10 Things I Want You to Know About My Life with Chronic Illness

On June 30, 2013, my life changed. I woke up with an excruciating pain in my abdomen. I ran to my parents’ bedroom gasping, “I need to go to the hospital!” Before this happened, I had had little whispers for a few years prior that indicated maybe something was up with my insides, but those whispers turned into a scream when my ovary twisted two times to alert me that I had a 14 cm cystic mass taking up most of my pelvic area. After spending a day in the hospital trying to figure out what was going on, a well-humoured gynecologist told me that I would need to have emergency surgery, but not to worry as this procedure is very common and straight-forward. So after my initial panic faded, I had an optimistic outlook: maybe I would even feel better after this surgery! Maybe I wouldn’t always have to undo my fly after meals because of weird discomfort. Things would be okay.

I never fully recovered from that surgery, and I still don’t know why. The gyn. that did my surgery told me that I had endometriosis, but if I started the pill right away, everything would be fine. But everything was not fine. And almost immediately after surgery I started having weird digestive problems. This eventually evolved into chronic discomfort all over my body, painful periods and ovulation, bouts of anxiety, depression, and paranoia, migraines, and what felt like a million other unrelated symptoms at that time. Fast forward almost three years, 11 conventional healthcare practitioners, 10 complementary practitioners, thousands of dollars and hours, and here I am with a hypersensitive nervous system, chronic hypoglycemia, a hurting reproductive and digestive system, a very confused immune system, and a body that can only tolerate apple sauce, pureed squash, avocados, bananas, and a hypoallergenic meal replacement.

I am not sharing my story because I want people to feel bad for me. I really don’t. In fact, my life is really great outside of my struggling body. I live an extraordinarily privileged life and I don’t want to take that for granted. I am sharing my story for a few reasons: 1) Yes, shit happens, but that shit can be redeemed. 2) There are a lot of people that suffer from invisible illnesses (people you probably see every day), and I want to bring awareness to that fact. 3) I think being honest about my struggle in this way may bring some healing to me. 4) Maybe, just maybe, someone who reads this will relate to my experience and feel a little less alone. 5) So that I can look back at this and remember what is important to me when I am having a hard time. 6) Everyone has a story and I think they should all be shared. 7) I have a few things I want my friends and family to know about my life with chronic illness.

10 Things I Want You to Know About My Life with Chronic Illness

*My thoughts about things change from time to time, so maybe one day in the future these won’t be the things I want you to know about my life with chronic illness, but until then..

1) God has not abandoned me and, boy, do I know it.

I have felt closer to God these past three years than I ever have. Perhaps it is because I’ve never felt I needed Him so intensely. When I have days, or weeks, or months where things just seem to be getting worse no matter how hard I am trying to give my body a break and feed it the things it needs to get better, there comes a point where I realize that this is all in God’s hands. When I am alone and in pain and feel like giving up, the most healing thing for me in that moment is imagining myself through God’s eyes and feeling how much he loves me. I know that God doesn’t want me to suffer, but I also know he has the power to take this suffering away. If I am still suffering, it must be for a reason that will ultimately bring me more joy than if I were to be healed. If it weren’t for my confidence in God’s plan for me, I don’t know where I would be today.

2) I am trying.

Sometimes I get this feeling that people assume that because I am not actually getting better, I must not be trying. I have never stopped trying. I have put more time and money into taking care of my body than I ever thought imaginable. BUT. Sometimes my body needs a break from trying things. Sometimes my spirit needs a break from trying things. But I trust that these breaks are doing me more good than if I kept pushing when my body is telling me no.

3) Doctors don’t always know everything.

Wouldn’t it be wonderful if doctors weren’t human and actually did know everything? But they don’t. I always have people asking me, “What do the doctors say?” And when I say that they don’t say much, or that they haven’t been able to find anything wrong, people might say things like, “Oh, well why don’t you just start eating normally then?” or “Well if they can’t find anything wrong it must be all in your head.” I think there are more loving ways to support someone who hasn’t been able to eat real food for almost a year.

4) I would eat that pizza if I could.

So trust me when I say that I can’t and don’t push it. 🙂

5) I might not ever get better.

I feel that most people in my life expect me to always be getting better, especially if they don’t know me very well. I may have seen them a month ago and they ask me if I am feeling any better and my answer is always, “Not really.” Every time I say it, I feel like I am letting someone down or as if I need to apologize for still being sick. The usual response to me saying “Not really” is “Well you look really good!” I appreciate that you think I look mighty fine, but the fact that my illness is invisible to you somehow doesn’t make me feel any better. I do realize, however, that these comments come from either a place of really caring for me or just not being sure what to say, so I get over it really quick. The truth is, I wish that people would be okay with me not getting better, because than I wouldn’t feel the pressure to be better. Help me be okay with where I am at.

6) My life isn’t what I thought it would be and I am okay with that. Really.

For the first 21 years of my life I had dreams of becoming a teacher and having lots of kids. I thought that was what would bring me fulfillment in life. I am currently in a place where I don’t know if I’ll ever be well enough to finish my Ed. degree. I also don’t know if I will ever be able to have children. Everything is pretty up in the air. But I am happy with what I am doing with my life. I have the most loving husband to share my life with. I have amazing family and friends. I enjoy my work as a substitute EA, and I have a God who loves me. Music exists. You don’t have to feel sad that I might not ever be a teacher. Or that I may not ever have kids. Yeah, these aren’t ideal situations. But I don’t need them to feel like my life has value.

7) I can have joy every day in my life with my illness.

My life isn’t my illness. It’s far more than that. And to be honest, I do have joy every day in my life. Even when I am having a hard day, the hardness of that day isn’t everlasting. I laugh constantly. I cry tears of happiness sometimes. I look forward to things. My life isn’t over.

8) I am not the fragile person you might think I am.

I am strong. Stronger than I ever was.

9) I wouldn’t want to go back to who I was before I got sick.

This used to be so tempting to me. I would day dream about how awesome things were before I got sick. But truthfully, things are a lot better now. Sure, I can’t eat pizza or pie, but I am a much better person now. I am much more satisfied with my life. I know what is important and what isn’t. Life is simpler. I feel more capable of loving other people. Ultimately, my life has much more meaning than it did before.

10) All I want you to do for me is pray and hang out.

I think most people like to fix things that are broken. But I do not want you to fix me. I just want to have you in my life. If you still want to fix me, pray for me. Nothing could brighten my day more than if you say you are praying for me. Pray that I have strength, faith, and healing. Also pray that one day I will be able to eat pie. Because that would be awesome 🙂

IMG_5251 (2)

Charlie

IMG_6751

This summer I had the privilege of being a direct support worker in a couple group homes for men with varying disabilities. There was a man (we’ll call him Charlie) who was my age at one of the homes I worked at. This home is for people who are quite dependent and need a lot of assistance with personal care. The first time I met Charlie, I was intimidated and a bit unsettled by his appearance. Charlie was a bit shorter than me and much skinnier. His back had a distinct curve and he had a big bald spot on his head, maybe from rubbing it against walls. I hated that I felt uncomfortable around him because of his appearance, how superficial could I be? It took me a while to warm up to Charlie, and it took him even longer to warm up to me, but by the end of the summer I really truly cared about Charlie and loved working with him.

Charlie loved to go for walks and would walk for hours every day, but only if there was someone to hold his hand. At the beginning of my time spent at this home, I dreaded taking my turn walking Charlie outside. My pain often got worse with walking and I always got exhausted from his long walks. But, as summer passed, going for walks with Charlie became the highlight of my day.  Charlie didn’t smile much (he was also nonverbal) but as soon as you stepped outside into the sun with him his face would light up with a big toothless grin. Often he would start dancing and laughing as if he had just received the best gift ever. Charlie made me realize that I take gifts like that for granted. I am often too busy trying to feel good or feeling like my body sucks too much to enjoy life.

Charlie’s story is really heart-breaking. Before he had come to his last two group homes, he was shuffled around in the foster care system. Charlie was really sick before coming to the home that I worked at. He had a hard time keeping his food down and would vomit throughout the night on the daily. Apparently his last foster home was especially bad. At his last foster home, his caregivers would lock his door at night and let him out in the morning and clean up the mess then. When Charlie came to our group home, he was just under forty pounds and about twenty years old. Thankfully, shortly after coming to our home, Charlie had a surgery that made it easier for him to eat and to keep his food down. When I started working with him, he had reached almost one hundred pounds and he had some newfound peach fuzz on his upper lip.

During the summer, I was reading the book Where is God When it Hurts by Philip Yancey. There was a section in that book about having hope in the resurrection. Up until this past year, I had never really given much thought to the idea that my body may one day be resurrected and transfigured into perfection. In fact, I don’t think I really believed in that teaching at all. But when I went for walks with Charlie and held onto his hand tight, I couldn’t stop thinking about it. Charlie was growing a lot this past summer and I started to imagine what it’d be like if one day he started to be able to communicate with words. What if one day I could have a conversation with him without it being one-sided? Charlie got really sick at the end of the summer, and he stopped smiling when we went for walks. One day while walking, I realized we were both in pain and wanted the walk to end. I started to put my faith in there being something after this life. I imagined meeting Charlie again one day and seeing him for all that he is in his transfigured body, and I couldn’t wait.

Charlie passed away a week after I stopped working at his home. The summer before this past summer I had applied to work at Charlie’s home in a different town, but turned that opportunity down last minute. When my supervisor asked if I wanted to work at his home in the town I was living in at the time I was very reluctant because I didn’t like the idea of having to do a lot of personal care. I am so glad that I didn’t miss my chance to meet Charlie because he made my summer so much more meaningful than it would have been otherwise. Every time he smiled in the sun, he reminded me that I should be smiling, too.