Impositions.

Introduction: I was recently told, while talking about how rarely I’ve been able to explain my disease in any meaningful way to those around me, that I don’t have enough faith in people.

So, talking about chronic illness isn’t easy. I’ve learned that from time to time it’s necessary, both for my own sanity and possibly for purposes of public awareness. Even when I feel the need to get something disease-related off my mind though, it’s still tough to talk about the majority of the time. That said, I’m sure it isn’t easy for people to listen to, either, and that’s what this post is about. I’ve had people shut me down mid-sentence and tell me that I should really be talking to a “professional,” get frustrated at their lack of ability to solve my problem (which I don’t expect a solution to – sometimes I just need to vent), get upset and tell me how sorry they are every time they see me because they’ve decided that my existence is so difficult that it warrants regular apologies…there’s a myriad of reactions, but the truth is, most of them aren’t good. Or at least not particularly helpful, and in many cases, my venting seems to have left a permanent imprint on the mind of the listener in some negative way. Perhaps I’m reading too much into people’s reactions, but the deeper I delve into my story, the more likely people are to display a little bit of the anger, frustration, and sadness that I myself have felt when considering my situation.

Now, it would be really egotistical of me to assume that in a couple of afternoon heart-to-hearts I’ve made such an impression that any negative feelings actually come into their daily lives because of it. Actually, those feelings would probably only occur when they ran into me, possibly only even if they ran into me and I happened to be having a bad day or feeling sick. But the point is, no matter how minimal it might be, that is anger and frustration and sadness which wouldn’t exist if it weren’t for me unburdening myself on them.

Of course, if a relationship of any kind goes on long enough, chances are we’ll do something or say something that is hurtful to the other half of the pair, but in this case, it would be doing so with conscious knowledge of what the reaction will probably be. So, the question that I have written this post to pose is, at what point should we keep it to ourselves? Just box away our feelings instead of consciously hurting another human being with a story of a painful past. Or, probably smarter, try and get as much catharsis as we can out of, say, writing about it instead. That’s a big reason why I started this blog.

I’ve had people become so frustrated, and say “Oh, but I’m happy you trusted me with this though!” I’ve recounted events from previous hospitalizations only to look up to see my friend in tears at something that I didn’t think was all that terrible, and then tell me “I’m glad that you feel like you can talk to me.” Okay, well…neither of those things is “I’m glad you told me.” It’s, “I’m glad you trusted me.” Very different things, or so it seems to me. Because then when the seemingly inevitable distancing follows, it sure doesn’t feel like they’re happy I told them. It seems like they don’t know how to react, like they don’t want to deal with it, like a lot of things that aren’t “I’m glad you told me.”

We need to talk about it. I need to talk about it. I spent a large part of my diagnosed life, until I started college, really, not saying anything to anyone about it. I would smile and nod and say “I’m feeling well today.” I would lie through my teeth. On the days I couldn’t lie, I would isolate myself to avoid having to tell the truth. After years of being questioned and doubted pre-diagnosis, I was terrified of what the reaction to the truth might be. While eventually I did start to open up, I can’t help but feel as though I’ve predominantly succeeded in hurting those around me, and making the relationship more difficult in the process. Once those words have been said, they can never go away. Once you expose those weaknesses, you can never be seen without them again. Maybe that isn’t a bad thing, but it is a scary one, and maybe, in the end, the costs don’t outweigh the benefits. I don’t know.

Conclusion: I was recently told, while talking about how rarely I’ve been able to explain my disease in any meaningful way to those around me, that I don’t have enough faith in people. I was told this by someone who was having a visibly hard time handling the things I had told him about my disease. Distancing ensued.

Weakness.

I had a conversation with a friend the other day about the best and worst feelings in the world. When it came to mine, the best was freedom. Not necessarily freedom in any legal sense of the word, but rather physical freedom, the ability to get out of bed in the morning and walk around campus and sit in class and not worry about if I will actually be capable of doing those things on any given day. The worst was easy as well: helplessness. It wasn’t even a question.

Helplessness, weakness…those things are hard. We’re supposed to have those things to some degree as children. And then we’re supposed to outgrow them. Once we get to our early 20s, our physical prime, we’re supposed to be strong. This is the time to go and see and do, while we still can! That’s what everybody says at least. It isn’t true for me, or for a lot of other people with chronic illnesses. For me, it’s sometimes a monumental struggle to roll out of bed in the morning and make it to the bathroom without walking into walls or impaling myself on sharp pieces of furniture, and then to actually get ready? Even if the extent of my getting ready is sweats and hair in a ponytail, I’m usually exhausted before I ever make it down the stairs of my apartment and into my car to leave for the day. Of course, this is omitting the necessary decision every morning: to eat or not to eat. Pros: If I eat, I’ll have less POTS symptoms. I won’t get as sick when I take my medication. I’ll (theoretically) have more strength throughout the day. I won’t have to deal with the effects of hunger eating away at my stomach. Cons: I’ll be in pain. I can’t guarantee that I’ll be able to sit through class. I’ll have to keep myself in close proximity to a bathroom at all times, just in case. I may not be able to drive myself home at the end of the day.

Now granted, that isn’t on a good day, but it also isn’t anywhere near what a bad day would look like. It’s just sort of…average. To take the view of a bad day to an extreme, let’s consider times when I’ve been in the hospital. There have been times when I’ve had the back of my hospital robe untied, been carried into the bathroom and held in place on the toilet by nurses (read: strangers). There have been times when I’ve been too weak to wash, so I’ve been sponge bathed by people I’ve maybe seen once or twice before. I’ve had my teeth and hair brushed by friends and family, because I was incapable of holding my arms up for long enough to complete even those simple tasks. I’ve been totally helpless, entirely at the mercy of the people around me.

Believe me, there is no worse feeling than that. It doesn’t have anything to do with love, or trust. It’s not like I ever lay there in that hospital bed thinking that they were just going to leave me to rot. That isn’t the issue. The issue is that, if I needed to, if for some reason there came a time when I had to take care of myself, I couldn’t. That’s always a consideration. There’s always that “what if” in the back of my mind, what if I get to that point again. It’s rare, of course. Most days I can and do manage alone. But for me, total helplessness is somewhere that I have been and realistically could be again, and it’s frightening. But more than frightening, more than frustrating even, it’s…well, sad. Not sad for me per se, I’m not trying to have a pity party here, but sad because I have no choice but to become a burden to those around me. They might love me, but I’m sure my family has things they’d rather be doing than brushing my teeth and helping me bathe as though I was still a toddler. And that’s tough to handle.

All of the “It’s okays!” and “I don’t minds!” don’t do anything to help either. What normal human being wouldn’t mind, at least a little bit? The constant positivity makes me question everything else that I’m told. If there were one, “It’s sometimes a little tiring to have to take time out my day to do this for you, but of course I want to help you anyway” in there, it would make everything else just a tad more believable. I’m getting off topic though. Off topic-ish. To get back to the point…wait, I don’t know if I have a point. As is typically the case, I’m just trying to explain how my life has been impacted by illness. So, let’s make the point this: if you don’t know what I’m talking about, if you’ve never been in a position of total weakness, total helplessness, be grateful. Cherish that. I hope you never have to know what it feels like.

Self-Destruction.

Sometimes, I wonder if having a body that destroys itself has made its owner (me) more prone to help it along the way. Or at least, not to hinder it’s destruction. I suppose I should preface this post with the fact that I don’t drink, smoke, or do drugs other than the ones that have been prescribed to me, nor have I ever done these things. I do exercise when I’m physically capable, although that’s not too often these days, and I’m generally a person who could be qualified as a “health nut.” Generally. Not always.

In addition to being a freak about my health on the surface, I’ve also developed this nasty tendency towards less visible but still self-destructive behaviors. In some ways, one might even say that I’ve become a bit masochistic. When I’m curled up in a ball on the floor, in extreme pain and unable to move, sometimes the only thing I can do to keep myself from screaming or crying out, begging for help in an empty room, is to dig my nails into my arms. At the time, the pain from that seems minor, almost non-existent in comparison to what’s happening internally, but I’ve on occasion woken up afterward with scratches down my arms so deep that I’ve had to wear long sleeves for weeks to avoid the questions which would inevitably come.

This tendency to create new pain to distract from the old, greater pain to distract from the lesser, is clearly not a good one. At the level that I’ve discussed, it probably isn’t dangerous, but it definitely isn’t beneficial either. That said, I don’t have much of a solution to this unconscious habit which I’ve developed. It’s hard to explain, harder to justify. It sounds slightly insane. After all, creating more pain is hardly a solution, right? But in the moment, it’s the only solution there is. There’s no pain medication that will take off the edge, unless it’s during a period of hospitalization and I have access to a morphine drip. Once we start talking drugs on this level, addiction becomes a very real issue.

Then, there’s food. Granted, I’m surely not the only sufferer of CD (or IBS or UC for that matter) who has a difficult relationship with food. It’s necessary for survival, but also simultaneously causes extreme pain…I’m starting to figure out where my masochistic tendencies come from. In any case, I’ve spent a lot of my life not eating by necessity. I physically couldn’t keep food in my system, and when I tried, malabsorption stripped me of any benefits anyway. I’m lucky now in that a lot of the time, if I’m careful about what foods I choose to eat, I can actually eat. And yet, sometimes I don’t. Because sometimes, the only thing about my body that I can control is what I put into it, and it’s just easier to not put in anything at all. Yes, I know this isn’t healthy. Yes, I know this is a warning sign for an eating disorder. I’m working on it. But that’s not the point of this post.

The point, I suppose, is this: it’s so hard, so frustrating, to do everything right, and still have a failing body. While I do realize that the little things do make a difference, to some extent it doesn’t matter how healthily I eat, how well I sleep at night, how hard I work out, or anything else. I never had a chance, and that’s hard to handle. A sick body shouldn’t lead to self-destructive habits, but at least in my case, the honest truth is…sometimes it does.

Imprisonment. Pain. Freedom.

So, here’s something that I realized recently. I’ve been moping around in a slightly depressed, angsty, self-pitying state for the past couple of weeks, and not for any particularly good reason. That is, not any reason that didn’t exist before a couple of weeks ago. After years of having totally accepted the fact that I have multiple chronic illnesses and will likely never be able to live life without making certain considerations that a healthy person would never have to, it all of the sudden hit me that, well, I’ll likely never be able to live life without making certain considerations that a healthy person would never have to.

There’s a couple of reasons for this. One, I’ve been living overseas for several months now, and watching the people around me hiking and scuba diving and climbing mountains while I’m stuck on the sideline no matter how much effort I put into getting in shape has made me feel kind of left out. Much as I might be used to it, and as lucky as I feel to have gotten this chance at all, it never really becomes easy to see other people having experiences that you’re so close to you can almost taste, but can’t quite reach. Two, I’m getting close to graduating from college, and I’m starting to look at applications for things – jobs, internships, field schools, the Peace Corps, all kinds of stuff. And so many of the organizations that I’m interested flat out won’t consider somebody who has my illnesses or is taking the types of medication that I need to take to stay mostly in remission. Or, they don’t rule it out completely, but when asked, they’re fairly forthcoming in saying that the chances of them hiring someone with Crohn’s or IBD is slim to none, because when it comes down to it, my language skills, 4.0 GPA, extra-curriculars, cross-cultural experiences, and great references still aren’t worth the risk. Understandable, but a hard pill to swallow.

The intensity of being thrown into another culture combined with frustrations like these have led to me having some health trouble recently. Nothing serious, nothing I can’t handle, but just enough to keep me cooped up in my bed a lot more often than I’d like. And that’s when the angsty-depressed-pitying mood kicked in, a mood which I haven’t felt to this extent for a very long time. And I put it down to the reasons that I listed above. Then, this weekend, I decided to say screw the disease and took a day trip with some friends. It wasn’t anything that should’ve been too strenuous, but the 10 to 15 km of hiking on hilly terrain was enough to do me in. I held it together through the whole day, the entire trip back home, and all the way to my room, where I virtually collapsed into bed and slept for hours.

I woke up at 4 o’clock in the morning, in pain worse than I’ve felt in a long time. I barely made it to the bathroom, where I stayed until 6:30, partially because I needed to be in there, and mostly because I physically couldn’t make the 10 foot walk back to my bed again. As I heard my roommate start to get up, I walked back to bed doubled completely in half, curled up in a ball, and did my best not to move or breathe or do anything else that might make the pain worse. I alternately laid on the bathroom floor and in bed throughout most of the rest of the day, getting up only once for about half an hour in the afternoon. Whilst rocking back and forth in the fetal position, incapable of doing much else, I came to a realization. I felt better than I had in a long time.

Not physically of course, but mentally. Despite my temporary incapacitation, the self-pity had all but vanished. The fact that I had forced myself to get up and do something in spite of the disease had in one afternoon done what weeks of brooding over my perceived weaknesses had failed to. I proved to myself that, even if I have to pay the consequences, I do still have the ability to do some things. Obviously, I can’t go out and hike 10 kilometers every other day; I have too many things to do to willfully be that sick all the time. But, when things start feeling tough…now maybe I have a solution. Get out. Do something. Plan for the consequences. The pain is irrelevant.

It really is. The pain is something I have dealt with for as long as I can remember, and unless there’s a particularly sharp spike in activity, I rarely think about it. I just put my head down and keep pushing on. But even if I can deal with the physicality of it, I often feel as though my body is a prison, holding me back from the things I want to do. In some ways it is. No, I can’t go on the hiking trip this weekend like I really want to do, I’m going to stay in and probably be recovering from this week instead. But ya know what? It’s okay. As much as I’ve always known that disease would hold me back in some areas, I’m finally starting to find ways to come to terms with it. It isn’t easy. I’m not there yet – I don’t know if I’ll ever be. But day by day, I’m figuring it out. And trying to not destroy my relationships or my (remaining) health in the process.

Denial.

Truth is meant to save you first, and the comfort comes afterward. So said George Bernanos, but what he forgot to add is that if nobody believes you, then sometimes the truth isn’t enough.

Denial is a funny thing. Presumably it’s a simple matter of fear, or perhaps more aptly of comfort. It’s hard for us to choose to believe things that will cause us discomfort. Unfortunately, in my case, other people’s difficulty with this caused me a world of hurt.

It took five years of denial from family, teachers, doctors, and every other adult in my life before I got so sick that I ended up in two ERs within 48 hours. Five years of damage to my body that can’t be undone. Five years of agony. To this day, the one and only thing that can make me lose my normally non-existent temper is somebody not believing me when I’m telling the truth.

It’s not like they intended to cause the kind of damage they did, not at all. In fact, I remember sitting in my GI’s office not long after my diagnosis, listening to her tell my mother not to blame herself, that with a disease like Crohn’s, more often than not family of the patient doubts until there is no room left for it. That’s all well and good, but it certainly didn’t make me feel any better. Granted, it was selfish, but at 11 years old, all I could think was “But what about me? Why are you all so worried about making my family feel better…aren’t you supposed to be my doctor?”

Maybe the worst part, though, the part that came later, was when what my doctor said really sank in. This isn’t rare; not uncommon, even. I understand why. I get that Crohn’s is a disease that’s next to impossible to diagnose, that’s based purely on eliminating all of the other options (and really, who has the stamina to go through all of that without any evidence?). But the thing is, it needs to change. I realize that not every child claiming to have a stomach ache is going to end up with a chronic illness. Thank [fill in a deity’s name here]. But, some of them will. And letting those kids fall through the cracks just because some of their friends may cry wolf is unacceptable.

Yes, Crohn’s is hard to diagnose, but for me, it would’ve happened a whole lot sooner if my parents hadn’t trusted a doctor more than their own child, something I later learned wasn’t particularly rare. It would’ve happened sooner if doctor after doctor hadn’t been trained that a lack of evidence in a simple blood test or urinalysis meant perfect health. It would’ve happened sooner if only one teacher or school nurse had noticed weight dropping off of me pounds at a time. It would’ve happened sooner if people hadn’t been in denial about the fact that a sweet little girl could be chronically ill. It was easier to believe that the quiet, responsible, good student was actually a liar on a sociopathic scale. It’s a big problem.

I don’t claim have a solution to that problem, other than awareness. As long as legitimately sick children are in the minority – where hopefully they will stay – there will always be doubts. There will always be denial. I guess the reason I’m writing this is just in case…just on the off chance that someone with a sick child in their life happens to stumble across my small corner of the internet: know that test results aren’t everything. There might be more to the story, and the easy answer isn’t always the right one.

Working Through the Fog

Most of what I write about on this blog is related to my Crohn’s disease. However, I also have another chronic illness, a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (POTS). This has a laundry list of symptoms that I won’t get into here, but one of the hardest to deal with for this university student is brain fog. It’s exactly what it sounds like: it feels like there’s fog in my brain, clouding my vision and preventing me from seeing the things that I need to do, the right phrasing for the essay that I’m writing, the words on the page of my textbook, or the errands that I need to run. Have I taken my iron supplement already? Have I drunk 64 oz. of water today, or only 48? What was I supposed to study for that poli-sci test, again? Did my electricity bill get paid for the month? Have I even checked the mail for it yet?

And so on. And while the reason for my brain fog is POTS, it certainly affects people with other illnesses/medications as well. Now, I would never go so far as to say I’m an expert on the matter, especially since what helps us all is so individual. But, I’m an honors student. I’m a senior with a 4.0 GPA. I work part-time. I volunteer, when I’m physically up to it. I’m in the process of writing a thesis and applying to graduate school. And I’m doing it through the fog.

Unfortunately, some of the best solutions for us POTSies aren’t convenient for at home use…for instance, IV saline. But, I have found a couple of things that consistently improve my focus. So, without further ado, here’s my top tips for clearing your brain and getting to work on that to-do list.

  1. Get your sleep. I don’t know about you guys, but when I’ve had a rough, painful, sleepless night, the next day is hell. It’s hard to do when you have a test in class, or you’re out of sick days at work, but if you have the option, nap, nap, nap. Even if the fatigue is still present, getting that extra bit of sleep always seems to help with the brain fog.
  2. Drink your water. Dehydration is a bad state to be in. Measure your water intake. And if your brain is too foggy, write it down or use an app to track it so that you know that you’re keeping hydrated.
  3. Take your salt. Now that you’ve got your water, keep on building that blood volume with salt. If your blood pressure is low, you’ll probably feel dizzy, have your vision going black, find it difficult to sit upright, and a variety of other fun symptoms. Not the best way to focus. I personally find Thermotabs to be a good combo of salt/potassium for me.
  4. Lay down. POTS symptoms are aggravated by sitting, and, even worse, standing. It’s inconvenient, to be sure. However, I never do better work than when I’m lounging back on my bed with a textbook beside me and my laptop on my lap. Obviously, this won’t work all the time, but when you have the option, take it. And, when that fatigue kicks in, you’re in the perfect position to push the work to the side and take a nap!*
  5. Exercise. Yes, I know what you’re thinking. How am I supposed to exercise if I can barely stand? You don’t have to run a marathon here. It could be leg lifts or pillow squeezes while laying down. Stretching, or taking a gentle stroll are also good options if you’re feeling a bit better. This might just be a holdover to the days when I could run, and that was how I was able to keep focused, but even doing simpler exercises seems to improve my circulation and get my brain back on track.
  6. Vitamins. No, it’s not a cure, but due to my Crohn’s I have severe anemia, as well as deficiencies in other important substances such as Zinc. If you’ve been tested, and know you have a deficiency, particularly in B12 (which seems to cause problems for loads of POTSies), make sure you’re getting your daily intake. Vitamin deficiency can take its toll.
  7. Medication. This is my last option, partially because it’s obvious, and partially because I like to use other solutions when I can. But when I can’t, Florinef and Midodrine are lifesavers when I have that “I’m about to pass out” feeling, and Klonopin is the only thing that can get me to sleep some nights. If you have medication, do take it. The docs prescribed it for a reason.

*These first four incidentally cover the top 5 reasons for brain fog, according to Dysautonomia International. They are: fatigue (91 %), lack of sleep (90 %), prolonged standing (87 %), dehydration (86 %), and feeling faint (85 %).

There is no 100% solution. There’s no pill you can take that will clear the fog and magically make you totally focused and ready to go, at least not without some serious consequences. But, by keeping the basics under control, it is possible to manage brain fog. There will be good days, and bad days, but hopefully one or more of these tips will help you like they help me, and make the bad days at least a bit better.

For Friends.

A few days ago, I stumbled across this article on healthline, 12 Things You Should Never Say to Someone with a Chronic Health Condition. Then yesterday, I was talking to a friend, and got a little more heated than I should have. He’s one of the few people outside of my immediate family that knows specifics of my history with illness, which can unfortunately strain our relationship at times. I made a comment along the lines of the fact that I had perhaps been asking too much from him for too long. That I need someone who can be around for the long-haul, and that I had no right to expect that to be him. For someone who normally doesn’t talk about my disease to anybody, we could at best have been described as acquaintances when I spilled my guts (ha, punny) to him on one particularly tough afternoon. So, how could I ask him to stick around?

Instead of letting me push him away, he asked me how exactly one is supposed to handle being around a chronically ill person for a sustained period. I didn’t have an answer. Of course, given the amount of my life spent in hospitals, I’ve made chronically ill friends. We all share diseases, though, or at least similar symptoms, so I never had to think much about being around them. We didn’t have to explain anything, we all just knew. But, this is a person who, when asked, couldn’t come up with a single case of debilitating pain in his entire life. The closest he could think of was getting stitches once when he was a kid. I’m glad for that. If I had my way, nobody else in the world would understand what this feels like, but at the same time, it makes it awfully difficult to explain things.

Later on, different conversation. He asked me exactly what I wanted him to understand when I was talking about being sick. Again, I couldn’t really come up with a good answer. I mumbled and stumbled my way around some words to the effect of, “I know (or hope) that you’re never going understand what this physically feels like, no matter how many graphic descriptions I give, and I don’t know if it’s even possible for you to get what it’s like to have had this hanging over me 24/7, for 14 years, and no end in sight.” Basically my answer was I don’t know. I don’t know what any person as healthy as you have been lucky enough to be is capable of fully understanding, but I need to talk anyways. To try to explain. It’s as necessary for my mental health as immunosuppressants are for the physical.

That was a very long-winded introduction, all to say, here’s my list. Obviously, I can’t speak for all chronically ill persons, and nor am I trying to, but after some thought, these are some of the things that I would like healthy people to understand when they talk to me, in no particular order:

  1. Just because I look healthy, doesn’t mean I am. Yes, if I let my condition go for long enough, I’ll become visibly ill: skeletal, pale, easily bruised, too weak to walk unaided. I’d rather not let things get that far, so I manage things the best I can, and most of the time even my friends couldn’t look at me and tell that I’m not feeling well if I don’t want them to. That doesn’t mean that I feel good. When you see a healthy looking 20-year old walking down the street, remember that old cliché: appearances can be deceiving. Nothing is harder than when a well-meaning middle-aged person looks at me and says something like, “At least you have your health!”
  2. Joking about eating disorders isn’t cool. First of all, because it just rubs my nose in the fact that I have to do un-fun things like go without food for extended periods, and secondly, because eating disorders are serious business, and I feel like making light of them isn’t a good way to go about diminishing the problem.
  3. Talking is hard. I’ve come to realize that while talking about how illness has affected my life is difficult, not talking is impossible. I also realize that it can’t be easy to listen to, which is why I don’t go further than surface-level in most discussions with other people. If I’ve trusted you, know that I didn’t do it lightly.
  4. Don’t worry too much about your reaction. This might seem counter-intuitive, but I can almost guarantee you aren’t going to offend me. I like it when people ask questions: it gives me a chance to give them some insight into my world. Questions are the only cure for ignorance. If I start throwing out medical terminology, feel free to ask for clarification, and if you need to take some time to process that’s okay. I’ve run the gamut of bad reactions, so my armor is strong. I truly don’t believe that you are going to hurt me, or I wouldn’t have taken the calculated risk of talking to you.
  5. Don’t apologize. I don’t expect you to starve yourself just because I can’t eat! So, next time you’re about to take a bite out of that delicious pizza, don’t stop to tell me how sorry you are first. Remember, I consciously made the choice to go to a meal with you, so all I ask is that you take a second to be grateful and then enjoy some for me!
  6. I don’t expect you to solve my problem, so don’t feel obligated to try. When I talk, it’s usually just because I need to get something off my chest. I don’t expect you to whip a cure out of your back pocket. Believe me, I know it isn’t that simple. Few things are more frustrating than having someone propose a million solutions that either have been tried, or aren’t remotely realistic. Yes, my disease has a lot of ties to my mental state, but no, doing yoga is not a cure. I promise. I do yoga, and it’s great, but it doesn’t magically un-inflame my intestines. And please, whatever you do, don’t tell me that I’m a hopeless pessimist when I try to explain why your solutions won’t work.
  7. I don’t always want to talk, but I go through phases where it’s hard not to. I’m not a super expressive, emotional person. Discounting unconscious tears leaking from my eyes due to sheer unrelenting pain, I couldn’t tell you the last time I cried. And 95% of the time, I’m totally fine keeping my inflammation to myself. However, when I hit a point where I need to talk, I’m going to really need to talk. Our conversations might be dominated by what’s going on with my disease for several days, or even a couple of weeks if it’s been really bad. I’m sorry. I know it’s tough, and I try to place reasonable limits on things to keep myself from falling into a black hole of victimhood, but it can be really difficult to do, especially if every time you see me you ask “Are you feeling any better today? I hope you’re okay!” If I really need to talk, and I hear those words, the walls might come down, so be warned.
  8. Call me out. Despite what I said in number 7, if you happen to be one of the few who knows me well enough to see that I’m really not in a good place, and every time I see you I plaster on a smile and say “I’m great!”, feel free to remind me that it’s okay to not be. Somewhere deep in my subconscious, or not so deep as the case may be, that’s probably what I want to hear anyways. But my guilt complex emerges every time I drop a pile of disease-related thoughts on someone else, so I often fear talking even to people who know what’s up.
  9. Sometimes, it isn’t about talking at all. Offhand, I can’t think of a lot of things that people say that make me feel better in the end. I suppose something along the lines of “I’m here for you if you need anything,” or “If you ever need a shoulder to cry on…” would come closest, but regardless, the best comfort for me is often just a hug. I live in a situation where words very rarely solve anything. Yes, I do need to talk, but it’s still hard for me to explain, and it’s usually hard for others to understand, and that little bit of physical contact bridges the gap. So, if you don’t know what to say, don’t say anything at all. An arm around my shoulder will probably do me more good than words would anyways.
  10. I truly am grateful. If you are one of the few who I have chosen to talk to, I know that it isn’t easy. It feels like a burden that I am putting on you, and if you are one of the fewer who have actually stuck by me despite that, I can’t express my gratitude in words. It’s always been hard for me to accept that I can’t survive everything life has thrown at me without a little help, so thank you for sticking by me as I figure out how to ask for what I need. (Cue the music! *I get by, with a little help from my friends…*)

Can’t.

This is a word I’ve heard a lot in my 20 years. Sure, there’s the usual, “No, you can’t go out dressed like that!” from my mother, but there’s also the lists from the doctors, telling me what I can’t do. I can’t run, it’s bad for my joints. I can’t bike, also bad for my joints. Really any kind of physical activity…not great (but stay in shape of course, that’ll help prevent degeneration!). I can’t eat this massively long list of foods, those’ll send me into a Crohn’s flare. I can’t get too stressed out, ulcers in the making right there people. I’ll be given drugs that throw massive waves of pain my way, but no ibuprofen! That could irritate my stomach lining and cause liver damage (on top of that already being caused by the prescribed medications, of course)! The list goes on, but the list really isn’t the point. The point is the psychology behind the list.

One of my friends asked me recently if I had any hobbies. He pointed out that, even during a small flare, I have this tendency to respond to everything with “I can’t.” I think it was starting to irritate him. Now, this “I can’t” statement is partially true. I really can’t ride bikes with my knees in the state they are…it hurts like hell. But there are obviously things that I can do as well. So why don’t I ever talk about those? My answer surprised even me: “It’s because I’ve only ever been told what I can’t do, and never what I can.” Now, this isn’t strictly accurate. I grew up in a family with enough money that I never questioned that I was going to attend university. I grew up in a family whose only response when I said I wanted to grow up to be an archaeologist was to buy me books on ancient Egypt, not to try and talk me into a more practical career. I grew up in a place and time where I (mostly) wasn’t held back at all for being a girl, and yet here I am, 20 years old, saying that “I can’t.”

I blame the gastroenterologists. They meant well, I know. They did their jobs, told me that they couldn’t cure Crohn’s but gave me a list of the best ways possible for me to stay healthy. The rheumatologists, who were trying to keep me from having knee-replacement surgery before most people know what arthritic joints even feel like. The neurologist who kindly wanted to keep me from passing out in inconvenient locations. I can appreciate the motivation. But all that their actions mean is that at 20 years old, I’ve ended up with a massive list of things I can’t do.

I haven’t always listened to their lists, I’ve cheated a bit when I knew I could get away with it. But by and large, I’m a rule follower, and so I’ve followed their rules. I’ve listened to all of the I can’ts. Now that I’ve come to the realization of how deeply this has actually affected my psychology, though…I’m going on a mission to find some “I cans.” I don’t know precisely where they’re going to come from yet, but I know that they must exist, and I am going to find them.

Symptoms.

From time to time, not often, but occasionally, I’ve had a non-Crohn’s sufferer ask me what it feels like to have CD (or POTS or SpA for that matter), and invariably, I have been at a loss for words. I can try to explain the “stomach” (intestine) pain. Depending on the day, it might be a constant, slow, burning sensation, as though I’ve just swallowed a gallon of lava. It might feel like hundreds of needles are being stabbed into my gut at random intervals, or even better, fishing hooks, tipped with barbs. It could be cramping so bad that I’m physically incapable of getting out of the fetal position, which can be hard when the time inevitably comes to make the run to the bathroom. And more often than not, once I’m on the toilet, I can’t actually stand up again, even when my system is empty (even though I could have sworn it was empty before, after days of not eating…).

People will comment on how it can’t be healthy to “starve myself,” and I’ve almost given up trying to explain that when even the smallest and most bland bit of food throws your digestive system into overdrive, eating just isn’t worth it. I’d pick IV nutrition any day of the week. When they tell me that they wouldn’t have the willpower to not eat like that, or to stay on a liquid diet for weeks on end, I can’t help but be glad, because it means they don’t understand the pain that comes with putting something into my body. If they understood the pain, they would realize that it doesn’t take nearly as much willpower as they imagine. To “starve” myself is actually easier. For one disease. The thing is, what’s good for one disease is nearly always bad for another.

Take POTS, for instance. POTS is a different story with the same ending. Me, curled up in bed, not moving. If I’m not careful (that is, eating lots of high-sodium foods), my blood pressure drops so low that I stand up and pass out, just like that. Even when I am careful (and usually paying for it on the Crohn’s front), I spend a lot of mornings cautiously standing up at just the right angle so that when I do lose my balance and fall down again, I fall back into bed and not onto the floor or into a piece of potentially dangerous furniture. Once I’m able to stand, my depth perception still takes a while to come into focus, and I always walk out of my bedroom verrryy slowwllly, or I’ll walk straight into the door frame, stumble out into the hallway, and have to hold on to both walls to walk in a straight line. I’m thinking it’s a good thing that I live alone, because 8 a.m. me basically looks like a drunk.

Even once my stabilization kicks in, I still have to worry about the dizziness which is more or less constant, and shaking hands. Yes, you read that right. Because another POTS symptom is bad circulation, leading to, you guessed it, icy extremities (at least a lot of the time). Now that’s fine as symptoms go, it doesn’t really bother me that much, but apparently it bothers other people, because anybody who happens to touch one of my extremities when this particular symptom is acting up feels the need to comment on it. Really? I’m sorry. Is my poor circulation bothering you? Would you like me to wear gloves?

Other effects of the disease are a little more debilitating than cold hands. Just the walk to class makes my heart beat fast enough to make any cardiologist nervous, and I usually feel terribly dehydrated, despite forcing down a couple of liters of water a day. You’d almost think I’d been exercising, except that I haven’t actually done anything. Am I starting to seem frustrated? That could be due to the fact that the symptoms of POTS and the symptoms of generalized anxiety disorder overlap to the point that many POTS sufferers actually get diagnosed with anxiety disorder instead of this lovely form of dysautonomia. Feelings of depression, insomnia, brain fog, fear, nervousness, overstimulation, and plain ol’ just being burnt out abound. Generally, these feelings are unfounded.

A long time in the distant past, my solution for this would have been a simple one. Go for a run, lift some weights, ride a bike, just work off the stress. Sounds great, right? A super healthy solution. Except that now we have to add SpA into the equation. SpA is a form of arthritis that, at its most basic, affects predominantly the spine and the large joints. For me, the arthritis has also progressed into my hands, making essay tests more hellish than even the least-prepared student can imagine. So, long story short, I can’t run, I can’t ride, and sometimes, I can’t even write. Which is tough, and stressful, which sometimes causes my Crohn’s to flare up, which means I can’t eat. Then, because I can’t eat, I start becoming weaker and passing out from the POTS. This naturally leads to me spending a lot of time in bed, causing my joints (which I’m pretty sure actually belong to some 90 year-old somewhere) to become painfully stiff, and…well, you get the point.

Even if the next time somebody asks me what being sick feels like I say all of these things, I don’t know if it would be right. I don’t know if it would give any insight at all into the daily frustrations of being physically limited. Actually, I don’t know if this answers the question at all: What does it feel like? Does pointing and saying this is where it hurts tell anybody what it feels like? Probably not. For now, though, that’s the best I’ve got. What it feels like will have to wait for another day.