Chronic Illness in College

This weekend I was in Southwest Virginia in a town called Blacksburg, Virginia where I spent four wonderful years going to college at Virginia Tech before graduating in 2015. I have family who currently lives in Blacksburg, family who grew up in Blacksburg and family who also previously attended and some who currently attend Virginia Tech.

Basically, Blacksburg is my second home.

Virginia Tech football

While I was there I experienced overwhelming nostalgia for my college years – having little responsibilities, living down the street from all of my closest friends, waking up & going to bed whenever I wanted, etc. However, my time in college was different from my peers in one particular way: I went through college dealing with chronic illness.

I had to adapt in certain ways my peers did not have to. Some nights I didn’t feel well enough to go out, sometimes my migraines sent me home early from football games, I usually had to skip out on hikes or long outdoor activities, sometimes I fell asleep in class even when I tried my hardest to stay awake (thanks, narcolepsy) and so many other situations during which I had to adapt to or avoid because of my chronic illness.

But the key word here is adapt.

I want to share some of my tips & tricks for adapting to college life when you have a chronic illness. I hope these can in some way help students who are preparing for college or who are currently in college who need someone to just understand for once.

For Classes

  • Speak with your professors at the start of the semester/year.
    • It’s important for them to know that sometimes things come up unexpectedly (like the surprise migraine) and if you speak with professors early on, you can work together on a plan for if that occasion arises. Your professors want you to succeed!
  • Sign up for classes, when you can, that have online lectures available.
    • If you can’t make it to the in-person lecture, maybe they have an online version you can watch so that you don’t fall behind
  • Schedule classes so that you have breaks in-between.
    • You may need time to rest in-between or extra time to get to class from class.
  • Don’t pull all-nighters.
    • They aren’t worth it!
    • Often times, when we deprive ourselves of sleep, it makes the pain so much worse and longer-lasting.
  • Schedule classes during times that are best for you
    • If you have narcolepsy like me, early morning classes are near impossible.

For Leisure & Student Life

  • Make migraine kits – one for at home, one to keep in your backpack
    • It’s always important to keep things like extra meds, water bottles, etc. in your backpack so that if your symptoms get worse while you are on campus, you are prepared.
    • Don’t underestimate the value of things like a sleeping mask & ear plugs (for if your roommates are having people over but all you want to do is sleep) or things like bedside meds (for when the pain is too bad and the thought of getting up to go across the room to find your meds is totally out of the question.)
  • Don’t try to over do it
    • If you know the long trek across campus will cause your symptoms to flare, catch a bus, call an uber, ask a friend to drop you off. It’s OK to need assistance.
    • If you know that drinking or socializing will push you over the edge because your pain is already creeping up on you, listen to your body! Don’t overdo it.
  • Keep some of your favorite movies & shows queued up on Netflix, always have snacks in the house & buy some comfy pillows & PJs
    • Some nights you will have to stay home when your friends are out. Make sure you have the necessities for a perfect movie night in or a successful self-care evening. This will distract you and also help you take care of yourself.
  • Plan a night in – your friends will understand that sometimes it’s too much for you to go out and if they’re your good friends, they will enjoy just spending time with you! Plan a game night, movie night, etc. for a Friday – the perfect activity after week of classes & studying.

But most of all, have compassion for yourself. It’s OK to need a little more help than others or do get things done at a slower pace or to need different adaptions & exceptions than those around you. College is a time for learning not only on an academic level, but on a personal level. You are learning more about yourself in those four years than you can imagine. Have fun. Be present. Enjoy yourself. There’s no other time like it.

Keep Shining For Others

Recently I joined a bible study at my church as a way of growing deeper in my faith, find another community of women I could confide in and also as a new way of finding support with the many ups and downs of life.

Last week at the Bible study, one of the women at my table said something during our discussion that really stuck with me. She said “You might be a light for somebody out there without even knowing it.”

And suddenly I remembered one of the most important reasons why I write, why I have this blog, why I share posts on social media & why I try to be positive in my every day life. And that is to help someone else feel less alone than I once felt.

Be the light

Sometimes I let my fear of judgment and misperception & my fear of failure blind me from seeing and remembering the reasons why I am on this mission to be a chronic illness advocate.

A couple of years ago, I started this blog & my Instagram account as a way for me to cope with the chronic pain I was dealing with. It was way worse than it had ever been and I wasn’t dealing with it in a healthy (I know it’s ironic for me to use the word healthy here) way. So I started writing out how I was feeling both physically and mentally.

But I quickly saw that my words and experiences were reaching people. I had people commenting & messaging me talking about their chronic illness and pain. The light bulb went off and I realized how naive I had been.

Of course I wasn’t the only one dealing with this kind of pain.

While the people messaging me didn’t always have the same diagnosis as me, we all could relate to the lifestyle limitations, the frustrations & the struggles all the same.

My point here is: SHARE YOUR STORY.

By sharing my story, I have been able to connect with people who I have not only been able to help, but who have helped me just as much if not more than I have helped them.

You never know who out there you may be encouraging, inspiring & comforting.

You are somebody’s light.💛

Napping In Public & Not Letting Pain Cancel My Plans

This weekend I made a quick weekend trip away with my little brother to Duke University! He wanted to visit the campus & my Virginia Tech Hokies we’re playing them in a football game that weekend, so it was a win-win.

We enjoyed walking around the campus (I’ll admit, it was beautiful.) The weather was great, sunny & breezy & not too too hot.

But as luck would have it, I ended up with a bad headache about an hour or so before the game was supposed to start. I wasn’t surprised by the pain, because we had been walking around for hours in the sun (and the campus isn’t flat, so there were lots of going up & down hills/stairs.)

Walking up stairs, exhausted, out of shape

My exertion headaches have always been ruthless & I haven’t been able to find any treatment that has helped them. So I always just have to suck up the pain if I want to participate in certain outdoor activities.

Because my brother is so patient & always supportive, he was ok with us sitting down and relaxing in the student center for about an hour before the game. We managed to find a place where I could nap for a short bit, because I knew at that point, only sleep would help decrease the pain I was feeling. So that’s what I did, I shamelessly napped in the Duke University Student Center. But honestly, it helped! I felt a lot better when we got to the game and I was able to enjoy the experience with my brother & create those memories with him. I didn’t want to let my pain stop me from being able to do that.

Moral of the story: Listen to your body & do what you need to do to lessen your pain. Getting awkward stares while you nap in public is worth feeling good enough to enjoy whatever event/evening/etc that you had planned! And don’t be afraid to ask the people you’re with to adapt their plans to help you feel better, because trust me, they want you to feel better too!

Shout out to my brother who encouraged the public napping & who is always willing to adapt plans to make sure I’m feeling ok💛

Duke university

September Intentions: “A Little Less Talk, A Lot More Action”

I’ve decided to really focus on living my life, day by day, with more intent. And when writing down what I wanted my intentions for this new month to be, I realized there was sort of a theme: A little less talk, a lot more action.

I always tell myself I will put more time and energy (what little of both I have left in my week) toward my writing, my blog and my efforts to create a community for people with chronic health problems. But I never stay true to my own word. I’m not proud of it, so I need to find a way to actually live out my intentions.

And I’m hoping these September intentions will help me do just that.

September intentions

Do have something you’ve told yourself you will start doing that you haven’t started actually doing yet?

What advice do you have for people with chronic illness on putting their words into actions – especially when we have less energy than most?

What are your intentions for this month?

Chronic Illness and Relationships

No couple is immune to the hard work that goes into their relationship. Each couple has their own unique obstacles that they have to overcome, their own speed bumps to get over and their own challenges. Each relationship is unique. Relationships that involve someone with a medical condition such as an invisible/chronic illness, present a whole new category of challenges and obstacles.

 

Since I was about 12 years old I’ve battle migraines.Then a couple of years ago my chronic daily headaches developed. Two years ago I developed an anaphylactic food allergy. In the last few months I’ve been diagnosed with hypermobility ehlers-danlos and mild postural orthostatic tachycardia syndrome. You can probably assume that I don’t lead the same type of lifestyle that most normal “healthy” young adults do. These health issues present a number of challenges that would take up a whole page to list them out. But one that other people may not think about is the challenge of dating as someone with a chronic illness and/or condition.

 

It wasn’t often that I opened myself up to someone. And there was always an underlying reason that I often tried to downplay–which was I didn’t want to try to explain my headaches to someone else. It’s a challenge in itself to get someone to even remotely understand what I feel like every day. Which makes sense–you can’t really understand someone else’s physical pain–but it is such an overwhelming and anxiety inducing thought just thinking about explaining it to someone else and trying to help them make sense of it. So I just avoided it.

 

What I’ve found, though, is that with the right person it may still be difficult to explain and express to them how you feel with your chronic illness, but it will become much easier over time and the burden of having to explain over and over will be lifted.

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I have been lucky enough to be in a relationship with someone who, even though he may not be able to understand my daily physical pain, tries his hardest to do so and is there for me every step of the way. Dating as someone with a chronic illness means you look for someone who will stick by you when you’re at your worst. He has laid beside me when my migraines have been so awful that it hurt to talk and think. He has rubbed my back while I lay curled in my bed. He’s rushed me to the ER and rushed himself to the ER when I found myself there without him. He’s held my hand through countless IV’s and needles. But not only has he seen me at my worst physically, he’s seen me at my worst emotionally. He’s been by my side when the unpredictable blues hit and I lay fetal position in my bed crying due to frustration, pain, anxiety and disappointment.

 

You can imagine that being seen in such states can make you feel incredibly vulnerable. I feel fragile, broken and completely exposed. It took me a while to show that part of myself to him, but even now, I have a hard time expressing everything that I’m feeling. It’s hard to be as vulnerable as that and not feel guilty about it. Showing that much vulnerability can make your partner sad because they see with their eyes how much you are hurting. It’s not fun for them either. Which is why I try my best to hide it sometimes, even when I know I shouldn’t.

 

Even though i’m the one who is in constant physical pain, it takes a toll on him as well. It takes a toll on our relationship at times.

 

Once or twice the words “go on a break” have been tossed around before and we have found ourselves facing crossroads of our relationship. It’s no surprise that there is a certain amount pressure put on a person who is dating someone with a chronic illness to be stronger, more reliable and more flexible than a person who is dating someone “normal.” I’ve been stubborn and told him he should date someone normal because it would relieve him of this unnecessary and burdening pressure and frustration that he inevitably faces by dating me. I have become short and impatient because I was telling myself that he should be with someone easier and healthier, which results in him growing fearful and frustrated as well.

 

By living a life with chronic illness, I’ve gained a lot of insight I never expected to. One major thing that I’ve learned about being in relationship as a person with a chronic illness, is that we must give back. Love is a two way street. Our partners constantly give and give and give to help us out when we are feeling at our worst. And it can be easy to let it slip our minds, especially when we aren’t feeling well, that they are putting out so much effort to make us feel better. We end up taking and taking and not giving anything back in return.

 

We have to be mindful and remember to give back. Be outwardly and openly thankful. Be verbal about it but also show it through actions and do something small (or grand) every once in a while to show your partner just how grateful you are. Surprise them with thoughtful gifts, write them notes, tell them how much you love them every day, take part in their interests, cook for them when you’re feeling well, help them in ways they may not feel comfortable asking for just as they do for you.

 

There are numerous challenges that we face when we live with a chronic illness. Being a part of a relationship is one of those challenges that bring about many challenges of its own. But if you can make it through the hardships that chronic illness throws your way, you can make it through any of the other relationship speed bumps you may come across.

 

“How To Live Well With Chronic Pain and Illness” Chapter 7 Summary: “Dealing with Tough Choice after Tough Choice”

When you live with chronic illness or pain, you find yourself constantly trying to manage your health as our relationships with others as skillfully and as well as we can. Based  on our evaluations of how we are managing both of those parts of our lives, we have to make choices that will most be the most beneficial. This leads to tough choice after tough choice. Do we keep the plans we made or listen to your body and stay home? Do we let down our friends or our bodies?

Start where you are. Use what you have. Do what you can.

-Arthur Ashe

 

In this chapter, the author writes out some tough choices/questions that we have probably all found ourselves facing at some point during our lives with chronic illness/pain. See below:

  • “Do we talk openly about our health problems, or do we keep them private?”
    • This is a choice I find myself facing nearly every day. When I interact with strangers or with people whom I know I won’t be seeing often, I find myself wondering if I should even bother trying to explain my symptoms and health conditions. Sometimes I feel like I have to explain myself or the person/people I’m talking to will think I’m weird, or lazy, or boring, etc. But then other times, I feel like I shouldn’t have to explain to someone who may just be a temporary character in my story. The best thing we can do for ourselves in this dilemma, is read the situation and circumstance and do what we feel will be the most beneficial and compassionate for us–not for anyone else.
  • “Do we follow our doctor’s treatment plan, or do we try alternate therapies?”
    • This question frequents my mind much more often than I would like it to. So often I find myself going back and forth on whether I want to try a new treatment that my doctor has suggested. For years, none of the medicines I was being told to take worked. None of them. Countless pills and nothing to show for it. So I am skeptical. However, there are some treatments that my doctors have suggested that have proved to be beneficial and have provided me with even the littlest relief (any relief is a win). So I am hopeful.
  • “Do we ignore a new or worsening symptom, or do we have it checked out by a doctor?”
    • I can not tell you how often I have asked myself this question. You can ask my family members and my boyfriend–they won’t be able to remember either because it’s a substantial number that keeps growing. I find myself so much more in tune with my body than most people. While this can be beneficial, it can be extremely tormenting. It is exhausting to waste so much emotional efforts focusing on every single ache, twinge, or pain that is felt in our bodies. Trust me–I do it every day. However, no one knows your body as well as you do. There have been times that I have gone to the ER over a symptom that ended up being nothing to worry about. However, there have also been times where I have brought up symptoms to doctors and it has helped get me steps closer to treatments that actually work for my body. All you can do, is listen to your body as carefully as you can. You are the expert on your body. You know it best.
  • “Do we use makeup and the like to cover up how sick we are or how much pain we’re in, or do we let people see how we really feel?”
    • This is a question that I often answer too quickly–and most of the time, my answer is to hide how much pain I am really feeling. The author said something in this paragraph that stuck with me real hard. She said “Health people tend to assume it’s all or nothing: people are either sick or they’re not; they’re either in pain or they’re not. As a result, if they see us doing anything ‘normal,’ they assume we’re 100% well.” I mean this is an every single day occurrence for me. I’ve lived through thousands of interactions where someone has said to me “oh you have a headache today? I’m so sorry.” Well…I actually have a headache every single day, it’s just some days they are worse and more painful than other days. It’s not their fault, I know. But it’s extremely difficult to always remind people of my constant pain. So, most days, I just hide how I’m feeling. People are not deliberately insensitive to our pain though. They just simply don’t know.

The author ends this chapter by talking about how physically and mentally exhausting it is for us to have to  continually “assess, evaluate, and choose a course of action while already struggling with chronic illness.” and she couldn’t be more accurate. Pay attention to your body and you will find the answers to your choices come much more easily.

How To Live Well With Chronic Pain and Illness-Chapter 4 Summary: Developing the Confidence to Say No

“To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment.”

-Ralph Waldo Emerson

This chapter is all about learning the skill to say no and learning how to be ok with it. Below are a few highlights from this chapter that I have found very insightful and helpful–as someone who has a very hard time saying no, even when my body is screaming at me to do so. When you find yourself in a position where you can’t decide how you should respond to a situation, run through the following test:

  • “Would saying no as opposed to yes be true to yourself?”
    • Are you saying yes because you truly want to or are you saying yes just to give into the social pressure?
    • For me, I live a lot of my life worrying about making others happy. Yes, selflessness is a good quality to have. However, we need to learn that it’s OK to say no even if you’re worried that other people won’t be happy with your answer. You will learn that there are people who truly understand, and they will never judge you or be upset with you for choosing to listen to your body’s needs and saying no when you feel you need to.
  • “Would saying no as opposed to yes be kind and helpful to yourself?”
    • the author here associates “helpful” to whatever would benefit our emotional and mental well-being and associates “kindness” to our bodies.
    • Basically, what may be helpful to our minds may not be helpful to our bodies. For example for me, exercise can be helpful to my mind but is never helpful or  kind to my body.
    • Another good example of this for me at least, is all of the nights that I’ve gone out with my friends even when my head has been pounding and throbbing. I was so set on helping myself feel less isolated, so I would force myself to go out just so I could see my friends and help my mental well being. Because, if I stayed in, there would most likely be tears of frustration and FOMO rolling down my face. But instead, I pushed myself to power through the pain so that I could not feel like such an outsider, even just for the night. While there are times where this worked in my favor, majority of the time, it always ended up biting me in the butt and taking a huge toll on my head.

We need to practice saying no so that we can find what feels best for our body and our mind. We don’t have to separate the two. We can find balance and we can find ways for both our minds and our bodies to be happy with us.

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“How To Live Well With Chronic Pain & Illness” Chapter 3 Summary: Asking For Help Can Be Your Gift To Others

“No one has ever become poor by giving”

-Anne Frank

This chapter discusses something I, personally, have always struggled with–asking others for help.

Too often I feel like a burden on other people when my headaches are especially bad. I don’t want to be an even bigger burden by asking for favors and assistance.

What we need to learn, as people with medical conditions, is that we cannot get through this journey of ours alone. We need assistance every once in a while and we have to learn that it’s OK to ask for help.

Toni Bernhard outlines a few steps that you can take in order to teach yourself how to ask for help and being ok with it at the same time:

  1. “Make a list of what you need help with.” For me, this is often tasks such as making me food, running out to get more meds, bringing me a wet cloth for my head, cleaning up for me, etc. Tasks that normally I can handle on my own, but when my head is over a 7/10, I definitely need help completing. Toni makes a good point that we tend to think that our loved ones should just know what we need help with–that we shouldn’t have to ask and outline it. I have a few loved ones who will tell you I’m guilty of this one big time. Even with close family members and my significant other, I have to remind myself that they still may not know what exactly I need in a certain moment. What is helpful to me one time, may not be helpful to me in another time. They can’t read our minds and we shouldn’t expect them to.
  2. Match the tasks you need help with to your comfort level with them completing the task. Things like running errands are less intimate than perhaps staying with you in bed and helping calming your anxieties.
  3. Be direct–don’t be passive aggressive. Don’t beat around the bush, be direct when asking for what you need help with. People will appreciate that much more than trying to get them to offer to do the task without you asking.

 

In my experiences, my loved ones just want to help me feel better. Often, I’ve seen them get frustrated because they feel like they can’t do anything to help me. Little tasks that I can’t complete on my own when I’m feeling especially crappy, are ways to help them feel more helpful to me. They can’t cure me (I wish,) they can’t explain why my headaches happen (I wish,) and they can’t make my headaches any less than what they are (trust me, I wish.) But they can help me get through my day by lending a hand when and where I need it.

We as people with chronic illnesses and medical conditions live with daily physical challenges. It’s perfectly ok to ask for help and accept help offered to us to help us get through those challenges.

 

“How To Live Well With Chronic Pain And Illness” Chapter 2: A Not-T0-Do List for the Chronically Ill

I am a huge list makers. If you looked on my phone right now, you’d probably be overwhelmed and confused by the number of lists I have saved. Some of which are extremely random and I don’t remember making.

Living with a chronic illness, I have a mental to-do list running at all times to help me steer clear of increasing the severity of my pain. But this whole chapter in “How to Live Well With Chronic Pain and Illness” is about making a not-to-do list. Here are a few:

  • Do not spend your energy worrying about how others view your medical condition
    • this is one I struggle with constantly. I am always worrying about if people think I’m faking it, or exaggerating my pain. I worry if they think I’m just lazy because I turn down opportunities to go hiking, when really, it would make my head near explode. I worry that people will think I’m no fun because often I have to turn down happy hour invitations because alcohol causes my head to scream. I also always worry that when people see me dancing around and laughing, that they will think I’m “better” and that I don’t have a headache. When in reality, I always have a headache, I just often put my personal enjoyment ahead of them and often put up a front that I’m ok. Just like any other thing in life, we cannot put our focus on how others view us or think of us. What matters is what we know to be true and how we see ourselves.
  • “Do not treat disheartening or discouraging thoughts or emotions as permanent fixtures in your mind”
    • so often I hit dark days when I worry about my life in the future and that I will be feeling sick every day for the rest of my life.These days often entail gloominess and the blues. It’s normal to have these types of discouraging thoughts, especially on days when our pain is at its worst. Do not condemn yourself for these thoughts. These thoughts are not permanent. The blues shall pass and the light will shine through again.
  • “Do not ignore your body’s pleas to say no to an activity”
    • It’s extremely hard to turn down offers to activities that we know will make us feel like the healthier people around us. I remember countless times where I have accepted offers and pushed my body just because I didn’t want FOMO. But, each time without fail, my body ended up paying for it later on. In the moment, it’s easy to forget about the pain. Sometimes, I even forget that my headaches are there due to my excitement or adrenaline. But once I stop moving, trust me, they remind me that they’re still there. The pounding in my head is usually so bad I almost (and likely do) cry. Don’t push your body past its limits. Sometimes on special occasions, if we feel comfortable knowing we will most likely pay for it later, it’s ok to say yes when we know we shouldn’t. But overall, it’s important to stay mindful to what your body is telling you.
  • “Do not put your pre-illness life on a pedestal”
    • this one stuck out to me the most. Almost every day I think to myself “I just wish I could feel like I did x  years ago when my headaches were not a constant.” I daydream about the days where I was exercising daily, partying like a normal young adult sometimes does, and just living life without worrying about setting a reminder for my 3 doctor appointments for the next week. But the thing is, life is always changing. What once brought us joy may not bring us the same kind of joy any longer. Take a look at where you are now, what you’ve accomplished and who you have around you. Ask yourself, did you have these things in your pre-illness life? Most likely, you got to where you are today because of what you went through in the past. And I bet all of you have some really great accomplishments to be proud of and a lot of people who are there for you day in and day out. Put that life on a pedestal.

If you’re like me, than you are your own biggest critic. People like us have a tendency to be hard on ourselves and have a very tough time letting things from the past go.

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Let’s make a promise to ourselves to focus on the good that we have in our lives now, instead of fretting over what we’ve lost from the past.