The Holidays from the Point of View of a Teen with a Chronic Illness

This time of year is set up to be wonderful, you gather with friends and family, some you haven’t seen in a while, and all sit down and enjoy a meal together, the football game on TV on Thanksgiving day while the younger children play with each other or with their older cousins. On Christmas, kids tear into their packaged excited about what could be inside, eating dinner and any kind of cookie possibly imaginable. For me, now that I have a chronic illness, the holidays just aren’t as much of a joyful celebration as they use to be and sometimes I’d just rather opt out than be the odd one out, call me a Grinch if you wish, but hear me out.

The extra work it takes to plan and host such a big meal can be exhausting, while I don’t have to do a ton of that work, what little I do do like chopping veggies to help my grandma, cleaning up the bathroom, is taxing. Leaving me in need of a few days to recoup, but when in reality I’m not going to get that rest time because if I am prepping for a holiday, said holiday is the next day, and people expect to see me.

The extra commotion, weather it be from the younger members of the family, or just the large number of people all combined in one house, can be over stimulating for me. The shrieking of the children playing, the cheers of the guys watching the football game and the never-ending questions from family I haven’t seen in a while, can quite easily give me a Migraine. And, not just a mild on but a severe last for days after the holiday type of migraine.

Then comes the food, you don’t really notices how every holiday revolves around food until food is something you can’t have. Thanksgiving? The whole point is together around a big dinner table and share a huge meal the puts half the family in a turkey coma, while the other half sit around and talk or watch football. Christmas? Same idea, but this time we add in those beloved Christmas cookies. But for me I know that all of that food is going to make me feel sick, if not actually get sick. I am tube-fed 24/7 for this reason, and a lot of the time it is hard to sit and watch everyone else eat and not eat myself. Or sometimes I feel obligated to eat something because of the hard work everyone put into making the food, and I don’t want to be disrespectful, even though I have a perfectly valid reason for not wanting to eat. So a lot of times I personally go lay down during the mealtime, it just easier to go back into my own little world and not have to sit around everyone and watch them eat the food I use to devour before I got sick.

This one is kind of a spin off of the feeling obligated to eat something because I feel disrespectful if I don’t or because I feel obligated to just because that is what is normal in this situation. There are other things that I feel like everyone expects me to do on a holiday, no matter my health status that day. Like play with the younger cousins, speak to everyone, answer the same question a million times, but the biggest thing I feel like I am forced to do is just being present among my relatives, it looks bad when I just hide out in my room while everyone else is out the in the living room and kitchen being social. Even if the reason I am not present is for health reasons.

The last big thing about holidays that is hard on me because of my chronic illness is the constantly going feeling. By that I mean that someone is wanting to talk to you, the kids are wanting you to play with them, and no matter how hard you try there is no taking a “rest” on either Thanksgiving or Christmas, because it doesn’t matter what you have done in order to gain some alone time to rest up your already battered body, someone will find you and ruin that hour nap you thought you would retake to recharge, or barge into your room where your in bed too sick to finish the day but now you have to deal with the person who hunted you down wanting something.

So please understand that if on Thanksgiving or Christmas I, or someone you know with a chronic illness, needs a break, it’s nothing you have done, and it’s not us wanting to “get out of” doing some of the tasks nobody wants to do in the first place (clean bathroom, wash dishes), instead we would give anything to be out and socializing and spending time with you, their family, but sometimes in the face of a Chronic Illness some things are just out of our control. Sometimes we are forced to take a time out weather we like it or not, and if we have gone ahead and taken said time out we have pushed well past what we should do and we hate every minute of not being involved in the holiday.

The Hard Part of Being a Chronically Ill Teenager

            Being chronically is hard. It doesn’t matter how old you are, but there are things that are harder when you are teenager and ill, rather than being a child with a chronic illness or and adult with a chronic illness. This is because when you are young when you get your chronic illness you don’t know any different, all you can remember is having that illness so you don’t know that your quality of life can be or has been better. Also little kids are more resilient and things happen that would knock down an older person like a surgery, a child won’t let that happen they push on like nothing is different. Then when you are an adult when you get you chronic illness you have life under your belt, you have experienced things, maybe made yourself a family, gotten the career you wanted, and while adults tend to have a harder time recovering than children their life experience makes certain aspects of having a chronic illness easier.

            Now when you are a teenager when you become chronically, you are just beginning to get out into the world by yourself. You are just beginning to explore the options that could be, but at the same time you are still holding onto your childlike view of the world. For this reason, there are many tough parts to being a teenager with a chronic illness, and I just want to go through a few of those things that are big in my life and I am sure affect other chronically ill teenagers.

1.)   Your trying to start your adult life while juggling your illness.

Your teenage years are probably some of the most important years in your life. There’s high school, where your performance affects your admissions to college. Then college where no matter what you did to try and prepare things just aren’t the same as high school. And during the beginning of someone’s college years they typical move out and live on their own for the first time. Overall these years are setting up the rest of your life. Your future college depends on your high school accomplishments, your future job depends on your college performance, and your future life in general rests on the fact that you can move out and function without your family. All of this in itself is hard for anyone to adjust to and accomplish, now add a major life altering illness to the mix. Now you’re not only learning how to take care of your basic needs during this time, your learning complex skills that your life depends on. Your remembering to take all of your medications, you’re learning how to run IV fluids, tube feeds and other endless medical tasks. You’re now transitioning to being the one who calls the doctors when something goes wrong, remembering appointments, and making the judgment calls for situations you normally would have your parents help with.

Overall when you are a teenage with a chronic illness you suddenly have two full time jobs, the first is going to school and preparing for your adult life like your peers and the second is fighting to manage your illness and keep yourself as healthy as you possibly can. With the hardest part being finding a balance between the two; where you’re doing well in school activities to further your career development while keeping yourself healthy enough to actually do so.

2.)   You are going to loose things most people don’t loose until they are older.

Being a teenager with a chronic illness you loose a lot of things, one of those things is your innocents. When you have a chronic illness you suddenly have to become wiser than your peers, in order to survive. You learn that while your problems and worries are about medication side effects, surgeries, getting a diagnosis, or weather or not you are trained well enough to do your medical procedures at home, other kids are worrying and having problems about mundane things like who talked to who at the prom, or their boyfriend breaking up with them, what clothes are in style or who’s party to go to on Friday night. This is something that separates you from your peers and in the end, a lot of the time, they are either not mature enough to handle you having a chronic illness or don’t know how to act around or how to include the person with a chronic illness, leading to the drifting away and eventual loss of friends.

Another type of loss that most people don’t deal with until they are older is the loss of a close friend to death, but being a chronically ill teenage you meet people who like you are chronically ill in various ways. You make friend with these people because they understand you and what you go through, because they are going through it too, and sometimes you don’t even have to meet these people to consider them to be one of your best friends. But as is typical of some chronic illness, some of those friends are going to pass away from their disease, and that is something no teenager should have to feel. The loss of that friend bring pain, and grief and other feelings that I can’t put into words, but it also waves in your face your own mortality. It makes you think that if your friend could die from their disease, so could you. It makes you loose that sense of being invincible a lot of teenagers and young adults have.

3.)   You still have the childlike belief that doctors are all knowing.

When you are little you believe doctors are magic, you go to see them when you’re not feeling well and with a little medication or sometimes by just going to the doctor you begin to feel better. Because of this you believe that there isn’t anything that  a doctor cannot do, they have no limits, but when you get diagnosis with a chronic illness as a teenager this assumption gets abruptly ripped away. You realize that doctors can’t do everything. They don’t have a magic pill that makes every disease go away or even a treatment for every disease. Instead you learn that they can only try and mask the symptoms of your disease. Pain killers for the pain, antiemetic's for the nausea, a feeding tube to help you eat but leaves you feeling hungry, this list is endless, and no matter what the doctors do there are times the illness is going to win. Days where all the medication in the world can’t stop your body from painfully trying to self destruct. Days where you can’t get out of bed.

            Even on good days, after being a teenage diagnosed with a chronic illness you can see the doctors’ limitations. Your quality of life can never be what it was before you got sick. You will never be able to do everything you use to do, or if you find a way to do those things it leads to a flair in your illness, and all of this comes back to the fact that doctors are not all knowing and cannot play God. So, being a chronically ill teenager with the ability to absorb the facts that surround chronic illnesses, you understand you are going to have bad days, and by that I mean very bad days where you beg and plead for the doctors to do something more but they can’t, and you are going to have good days but are always going to know that no amount of medical intervention can give you your old life style back.

4.)   You understand the severity and risks of your condition.

When you are a teenager with a chronic illness, the doctors don’t tend to shield you from the “bad” news like the would if you where a child. They come right out and tell you the risks of having a procedure done, everything from the mild risks like a sore through from a breathing tube, to the biggest risk of them all; death because of a procedure.

Teenagers are also told more about what their illness is going to do to their bodies in the long run, than a child would be. We have heard that our disease is degenerative meaning that is is just going to keep getting worse and worse. We know if our illness is one that can take our lives, and how high the chance of that happening is. We have heard that our genetic disease has a high chance that it will be passed on to our future kids, and that is if our bodies haven’t been damaged by all of the treatments for our diseases and we can still have kids. We also know that in most cases our illness isn’t going to go away, and this has a bigger impact on us teenagers because we have our whole life ahead of us, unlike a middle aged person with illness who has already lived part of their life without their disease looming over them. They have had kids before undergoing treatment that might make them sterile. They have gone through college and gotten their dream job when the only thing they had to juggle was schooling, not schooling and their illness. They have experienced things like marriage, travel, or volunteer work without having to work around the obstacles attached to their chronic illness.

Over all being a teenager when you are diagnoses with a chronic illness has many unique hardships that have to do with being a teenager, but in the end these hardships are what bring out our character. They show us that we can be pushed beyond our limits and still survive. Through hardships and trials, we learn the size of our strength and courage, and that no matter what gets thrown at us in the future (be it from our illness or just life in general) we will be able to overcome that challenge.

First Week of College from a Chronically Ill Student

This last week I couldn’t count the number of times I’ve heard another student say “I’m exhausted and/or stressed,” through out the first week of college. Now I’m sure they where indeed one or both of those things, but there is a different definition for both of those if you happen to be both a freshman in college and a young adult with a chronic illness.

            When you add having a chronic illness to the stress and life of being a new college student there are a million things, I didn’t even think about having issues with until they happened, others I completely underestimated the magnitude of the issue.

            How about we start with something that sounds simple, getting to class. Now, I’m not fully sure how large campus is at Purdue, but it is a decent size. So, when you have a chronic illness that makes all of your joints hurt from time to time that makes walking from one side of campus to the other feel more like walking from anywhere to the moon. I mean there is one time where I’m pretty sure I could get the the moon quicker, but anyways there have been a few suggestions to how to help with my severe pain and fatigue with walking around, including using campus buses and my wheelchair, but let me explain my idea behind going everywhere on foot. It comes from a very dedicated soccer coach of mine when we would start practices at the beginning of summer not being in shape, he would work us to death on Monday practice, and when Tuesday rolled around we where all sore, tired, and complaining and what did he do? Worked us harder. There was no quitting. Ever. And honestly it worked. The harder we worked and the more we worked through the pain, the quicker we got into shape and where conditioned to his work outs. So if that worked then, ideally it should work the same way now, as the doctors tell me the more I do the better I will feel, and so I push on through the pain, refusing to give in to the pain and fatigue. Yes, most days by 4:15 when I get to walk home to my dorm, I swear the world is going to fall in and I’m going to die, but if I keep it up soon it should start to get better. Should being a key word here.

            Next thing you wouldn’t think about being an issue is just outright getting things communicated to the correct people here on campus. I can’t count the number of times a teacher, RA, or other college staff has told me they don’t know what exactly to do with the situation I’ve been told to explain to them and therefore they needed to go and talk to their boss or the head of this part of campus or that part and then meet with me again. So, this week I’ve spent almost as much time in someone’s office trying to sort things out as I have in classes, and I am still not done sorting things out. I’m still sitting with stupid problems, that I have to somehow figure out how to fix, while being sent from office to office on what seems to be a while goose chase.

            Something else that goes with moving to college, is me needing to take over a lot of my healthcare needs. I’ve argued with IU nursing on supplies for my port, been driven home a few times to get fluids, called doctors offices trying to get them to understand what’s going on, and sent my mom on mission to call supply companies and who know who else to get things sorted out. So I am now in charge of things that I wasn’t before, the main thing being running IV fluids through my port. This means I have been in training learning how to access, flush, dress, lock, and deaccess my port. Not to mention learning how to hang IV fluids, run the pump that goes with that, and twice a week wake up at some crazy hour of the night, to switch from one bag of saline to the other, as they can’t put them together or they would need refrigerated and I can only have so big of a fridge in my dorm. Let’s just say tonight is the first time I will actually be accessing my port myself, this involves putting an inch-long needle into my upper chest, and at least I have a good nurse coming because it might get interesting.

            Finally, one thing I didn’t’ think about happening when on campus is me getting really sick. I didn’t think I did this all the often but since I’ve been here for two weeks, orientation and the first week of class, I’ve been sicker than I remember being, and at home there is always someone checking on me but here everyone has made it clear nobody will notice or be able to check in. So it’s kind of scary knowing I could pass out here and nobody notice. Or it’s odd not having someone checking on me when I sleep for 14 hours straight when I don’t feel well. I also seem to have become “allergic” to my formula over the past weeks. If I run it through my feeding tube it makes me throw up, if I stop it I don’t. If I just run water I’m not getting sick. If I dilute the formula it makes me sick, if I slow the rate down same, I’ve even opened cases of formula with different expiration dates. Nothing helps, and to make it better my GI nurse didn’t trust my judgment and ended up making me sicker over this weekend rather than helping.   So now I am waiting out the weekend in order to call them back.

            Overall, I love it here at Purdue, but my illness makes it a ton harder. There have been many days in the last week that all I have wanted to do was give up. Where I haven’t wanted to leave my room and head to class, but I have. Somehow I survived my first week of college, even if I have broken my rules of being here including not texting home so much and no visits from home for the first month, but in the end I think it is better wading into college in my situation rather than jumping directly off into the deep end. There will be bad days, more right now than normal, but if at the end of the day I can get up the next day and keep going there isn’t anything that will stop me. I just have to keep in mind it’s going to get bad, but there is light on the other side and support all around me.