Alexis Plofchan is now 22 years old. In parts 1 and 2 of her interview, Alexis detailed her journey with Lyme disease from pre-diagnosis to post-diagnosis and how Lyme changed her family dynamic when both her parents were diagnosed as well. She has battled Lyme disease for eight years, all during key developmental stages in her life. Today, she shares with us the effect Lyme has had on her interpersonal relationships and the impact it has had on navigating the pressures of high school and college.
“It was exceptionally difficult balancing Lyme disease and my day to day life during ages 14-17 years old. Those are such developmental years in one’s life and dictate a lot of who you later become. You navigate being who you are, learning how to trust your gut and interacting with people all while going through the hormone changes that puberty brings.
To this day, I think Lyme has intensely affected certain relationships with friends because there is a certain part of my life that is very hard for them to understand.
They have to learn to just take me saying that I’m “not feeling well” as a legitimate excuse for me to pretty much miss anything. Back in high school, I was dealing with being a typical hormonal teen, and the ups and downs that come with puberty—but also depression, anxiety and so many other symptoms that I didn’t even realize were tied to Lyme disease. Looking back now, all this led to me being very unsure of my own instincts and thoughts. I always questioned whether or not if what I was interpreting in situations with friends was true, or if it was just my anxiety. I know now the anxiety was from Lyme disease, but for most of my high school years, I did not know about Lyme and was unaware just how many things in my life were being conducted by it.”
“For example, I thought my depression and anxiety was just that- depression and anxiety. I also didn’t know it wasn’t normal to be stiff all the time and I had no idea that people didn’t have a hard time forming thoughts, sentences and thinking of words. Once I found out about my diagnosis of Lyme, it took me years to start to put the pieces together and identify the ways that Lyme was and had been manifesting itself. Even though knowing about Lyme couldn’t change the reality of how much my anxiety, depression and exhaustion effected my high school years, it was reassuring in some way to know that there was a driving force behind them and so many other symptoms.
I have always been someone who can trust and rely on my instincts about the people around me- someone who can read people pretty well and through the years have learned to rely on that ability to make friends, keep friends and help myself and those around me. But for a few years I wasn’t able to do any of that. I would act on my interpretations of situations and later realize I was wrong and had acted on my anxiety rather then reality. That made it hard and still makes it hard to this day to trust myself sometimes. In high school, during the worst of my anxiety, I had so many inner-monologues like, ‘This is what I think is happening with X person in my life, but I can’t trust it, because these thoughts and interpretations could solely be caused by my anxiety.’ Before getting sick I was a very confident person, so I was a little more equipped to deal with that self-doubt when it did start to occur. But Lyme and its symptoms did shake that confidence.”
Though Alexis is recounting the history of her symptoms, it is clear that they’re still affecting her even after eight years of fighting.
“That concept, one of questioning my instincts in regards to relationships in my life, is the Lyme symptom that has affected me the most and for the longest time. To this day it still affects how I deal with friendships and other relationships in my life. I always say to my mom that I can handle the physical pain that has become my reality.
But when I have days, weeks or months of emotional and mental instability, I find it the hardest because I feel like I lose myself. And in losing myself I worry about losing those around me.”
“I think one of the hardest things about being in college and dealing with Lyme is that there are not a lot of people in my life who I would let see me at my worst. Recently, I have had a stage of relapsing where I get aches similar to the flu but multiply the pain times 1000. My skin hurts, as though my nerves are on the outside of my skin and any touch makes me want to scream. This specific relapse is the worst physical symptom Lyme has ever caused and has been the most reoccurring relapse in the last year. However, other than my family, I haven’t let anyone really see me during the worst of it and only have about five people in my life who I think I would let see me that way if need be. That is not to say that I don’t have many more people in my life who help me in little ways when I’m doing poorly- like helping me get medicine when I can’t drive- but when I am at my worst and still have to go about my day to day life, I put on a mask and hide the magnitude of the pain.”
“I have built it up in my head that people in my life have to be at a certain “level” of friendship in order for them to see me like that, or even to know about my illness at all.
I have gotten very good at hiding being sick and at hiding just how much it impacts my life on a day-to-day basis.
Most of the time I don’t want people around me to look at me any differently— 90% of the time, that’s how I want to conduct my life. But then 10% of the time, when I am not feeling well, I want someone to understand truly that I don’t just have a cold and that when I say, ‘I haven’t been able to fall asleep lately’ I actually mean that I lay in bed for hours in too much pain to sleep.”
“I know this sounds silly, but sometimes I feel like Hannah Montana because there are two sides of me. And if you aren’t a close friend of mine, you don’t know that other side. It is kind of a Catch 22, in the sense that the days I am feeling the worst, I want someone in my life at college to understand what’s going on. But the level of vulnerability required to show those around me what happens and who I become when my pain is the worst, is not something that comes easily to me. So on those days when I need to just be able to text someone and say ‘I need you’, I instead have set myself up to first explain what is happening- which usually seems too daunting, especially when I already don’t feel 100% like myself.”
Alexis’ struggle with hiding parts of her illness from friends has created a complex social and mental challenge that she has had to figure out in order to facilitate understanding amongst those close to her.
“I have made it a personal goal in the last year to be more open in all aspects of my life, especially in regards to Lyme, with the people that I think deserve to know.”
“I am learning just how true the statement is that relationships are two-way streets. If I want people to be open with me and to make friendships that matter and are built around trust, I need to be willing to open up as well. It has been honestly one of the hardest things I’ve had to do.”
Alexis continues, “For eight years I have been very hesitant in telling people about my disease at all, let alone explaining it in a way that does it justice. I realized just how good I had gotten at hiding it when during my freshman year I was Skyping one of my best friends from high school and mentioned Lyme disease and she responded with, ‘oh wait you still have that?’
The reason I decided to try to be more open and honest was because it felt wrong and was exhausting to hide a huge part of myself. Putting a mask on every day, as dramatic as it sounds, is tiring.”
“But going against what I have been doing for eight years makes my skin crawl because of the level of vulnerability that is required to do it. Vulnerability is not my strong suit. I fear that if I start telling people and become more open, I might start dwelling on it much more. Which will in turn make me more pessimistic about the whole process. This cycle of being pessimistic and being upset about being sick was one of the key reasons I decided to take my semester off last year. I couldn’t seem to get out of continuously dwelling on the day-to-day opportunities that Lyme was making me miss out on.
I need to tell people what’s going on, but not so often that I am only thinking about Lyme and what I am missing out on.
It would be very detrimental to my mental health to have to explain what’s going on to a lot of new people constantly. I have gotten to the point where I can explain the last eight years in a mechanical, emotionless way. But when I do it that way, I tend to downplay it. And I think the hardest part is if I want to let people know how much it has affected me, I have to relive it… but then again, not reliving it and telling my story in a more guarded and indifferent way, doesn’t really show how awful it has been and continues to be at times.”
“For example, before this interview, I was a little nervous about reliving it. What I have told Patient Worthy today in this two hour-long interview, normally I’d share in two minutes with people who ask. It’s just a hard conversation to have. Thinking about sitting down and going in depth, step by step, through the last eight years is daunting. Drawing out how it’s affected me, basketball, friends, school—that is so ridiculously tough.
I don’t want to think about all that Lyme has taken away.”
How Lyme affects Alexis’ life continues to change as the years go by. And that constant change is hard to keep up with, and at times, it’s difficult to accept.
“After high school, I thought I had figured out how to handle the way my depression and anxiety manifested themselves and impacted those around me. But in the last year and a half, issues surrounding losing the ability to trust my instincts with those around me have resurfaced. I remember calling my best friends and saying ‘I thought I had figured it out? What the hell?! I thought I learned how to handle my depression in this situation.’ And she was said, ‘Well you did in high school, but now you’re in college- a different environment with new situations happening that are bringing up old symptoms. Don’t be so hard on yourself; you will learn how to adjust again’. It took a while, but I got over being annoyed about this and accepted that I would just have to be continue to be flexible.
Maybe to someone from the outside, it looks like someone who has been dealing with an eight-year chronic illness would have it down by now- from what medicine to take and when to see doctors. But in a lot of aspects, it moves and changes, and I move and I change. I have to adapt to these changes along the way.”
“I’ll never know 100% if these issues are because of Lyme or not but I am learning not to care one way or the other because either way, the anxiety and depression are there, as well as the physical symptoms.”
“It is the reality of who I am and how I handle things doesn’t depend on what is causing them, but rather how I decide to approach them. There is some value in not being in the mindset of ‘Okay, every thought or pain that I have- is this Lyme-induced or not?’ It took time not to blame Lyme for everything. I had it in my head- that if I could determine it was Lyme, I could work through it easier. But as I have gotten better in the last year or so, I’ve learned to go from banking on the fact that I could determine the cause, to ‘I’m not going to know, either way I just have to handle what’s happening.’”
“I have learned to let go of the control a little bit in order to prevent myself from overthinking everything.”
One positive aspect that Alexis attributes to suffering from Lyme for so long is her ability and desire to be a better friend to those around her.
“It has helped me evolve personally and in my relationships with friends and family.”
“One of the reasons I took a semester off was that I was putting others first, too often. I was the ‘go-to’ person for so many of my friends- and in a lot of ways I loved being that for them. I think I like helping others through things because it distracts me from being sick. It’s nice to be able to help people with issues that they may have control over when I can’t do it with my own life. So why not do it for someone else’s life? I have learned that I love being in control but have also learned that with Lyme disease, after a certain point, I have no control over it. I tried to find that control in other situations and people. But in the end, I couldn’t handle the magnitude with which I was investing myself in others. This was one of the hardest realizations to come to. I was angered that a huge part of who I am had to be stripped, even though only for a few months, in order for me to get better.”
Alexis admits that having a chronic illness has given her a more grounded perspective when it comes to issues like exam grades and everyday “college life” issues.
“I think the biggest thing I have been grateful for is that it has affected the way that I look at everything in life. I think for most college students on campus, they are completely bogged down by stress of classes and what is going on around them socially, etc. I am so thankful I have had this experience because it puts things into perspective. I personally think I have a well-rounded idea of what is important. Okay yeah, I have a paper due tonight but I am not one to get super stressed, because for years when I got stressed, I got sick. So I have had to teach myself not to stress… at least not as much. If I don’t get it done, it’s not the end of the world. I have taught myself to know when I am pushing too much. My health always comes first.”
Not only is Alexis keeping herself from being too stressed for health reasons, but like many people with chronic illness, she has to prioritize where to put her energy. Most of the time there simply isn’t enough energy in her system to do everything she would want to do if she were not sick.
“Lyme has showed me what things, people and activities matter most to me. It is eye opening for me to see what or who I instinctively will sacrifice my energy for, especially when I’m not feeling well.
It is a subconscious way of knowing who and what activities in my life are valuable to me- even if I didn’t necessarily realize it at that moment. I won’t put as much energy into things if I don’t have that passion because if by doing that activity I start to get sick, I will then get resentful.”
Though Lyme has impacted the way Alexis thinks, her relationships, and her social life, she has found a way to look at her experience in a uniquely realistic way. This battle has helped her realize what is important in life and see that even though she may be dealing this this now, the lifestyle changes will hopefully make a positive impact in the future. This has likely helped her to push forward and continue to make progress.
“Lyme reminds me that health is not a guarantee by any means, and I don’t think that thought process is something that people really have until they’re much older. I remember being so frustrated when I had to change my diet, thinking, ‘People my age don’t have to worry about this now- why can’t I just eat all that food and drink tonight?’ I would often call my parents upset with what I had to change or miss out on. Or even call them crying about how it was unfair that at my age, I was having a hard time climbing steps or was finding that breathing was too exhausting of a task.This negative train of thought consumed me for a few years until I finally learned to re-frame it.
I cannot tell you how that happened except to say that time was really what helped. I am finally at the point where I am accepting it.
I have grown to be thankful for Lyme because I know that there is going to be a reason I had to go through this. In order for me to get through being this sick, I keep telling myself there is a reason why I am this sick.”
“I think there will be a moment where I realize ‘Okay this is why I have had to be this sick. It is to be able to be there to help this person or to help in this situation.’ And if that is the case, it will make all of this suffering worth it.”
Alexis’ philosophy on her disease is an admirable conclusion, one that wasn’t easy to come to. Additionally, it isn’t always easy to remember this during the days and weeks she still is fighting the worst of her symptoms. When I mentioned her commendable attitude, she quickly let me know that we should expect no less from herself, and that she does not “do well” with compliments on her ability to fight.
“I think there is a fine line between giving myself the credit that I definitely do deserve and having an attitude of, ‘I have done this, please realize it and feel sorry for me.’
I know that I have fought many times and I think a lot of people would not be where I am right now. But again, because of who I am and how my mindset works, I don’t like letting myself think I have done the impossible because I know there are so many other people who are going through the same thing or worse.
The fact is, this is what I should expect from myself and it would be weird if I didn’t expect myself to achieve the goals I set, because then I would be allowing Lyme to dictate my future. It has already changed my past and present, despite me constantly fighting to make that change as small as possible- I don’t want to give it a head start at changing my future more than it needs to.”
From questioning her perception of the world around her, to figuring out how to approach letting people in, Alexis has had to adapt to the ever-changing dilemmas that Lyme presents. This is how she views the future of her health- as an ever-changing dilemma that she will have to continue to learn to navigate.
“Sometimes people forget that when you have a chronic illness, it doesn’t just affect you physically, it also affects your perception of your life and the world around you. Knowing you’re sick, you form certain truths that may one day become non-truths, and you have to adjust to that. It’s very mentally challenging. One day, walking up the stairs without trouble is a reality- and the next day it isn’t. That is what I mean by truths and non-truths- they are ever changing aspects of your reality.”
So how does Alexis view these truths when looking towards her future with Lyme?
“Over the last eight years I have come to see my illness as a permanent, constant, huge impact on my day-to-day life. That has been a truth and to this day still continues to be one. For many years, it was a reality that almost every decision I made, I had to think about how/if I could physically handle the consequences. But as I have gotten better in the last year, I have realized that that truth/reality will shift as time goes on. Ideally I will get to the point where Lyme is no longer 80% of my thoughts but just 20%. I am definitely on that path right now- but what I did not expect was how hard it would be to re-shift that mindset.”
“There have been times when I have been almost scared that I am not devoting as much mental energy to my health- it makes me feel like I am doing something wrong. I am learning that I have to allow myself to let go of the old “truth” about what my life has been in the past and accept the positive changes that come with slowly getting my health back.
I am very hesitant to be happy when I have weeks or months of relatively good health- because I have grown to view relapsing and setbacks as a reality that always creeps into my life. Trying to break down that truth and allow myself to start to look at my future as potentially dictated less by Lyme than my past has been, is easier said then done. But changing that mindset is something I am happy and eager to tackle because being able to tackle it means that I am regaining my health.”
