Chronic Illness and Isolation
Whether you're bedridden, housebound, or just trying to get through daily life, chronic illness is known for causing various degrees of isolation. The emotional and physical isolation will try to break you, and once it has, it'll take everything in you to fight it and fight for authentically vulnerable relationships. I wish someone had warned me that isolation would be a side effect, or a symptom, of chronic illness. I wish someone had told me that it didn't always have to be that way.
This is one of the first pictures I posted on my @StrongerThanPots Instagram account. I remember when I first saw it and how accurately it described what I was going through.
I have a distinct memory from back in 2014 when I was bedridden for around 8 months at this point. I had just begun my journey to try to recondition myself and decided to walk the 20 or so steps from the room I was staying in to my mom's room for the first time. I walked up to a wall in her room which has windows as wide and tall as the wall itself. I just sat there on the floor, staring out the window for the first time in 8 months, and it hit me. The world hasn't stopped, the world hasn't been put on pause, there are people out there walking their dogs before they go to work, cars driving by, and moms pushing their babies in strollers, and none of them know how badly I wish I were them. The room I was staying in at my mom's had a window in which I could see the clouds, the sky, and the tops of the trees in our backyard, but I didn't see people. So that day the harsh reality of my isolation hit me like a ton of bricks: there was them, and there was me. It was like a two-way mirror where I could see them but they couldn't see me. I still feel like this sometimes.
I see their life because I had it.
I had the busy schedule of going to school full-time and working part-time.
I had the ability to run, hike, and do hot yoga.
I had the capacity to literally do anything I wanted.
So when I see healthy people, even now, I feel like I can truly see it because I had it, but they've never had what I've had.
Being bedridden and housebound causes social isolation. You don't have the freedom to go out and hang out with friends. You don't have the freedom to use previous coping mechanisms to cope with your new reality- whether that used to be out with friends, going for a run, being in nature, etc. You feel trapped. You might as well be in quarantine because it would feel the same way. The cabin fever alone will eat you alive. When I first became bedridden, I used the term cabin fever a lot because I think it described the experience perfectly.
Cabin fever: "extreme irritability and restlessness from living in isolation or a confined indoor area for a prolonged time." -Merriam-Webster
The social isolation a chronic illness causes is complex and difficult to adequately describe to those who haven't had to experience. But I know, if you have a chronic illness and are reading this right now, that you get it. I wish you didn't, but you do.
Image from a presentation by Lis Cox
Social isolation and loneliness are different parts of the same beast.
There was a study done by Andrew Steptoe that distinguished the difference between social isolation and lonelieness. Isolation was measured by the amount of contact people had "with their families, with friends, with relatives, and whether that's maybe daily or weekly, or possibly once a month or less than that. And [they] asked people if they were involved with organizations such as social clubs or churches or other groups of that sort. And so through using those different kinds of measures, putting them together, [they got] an indicator of social isolation."
But as Steptoe explained, loneliness "is much more complicated. It's really a subjective experience. It's a feeling of being - of lacking companionship, possibly lacking intimate feelings with other people."
If you're chronically ill and just read those two definitions, you're probably thinking to yourself, well I've experienced both. Me too. There's a sort of social isolation that comes from being bedridden, housebound, or not having enough energy at the end of the day to pursue friendships. Social isolation is experienced by few, but those with chronic illness are definitely some of those who experience this. Loneliness, on the other hand, is a common experience by those both within and outside of the chronic illness community. Both are detrimental to our subjective wellbeing.
But the problem is, that (emotional and physical) isolation is forced on those with a chronic illness which makes loneliness an inevitable, and more intense, experience.
The study found that "isolation, not loneliness, may actually shorten people's lives regardless of health or income" (Steptoe, 2013).
I feel like chronic illness sets us up for various degrees of isolation. First, there's the social isolation that comes from not being able to go out as much, maybe not being able to work and having that kind of social context, and from our various limitations. Then, there's the emotional isolation. I feel like we have more control in this area and so that's what I'm going to be spending the majority of this blog post talking about. Emotional isolation, I'd say, is the distance created between you and your loved ones due to the impact of your chronic illness.
Whether it's caused by well-meaning comments from loved ones that do more harm than good, or not wanting to be seen as a burden, or people actively not understanding or supporting us, or the depression that causes us to withdrawal from society, isolation will try to suck you in.
When I was bedridden I only saw my mom, my then boyfriend, my brothers, and once a month I'd have some friends come to visit. My friends asked to visit more but I didn't want them to see me like this because I could see on their faces that it was hard for them to know what to say or do. also thought that this illness would be acute and that "I just needed to get better and then I would hang out with everyone again"- that was my excuse for almost the entire time I was bedridden (denial much?).
But I also felt lonely when I had visitors. Here you are, you just lost everything to illness, you can't think straight because brain fog, fatigue, and pain have plagued your mind, and you're supposed to make small talk. All of a sudden you feel like these friends you've had all your life don't know you. They don't realize they don't know you anymore- you look the same, you sound the same, but they can't begin to comprehend how you don't know who you are anymore.
I remember looking in the mirror when I was in the washroom during my first few months of this journey and not recognizing myself. I truly did not recognize the person in front of me to the extent that I cried and called on my mom for help. I felt so detached from every part that made up my life and identity, how could I possibly feel any sort of attachment to anyone else?
They just don't get it.
The emotional distance will kill you just as quickly as the physical distance will.
They don't get it. They never will (or we hope they won't). They don't understand. They don't get how hard it is. They don't get that we're suffering. They don't see it. They don't feel it.
I repeated these thoughts through my mind like a broken record, not realizing that I was only increasing the distance between me and them.
That day I remember putting my hands up on the window and just staring down. Nothing felt real; partially because brain fog caused debilitating depersonalization, and partially because of the reality of everything you're going through.
"What doesn't kill you makes you less relatable." -Author unknown
It's a hard reality when you realize that with every symptom and with every condition, you become less and less relatable- to your family, to your friends, to anyone really.
Generally, when people don't relate to what you're going through, they also don't know what to say. So they'll say the wrong thing, they'll feel uncomfortable, and they'll withdrawal. You're more vulnerable than ever, more easily offended than ever, and you need your friends more than ever. They don't know what to say or do, so they'll resort to the cliche's that so easily break connection and vulnerability. You end up developing resentment because they get to continue their own lives while you can't and they just "don't see how good they have it." It's a perfect storm to end a friendship, or at least, create some distance.
“Loneliness does not come from having no people around you, but from being unable to communicate the things that seem important to you.” -C.G. Jung
How do you maintain a friendship with someone who just doesn't get it?
If they're toxic, actively minimize your suffering, blame you, or dismiss you, then that's a friendship that needs to go. That's not a friend but a bully. If they just don't get it, but are willing to learn, then I'd encourage you to hold onto those friends. It's hard. They'll complain about colds and how tired they are and you'll just want to shake them and tell them "you have no idea how badly I wish my tired was your tired, and my good days were your bad days." I've found that having a wide range of friends for everything really helps. I've met some of the most authentic friends I've ever had at my previous and current Church. They don't need to know what you're going through, they just need to have known what it's like to suffer or lose something, and speak from a place of genuine empathy.
That's a learning curve on it's own that I'll be writing a blog post about in the future. But in the meantime, I thought it was worth to briefly mention because I know how much resentment, distance, bitterness, and grief can grow from a place of not being understood. But before chronic illness, I didn't understand either.
Before POTS, I didn't know a single person with a chronic illness. I had no idea what an invisible illness was! I had heard of hypothyroidism because I knew thyroid conditions were common on my dad's side of the family, but from my understanding of it, they were tired and took meds and it helped. I honestly had no concept of this invisible battle, and I think that's why I'm able to give grace to those who don't either.
I used to drive by hospitals without thinking twice about the people inside of them fighting for their lives, a diagnosis, and treatment. Now I can't drive by a hospital without thinking of it.
Isolation tries to attack the chronically ill individual from all angles.
The first time I left the house (besides my ex-boyfriend's college grad) and doctor's appointments was to join this group called Freedom Session at my Church. I had no idea what I was signing up for, and if I did, I don't know if I would've done it. But it was revolutionary for me. Life-changing. It's a group that's all about having freedom from your past. I thought I had freedom from my past, which wasn't all too shady but was clouded with a lot of really intense emotional abuse, but boy was I wrong. My boyfriend at the time was doing it and I wanted to finally get out of the house after 9 months of only leaving the house for doctor's appointments. So I started training to be able to sit up for 1 minute a day during the summer (the program started in September 2014) to train myself for the 2 hours I'd need to sit up for once a week at this group. I ended up going almost every week to the program and found community, hope, and freedom from a lot of things that mentally drained me. I made 3 of my best friends through this group. These 3 best friends know what it's like to go through things. They are empathetic and always say the right things. To this day, they are some of the first people I reach out to during difficult times and they always speak life and hope (without minimizing what I'm going through) into my situation.
If you're open to it, I'd really recommend joining a church community in your area. If you're new to the church scene, googling non-denominational churches in your area is a great start. I can't paint Christians with the same brush as I know many of my followers have been hurt by the Church. But both my previous and current church have visited me in the hospital, hosted prayer nights for me in which I was completely healed from certain ailments, had flowers delivered to me, and have been the biggest source of life in the fight against chronic illness and isolation.
If that's not up your alley, joining random clubs or groups in your city may sound scary but these sort of organized communities are one of the key components in preventing loneliness.
As I slowly began to grieve everything I had lost, while still fighting for everything I once had, I started to see friends more and more but it was a struggle. I realized that it was good (necessary) for my mental health but it took every ounce of my energy and strength to do it. I was mostly housebound and would go out once every couple days for an hour to a cafe or a church event. I'd have to recover for the rest of the day but it was worth it, I needed it.
As I slowly was put on a treatment protocol that worked for me, and became reconditioned, I intentionally became more social. When I was out in public I didn't want to talk about my illness. It wasn't like I was trying to hide anything, but I just wanted to escape for a minute. I had to live with POTS every second of every day, I didn't want to talk about it that much too. But that also meant that people didn't realize the extent of my reality. They saw me bedridden, yes, they came and prayed over me, yes, they visited and brought meals, yes, and for that I am eternally grateful. Those little bits of normality in my life, those moments of feeling loved, they saved me. But there's only so much you can understand from the outside.
From the outside looking in, it's impossible to understand.
From the inside looking out, it's impossible to describe.
Then after experiencing the intense entrapment of cabin fever for too long, I decided, impulsively, that I was going to move back into my apartment that I lived in before I got sick. An apartment I adored but reminded me intensely of my initial moments of my first POTS attack. An apartment in which when I walked in I experienced intense PTSD flashbacks. An apartment that was 45 minutes from my family's house and 30 minutes from my closest friend. This was me trying to find independence and trying to escape. I needed to do this though. I needed to move forward. But man did it make it much easier to isolate myself.
When I moved in I was enrolled in 1 class. I couldn't handle more than 1 class, I didn't have the energy to go out and do more, and I didn't invite people over much.
When you don't have the energy to do more than 2 hours of activities during the 14-or-so hours a day that you're awake, that makes for 12 hours of loneliness.
I couldn't handle more than 1 class, I didn't have the energy to go out and do more, and I didn't invite people over much. Why? Partially because I'm really extroverted and knew I would overdo it by talking a ton and doing more than I should. It was torture having people over and just lying there when I was bedridden.
Before I got my rescue dog Fozzy, I was reading an article about how to make a comfortable transition for your new dog. You don't know the exact details of their past and this new change will be overwhelming for them at first. The article recommended that you focus on "decompressing" your dog for 2 weeks. Simply put, it meant providing your dog with a simple routine with minimal stimulation for 2 weeks to allow them to decompress from whatever their past had them endure. This allows them to adjust to the change without the extra stimulation of introducing your new dog to everyone you know.
As soon as I read this, I realized that what I had previously been doing, and still was at that point, was decompressing. I just wanted to be alone in the quiet because I needed to adjust to the change without distractions or additional stimulation to process.
So I decompressed. I worked on surviving. I wanted as minimal distractions, stimulation, or change as humanly possible. I did this for around a year. I went to church and church groups multiple times a week, I went to my one class, I'd visit family and friends, but it was 1 thing every couple days at most, with may hours of loneliness left to fill the gap. I don't know if I could've done much more about this back then, though, besides invite people over more and let them see the reality of my life without the walls I put up. I truly did need to decompress but eventually realized that I needed to let people in.
Although I am incredibly extroverted, I need my alone time to reflect, pray, and decompress, even still to this day. I will feel unsettled if I do not have this on a daily basis, but now I know that I need to physically spend time with loved ones and not just message them. Now I prioritize this even when I'm not feeling well. Now I realize that often times spending time with loved ones is worth the extra spoons it costs if it puts a smile on your face.
I did the best I could with the resources I had. I had to learn how to survive this new life before I could learn how to thrive.
I truly needed to decompress and don't think I would have done that differently, but now I'm no longer needing that and am wary of when I start to convince myself that I do. When I told my counselor (who I started seeing weekly in April 2017) about that season in my life, he told me that people can't heal alone. People often want to deal with their depression/grief in private and wait until they're "healthy" to present themselves to the world again, but it doesn't work like that.
As a society, we often tend to withdrawal when we're going through something but withdrawing will ensure that we're going through that emotional pain for longer and with less help. We are communal beings. You might be used to "doing things alone" and not see a need for other people, especially if you've been hurt by them, but we're all equally interdependent on each other. When you isolate yourself in suffering, you don't allow others to speak truth into your situation. When you feel like things will never get better, or that no one would miss you if you were gone, you're only hearing your own thoughts about the situation (which are extremely biased and emotionally-loaded). Isolation ensures that your perspective is the only one that's heard and therefore, believed. Without allowing someone to speak into your situation, you'll allow it to grow.
Isolation is a symptom of depression, not a cure for it.
Within the first year of moving out, I developed a thyroid tumor that caused severe depression the week before my period each month. Left undiagnosed and untreated, I lay in my bath tub, fully clothed, with no water in it, for hours. I was numb at best, and suicidal at worst. I kept thinking that no one would know if I died because I live alone.
Once I started leaving the house more I noticed that if I went 2 days without seeing people, it DRASTICALLY impacted my mental health. It was so noticeable. So I made sure to only have 1 day at a time where I wouldn't leave the house (besides walking Fozzy). I assumed this was because I was extroverted but as I've recently learned, this isn't the reason. Slowly, the treatment of my thyroid tumor, adding more classes to my schedule, inviting people over more, getting on a more effective treatment regimen, forcing myself to leave the house once every 2 days, and then eventually getting Fozzy were all small steps in the right direction.
I've learned that when you're fighting to regain your old life, or any life, after developing a chronic illness, you start to think that all these small steps in the right direction are in vain. You don't see immediate results and you, understandably, become frustrated. I didn't believe I was getting anywhere, I didn't believe I was ever going to get anywhere. But all these small steps in the right direction eventually gave me a life I never thought I'd be able to have. This is the same for isolation.
Getting Fozzy was one of the best things to fight my isolation. Before him, I wouldn't leave my apartment at all for days at a time. With him, I had to leave my house, push my limitations, get some sunshine, and see my neighbours around 4 times a day. I don't say it lightly when I say that he saved my life. He brought me out of the fight of the depression my thyroid tumor caused. He was one of the most important steps in fighting the isolation. I wouldn't have left the house for me, but I would gladly leave the house even if I was extremely symptomatic, for him.
From the first day I brought him home
I realized that I had to fight isolation just like I had to fight chronic illness. Your mind will justify your reasons for not calling that friend, for not letting them see you like this, or for not talking to them because they don't understand, but eventually you'll have to step out of denial and realize that you're a social being who needs and deserves connection. Your body will try to convince you that all your energy needs to be toward your physical health, but eventually you'll realize that it can't be at the cost of your mental health.
Slowly I made steps in the right direction and through the help of counselling, my church family, and books I've read and applied, I'm no longer where I once was.
This past semester I've been in a Positive Psychology class about the psychology of happiness. The research we've analyzed in this class has had a relevant influence in my day-to-day life. So it turns out, that when I realized I couldn't go 2 days without being around loved ones, I wasn't alone. Extensive, longitudinal, and cross-sectional research has shown that nothign, NOTHING, increases subjective well-being but social interaction.
Not even winning the lottery.
Not even health.
Social interaction, even with "weak social ties" (acquaintances), drastically increases our happiness.
Before we were taught this, we had to track our data for what was called a "happiness tracker assignment." We tracked several variables across a few weeks which included sleep
(quality and quantity), nutrition, feelings of gratitude, altruism, time spent with other people, etc.
I was SHOCKED that once I computed the data I was ALWAYS happier on days I spent with other people than times I spent alone EVEN when I was in a flare. I was happier on days I had 4 hours of sleep (which is torture for someone with CFS/ME and/or POTS) and spent some time with friends than on days where I had 10 hours of sleep, felt minimal stress, ate well, wasn't in a flare, but didn't spend time with friends.
I thought this was just because I was an extrovert. But we recorded our class data and EVERYONE reported similar findings. Every single person.
That brought us into a few lectures about how humans do not accurately predict what makes them happy. In fact, we're terrible at it. After this, we analyzed a ton of articles that repeatedly came to the same conclusion:
"A happy life is a social life."
In a LARGE study (the Gallup World Poll) the biggest predictor of happiness, around the world, was answering "YES" to the question “if you were in trouble, do you have friends or family you could count on to help you whenever you needed them, or not?” (Helliwell et al., 2009).
However, more research has shown that it's not just HAVING friends or family that you can count on, it's actively seeing these friends or family on a frequent basis.
In fact, the top happiest 10% of people in the world did not think they had more money than the average person, did not stand out in terms of GPA, attractiveness, alcohol use, tobacco use, time spent exercising, time spent watching TV, or religious activities. The top happiest people rated an average of 7, 8, and 9 on a scale out of 10 so they were not ecstatic or without lower negative affect. They were, however, those that spent the least time alone, spent more time socializing, and rated highest in good relationships (Diener & Seligman, 2002). Numerous studies, including experimental studies (in which causation can be drawn), have shown that it's not just that happy people have the time, resources, or energy to spend time with loved ones- they controlled for these variables.
One thing I found fascinating is the current research regarding "weak social ties" (or acquaintances). We tend to think we have to have really strong best friends in which we can share anything with for us to be happy. That can and does increase our happiness, but weak social ties also have a huge role to play. It turns out, that people with MORE weak ties (than those who don't. Not necessarily more weak ties than strong ties) tend to be happier and experience greater belonging (even when controlling for individual differences in personality). In addition, multiple experiments by Sandstorm & Dunn (2004) revealed that people felt happier on days when they interacted with more weak ties than on days that they didn't. They also found that people felt the happiest and reported greater feelings of belonging on days when they interacted with more strong ties than on days where they didn't (Sandstorm & Dunn, 2004).
I won't be able to reiterate the whole class to you, but the research (representative samples, cross-cultural, cross-sectional and longitudinal, experimental and correlative) has convinced me. I have started to apply it to my life and in doing so, I have reaped the benefits.
If you don't believe me, I'd encourage you to track your own happiness with as many variables as you think will make you happy (minimal symptoms, a good night's sleep, etc.) and time spent with others. Track this for a month and you'll most likely join me on this journey.
These findings might be daunting to you, especially since our chronic illness still inevitably creates social obstacles and isolation. Great, the only thing that'll make me happy seems so out of reach. But when you start to be intentional about this ONE self-care goal, it seems a lot more doable. If health was the only thing that could make us happy, then I'd definitely be severely depressed to find that out. But spending time with others? That's something I can work on. I have more control over how much time I spend with others than my health.
I still experience isolation from time to time, but I'm no where close to where I used to be. The isolation is more of a passing feeling instead of a chronic state of being now. I have to be hyperaware of my tendency to withdrawal during hard times. Your mind and body will try to convince you that it's the best possible thing for you to do, but you'll have to retrain how you think about social interactions. Draining? Well you might need new friends. Having to put on an act for the world to see your best self? Well authentic vulnerability encourages others to meet you in that place of vulnerability. You'll have to test the waters to see who's a "safe person" though to make sure you don't share your whole story to those who haven't earned a place to hear it. Brene Brown's book "The Gift of Imperfections" is a great place to start. Brene Brown is a psychologist who has done decades of shame research which all pointed her to the conclusion that humans require a sense of belonging that's increased in places of vulnerability and decreased in trying to fit in.
I know it's hard to believe, but you're actually not alone. You have found this community and even if that's all you have, that's a start. You are a needed part of this community and I'm excited to share this journey with you.