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.

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.

“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.

 

Mary vs. the MRI Machine

My Neurologist doctor is like that super fancy 5 star restaurant where people are on waiting lists for months just to get a taste of their high-class plates–He’s got a lot to offer, in super high demand, and has to be booked six months out.

Most often, I see my Physician Assistant–who is super awesome, has exponentially furthered my forward progress finding help for my headaches and I love seeing her. But, seeing the actual doctor is a different type of visit. He’s just so intelligent and has a different way of thinking, so there’s always something new that I learn and he always suggests a new path to try.

Today, I continued to explain my symptoms. I told him how my atlas orthogonal treatments (post all about that coming soon!) has helped decrease the intensity of my daily headaches, but hasn’t helped my exertion headaches. Nothing has. I still feel the intensifying pounding when I do yoga, lift, run, walk up the stairs, bend over, etc. From heavy workouts to mundane every day tasks like walking up stairs–my headaches intensify and the pounding begins immediately.

Apparently, patients who experience that same type of thing (headaches intensifying by coughing, bending over, walking up stairs, etc.) often have a blockage in their venous channel. So perhaps I am among those patients. Of course, it’s a very uncommon occurrence, but people close to me know I’ve never been one to exactly fall into the “norm” category, esp. when it comes to my health.

So what does that mean? It means I have to get another MRI–but this time an MRV. It’s an MRI that looks specifically at your veins to look for blockages. If it’s positive, there’s a treatment where they put a stent in to clear up that blockage and open up flow. If it’s negative–well, then more MRIs will be taken and more serious tests need to be addressed.

So here’s to hoping that this MRI is positive (I don’t normally wish for that, nor do many people.)

Let me ask you this: how annoyed and frustrated are you when you’re not able to exercise because you’re sick, or you have a concussion, or you pulled a muscle, etc? Probably pretty frustrated (for the most part) because you want to feel active and youthful. Well, I haven’t felt active and physically youthful in about 7 years. I’m 23 years old and simply walking up the stairs and briskly walking across the room makes my head feel like it’s about to blow. It’s extremely discouraging. All I want is to be able to do yoga, run around carelessly, start  lifting again, doing anything really. Being unable to exercise or be active makes you feel lazy, large and lame. It starts to eat at your self-confidence and self-image. I say this because before my headaches became the way they are today, I was physically active every day and loved it. I loved being active and working to stay fit. It’s not even an option for me anymore.

So knowing that a positive MRI and implanting a stent in my veins could possibly bring me my old lifestyle back makes me oddly wish for a positive MRI result.

 

Anyone else out there experience exertion headaches like me? Or in any way, shape or form?

I’d love to hear your stories, advice, etc! We’re here to support and encourage one another 🙂