How Your Life Changes With Chronic Illness

What’s one of the worst things to experience in life? Being chronically ill. Chronic illness or chronic disease can add challenges that are undesirable to one’s health and to one’s daily routine. I did not see myself transitioning to a wellness writer for my travel blog, but I’m starting to see how important it is to just feel well and to inform and advocate on that. How can you expect to just get on your adventures if you aren’t in the right state to feel well?

There are weird things that come with my chronic illness. (It’s Valley Fever, a fungal infectious disease that comes from the desert soil and travels to your lungs to affect it and other body parts possibly; Watch my informative YouTube video on it here.) I have good days on random days and when it’s good, it’s 60%-70% good. When it’s bad, it’s really bad. I flare up randomly and I can never predict it. I’ve even traveled in pain before, but I was able to manage and have to accept that actually resting in a hotel room for hours is normal.

What are some painful things I experience? My lungs and chest hurt, but my muscles start to hurt and feel weak. I also have to deal with painful changes whenever my hormonal cycles come. I am tired almost every freaking day.

Living with a chronic illness is a new way of life. It can be inevitable to get as I was just healthy the year before 2020, hiking sooo much and living normal routines. But, when I was newly affected, I was so confused, depressed, and not to mention, for many months, I had to go through all the cycles of grief to simply accept I have this disease. But, there’s one good thing about managing chronic illness: It gets easier to deal with over time.

Maybe at first when you’re newly diagnosed or experiencing the symptoms, you are just experiencing the start of a series of life-changing pain and a conflicted mind on how to deal with those and how to get help for it. But after a certain amount of time has passed, you’ve just accepted how your life will forever change and even how you’ll evolve as a person. 

I will never know why I had to get sick, and it’s so easy to question God, but I believe it helped me become a more compassionate and patient person who knows wasting time isn’t the way of living at all. Even before I was sick, wasting time was always something I hated to do after having done it a lot as a young child, but this time around, I know the value of truly living and loving. And before I got sick, I never understood my chronically ill friends until it happened to me.

I have talked about here the 8 ways on how your life will change with chronic illness, whether it’s new to you, not new to you, if you’re perfectly able-bodied and want to prepare for the inevitable, or you personally know someone who is dealing with a chronic illness. In 6 words, I can sum it up: It is a process to heal.

1.  Cancellations to plans often become normal.

I was never the type of person to cancel on plans prior to being sick. I would always try to make an exception to make it to people’s invitations and even go out of my way to make an appearance. I showed up a lot for others than myself, a lot. However, cancelling is something I will have to do and yes, I hate it so much, but you have to listen to your body first and foremost. 

If you really don’t feel you can be yourself and make it to a plan without having to hide your pain, then you are given the choice to go to the plan and hide how you truly feel or don’t show up and just use the time to rest as often as you need it. If your friends get constantly frustrated that you always cancel plans and make it a big deal or think you’re constantly cancelling as an excuse, then they’re obviously not understanding about your condition and you should probably reconsider keeping them. You don’t need to keep re-explaining yourself.

2. You become way more grateful than you’ve ever been.

I was always grateful for every person I come across and every experience and opportunity I can grab. Being a humble person has never changed within me, and I think the combination of overcoming adversity and growing older has made me feel more humble.

When you’re sick, you don’t like to no longer take things for granted, ever. You think the idea of taking things for granted is a waste of time and also energy draining. You may feel drawn to take advantage of things like you’ve never done before because you know the value of time and know you may not have the energy for it another time.

You might notice yourself becoming way more empathetic for others because you understand what overcoming pain is about and when you hear others are experiencing pain, you want to share how you were able to manage your own.

3. You learn to set boundaries better as you learn to know your limits.

Cancelling plans is a way of setting a boundary because you’re standing up for something you simply cannot fulfill due to your chronic illness. You learn to set boundaries better in life after you start to do it. I have to set boundaries when I know I have limits. I can’t stay out longer than I have to when I feel like I can fall asleep out of nowhere and I cannot let myself go do something when I feel like my body isn’t capable of handling it at the time. Putting a time end to plans is a smart idea and just knowing when it’s time to hit the hay.

Think of your limits as a cup of liquid: When it overflows, you’re pouring out so much liquid and you won’t have enough space to fill in more anymore. When you have no liquid at all in your cup, you definitely cannot pour from an empty cup. This basically means if you have too much going on, you can’t continue to give your energy and if you have too little, you can’t continue to give any energy of yours.

4. You won’t be able to do your hobbies for weeks on end.

I wish I could hike a lot more like I used to and I wish I could just go do spontaneous trips, but my body doesn’t work that way anymore and I may have to deal with feeling ‘off’ when I do those things as a consequence, while I do those things or after I come back. 

I would put my hobbies off for a few weeks because my body feels sick during that time and sometimes writing for me (for my blog) uses a lot of mental energy, so I may not write continuously for weeks when I’m resting my mind and body. You can’t always choose a hobby to distract you from your pain because it’s simply a lot of time and energy to do sometimes but I guess that depends on what your hobbies are and how much of your body strength you have to use.

5. You’ll have to figure out how to fully manage your finances and work life.

This is probably the biggest hit in my life. Managing finances is everything! You can’t make up those finances unless you work. 

I had to quit my full-time job in March 2021 and take a nice pay cut simply because my physical health declined and so did my mental health. I was just not happy and could not see myself thriving anymore with this chronic illness and it was leading to burn out (again, for me). Fortunately, I rediscovered freelancing in marketing and also, my blog was starting to pay, and I took up smaller gigs like being a teaching assistant for Arizona State University’s digital marketing bootcamp. And I also had a few opportunities to take photos of people for their photography through networking.

You may have to find a new way of making money, whether that’s just choosing to work part-time or growing your business if you have had it as a side gig. You might also have to make adjustments to your life such as choosing to live back home with your family or cut back on other expenses.

It sucks that illnesses cost you so much because you need to constantly do doctor appointments, pay health insurance, and then your medication might also be costly. You might also apply for disability, but getting disability is SO hard – it can take months to hear back and you might not even be approved for the first few times. Some people had to hire lawyers to get that disability as I’ve heard from an online support group I’m in!

6. You question your future.

This is going to happen often when you’re lying in pain and you wonder how to be strong for yourself. It’s normal to question what’s next when it’s hard to imagine it. For example, I often think about how I’m going to continue to find the strength to go on these travel adventures that obviously require my energy and I only have so few good days to use. Going on adventures is very important to me because it helps me continue to create valuable content for my blog. It’s my job! I also questioned if I could ever find the healthy strength to work a 9-5 marketing job again as marketing is my career of 4+ years. Luckily, there are alternatives to working 9-5s (such as freelancing like what I’m doing now), but I did want to get back to a full-time job with all the benefits. It just wasn’t meant to be, for whatever reason.

I’ve had my days where I would be so down on the thought of not being able to create new travel content if I get really sick consistently for months at a time, but I try to be more positive and not let it defeat me. My sister told me once “you have to know you do have a future”, which means to reframe my mindset to positivity in times of adversity.

7. You become more active in talking openly about illness.

Along with being an ill person, you may choose to become an advocate for it. It’s a great way to deal with your pain by speaking out words of encouragement for others and educating the able-bodied community. 

Like I said, I did not write much about this topic until I became sick and I did not think of adding this type of content onto my adventure travel blog. But I know I’m not the only one who is going through this and I know any of my readers who seek my blog may soon understand they’re not alone just by reading this stuff. And to me, that enlightens me to know I can be that online “friend” who understands. Awareness is much needed in this complicated life and through periods of healing.

8. You may seek hope in things you’ve never thought can inspire you.

You may become more inspired than you already are in life. Who knows if your chronic illness might inspire you to birth a new life project?! Or make you want to learn about things you did not care about before? I’ve always been a person that can get easily inspired with whatever, but I started being more passionate about learning about the human body as someone who was not interested in the medical field like my parents.

I also started looking up to people who have faced hard challenges and accomplishments in their lives and usually I learn about these stories through watching documentaries. Documentaries like Nepali mountaineer Nimsdai Purja conquering the world’s highest 8k+ meter peaks in the movie “14 Peaks” and Wim Hof, also known as “The Iceman”, who is able to withstand freezing temperatures for long periods of time and he has a wonderful documentary on it on Vice.

These superhuman men had something tragic happen in their lives at least once and they found hope in becoming a stronger person by knowing they can author a memorable and inspiring life by never giving up. And you can too, chronically ill or not.