Chronic Illness Part Two: Healing is Hard When Your Body Hates Everything About You

Okay, so this post should wrap up the whole reason that I'm writing these. But to start, I need to finish my list of problems. Yay!

Irritable Bowel Syndrome

This is the big one. 

Simply put, Irritable Bowel Syndrome (or IBS) is the diagnosis that they give you when there is literally nothing else that you could possibly have. If all of the millions of tests that they try on you come back negative, you have IBS. If no medicine or treatment helps, you have IBS. It's great.

When I was 8 years old, I started to feel sick every day. It started out with nausea. I never, ever threw up, but I felt nauseous constantly. Over the years, more symptoms appeared. Light-headedness, head aches, chest pain, weakness, etc. And every time a new symptom appeared or an old symptom felt different than before, we would always go back to the doctor because I must actually be sick right now, right? Wrong. It had just morphed. So sometimes the nausea felt different than other times. And sometimes the headaches or chest pain were different. And sometimes I would get awful stomachaches along with the nausea. And sometimes I was constipated, but other times it was diarrhea. Or it was somehow both. Cool, cool.

From the time that I was a little girl, I would spend A LOT of time on the toilet every day. As a kid, I would just sit there and play school by myself. As I got older, I would get really bored. This is still an issue. I am often late to things because I had to go to the bathroom and ended up on the toilet for 30 minutes constipated/having diarrhea. I remember my mom being confused as to why I never seemed to know whether I had to go number 2 or not when I was younger. But that's because I usually didn't feel like I had to until I was on the toilet. The same often applies today. But I also have to run to the bathroom sometimes because it hits all of a sudden. Which is great when it hits right in the middle of work.

IBS also meant that I missed A LOT of school growing up. I would wake up super nauseous and weak, so the thought of trying to walk around school with a bunch of books and sit through classes while trying not to pass out made staying home seem like a much better option. My mom and I actually had to go to court after my first year in Pennsylvania because the school system didn't care that I got good grades despite missing so much school, all they care about was my attendance record. They didn't care that I had a note from my mom- and often from doctors -to excuse every single absence. They decided that my mom- who was doing all that she could to figure out why her daughter was sick all the time -was being a neglectful parent.

Fun fact: I started my first ever period sitting in a court room.

As soon as the judge looked at my medical record and saw that we really had been seeing doctors and doing tests and everything, she decided that the whole case was stupid because obviously my mom was being a stellar parent by trying to figure out WHY I was sick all the time instead of just ignoring it. The case was almost immediately dismissed. 

Speaking of seeing doctors and doing tests.... From the time I was 8 until I was 18, I saw ALL of the doctors. I went to gastroenterology, rheumatology, and psychiatry departments. I was diagnosed with fibromyalgia, anxiety, an aneurysm, and a million other things that I don't remember, only for them to decide- after the medications for those things didn't help -that that wasn't it after all. I've done ALL of the digestive tests; colonoscopies, endoscopes, capsule endoscopes, barium studies, one where I had to eat radioactive eggs, one where I had to drink two giant cups of who knows what. Most of them required either fasting for X amount of time and/or a colon cleanse. I've also had CAT scans and MRIs. I've peed in so many cups, had blood drawn SO many times, had IVs, drunk weird things, etc. And everything always came back negative. 

And the doctors would tell me that like it was a good thing. "Everything looks great!" Great. Really great. I'm glad that I still look like a crazy person for feeling super sick all the time even though all tests show that I'm in tip-top condition! I'm SO glad that I still don't have a diagnosis, which means we still have no course of action to make me feel better so that I can live a normal life. Thanks so much for that Doc!

It's not their fault. But I can honestly tell you (and this is really embarrassing to admit) that I got the point where I wouldn't have even cared if they told me that I had cancer because at least then we could TRY to make me better. At least there would be a name for what I have and a treatment plan. Yeah it might not work and I'd die, but at least I would know. I know how awful that sounds, but that's what having an unknown medical problem does to you. 

I can't tell you how many times doctor's have thought that I had appendicitis only to come back to "Everything looks great!"

When I was 16 or 17, I started bleeding when I pooped. It had no correlation with when I felt nauseous or got stomachaches. It just started happening one day and then would happen every so often. Taking stool samples is disgusting. 

The blood is what kept me from going on a mission right away. 

I knew that there was no way that they would let me serve a mission with an unknown internal bleeding problem. I mean, that's one of the questions that they always ask you in the ER; "Have you had bloody stool?" Yes indeedy, three times this week! But I feel totally fine otherwise, thanks for asking!

Sorry, as you can tell, the sarcasm is strong in this post.

After even MORE digestive tests, we finally figured out that my intestines were bleeding because of my constipation. I remember prepping for this test actually. The last one that I did before my mission. I had to drink two huge cups of who knows what and have an IV stuck in my arm. The nurses were shocked when I slurped down cup #1 super fast and decided to go ahead and put the IV in while I chugged the second one. At this point, drinking mysterious liquids and having needles stuck into my body wasn't really anything new. I just wanted to get it over with. And this one finally got results!

We still didn't know why I was constipated all the time, but we knew that that's why I was bleeding, so I was finally able to turn in my mission papers after about 8 months of doing medical tests even though I had pretty much already done all of them in middle and high school. 

And by then I had started to feel better more often, so I thought that I was finally getting somewhere with this mysterious illness. 

HA.

I was in the MTC for 12 days and went to the ER twice in that time. I spent most of my mission sick in bed and was almost sent home a couple of times. Being sick all the time did nothing to help the severe depression that was going on while I was a missionary. It was actually on my mission that I was diagnosed with IBS. The doctor told me that basically if everything comes back negative but you're still crazy sick all the time, then you probably have IBS. He told me that it's triggered by stress. But listen, it doesn't matter if you're handling your life just fine mentally/emotionally or not, your body will still react poorly. So even regular, totally manageable stress can and will make me super nauseous. Even if I don't feel stressed out at all, my body will still get nauseous. But if I DO feel stressed, then everything goes to pot.

IBS also makes it really hard to figure out if I have an actual virus/flu at times because the symptoms of IBS are also the symptoms of many illnesses. So every I seem to be extra sick I get to play the "is it worth it to go to the doctor" game. Because why spend money to see a doctor when you feel like crap but know that he/she'll probably just conclude that your IBS is acting up? But then, what happens if I do get seriously ill and I don't see a doctor because I figure it's just a flare up?

Anyway, we're getting close to the point of all of this, but really quick, let me go over PTSD with you again.

Post Traumatic Stress Disorder

My current counselor told me that what I went through with my ex's abuse and felony actually gave me a brain injury. So when they say "trauma" they mean that what happened actually hurt my brain.

Symptoms of PTSD include- but are not limited to:

Nightmares, panic attacks, being triggered and having flashbacks, trouble concentrating, being extra jumpy, issues sleeping, feeling keyed up, loss of appetite, headaches, experiencing sensory overload, anxiety, twitchiness when you try to fall asleep, puking, and chronic fatigue.

I only listed ones that I have personally experienced, but there are more here and here that go more in depth as well.

As you can imagine, having PTSD on top of chronic sleep issues and chronic digestive issues is no walk in the park.

And this is the crux of this whole Chronic Illness post:

It's taking me longer to heal because of my chronic illnesses than it would if I didn't have them.

Let's look at some of the things that would help me to heal mentally and emotionally:

Exercise, proper diet, good sleep, counseling, and keeping busy/feeling productive.

All of those things are excruciatingly difficult to do when you're not only dealing with PTSD (and the anxiety and depression that's wrapped up in that), but you're also extra nauseous and extra light-headed. 

I lost my job within about two and a half months of my ex being arrested. Not because I wasn't doing my job well still even though I was majorly depressed. No, not that. I lost my job because I had to call off too much. Because I would wake up feeling so weak and nauseous that I could hardly get out of bed. Because I would try to get ready for work and almost pass out because I would get so dizzy. And so I would call off. 

And my boss tried really, really hard to work with me. He knew the situation and knew that I was going through some really intense crap and so he was more lenient with absences than he normally would be. But when it came down to it, I didn't make it to work enough to viably stay on. I wasn't fired per se, but I didn't really quit either. We kind of just mutually agreed that I didn't work there anymore. He put me down as re-hireable and said that he hoped to see me back in a few months.

I didn't work for almost a year.

And school? Man oh man, I hate when people ask me how long I have left. *Shrugs* "I might graduate......... Someday...."

Because the PTSD makes it really hard for me to focus, making getting homework done SUPER difficult. And the IBS makes it really hard for me to get to class as much as I need to. And so ever since my ex started abusing me in Fall of 2016 (before he was arrested, mind you), I've had to drop at least one class per semester and have failed some of the others. And you have to understand that I had never failed a class in my life before then. Even with missing school constantly growing up, I always made up all of the work and ended the year with all A's and B's (except for the one C that I got my entire grade school career).

I've only been able to take a few credits at a time, and even then I have yet to have a semester where I actually kept up with the classes. Not for lack of trying. Not for lack of desire to learn. On the contrary, I've had to drop some of my favorite classes. And I've failed classes that I'm fascinated by. I WANT to be in class learning. I don't really want to do homework, but I sure as heck want to succeed in college, so in a way, I do! This past Fall semester, I sat in front of my laptop trying to focus on an English assignment for a good TWO HOURS before finally giving myself a break because I clearly wasn't getting anywhere.

I want to be able to take full classes again. I want to graduate someday. But for the last two years, that has been a real struggle.

I finally have a job again, but I'm still having to call off CONSTANTLY. I've maybe made it to work every day in a week about four times since I started in April. Four. If that.

And this semester, I've been feeling sick even more often than the last couple of semesters, which means that I've also been missing more church. And I LOVE church. And I've been missing Tuesday devotional. And I LOVE devo. 

Which are two more things that would really help me to heal mentally/emotionally. I'm trying so hard to lean on the Savior through my difficulties, but I feel like I'm not doing very well because I struggle to focus when I study the scriptures each day, and I'm lucky if I make it past sacrament meeting on Sunday. I've been to Relief Society maybe three times this semester. If that.

Feeling sick constantly makes it really hard to progress in this whole healing process thing. Because there are things that I want to do and that I try to do that I know would help me, but I physically am incapable of doing them. And because I feel sick so often, when I get a day that I don't feel sick, I end up doing way too much and exhausting myself, making it a lot more likely for me to feel super sick the next day. 

And everyone keeps telling me to "Take care of yourself. Don't push yourself so hard. Be nice to yourself." and I'm so sick of it because taking care of myself means missing out on everything important. It means missing work and missing church and missing class. It means not doing fun things with roommates and friends a lot of the time because I'm in bed. But then if I do push myself, I end up feeling way worse. So where is the line between pushing myself so that I make some kind of progress, and being nice to myself so that I don't go backwards? I'm still trying to find it and I don't seem to be getting any closer.

I know that I've talked about this before and I'm sure I'll talk about it again, but I still really struggle not to compare myself to who I was when my ex fell in love with me.

That Anna was taking 13 credits, working 20 hours a week, working at the temple every Saturday, volunteering with the Disciple Leadership Council every Wednesday night, and doing it all on four hours of sleep a night because she was also doing long distance. Then that Anna was in a bike accident and added physical therapy to the mix. And she still did everything else. And she ended the semester with straight A's. She did have to drop ballet because of her injuries, but she did everything else. With no sleep. In extreme pain.

And now I can't even take six credits and work. I still work at the temple and haven't had to call off too, too much, but it's also the only thing I ever have planned on Saturday because I know that I can't handle anything else. 

My life has become a daily game of pick and choose. If I go to work, then I feel too awful to go to class. If I go to class, then I fell too awful to go to work. If I stay for all three church meetings, then I won't make it to my evening meetings. And most of the time, I actually don't end up making it to any of the above because I feel too awful to do any of it.

And not only am I comparing myself to who I used to be and what I used to be able to do, but I find myself comparing myself to other victims as well. I have a few different friends that have been victims of severe abuse, whose husbands have been adulterous or severely demeaning, and while I know that they have their own struggles, I watch them succeeding in school. I see them working and socializing and being functional. And most of them started recovery quite a while after me. And yet they seem to be so much further along than I am.

And so I'm left feeling thoroughly useless. 

Two years later and I still can't succeed in school, work, or life in general. Two years later and I've still made such little progress. And that kills me. It kills me to see my friends (who in a lot of ways have been through much worse things than me) moving forward in life while I seem to be stuck. Not because I'm not SO happy for them, but because it has made me feel even more inferior, even more pathetic. Why is it so hard for me to move forward when they seem to be making huge strides?

And something that I have had to come to terms with recently is that 1- they are struggling more than I am seeing and 2- they aren't fighting their physical health along with their mental health to the extent that I am. And that honestly makes a huge difference. Because they aren't dealing with severe nausea and light-headedness, major back pain, and asthma, it's a little bit easier for them to take the necessary steps to recover. Not to say that they aren't also incredibly strong and working through a lot, but it is important for me to realize that we are dealing with very different things. And so my healing process may actually be a lot slower than their's. Not because I'm weaker than them, but because I've got an extra layer of difficulty due to me illnesses.

Not that there aren't really good things going on in my life. I am so freaking extremely blessed that Jonathan somehow fell in love with me in the midst of all of this. My ex fell in love with me when I was at my very best. Jonathan fell in love with me when I was at my worst.

I am so incredibly grateful to have such a loving and patient fiance. I am so grateful that he wants to marry me with full knowledge of my lack of functionality. But honestly, it also kills me. Because he is the literal best person for me. But I feel so awful that he is picking up so much baggage. That he is going to have to do so, so much for me. 

Granted, I also do a lot better with everything when we're together, so I honestly think that the healing process will progress a lot better once we're on the same side of the country again. 

But for right now, with him being in Ohio while I'm in Idaho, it's been really rough. 

And you have to understand; I already felt like no one would ever want to marry me because of all of my medical problems. And that was when they were under better control. But now that I've added PTSD into the mix- which has exacerbated all of the problems that I already had -I thought that there was no way that anyone would want to be with me. Who would want to be with someone that can't hold a job? Or who struggles to do well in a single class? Who would want to be with someone that is sick in bed half the time and sobbing and having anxiety attacks the other half?

Apparently Jonathan. Bless his heart.

And I could go on and on about all of the good things that he sees in me and why he wants to marry me, but that's not the point of this post. 

The point is that chronic illness is the worst. And it really does do a number on a person. It makes life really hard even without adding trauma (AKA- brain injury) into the mix. Because being chronically ill already makes me feel useless on it's own, but PTSD has also given me fairly severe anxiety that I never had to deal with before on top of everything else. So every concern is blown way out of proportion. Even if I know in my head that something isn't a big deal, my body and emotions still run away with me and leave me sobbing uncontrollably, hardly able to breathe. It doesn't matter that I'm doing what I can, it never, ever feels like it's going to be enough.

So if you have a (or multiple) chronic illness(es), please know that you really are trying your best. Even if your best literally feels like nothing at all. And know that there are people who will recognize that you really are trying your best. There are people out there who will see that where you currently are isn't because of a lack of effort or desire. That sometimes you literally just can't do the thing at the moment. And that doesn't make not being able to do it feel any better necessarily, but it's at least nice to know that there's someone that doesn't just think that you're being lazy or pathetic.

Because being chronically ill isn't lazy or pathetic. It's being sick. Hopelessly, constantly sick. And that's seriously rough.

And if you know someone that has a chronic illness, please know that they are probably trying a lot harder than you think they are. Having a sickness with no cure is really taxing. It's exhausting, it's discouraging, and it messes with EVERYTHING. Try imagining going through every day of your life with a giant tumor that no one else can see. It still hurts and it still messes you up, but no one else can see it. That's chronic illness.

I wish that I could tell you all that I knew that everything was going to get better soon, but I can't. Because with chronic illness, you never really know. But I DO know that being sick doesn't make me a bad person. I know that it doesn't mean that I'm just not trying hard enough or that I'm lazy. Being sick doesn't mean that I deserve love any less than anyone else. It just means that things are harder for me right now than they should be. It means that healing is going to take longer for me than it might for others. Because PTSD irritates my IBS and IBS makes me sick which makes me more stressed which irritates my IBS and on and on and on. 

Being chronically mentally ill at the same time as being chronically physically ill just really sucks. A lot. But I know that I'm going through all of this for a reason. 

I saw this on Elizabeth Smart's Instagram recently and it really spoke to me: 

I ran into the teacher of the class that I had to drop this semester and we were talking about my situation. She told me that she thinks that healing is being so difficult for me and taking so long for me because I'm going to be able to use my experiences to help other people, so I have to go through extra pain so that I can understand and sympathize with others even more. And going through extra pain isn't my favorite thing that's happened in my life, but I hope that it does mean that I will be able to be more understanding of others in all different situations because I've been through all of them. Simultaneously. For a long time.

When I was younger, I would sometimes pray that since I was sick all the time, other people wouldn't have to be. And that I would take some extra trials if it meant that others didn't have to suffer so much. I don't know why I thought that that was a good idea, but those prayers are being answered. And I hope that because of the suffering that I am going through now, I will be able to help prevent others from going through similar things. 

Like Elizabeth Smart said; I would would never want to go through all that I've gone through again. But I am grateful for all that it's taught me. I'm grateful that I've been able to help people through sharing my story. And if I have to suffer so that I can help others, then I guess that makes all of this worth it. 

Does that mean that I won't still hate every second of trying to recover? No. Does it mean that I won't still get frustrated at myself and feel pathetic and broken? No. But it absolutely means that I'm going to keep doing my best to reach out to others so that they can have the help and support that they need. And so that they know that they're not alone in feeling sick, and anxious, and broken. 

Healing is hard. Healing when your body is doing all that it can to prevent you from healing is harder. But living with no hope is hardest. I know that things will be okay. Not necessarily that they'll be a ton better anytime soon, but that things will work out the way that they need to as long as I keep trying and as long as I keep trusting that God knows what He's doing with me. Those things may not have gotten me to full recovery yet, but they did bring me the greatest blessing in my life (Jonathan), so I can already see that persevering is going to be worth it.

Hang in there. I know that chronic illness makes everything really, really hard. Like you're living your life on difficult mode while everyone else is on medium. But the harder things are, the stronger you'll become. I promise.