The True Cost of Living with a Chronic Illness

6:00:00 PM

Chronic illnesses have taken over my life. I wish it weren't true, but it is. They affect almost every aspect of my day to day life. They even affect the lives of those around me. However, not many people know the true cost of living with one or more chronic illnesses. 

Earlier this year, I wrote a piece titled, "Dear Chronic Illness, I Want to Say Thank You." While I am thankful for certain results of being diagnosed with a chronic illness, there are still more costs than benefits. Unfortunately, they aren't just limited to financial costs either.

Living with a chronic illness can sometimes mean...

... having to make lifestyle changes.
More often than not, your life will change with a new diagnosis. You might endure chronic symptoms, problems with mobility, and more. There are times when you won't be able to do all of the things that you used to be able to do and sadly, you'll have to learn to accept that and adapt. Everyone that is diagnosed with a chronic or illness will experience things differently, but it is rare for someone to continue living life as they used to.

... listening to unwanted advice. 
It's crazy to me how everyone and their mom will have an opinion on your body and your lifestyle choices. Although they haven't been with you through your chronic illness journey, they still think that they have a right to tell you what you need to be doing differently. I've been told, time and time again, that I need to "exercise more," or "eat better." But realistically, I know that I can't. My body doesn't have the energy or capability of exercising and I have a strong intolerance to a variety of foods. However, people still think that they know how to fix your illness, even when the doctors can't. 

... making sacrifices.
While the type of sacrifices may not all be the same, many chronic illness patients have to make them. Personally, I've had to drop out of school, quit my job, and even shut down my two businesses. I might not have been a fan of school or work, but I never thought that there would be a day that It was no longer my decision to go. Beyond that, I've had to give up my dreams of being a successful photographer and artist, because I can no longer walk long distances, be outside, or stand for long periods of time. So, I've had to change my dreams and pursue other passions. 

... being judged by strangers.
I think being judged by strangers, is the hardest thing that I've had to deal with since being diagnosed.  Society has an idea of what they think people with chronic illnesses should look like, and they judge anyone that doesn't fit that description. Honestly, I have yet to find my way around this. I'm judged for not looking sick enough, because I do my best to hide it. I'm judged if I use a mobility aid, because people assume that I'm lazy. I'm even judged when I leave my wheelchair at home and attempt to walk on my own, because passersby think I'm just another drunk millennial stumbling around. I just wish that one day, I can end this stigma. 

... spending way too much money on medical expenses. 
Even with insurance, medical expenses can be ridiculous. It's been two years since my first emergency room visit and I've only just now paid off my hospital bills. In addition to that, I have to pay for my monthly medications which can add up quickly. I'm currently taking nine prescriptions and two vitamins a day, plus I get an injection every three months. Many chronic illness patients also have to pay for health insurance, co-pays or office visits, and more. I honestly couldn't tell you how much my husband and I spend in medical expenses each month, I've lost track.

... feeling like a lab rat.
Diagnosing a chronic illness can be difficult. It often takes weeks or months, and in my case, years. I've been diagnosed with 15 chronic illnesses and counting. I am continuously sent in for tests, blood work, and scans in hopes that we are able to learn a little bit more about my situation. As all of my illnesses are incurable, my doctors have been experimenting with various medications in order to lessen my symptoms. I'm constantly introducing new medications to my body, switching doses, and trying new treatments then patiently waiting for the results. 

... losing out on time as well as income. 
Since my first diagnosis, I have spent a crazy amount of time in doctor's offices. It seems like each chronic illness has a different specialist and I am constantly meeting with each one. I've had to create a medical binder in order to keep track of them all. It wouldn't be so bad if it was just doctor's appointments, as many employers would understandably approve the time off. However, many of those that struggle with a chronic illness or chronic pain have to work less or are unable to work all together. As I mentioned in an earlier post, "Chronic Illness + Employment," many of us struggle with the most popular job requirements: the ability to lift/move 50 pounds, the ability to stand for long periods of time, the ability to show up to work on time, the ability to follow through with scheduled shifts, and the ability to find reliable transportation.

Needless to say, living with a chronic illness is difficult. There are ways to find silver linings, but many of us struggle with the true cost associated with our diagnosis. For some of us, that cost is minimal, but not always. I know first hand that living with a chronic illness can be overwhelming. That is why it is so important to have a great team of doctors, supportive friends and family, and a platform to educate those of us that don't understand what we're going through. 

Please help me inform others by sharing this post on social media! 

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