, couldn’t sleep if your life depended on it, are stuck in the hospital, recovering from surgery, losing your dignity with each passing moment, feeling despondent and overwhelmed, trying to understand what is happening, nervous about an upcoming test or appointment, etc… the last thing you want to deal with is the “business” part of being ill.
Some Things I am Referring To Include:
- Making sure doctors/surgeons, hospitals, anesthesiologists if needed (sometimes they don’t even cover insurance but are just assigned to you,) are all in order is difficult and takes time and energy that most patients don’t have. Not to mention, fighting bills or judgments.
- There was one time that my insurance denied my surgeon the ability to perform my operation because they claimed there were many other in-network doctors who could. When the list was given to my parents and me, it was all names of gastroenterologists who obviously were not equipped to do any kind of surgery, let alone a complex one. There was an appeal process which we won but again, took time, energy and came with a lot of frustration and also put my much needed surgery on hold - forcing me to suffer even more.
- Associated with not only needing to be cared for at home but blood drawings, tests, procedures, and countless doctor’s appointments. People generally know when you have had surgery but for most of us, we don’t broadcast that we are having an appointment or getting blood work done to see what is going on with our invisible illness. If there is something to tell afterwards, we may share with the people closest to us but generally speaking (unless you are like me who shares my experiences with the world in order to show others they are not alone and hopefully raise awareness in the process) people don’t advertise all of these things we go through.
- Not only are the above physically grueling but emotionally as well. Plus, we have the added stressor of getting to these appointments (and getting home from some of them.) Therefore, we need to rely on others more than most of us would like. Oftentimes, I have been way too weak to even drive to my doctors appointments, let alone be able to withstand a drive plus a test or procedure. This has made me feel like a burden so often. It also causes me enormous anxiety when I am in a vulnerable state and need to ask for help. Oftentimes I will push myself and then pay for it for a week later.
People who don’t understand
- ...what life can be like with a severe chronic illness like IBD (Crohn’s Disease and ulcerative colitis) often say hurtful things that aren’t meant that way but regardless, it is how most of us take them. For example, “You are so lucky you don’t have to work and can sit home and relax all day.” While someone may mean well by saying that, it is out of sheer ignorance and can make you wanna scream. I do believe most people who suffer from a chronic illness work harder than those who have careers and more traditional lives. That is just my opinion though. :)
- We have to constantly prove ourselves to not only the people in our lives but to medical personnel as well. We are reliant on them for help which often makes it so we have to continue to see doctor after doctor until we find one that actually believes we are suffering and is willing to help. It can take a lot of time and energy and so much self doubt when you are being constantly dismissed and you know something is wrong. Most of us persevere like soldiers with constant tests and all of these awful, traumatic things just because we are so desperate for answers. This whole process can suck the life out of you!
- Not only does no one with a chronic illness want to be saddled with a disease but we often have to spend a ton of money on dealing with it. Between all of the things I have mentioned above plus prescriptions, the bills can be outrageous. And that is just for people with insurance. Given so many people who suffer from a form of inflammatory bowel disease (IBD) cannot work, affording insurance is often an impossible task.
- For those people who either have a significant other that is able to work or can remain on their parents insurance, they are the lucky ones in my opinion. Regardless, the financial stress of the bills that continue to keep piling up because of non-stop health related things can add so much stress to not only the patient but the entire family as well. It can take it’s toll on marriages, other relationships, cause feelings of guilt, among other things. Not to mention, when all of the money is being spent on medical bills, there is often little (if any) left for enjoyable things.
If you are reading this and feel overwhelmed by not only living with Crohn’s Disease or ulcerative colitis but also all of the business aspect of being sick, you are not alone! It can be awful in so many ways. Please share your stories and let it out. It will not only help you, but allow others to see that others can relate to their struggles as well.
Does living with IBD impact you financially?