What You Should Know Before You Judge Me for Being Home All Day

I gave up working over five years ago, five very long and overwhelming years, even before I had an “official diagnosis.” I knew something was wrong and I knew having multiple organ removals and multiple back surgeries in less than five years was not “normal” for someone in their early 20s, regardless of what the surgeon would tell me. The harder I worked and the harder I pushed myself the sicker I got, and I was running out of “non-vital organs.” The decision to stop working was mine, and mine alone. I knew if I kept working I would end up doing irreversible damage to my body, even more than I had done already.

I went through an intense grieving period. One I didn’t share with anyone because I wasn’t even sure where to start or how to explain it. I was grieving my life I had before. I wanted to finish school. I wanted to hike every day. I wanted to walk farther than from my bed to the couch. I wanted to work full-time. I wanted to make a living and support myself. I wanted to be strong and independent like I had been. I was grieving a life I had worked for and I would never have now. I was grieving my independence, my social life and my hobbies. I was trying to cope with building an entirely new life I hadn’t planned for. A life I didn’t know anything about. A life I had never dreamed I would have.

 

I had never once in my 20-some years even thought that working wouldn’t be an option. That there were going to be days I couldn’t even get to the shower, days where I would wake up on the floor and not even know how long I had been out for. There would be days where the amount of pain I was in would be so overwhelming I would spend most of it hunched over a toilet. Days spent and wasted on “miracle pills,” doctor visits, physical therapy, etc., the list goes on and on.

I have since had multiple diagnosis, multiple doctors claim they could help and then give up when I don’t fit into the box they originally thought. I have undergone many treatments, some which made me sicker, some which helped a bit but not much, and some that were completely ineffective. I have yet to find a treatment that works, over five years after I started looking. I have been found curled up in the fetal position crying hysterically more times than I would like to admit. I have leaned on other people for help more than I ever wanted to, and I have had to give up things I truly loved because I physically couldn’t do them anymore. I have spent more days in my house than I ever imagined I would in my 20s and I have hidden myself (and my symptoms) from friends and family, because I didn’t want them to see how bad I really felt.

So, before you judge me for being home all day, please keep these things in mind:

1. Just because I don’t look sick doesn’t mean I’m not. I literally fight my own body every single day.

2. I wish I could work – working would mean I am healthy enough to function and hold down a full-time job.

3. Being home is not a vacation for me, it is where I have to be so I can try and get well.

4. Being home all day is incredibly lonely. I feel horrible for my husband. I feel like I latch onto him when he gets home because he’s usually the only human contact I have.

5. There will be days or weeks where I am completely unable to leave the house. Imagine being confined to a 500 square foot space and being too sick to leave for a week – it’s not as fun as you think.

But, as horrible as having a chronic illness has been, it has also been a bigger blessing than I could have ever imagined. I have learned to live in the moment. To see the good in every day, and I have been given a unique perspective on life, one which very few people ever have the privilege of receiving.

I have learned how important the little things are in life. I have learned that taking the two seconds to send a text to let someone know you love and care about them is invaluable. I have learned that no matter how bad the bad days are, I am going to make it through them. I have learned to develop new hobbies and take joy in completing minor tasks. This journey has been rough but I am finally in a place where I am developing a new life and it’s one better than I could have imagined.

To my fellow chronic illness warriors, you are more than a paycheck, you are valuable, you have been given an opportunity not many have; you get to see value in things most people take for granted, and I promise it’s wonderful. Take time to grieve your “old life,” but don’t take too long, because your “new life” is waiting.

Thinkstock photo via Wavebreakmedia Ltd.