Vulnerability and Authenticity with Chronic Illness

What makes you vulnerable makes you beautiful…there’s a word for it: authentic

Vulnerability is a scary thing. We don’t want to look weak. We don’t want people to pity us or judge us. We know we can’t be perfect, but we don’t want to seem too imperfect. So often, we think our imperfections are our flaws. However, we shouldn’t confuse the two or make them interchangeable. Because our imperfections are what make us unique.

When you have a chronic illness, you experience a whole lot of vulnerability. Your parents become your at home nurses, your friends have to run errands for you because you can’t physically get out of bed, your partner sees you cry out of pain and frustration or curled up in the fetal position because any other position is too painful. These are all vulnerabilities that we can hide from the outside world, though.

It’s one thing to be vulnerable with the people who care about you and love you – it’s a totally new ballgame when you show your vulnerability to strangers!

But, spoiler alert – you are human. Every single person you pass on the street is self-conscious about something. Every single person has an imperfection (or lets be real, imperfections). But not everybody shares theirs  and because of that, someone else who may have a similar imperfection feels alone or isolated because they think they’re the only ones like them. They may end up confusing imperfections with flaws and look upon their own imperfections with a negative mindset.

I know it’s hard to share our stories and our vulnerabilities because we think whoever we’re sharing them with may judge us. As humans, we sometimes judge another person or their situation simply because we are unfamiliar with or can’t relate to them or their situation. But, that’s not fair, is it?

I can raise my hand and say that I am still working on sharing my story and my health journey with not only strangers, but sometimes friends, because I’m worried they’ll look at me funny, or think I’m strange or think I’m over exaggerating my pain & symptoms. So, most of the time, I turn to writing because it’s personal and I don’t have to show it to anyone else.

writing in DC

But recently, I’ve been trying to really open up to my own vulnerabilities and show all aspects of my journey without hesitation or reservations. And I urge you to do the same.

Share your journey with others. Give the world a window into the unique person you are. No one else shares your story, but I promise you that someone else can relate to your story. By being vulnerable and showing that vulnerability to the outside world, you could be helping someone else just like you. And, honestly, you’ll end up helping yourself most of all.

November Intentions: Grace and Gratitude

Hello November!

Setting monthly intentions has quickly become one of my favorite mindfulness practices. It’s a way to set goals for myself and a way to remind myself of the mindset I want to live in. I’ve started placing my intentions on my dresser so that I have to look at them every single day. This way, I’m not just writing the intentions to write them – I’m writing them so that I can really live them out.

With that said, here are my intentions for this month:

  1. Start each day by asking for grace
    For the past week or so, I have made it a point to start each day by asking God to pour out his grace on me so that I can face the day ahead of me and whatever it will bring along with it – good or bad. And I have noticed a difference in my mindset throughout those days. Sometimes I have to remind myself to do this – I like to compare myself to an athlete in training – training myself to pray consistently in the morning. Someone said something to me recently that really struck me – she said we can compare ourselves to cars and grace being our fuel. We can’t ask for grace once and expect it to last. We have to refuel, and ask for grace each day. So, I try to start my days by filling up on grace to get myself through the day. If praying isn’t your cup of tea, maybe you start your day by meditating for five minutes, or writing down your intentions for that day, or taking five deep breathes and silently tell yourself “I got this. I will conquer today. I will be patient through any obstacle that comes my way today, because I am strong enough to overcome anything.”
  2. Write three letters to people in my life (and continue this each month here after)
    One of my hobbies is creating handmade cards. I like the creative aspect of it and I like giving them to people and seeing their reactions. I like putting a smile on people’s faces whether it’s for their birthday, a holiday, a celebration or just because they’re super awesome and deserve a little extra love that day. Also, a lot of my family & friends don’t live in the same city as me. So, I’m going to use this hobby to fuel my creative tank and also to keep in better touch with the people I love and care about.
  3. Continue networking and saying yes to new opportunities
    In the past few months I have tried to put myself out there in a number of ways – I attended a BlogHer conference in NYC by myself where I knew zero people; I have attended events that people I don’t know very well have invited me to, where I knew I would know only that one person there; I’ve reached out to different chronic illness support groups as well as other advocates and influencers. I love meeting new people and learning their stories. I love sharing knowledge with and gaining knowledge from knew people. Everyone has something to teach us, so why not ask? I’ve also learned that I have had some of my best times at events and things that I wasn’t originally looking forward to that much or that I was really nervous to go to. Put yourself outside of your comfort zone. Do something new. Explore a new city. Try a new hobby. Say hi to that stranger sitting next to you. You never know where it could take you.
  4. End each day with a grateful heart
    This is the season of giving thanks – but that doesn’t mean we should only be giving thanks during this one month. A couple of months ago, I created a new habit that I know I’m going to stick with. Each night before bed, I write down the things I am especially grateful for that day and I then write down ways in which I can improve (physically, emotionally and spiritually) the next day. It’s such an eye-opening way to see that we have so much to be thankful for. There are so many people who care about you. There is joy in the little things. And there is always room for improvement.

Have you set any intentions for November? What are you most grateful for right now? How do you wish to improve in the next month?

November intentions

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.💛

October Intentions: Routines & Habits

This month I want to focus on creating healthy routines & habits that benefit me both physically & mentally.

Here are my intentions for October:

1. Try an anti-inflammatory diet

I want to try a diet that is heavier in anti-inflammatory foods to see if it helps my headaches at all. I’ve also been experiencing inflammation in other parts of my body so I want to see if it will help alleviate inflammation in general.

If anyone has tried this kind of diet and has any tips, please share!!

2. Repeat and use the serenity prayer in my everyday life

God grant me the serenity to accept the things I cannot change, courage to change the things I can; and wisdom to know the difference.

So often I try to change things that are not in my control. I can only control my own actions, not the actions of others around me. Instead, I want to focus on the things in my life I can change.

3. Turn my attention away from things that do not fill my cup.

Someone said to me recently, do things and surround yourself with people that fill your cup, not empty it. And I really took this to heart.

4. Create & stick to a routine

I really need to prioritize my sleep & eating habits. And it starts today!

October intentions

What are your intentions for this month?

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?

Falling Like the Rest of Us

Falling is an accident. Staying down is a choice.

Sometimes it feels like we are constantly falling. You know that feeling you get in your stomach on a roller coaster drop? Or the feeling when you trip and fall on your face in front of a bunch of people? Or when you somehow fall UP the stairs?

When your health continues to knock you down over and over again, that feeling becomes overwhelmingly normal and strong. We can convince ourselves that we’re the only ones falling this much, because no one else has the same or as many or as debilitating health problems as we have.

We look around and see that everyone else is on their feet, heads held high just emitting “I have my life together” kind of vibes.

But in reality, every single one of those people you see and pass by every day has fallen at one point. More than once. Whether it’s due to health challenges, relationship problems, family issues, job losses, etc. It has happened to everyone.

Some of those people are standing again because they made the choice to not stay down. If they can make that choice, so can you. Yes, some people get knocked down and tripped up more than others. But it happens to all of us. No matter how many times we fall, we have to make the choice to stand back up.

And make sure to do what you can to help the people around stand back up. They may need your help just like you may need theirs. They could be falling in the same moment you are. Grab each others hands and pull each other back up.

Aerial yoga, falling

Telling Your New Supervisor About Your Chronic Illness or Condition

One thing I have always been nervous about when starting a new job is telling my new supervisor that I have chronic health conditions. It’s a conversation that is necessary but that can cause people to feel uneasy or nervous.

I always worry that my supervisor may be uneasy about my situation and that they themselves will worry about my ability to perform my duties. With a health conditions that are invisible on the outside, like my migraines, narcolepsy, etc., I sometimes worry about the following things: Will they think I may not perform as well as others? Will they get frustrated with how frequently I need to leave for doctor appointments? How understanding will they be when I am having a bad pain day and need accommodations or need to go home to rest? Will they understand if they don’t have health problems themselves? How can I make sure they don’t think I’m faking it.

As with anything, we can’t understand what someone is dealing with unless we are dealing with it ourselves. It goes the same for health conditions. Someone can’t fully understand the symptoms that come along with our conditions & illnesses unless they have that condition or illness themselves.

However, when it comes to working in an office, good supervisors will always be accommodating and will try to understand as much as possible. Even though I’ve always been nervous to talk to my supervisors about my chronic illness upon being hired, I’ve only ever had amazing supervisors who put my health first and who are completely flexible.

giphy

Here are some tips on how to breach the topic and talk through your chronic health conditions & illnesses with your new employers and supervisors:

  • Be open and honest – the more your supervisor knows, the more accommodating, flexible and understanding they can be
  • Remember that everyone is human and everyone deals with something. Maybe they also get migraines or deal with another health condition. Even if they don’t, you have to remember that they will have their own situations that need accommodating from time to time.
  • Remind them that you will be fully capable of doing your job and that this won’t affect your work ethic. Instead, it just means that some days the pain will take control,  that your health will have to take precedent & some days you will have to do what is necessary to feel better or decrease the pain however much you can.
  • Work with them to come up with back up plans on if there’s ever a day that symptoms show up unexpectedly and you need to stay at home on short notice.
  • Tell them about the doctor appointments that you have on a regular basis but make sure they know that from time to time, emergency appointments may come up.
  • Ask them if they require any doctor notes for validation so that you can notify your doctor

Remember: You are just like the employee sitting next to you. You are capable of performing and producing excellent work. You have the same great work ethic and great ideas to contribute. This employer hired YOU for a reason. Because you were right for the job!


Disclaimer: I am not a doctor or a lawyer. The opinions and advice listed above are my own and are based on personal experience and do not reflect the opinions of others. Check out the Americans with Disabilities Act if you have any questions on working as a person with a disability. 

The Reasons I Sometimes Don’t Practice What I Preach

Why is it that we can urge people to take control of their health when sometimes we aren’t even taking control of our own?

Do you ever catch yourself doing this?

This is me calling myself out on doing it.

Recently, I have been ignoring new symptoms or pain and procrastinating making new doctor appointments because I’m afraid of hearing a new diagnosis, or having a doctor tell me I that I need to try a new treatment. I have been ignoring things because I am afraid to deal with what comes next.

The last few days, I have been thinking a lot about why I have been doing this – trying to get a better understanding of whatever is subconsciously holding me back from practicing what I preach to so many.

Here’s what I’ve come up with:

New medications make me uneasy

I’ve been seeing all different types of doctors more regularly than your average person since I was about 12 years old. For a while, I was rotating through so many different medications/pills for my headaches & migraines that I honestly don’t remember a lot of the ones that I tried. I’ve experienced little to no side effects and I’ve also experienced some pretty intense negative side effects. Because of my experiences, I get uneasy about trying new medications. I also get uneasy about the fact that I continue to put these chemicals in my body without knowing how they will affect me. So, over the years, I have become more hesitant to readily fill a prescription a doctor quickly suggests.

I don’t want a diagnosis of yet another condition/syndrome

Another reason I subconsciously procrastinate dealing with new pain & symptoms is that I have received four new diagnoses in the last four years – a severe food allergy, Narcolepsy w/o cataplexy, Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). So I am scared that if I go to another doctor with new pain or new symptoms, they’re gonna slap yet another label on me. Which, I know, it’s better to have the knowledge than to be ignorant to it. And I can’t predict the future. And I shouldn’t worry about things before they happen. I know. I get it. But it’s hard to think that way when I’ve been through this pattern of “go to new doctor, get new diagnosis.”

I can’t afford another condition/syndrome

It’s uncomfortable to talk about finances and even worse to think about them. But as people with chronic illness know, a lot of your money goes toward your health (or rather, trying to fix it.) Most people my age are both 1) spending their money on travel & activities and 2) saving it. I feel like I’ve had to pick one of the two. And I can honestly (and either shamefully or shamelessly, I haven’t decided yet) say that I have not been saving mine, and instead been spending it on my health & living life as an adventure. I want to participate in the things my friends are doing. I want to see the world. I want to make memories. When you’re sending a big chunk of your money on doctor visits & treatments, you really have to pick and choose where your remaining money goes. So I know that seeing a new doctor and possibly paying for new treatment only means more of my money will not go where I want it to.

I know, I know – this sounds like a whole lot of “cry me a river,” but it’s something I think a lot of people with chronic illness deal with.

Like anything else, though, I know it’s not OK to ignore something just because you don’t want to deal with it. I know that the reasons I have listed above are very valid reasons for me to be hesitant to address these problems – but they aren’t reasons for me to pretend these problems aren’t there.

I write this post as a way to 1) hopefully write something that you can relate to, so that you don’t feel so bad if you are also procrastinating dealing with a new health problem or symptoms and 2) to hold myself accountable.

If we talk the talk, then we should also probably walk the walk.