Grieving the life you had before chronic illness
Image from Emily McDowell's empathetic card line
Grief is most commonly known as the psychological distress experienced after losing a loved one. However, any loss can bring about the anguish caused by grief.
Many psychologists have established 5 key stages in a grief process but in reality, grief is as unique as the person experiencing it. For the sake of simplicity, I will be relating my experience of developing POTS with the 5 stages of grief most commonly used: denial, anger, bargaining, depression, and acceptance. Categorizing grief in 5 stages is definitely an oversimplification of a messy and complex emotional process, but these 5 stages will be experienced in some sort of intensity. Although one person can definitely jump all over the place in their grieving, from depression back to anger, from bargaining back to denial, eventually with acute loss most people reach some sort of acceptance. It's not that they're "over" the loss of a loved one, but through time and healing the initial intensity of the shock and grief naturally lessens.
Diagram from "A Life Less Physical's" blog post on Fibromyalgia and grief.
But what if the event that brought about the grief never truly ends?
The book "POTS- Together We Stand" talks about exactly this. I highly recommend this book for many reasons. For one, it's informative and helped me navigate my journey to finding a cause for my POTS. Second, there is a fantastic chapter about grief and chronic illness that completely opened my eyes about the realities of the emotional roller-coaster I was experiencing.
Grief is an intense psychological process brought on by a loss. I don't know about you, but I lost everything in my life the day I got sick with POTS.
I lost my health; my ability to stand up, to think clearly, to see straight, to stand up, to run, to hike, to work out, to go out, to feel normal. I lost my ability to do the things that constituted my everyday; going to school, going to work, living alone, going out with friends, my ability to drive. I lost my sense of self; I previously felt strong, confident, and indestructible in my daily life, I was fit, I was active, I was healthy. I lost my sense of autonomy; the belief that I could do anything I set my mind out to. I lost my sense of purpose and accomplishment; I lost my academic scholarship for school, my ability to read and learn, my drive. I literally lost everything that made me, me.
If you have a chronic illness, I'm sure you relate to the feeling of intense loss. It's an incomparable anguish I hate that you can relate to. You were suddenly, traumatically, robbed of life and everything that gave your life meaning. And for many of us, we continue to be reminded of this loss every day.
"What do you do when the event that brought about the grief in the first place never leaves? How do you deal with something that can cause little losses (and sometimes big) every day, such as a chronic illness like Dysautonomia? Living with Dysautonomia you are constantly reminded that you are no longer the person you once were. From the moment you wake up, each and every morning is a struggle. Just to get out of bed and dress you are reminded every step that you aren't like other people. Like it or not, you are sick and to differing extents, perhaps even disabled. Each day you are reminded of your loss. It's almost as if you just get that wound to our spirit to heal over and someone comes along and rips the scab right off, leaving it raw all over again.
With chronic illness you may lose many things: your job, your friends, your house, your financial independence, but perhaps the biggest loss living with chronic illness is the loss of you. By that I mean the you, who you once were before you became ill; the picture you had in your head of you and where you fit in the universe.
It's your own personal picture not the one other people have, which can sometimes be dramatically different to our own. It's often not until you are faced with something like illness, that you realize that you did indeed have such a picture, one to which you were particularly attached." -Chapter 8 of "POTS Together We Stand"
Author of chapter 8 "Grief and Dysautonomia" is Michelle Roger who is also a blogger at "Bob is Dysautonomia."
Image from the blog "The Shadows of Fibromyalgia"
I began grieving my old life before I even realized that was what I was doing. I was going back and forth between the denial and anger stages when I came across Michelle Roger's chapter on grief in the book "POTS-Together We Stand." You know that feeling where someone eloquently describes exactly what you're going through in a way you could never put into words? That feeling of being understood, having a name for it, and knowing that you're not alone? Yeah, that's how I felt after reading that chapter. 2014 was by far the worst year of my life. It wasn't just developing POTS that was traumatizing, it was losing myself. I didn't know how to describe it to people but I know the words "you don't understand" came out of my mouth more times than I can count.
If you've ever been unfortunate enough to lose a loved one, you are all too familiar with the stages of grief. The problem with losing your health is that it's a daily loss, not a one-time thing. No grief process is linear, clean, and tidy, but you can expect to find some level of relief with time when you lose a loved one. But each day of living with a chronic illness is a reminder of the loss. All your friends are going out but you don't feel well enough to? A reminder of when you could go out. Your grades feel the consequences of your brain fog when you used to be a straight A student? Another reminder of your limitations.
But I didn't write this to remind you of everything you've lost from developing a chronic illness, no you don't need another reminder of that. I wanted to write this so you knew that you're not alone, so that you had a name for the emotional roller-coaster you're experiencing, and so that you would have hope that some level of acceptance and reconstruction is possible.
Image from PSYCOM
I still find myself in a process of grief if I get into a big flare but it's nothing like the intense and debilitating psychological distress I experienced from 2014-2016, which looked a bit like this:
For the first year after I became sick with POTS I was incredibly depressed, anxious, and fearful. I clung to the idea of my old life as if it provided oxygen and needed to feel like I used to. I would often say things to my mom like "I need this appointment to go well because I need to go back to school next semester. I need to mom, I can't live like this." I felt suicidal at the idea of not going back to university. It wasn't that I was that obsessed with university per se, but it was a concrete example of an ability that made up my daily life and identity.
For the first two months it never crossed my mind (but it could have been a subconscious fear) that I had a chronic illness and wouldn't get better. Doctors suggested that my symptoms might be a result of a prolonged flu, or a cyst that once removed would relieve my symptoms, or something that was chronic but 99% manageable with the right medication. In my mind I was going to get better once I found out what was causing my symptoms. Even when my mom found out what POTS was, through her own research, and was convinced that it was what I had, I believed that Florinef would cure me based on a blog post I read at the time. I distinctively remember when my mom told me what POTS was and showed me a bunch of articles. My heart sunk. I clearly remember saying "so I'll never get better?" It was the first time that I couldn't deny the evidence that conflicted with my current reality: that I was going to get 100% better. But despite the intense fear I felt when reading the word chronic, I researched until I found something that reinforced my previous denial: Florinef (a steroid often used to treat, not cure, POTS) would make everything better. I remember telling my mom "oh so POTS is an issue with standing, well then I won't stand much until I get prescribed Florinef and then I can go back to school."
With denial often comes isolation. With me, isolation plagued my life through the first 4 stages of the grief process. In the beginning, I dropped off the face of the earth and updated people on social media but never invited people to come over to see me or keep me company. I remember an aunt of mine wording it perfectly "I'm sorry I didn't visit more, I just kept thinking it was an acute thing that would go away." Whether you don't want to bother others, you don't want people to see you like that, or you're just focused on "getting better" and think it'll happen any day now, isolation is a huge issue when living with a chronic illness.
Oh boy did I get angry. Within the first few months of developing POTS, I placed all my hope on upcoming specialist appointments. I was convinced that once I saw __insert specialist here__ they would figure out all my issues, put me on the right medication, and have me on track to functioning normal again. The first specialist I saw was a Cardiologist- I placed all my hope in this appointment patiently waiting for its arrival. When the appointment came and my mom suggested a diagnosis of POTS, he said that there's no way I could have POTS because my blood pressure didn't drop enough (this is a myth) and that POTS was just a diagnosis doctors gave when they didn't know what else was going on (also untrue). On the drive home from that appointment I cried, I screamed, I hit my hand on the passenger side door and lost it. This was the first of many doctors appointments that left me with intense anger that I previously believed I was prone to. Once it was so bad that I yelled at my mom the whole drive home (and still feel guilty about this), went up to my room, slammed the door, and screamed and threw things until my throat hurt and I eventually fell and traded my rage for tears.
Your anger might not look like mine did, your anger might look like an existential thing- asking God how He could allow this (oh yeah I've had my fair share of yelling at God too, sorry pops), or it might look like resentment and unforgiveness. No matter what it looks like, anger is a healthy reaction to trauma, loss, and hopelessness. You have to allow yourself to feel the anger and express it in a healthy way.
Bargaining often takes the form of "what if..," "if only..," and "why me?". Bargaining is an attempt to change the outcome or torture ourselves with ways in which we could've avoided this outcome. For me, I bargained with God the first day I became sick. I remember lying down after what I now know was my first low blood pressure seizure and praying that I would devout my life to God and do anything if He were to take away this suffering right now. I guess bargaining came before denial for me, which is further evidence that grieving isn't always linear. Bargaining often involves bargaining with a higher power, trying to make sense of your suffering, or trying to figure out reasons for your suffering. For example, for a couple of months I was convinced that seeing a new chiropractor caused what I now know is POTS. What I conveniently forgot to remember was that I started seeing a chiropractor because my severe chronic neck pain and headaches (that I had for my whole life) were getting worse and that symptoms preceded seeing the chiropractor. For months I thought about "if only I didn't see that chiropractor.." or "if only I went to the doctor when I fainted that one time months before my first POTS attack maybe they could've prevented this.." etc.
In this stage, people often try to hold onto any last bits of perceived control over the situation and when they find this ineffective, they often fall into depression.
When your previous attempts to make sense of the situation leave you at a loss, and you're forced to feel the magnitude of the loss, depression sinks in. There are two main theories of depression: 1. depression as illness (medical model) 2. depression as human suffering. In psychotherapy, counselors who believe in the first model see the depressed individual as a patient, while counselors who believe in the second model see the depressed individual as a client. As someone who is studying to become a counselor and has personally experienced depression before, I understand and believe in a holistic approach between the two models, especially when it comes to grieving.
When someone is grieving the loss of a loved one or relationship, depression is often seen as a temporary stage (although this isn't always the case) and would therefore fit into the second model of depression. However, when the loss is ongoing, the grief is continual, then the depression may switch from situational to a chemical imbalance.
My depression was intense, my depression was mind-numbing, my depression was something I never experienced ever until developing a chronic illness. I was suicidal, I was numb, I was barely alive. However, even in the depths of it all, I didn't identify with my depression. I never called myself depressed and I didn't (still don't) think I have a mental illness. I met the criteria for depression, I had all the symptoms of depression, and I was on an antidepressant, but I still would not call myself depressed. (Call it denial but I needed to have hope that I was in control of some aspect of my health. I needed to believe that the mental suffering was temporary.) Why? Well I knew that my chronic illness caused my depression and truly believed it was a result of intense suffering and that I would be relieved from my depressive symptoms one day (I was right).
However, the grief cycle is continuous with a chronic illness (unlike most other losses), and therefore the depression might come in waves (including remission). Unfortunately, the continual nature of the unique grieving process associated with chronic illness creates a perfect storm. What once was human suffering has now changed the neurochemistry (and perhaps physiological structuring) of your brain. Trauma can also change your brain waves to the extent that it shows up on an EEG (although medical PTSD calls for another blog post that I'll get to one day as it's not part of the grieving cycle per se).
The mind and body are connected, what affects one will affect the other.
Whether your depression is something you identify with (which can be helpful for many people) or not, and whether it's long-lasting or temporary, it's presence can be expected during the grieving process. You are not alone in your depression and it is completely understandable.
I believe chronic illness creates the perfect storm for depression: isolation, lack of abilities and emotional stimulation to help provide positive aspects to one's life, brain fog, chronic pain, and a loss of self.
Approximately 6.9% of the U.S. population suffers with depression while 25% of cancer patients, 10-27% of post-stroke patients, 1 in 3 heart attack survivors, 1 in 3 HIV patients, 50% of Parkinson's disease patients, and 8.5-27% of people with diabetes experience depression.
(National Institute of Mental Health, 2002, & Rosen & Amador, 1996)
On January 20th 2014 I became bedridden with POTS and remained bedridden and/or housebound for all of 2015. In 2016 I experienced some level of acceptance in the sense that I understood that I was sick and probably wouldn't get better and that this was my new normal. I no longer tried to gain my old life before I developed POTS but instead tried to feel as well as possible and recreate a life within my limitations. Thanks to brain fog, I completely forgot what it felt like before I developed POTS which helped me move forward in a strange way. I couldn't strive for something I couldn't remember. In 2016 I identified with sickness but I became very depressed- I was surviving with chronic illness but I definitely didn't feel like I was living.
It wasn't until the summer of 2017 that I began to truly accept my life with a chronic illness and myself and reconstruct a new life. I would do anything not to be sick anymore but I no longer wish I was 20 year old me living the life I had pre-sickness. I've learned and lived too much since then to want to take that back. Once I was able to stop holding onto the rearview mirror I was carrying around everywhere, I began to appreciate and not resent my current life and myself in all of my brokenness.
How did I get here? Slowly and with a ton of support. You know those tiny decisions you make each day that you swear aren't making any difference whatsoever? Those are what changed my life. They do make a difference. After realizing I had medical PTSD and being put on an antidepressant, being on proper POTS treatment that stabilized my condition to the point that I could start doing Dr. Levine's POTS Exercise Protocol and fly to the POTS Biofeedback Center, making enough progress to the point that I could move out and live on my own, realizing I had a thyroid tumor that contributed to my 50+lbs weight gain in 2016, treating that thyroid tumor, slowly going back to school, being left by a really toxic boyfriend in the midst of severe codependency which influenced me to start seeing a counselor regularly and lose the weight, to seeing a counselor every week for 8 months (and still going). I saw counselors here and there throughout my life when I was in crisis mode but never saw one frequently. I truly believe that the frequency of my appointments, the trusting nature of our therapeutic relationship, and the daily renewal of my heart by God is what brought me to this place. A place of self-acceptance, grace for myself, freedom from codependency, and acceptance of my illness and the role it plays in my life and relationships.
I haven't "arrived." I'm not done. On a bad day, or in a flare, you will still find me grieving, but I do it with grace and not guilt. I can now look at old pictures from my healthy days without sadness, I no longer have resentment about my illness or feel like I need to catch up to all my healthy friends. I have found my purpose- to glorify God in the mundane. My inability to chase after the things of this world (career, adventures, travel, etc.) has made me realize how unfulfilling that chase truly was. I no longer feel burdened by every "30 things to do before you're 30" article and have peace with the fact that I might not ever do any of those 30 things but my life is still fulfilling and purposeful.
As Psychologist Michelle Roger (author of the chapter "grief and Dysautonomia" mentioned above and blogger at "Bob is Dysautonomia") put it,
"In embracing the new me, life is easier. Being ill has given me a freedom that I wouldn't have experienced should I have remained in my former non-ill life. I don't have the time or the resources, emotional or physical, to worry about the perceptions of others. Instead, I find joy and take chances that I normally wouldn't have, be that to create a pair of completely impractical Dorothy heels, write a blog, or to dress up and be photographed as a zombie. I find joy in the small things and find laughter in the absurdity that is now my life. I appreciate and make the most of my good days and know even when the inevitable bad day(s) come I will make it out the other side and find the joy again. Some days I still grieve my old life and old me. Some days I grieve the new losses that occur as my illness progresses. But it is easier now than it was in those initial days. I allow myself to feel the emotions as they arise rather than fight them and that removes a lot of stress. Life is complicated, unpredictable and downright hard at times, but I choose to be happy when I can. Because happy or sad my health issues remain the same. And frankly, I'd rather break out some very bad Vogue moves while stuck lying on my bathroom tiles than waste time on wishing my life were otherwise."
I still see my counselor weekly and still have to be very intentional about prioritizing my mental health. Psychologist Michelle Roger also truly believes that talking about this process openly, vulnerably, and without judgment is how we can move throughout these stages and find fulfillment. I know that counseling can be expensive and not always an option for everyone. Although my family is financially secure, I couldn't justify spending $140/h. When someone recommended my current counselor at just $50/h, I found this a lot more reasonable and doable.
I believe that this is only the beginning of my self-acceptance journey and I hope that you'll join me in this journey toward truly believing that
your life is worth living.
You will see better days.
You don't want to go back to pre-sickness but make the most of your current situation.
You are worthy of love.
Your purpose in life isn't to be perfectly healthy and productive, it's so much more than that.