Conquering Fear – Gastroparesis
Issues and Challenges
CandiceDaquin has encountered: Access to Expert Providers, Discrimination (nonmedical), Invisible Illness
Conquering Fear - Gastroparesis
Based on close observation thus far, I’d say my level of fearfulness ran about average before 2017. I had more nightmares than most, due to an active imagination and I didn’t like to be in an empty house at night, because of all the TV shows and books where a woman is hunted and murdered. But I also did things others said they couldn’t and I was considered quite brave. Fear didn’t rule my life, it didn’t dictate it, and I was shyer than I was anxious. I could stand up for myself and others, I’d had fights in the school playground, I’d faced some unimaginable trauma and survived.
Who then would have expected a non-lethal illness to almost do me in? Yet that is exactly what nearly happened and the reason I’m writing about it over five years later is because at times it still almost possesses that power and I can’t work out why. Is this the PTSD I’d heard so much about but been mostly spared from? When trauma came knocking on my door, I felt I did the prerequisite things of therapy and moved on from it. I never had it hanging around. Regrets sure, but they’re not PTSD. Nothing kept tapping on my shoulder and feeling the same intensity of horror as it had. When bad things happened, they stayed in my rearview mirror. Until now.
In the abstract we hear PTSD bandied around a lot and we may not take it seriously because like anything that is discussed extensively, we can become insensitive to it. We may know people get raped but not pay it much mind in terms of how it would affect us because it’s a familiar abstraction, in TV and books all the time, to the extent we think we know it, but until it happens to us, we don’t. Same with PTSD, we think we know what it’s like until we experience it. And some types of PTSD are even longer lasting than the result (known as complex PTSD) where they can gain traction and strength even over the original trigger. What that means is; whatever the original event, C-PTSD (Chronic PTSD) can extend and worsen it by connecting to other things or growing beyond that one point. It can occur because of multiple traumas, or pre-existing anxiety or a combination of reasons that are complex and enduring. Logic alone doesn’t mean you can wrestle it to the ground.
I can tell you what started it for me. The suddenness of it. The unexpected intensity. I’d never experienced anything as life-altering in my life. Imagine if you will, you are living your life, trying to get by and suddenly you are felled quite literally over night by a mysterious illness nobody seems to know anything about. You go from one day to the next from being a functioning, stable person able to hold down a job and life like anyone else, to someone who cannot get out of bed, who cannot function, and cannot work. I always tell people; what if I’d had several children? What would they have done? Because it's one thing for me to become completely incapable, but what if I’d had children to care for? Who would have fed them? Clothed them? Taken care of them? I shudder to imagine.
As it was, I could have been on the streets if I had been living alone. Having never been dependent upon anyone since adulthood, it was a hard lesson to realize I was and that I couldn’t be relied upon to take care of myself anymore. I lost my independence and sense of safety overnight. I went from thinking I could do more or less anything, to feeling deeply vulnerable. We bandy around words like ‘independence’ and ‘vulnerability’ all the time without really stopping to think about what it means. For me, being independent meant feeling there were potential limitless possibilities. I could in theory move countries or jobs, without fear of that being a bad idea. I felt free and unincumbered by the noose of illness and vulnerability. All that changed when I woke up unable to function. Going from being a relatively young feeing/acting woman in her early 40’s to a retching, throwing-up 24/7 panicking, terrified woman.
I’d only been in the ER for myself, once previously. I barely remembered it. I wasn’t someone who spent time at doctors or hospitals. Suddenly I was there in the ER almost every weekend. I would beg anyone who would listen to “please take it away” and by ‘it’ I meant the crushing nausea that I felt 24/7. Until this I thought I knew nausea. I got car sick if I travelled in the back seat, I would throw up when I had flu sometimes or if I got food poisoning. In the past I threw up from drinking too much. I knew nausea. But I knew nothing. There is nausea, the kind you may have from morning sickness or a bad curry, and there is nausea, the kind that pulls you to your knees where you pray to a god you didn’t think you believed in, to end your life because you can’t take one more day of it. I called that nausea, super-nausea.
The doctors in the ER and the stomach specialists all agreed; super-nausea was worse than anything. In fact, one doctor said he’d rather have cancer. If you haven’t experienced it, then you won’t understand what we’re referring to. It’s a kind of gut-wrenching nausea that destroys you. You can’t eat. You can’t even think about eating. If someone said you would die unless you ate, you still couldn’t eat. Your stomach roils and you feel a shaky feeling internally you’ve never experienced before; it feels a little like hypothermia. You can’t stop shaking inside, like you are very tired and very sick and you can’t get ‘right’ and at the same time you are throwing up 24/7 with the kind of waves of nausea that could sink New York. You pray to die. After a while, death seems like the only way you are going to survive the feeing. Let it stop. Just let it stop.
Life grinds to a halt. When you’re throwing up 24/7 you can’t think. You can’t plan. You can’t live. You are a slave to your body’s reflexes. At first you tell yourself, it’s okay it’s going to pass, it has to pass. Days go by. Weeks. Months. You become weak. Disorientated. You despair. The doctors don’t know what is wrong. You try so many medications you make up for a life time of never having needed to take any. None work. Even the strong ones they give people with cancer who have nausea from chemotherapy, even they don’t work. Nothing works. People tell you to try ginger, peppermint, acupressure, cranial sacral massage, acupuncture, hypnosis. You try it all but nothing works. Nothing. Ever. Works. People begin to lose their patience, you have lost yours weeks ago. Doctors talk about it being psychological. You wonder. You really begin to wonder. Can you go mad just suddenly like that?
I had some pre-existing conditions but none of them were related. I had always manifested anxiety or distress in my stomach and would get a bit of a stomach ache when upset. I had some IBS like many women, which caused me to experience bloating and discomfort. But that was the extent of it. The rest was just life style. I’d already given up coffee because it gave me acidity. And alcohol for the same reason. I didn’t smoke. I sort-of exercised. I was a healthy weight and a life-long vegetarian. I didn’t have an eating disorder although when I was a teen, I thought I was fat like so many of my friends in dance class. I didn’t like my body but I wasn’t starving myself. Mostly I wore a pair of tight-fitting hose if I wanted a flat stomach and that was the extent of it. I had never been mad and I knew madness. I had seen it in my family of origin, I had seen it in my job as a psychotherapist. I knew madness. I wasn’t mad. I felt completely sane. I felt like I was losing my mind.
Finally, because hospitals are not easy places to get into unless you are dying, I told the ER doctors I wanted to die because of the nausea. I made it clear I was referring to the nausea causing a wish to die to end the suffering. They could see I was trying to just GET into hospital where I would have all the tests I needed to have to once and for all find out what was going on. By this time, I had seen 2 different specialists, considered the best in town. The first had put me on a 3-week prescription for antibiotics. When I asked why, he didn’t give a good reason, he felt it was ‘precautionary’ and when I told him I couldn’t take the antibiotics because I was throwing up all the time, he said he’d seen men with their stomachs blown apart take antibiotics in Vietnam. He did a colonoscopy and an endoscopy and pronounced me healthy. He asked whether I could have an eating disorder because I weighed 100 pounds. Only a few months previously I had weighed 120 pounds. I hadn’t even lost as much weight as I could have because I was drinking protein shakes as much as I could keep them down. In reality I should have been dead because I couldn’t easily eat at all. But knowing if I quit eating, I would die I choked it down, time and again, just to keep going and not be put on a feeding tube.
Predictably I couldn’t keep the antibiotics down. I never finished the course. I asked for an IV course but was denied by insurance. The second doctor was an eastern European female, she had a better bed side manner. She knew what was wrong. Gastroparesis. She described this mysterious disease that I had never heard of, as being ‘the cells of Cajal misfiring or damaged along with the Vagus nerve.’ I had to look all that up. Apparently, our stomachs are much like our brains, they produce most of our hormones and those chemicals implicated in our mental well-being such as serotonin and dopamine. They have receptors that read from the brain to the stomach and if they’re damaged or dysfunctional, the wiring gets crossed and everything goes to hell. It can cause you to throw up much like being in a ship in a stormy sea. If the Vagus Nerve doesn’t work then nothing works.
Gastroparesis literally means a paralyzed stomach but is more euphemistically these days, an umbrella term for stomach motility (movement) disorders. Few people diagnosed with Gastroparesis have a dead or frozen stomach. They have some degree of impairment to the motility of their stomach. It seemed to explain the extreme nausea (when the stomach’s motility is disrupted then food blockage or slowness in transit causes extreme nausea and/or throwing up). But what had caused me to wake up one day and develop a disease I had never heard of?
Gastroparesis most commonly happened without a specific cause but viruses are implicated alongside Diabetes as being triggers. More interestingly Gastroparesis is a young woman’s disease, which in my 40’s I wasn’t exactly, but with 80+ percent of Gastroparesis patients being female and under 45 I was a close fit. I still wanted to know why. What virus and why did a virus trigger this strange previously unheard-of disease? Nobody had good answers. I was tested for everything and everything came back negative. I recalled having a virus in March and then getting sick (without it stopping) in August. The pieces were fragmented. I was told Gastroparesis could heal if it was caused by a virus rather than Diabetes and if so, it would take some time for the Vagus Nerve to knit back together. I was given some medication that was like an anti-depressant for the stomach, the theory being off-label use would reduce the spasms and give me a chance to heal. I was also given anti-anxiety medication because as you can imagine, your anxiety is through the roof when you’re throwing up 24//7.
As with the earlier medication nothing worked or helped. I continued to worsen. I continued to lose weight and lose hope. I became desperate. During this time, I called my mother, whom I had not grown up with, but whom I did have a relationship with. I had worked hard to sustain some type of relationship and cared very much but also didn’t kid myself that it was a close family relationship, given this was not my mother’s personality and I was not really her type of person. But in the back of my mind, I thought; she’s my mother, I’m sick, that’s who you go to when you are ill. I was wrong. My mother chose this time to stop talking to me. She was perturbed by my calling in tears, I was a burden, she wrote me off. It wasn’t a total surprise but it was a hard kick when I was already down. The same happened with a close friend. You learn who your friends are when you get sick, very, very quickly. It can be the worst timing in the world to suffer those loses too. But what’s the old saying about when it rains it pours? The whole thing felt like a test of my metal and I was failing. I thought seriously of suicide for the first time in my life. As much as I wanted to live, I didn’t think I could live like this. I would tell my therapist that I had given myself 2 years. If I wasn’t better in 2 years, maybe sooner, I would end it somehow. She saw what I went through and she didn’t disagree. I admire those who want to live no matter how sick they are, but I also think it should be a choice. If you can’t handle extreme suffering you shouldn’t have to.
Having been to the ER countless times where they did nothing more than patch me up as much as they could, and offer zero answers, and seen two specialists, I wasn’t willing to give up yet. I researched other specialists and found someone who was a Gastroparesis fellow, who had written papers on the disease. My previous Dr had said it would be a ‘battle of will power’ and she said I had to ‘fight to stop it winning.’ Her figure was 40/60 (60 percent failed) and she told me to not give up. At the time I didn’t know what she meant. I didn’t see how hard you fought against an illness would make much difference. Either you got better or you didn’t, what did it have to do with willpower?
I called the third clinic and the man I had selected said no he would not see me for a third opinion. He didn’t ‘do’ third opinions. I argued and said it wasn’t strictly speaking a third opinion (of course it was) by this time my hair was falling out, my thyroid had begun to act up, probably due to receiving no nutrition of worth on a regular basis and I was skin and bones. I couldn’t be around food, I couldn’t think of food, it was like being anorexic but not by choice. I hated food. I hated eating. Eating caused pain and nausea and throwing up. I wished I could have a feeding tube but I also knew what that would mean. So, I looked away and forced food in liquid form down my throat whilst pinching my nose. I gagged and often projectile vomited and then I would try again. I felt like I had aged 20 years in one.
At the end of the first year of illness I had been hospitalized multiple times, asked if I had a mental illness, put in an eating group for people with eating disorders and told it was due to latent resurfaced trauma. One of my own best friends, a psychiatric nurse practitioner, was pushing anti-depressants on me and telling those around me I had had a mental breakdown. She thought it was 100 percent psychosomatic and caused by mental disorders I had never had until August 2017. Nothing I said in my defense changed her mind and she knew me! If this was her attitude, imagine what Drs who didn’t know me thought? As a woman she assumed this of another woman because thinking a woman is hysterical is easier than anything else. Imagine what the male Doctors thought?
The Director of the third clinic called back after a wrote a shaky hand written testimony to them, begging for a third opinion. He agreed to see me even if his colleague wouldn’t. within ten mines of entering his office I felt reassured. Why does reassurance matter? Because when the whole world including your close friend and mother, have given up on you, you begin to second-guess yourself. How strong can anyone be? The doctor told me, the reason you’re not responding to any of the medication is you don’t have Gastroparesis per say, you have Gastric Arrythmia. What’s that? It’s like Gastroparesis but it’s where your stomach is spastic and too fast, and everything collides which causes the super-nausea. Me taking medication to speed my stomach up was worsening it. The usual Gastroparesis treatments aren’t very effective at the best of times, but they were making it worse. He took me off them and put me on a medication that slows the stomach down and prevents the spasticity.
I should point out that until now I had been mostly Homeopathic. My parents didn’t agree with conventional medication, I wasn’t even vaccinated. I grew up seeing alternative medicine as a preventative way of staying healthy and avoiding disease. I believed it in the way you might believe in God. I preached it and practiced it. If I was in terrible pain, I took a pain killer and I had had a partial hysterectomy but that was the extent of my experiences with conventional medicine. After I got sick the first route I took was alternative. I was told by multiple acupuncturists etc., that they could ‘cure’ me although nobody really knew what was wrong. I spent thousands and did not feel better in any way. Finally, out of desperation I went in search of any cure, be it allopathic or not. Both sides seemed to fail me but I tried to stay open to either, that’s what desperation does. My mother thought taking medication would kill me, I knew if I didn’t do something I would probably kill myself.
A few days after taking the new medication I felt better. Not cured or back to my old self but not hunched over throwing up 24/7. It broke the cycle. I wasn’t cured but I had enough of a break in the extremity of symptoms to breathe. I was still retching and unable to look at food, but I wasn’t puking my guts out all day and all night. The doctor told me to eat as much as I could, try to gain back weight and even put some on so that if I did have relapses which were inevitable, I’d have a bit of weight to play around with before I got too thin again. He gave me an EGG of my stomach which insurance didn’t cover (insurance didn’t cover a lot of things and were it not for a Go Fund me and my credit cards I would have been out on the street littered with unpaid bills) which showed my stomach was going too fast. I finally had physical proof that I wasn’t mad. How sad that I needed that to validate myself because so many people had made me question my sanity? I knew in my gut (get it?) that I wasn’t mad but it’s incredible how the doubt of others can make you doubt.
Armed with a diagnosis I naively thought I would be on the road to recovery and it would be a complete recovery. I recalled what the second Dr had said about will power and began to see how recovery is a battle of wills. You have to believe you will get better and you have to fight and not give up. I did this diligently. I had lost my job. I had lost my looks. I had lost my health. But I wasn’t going down without a fight. I looked at my sagging skin and grey face and I swore to myself I would get better. I walked every day for 3 miles in the morning when it was cool enough. I did yoga for the stomach in the evening. I drank repulsive shakes with high calories and nutrients. I choked down vitamins. I took freelance work and tried to stay calm every time a wave of nausea hit me.
I kept having flash backs to being hospitalized. At one point when it wasn’t ending, I had said I wanted to die. The Dr was very sympathetic. She knew I wasn’t suicidal per say, and she knew I was very, very sick. She had got me a bed in a ward where there were co-morbid conditions. She told me I wasn’t mentally ill but I could benefit from therapy because of the anxiety this illness had caused. I had group therapy, something I had never done before. I loved it. Sitting in a group I didn’t feel isolated. I had been alone at home for months, I didn’t socialize, and here I was sitting with others who had gone through hell and talking about it. I couldn’t trust those around me as much as I thought because they had left me in my most vulnerable moment and these strangers became friends. I felt so incredibly grateful. We talked and we shared stories. I was surprised at how many people become suicidal over physical illness. I was not surprised how many were not taken seriously until it was almost too late.
I was put in a group where you went every day until 3pm to do group therapy and eat together. It seems absurd now, because why did I need that? But by this point I couldn’t eat by myself, I couldn’t prepare food, I couldn’t look at food or think about food. Food was what caused me to throw up. I had basically become unwillingly anorexic. It was a group to support people who had had cancer and couldn’t eat due to extreme nausea. I had no idea this was a ‘thing’ or how common place it was. I felt grateful that I could meet every day and have something to do (since I was still unable to work and couldn’t even drive due to weakness and dizziness). I would be picked up and driven there, I would eat my breakfast and lunch with them and I would have therapy. I felt sick mentally and physically by this point. But I knew if I could just wake up and not want to throw up the mental illness would recede. It’s so easy to be told you are mentally ill but you have to put it in a context. Sometimes trauma can cause other things, it has a domino effect. Mental illness can cause physical illness. Physical illness can cause mental illness. I didn’t want to be judged but I wanted to get well.
Our group leader eventually labeled me with PTSD due to Gastroparesis. She said the anxiety I felt about food was understandable because I’d been trained by vomiting to associate food with vomiting and vomiting with anxiety. I met others there who had the exact same thing for other reasons, one young man had throat cancer and he couldn’t swallow so he couldn’t digest food. Another had stomach surgery that caused nausea and had the same issues I did. At first, I felt ashamed but as I saw more and more people, all of whom were normal professional people, whose lives had been severely disrupted by a terrible illness. Whomever said misery loves company isn’t wrong. But it’s not so you can wallow in it, but rather, that you feel less isolated when you know others who are going through a modicum of what you’re experiencing. People who are not sick, rarely have the time or inclination to talk to you when you are, and months of illness requires some outlet.
I would have never imagined for a moment, that the psychological toll an illness takes, would be with me over five years later. But it is. Once I began to recover, I recovered fast and whilst I still had serious relapses, I learned to live with them and became less freaked out by their severity once I knew what they were. I had a regiment I took when I got sick which included trying to stay calm. It is hard when you feel you are having a heart attack (the stomach is in a similar area to the heart and as such, you feel a terrible tight chest and trouble breathing when your stomach doesn’t work right) but so much of recovery is about having a positive, pro-active attitude. I forced myself to eat even when I would throw up in my mouth as I ate and over time, I began to be able to eat solids again.
What people don’t tell you about Gastroparesis is it also causes chronic fatigue and depression. Depression because your stomach doesn’t absorb food and nutrients correctly. Fatigue for the same reason and in my case, because I have incredibly high levels of Epstein Barr Virus in my system, which may or may not have been the culprit to begin with (or reactivated because of the illness – we will never know). I’m still relatively young but I have gone from being a high energy person to someone who cannot be relied upon for things because I never know how I will feel. Recently I took a trip home to Europe to see my family and got sick for 10 days with a severe relapse. There is absolutely nothing you can do to stop that, and it’s completely unpredictable. In that sense, I’m not over it and may never be. I try to be positive by comparing how bad I was in 2017 with today. And it is a lot better. I talk of being ‘recovered’ because that’s how I prefer to see it. Although if I’m honest it’s a partial recovery because I remain symptomatic. Most chronic illnesses occur after a serious one and have relapsing and remitting periods where you can be relatively normal but you will relapse at some point.
People can be incredibly unforgiving to people with chronic illnesses. They take it personally when you cancel on them and don’t understand how hard you try to ‘be normal’ or think it’s more psychological than physical. Trying to stay positive and hopeful is a daily battle. My mantra ‘it could be worse’ isn’t so much positive as realistic. I know it could be (much) worse but I’m also aware of what it takes out of me. My mother has never spoken to me since, nor will she. I am not angry with her but the hurt is immeasurable. Nobody believes someone who once said they loved them, would be capable of quitting talking to you when you are at your most vulnerable but it really is when it happens. I try to reframe it by reminding myself she couldn’t have loved me at any point if she was capable of this. It is sad but many people lose their parents or never had them. For some reason when you feel physically poorly, you feel more vulnerable and needy and somehow you have to find inner strength. Those who do have a good support system definitely have a better time.
As for the PTSD it is there. I recently contracted Covid for the first time and I have been very lucky because I didn’t get very sick. Seeing all those who have died and lost loved ones, I feel incredibly fortunate. Unfortunately, I did get sick with Gastroparesis because when I get a virus it seems to trigger this chronic illness to activate. Whilst the Covid was average in severity, I was incredibly sick with Gastroparesis and worst yet, it triggered my fears all over again, as if no time had passed. I think this trigger and PTSD doesn’t go away because the illness is always there, waiting to reactivate and sicken me. I think super-nausea is especially triggering because it produces such intense anxiety and a plethora of extreme symptoms that cause your life to grind to a halt.
Just recently I had to acknowledge something I had been in denial over for a very long time. I have a chronic illness. I still hope to improve and get better but denying that I have it, was just denial. I think I wanted to prove to my mom and everyone else, that I could fight it and win. And to a large extent I have. But I am forever changed and the biggest change has been to my sense of self and safety. I no longer feel like a young free woman in charge of her own destiny. I don’t feel I can just take some really high stressed 60 hour a week job like I did in the past. I don’t even know how I will be next week. For this reason, I’m irrevocably altered in my sense of security and an awareness of my own vulnerability. I feel so sorry for those who experience this at a younger age than me, because it makes you grow up in a way that isn’t a good thing.
Even within the chronically ill community there is a lot of judgment and condemnation of those who seem not to be able to handle things. There is a lot of competition over who is sicker and what constitutes being sick. If you only have one illness, you are not perceived as being as sick as someone with three. It says a lot about human nature that we judge and condemn our own. Imagine then what the world of non-sick people must think of us? I have been lucky to be able to live within my means since my illness and pay down debt and work from home. I really do not think I could work in an office any longer, sometimes I struggle to eat and I can be in incredible pain or exhausted from not sleeping. Any time I get another illness, it hits me twice as hard and I fear getting older for this reason. I remain optimistic and try to help others as much as possible, as a way of giving back and ensuring I am part of the change I want to see.
But last night when I felt so sick, I thought I would start throwing up for hours again, the all-abiding thought I had was ‘why me?’ and then ‘not again.’ Because no matter how much we know it could be any of us and it isn’t something we did to deserve it (even if some unkind people imply it is) we still feel wretched and broken and afraid. I now understand that PTSD is that flashback caused by a smell or a feeling that takes you right back to the horror of the moment it began. I often find myself thinking in the dark of the hospital, of the despair and fear I felt not knowing what was wrong with me, or knowing but feeling nothing could be done. What hurt me more than all of that was the invalidation from my mother, and her rejection of me. Sometimes the only thing that keeps us going are the people around us, who care about us. Some people don’t have that, and that’s why I try to give widely, and text people or call them when they are suffering and alone. Because I know how it feels. And I want to help take away someone else’s fear even if I can’t always take away my own. Maybe that is as far as we can get – to conquering fear.
Candice Louisa Daquin is a Psychotherapist & Editor. She recently published her first book since her illness in 2017. Tainted by the Same Counterfeit, about surviving Gastroparesis. Daquin has also edited two anthologies on invisible chronic illness. She works for Indie Blu(e) Publishing as their Senior Editor and is Poetry Editor for Parcham Literary Magazine and The Pine Cone Review and Writer in Residence for Borderless Journal.
My Motivation and Inspiration
I began working for a publisher shortly after getting sick. I had previously worked in publishing. We published several anthologies on these subjects, as they had chronic illnesses also. Our best sellers were: But You Don’t Look Sick: The Real Life Adventures of Fibro Bitches, Lupus Warriors, and other Superheroes Battling Invisible Illness - about invisible chronic illnesses. When I read the submissions I was humbled. By how much others suffer and keep going. That is what motivates and inspires me. We also published Through The Looking Glass: Reflecting on Madness and Chaos Within, because mental health goes alongside physical health. We try through our publishing endeavors, to be the voice for the underrepresented. We have also published anthologies on #metoo and LGBTQ issues. It has become my passion to advocate for those who are erased or ignored by the mainstream. I have used my previous editing experience to help build a publisher with this in mind - to be the voice for those who are drowned out by the insistence sick people are weak people. They are not.