Back in 2017 I got suddenly violently sick & repeatedly hospitalized with a form of Gastroparesis (Gastric Arrythmia) triggered by a garden-variety virus caught on a plane. It turned my life upside down. As a primary bread-winner I went from being self-supporting to unemployable, with massive medical debt. It took years to claw my way out of that even partially.

Fast forward to 2024. I’d never shrugged off all the residue of Gastroparesis because like any chronic disease it rarely completely goes away, but I felt very lucky to not be in hospital on a feeding tube or having had a heart attack like my closest friend who has Gastroparesis endured. I thought (wrongly) I was living WELL with it. Which equates to; you make the best of a difficult situation and you see the enormous progress you have made and don’t dwell on the loses.

It is said if you get Gastroparesis, it is incurable and life-long but if It’s the result of anorexia, medication or a virus, it can sometimes go into remission or completely resolve. This is because there is an external cause that if removed, can resolve the disease. If you get Gastroparesis from Diabetes (most common reason) it rarely goes but can be ‘managed.’ Typically, most Gastroparesis patients are female and young. There must be an element that is hormonal for this reason.

I believed because the Gastroparesis was caused by a virus that I’d be able to over-come it. I held onto that hope fiercely for this reason: We’re all going to get something in our life time. We may get more than one thing. It can be serious. Living with the reality of that is part of surviving and coping. It is naïve to believe it can’t happen. We may not want it to and we may do everything in our power to stop it from happening but there are no guarantees. Health freaks get sick too and people who are unhealthy sometimes don’t. That’s life. If we can fight we might win. It’s worth trying.

Having hope of a recovery may seem pie-in-the-sky but it’s how I coped. I recognize some diseases are incurable, many of my friends have diseases like that. I hoped I could overcome the worst of Gastroparesis because some people do. I wanted to be one of those people. Who wouldn’t?

I was told by a few that Gastroparesis might have been caused by vaccines (no) that I had to have when I came to America as an immigrant. I was told it could be caused by stress (no) and many other reasons. Gastroparesis is autonomic, it’s the result of a failing relationship between your Vegus Nerve and the Cells of Cajal which control the movement in your stomach and digestion. Usually those who get Gastroparesis already have the Achilles’s heal of poor digestion. More than 50 percent of us have motility disorders, that can be as innocuous as constipation or diarrhea, or more serious like IBS, IBD, Crohn’s etc.

I’d always been susceptible to nausea, and bloating, but nothing near as awful as Gastroparesis. It’s a whole new world of hurt. Gastric Arrythmia which is my sub-set of the disease, feels like a washing machine in your stomach and gut, set on super-frantic high hot spin. It feels like being hung upside down and swung whilst having that washing machine going at 100 miles an hour in your stomach/guts. The nausea I call ‘Super Nausea’ as having been pregnant I know what Morning Sickness is and it’s a whole different level. You can’t eat. You can’t swallow. You can’t function. You can’t even drink water. Therein lies the cycle of losing weight, and fighting against your own body that appears to have completely shut down.

We all go through a lot. In just a few years I have had a bunch of small health issues that have been scary and overwhelming, that’s part of ageing and living in the modern world for some of us and we somehow learn to live with it. But when you get a disease that is all embracing, it literally hijacks your life. I thought I was a fairly strong person, having gone through my fair share of challenges over the years, but this was a completely other level of horror. What helped me were the few friends who stood by my side and supported me because I had no family and no resources and I basically grew to want to die over the months I went through this. I don’t say this for pity. I say this because being honest about what you have experienced is how you explain your perspective.

Fast-forward 7 years I began (wrongly) to think I was conquering Gastroparesis. The last ‘issue’ was I would get sick flying; which I put down to a combination of stress, altitude and bad-luck. I blamed myself (I’m very guilty of blaming myself and feeling guilty which really does me no favors) and thought if I could just control it better, I would beat it back. I figured the anxiety of going to Europe to visit relatives and the challenges that entails (a lot) were the main cause’ even as my doctor said altitude is a very common trigger for nearly all chronic diseases especially heart and digestive.

Gastric Arrythmia feels a bit like heart problems because physically you panic (not mentally) which then leads to mental panic. It’s because your stomach is near your heart, and it feels a lot like heart arrythmia, which for those who have it know, nearly always leads to a physical and then psychological panic response. Being trapped in a cheap seat in a plane for 14 hours with poor air, poor food and no space, it’s not surprising I would end up sick. If I went back to Europe for a necessary trip (never a vacation, believe me) I’d be invariably sick at least half the trip. It was nightmarish and I developed a phobia of flying as I couldn’t separate the act of flying with the act of getting sick.

The last trip (2023) was the worst because I had more stress going into the trip, having had a biopsy and kidney infection before hand and the accumulation plus the actual flight caused me to be sick whilst flying. Throwing up every 10 minutes in an airplane bathroom alongside diarrhea and incredible pain and nausea is about as bad as it gets. I have never had a worst experience (some would say I’m lucky for that). It was a real wake up call. I decided I was being naïve about Gastroparesis not controlling my life anymore, of course it did, my faux optimism was just denial.

This is what Gastroparesis has really done, not what I have tried vainly to positively project:

  1. Made me involuntarily anorexic at times because I loathed food so much as I would throw everything I ate up. I became so thin, I looked far older and was far weaker, my famous appetite has never been regained and I’m sure I have damaged my body by depleting it of vitamins. Losing weight with every attack has ruined my skin and health.
  2. I have never had a panic attack but I have had long term anxiety from being so sick and it has also made me sick.
  3. People don’t understand and they judge you and shun you and blame you, which really hurts.
  4. You are not reliable, even if you are the most reliable person in the world which I used to be. You can’t be counted on. You can’t make plans and guarantee you’ll keep them. You waste a LOT of money canceling plans.
  5. Being sick is VERY expensive and guess what? You can’t earn enough to make up for that because you get sick again and again.
  6. Being sick is VERY demoralizing because we’re brought up to believe (wrongly) that being sick is a weakness, OUR weakness. A choice of sorts. So, if we continue being sick it’s somehow our failing. I have been told I caused this by my life style choices, which doctors have said is patently wrong but it doesn’t stop the sting of hearing that.
  7. Being sick is VERY lonely because other sick people don’t always have the spoons to help, and they have their own battles, and well people don’t get it.
  8. Working when you are sick is nigh impossible but that’s what I have done; though at a high cost when I commit to things and then am sick for weeks on end. For those who believe disability is easy to get if you are sick, think again. Disability is almost impossible to get especially if you are functional some of the time. That is considered employable even if technically you really aren’t. If you do get disability, it’s pittance and you are always worried about money.
  9. If you have any depression prior to being sick guaranteed it will worsen. I did and it did. I often find it hard to know how to keep on because I already struggled with that when I wasn’t sick and I did my best being a functional person but sickness really brings you to your knees.
  10. Staying positive is like chasing a drug. The drug of positivity. The world tells us to be grateful, but sometimes positivity is plain wrong and misleading. We can spend years convincing ourselves we’re doing better and we’re lying to ourselves just so we don’t have to admit the awful truth or be judged for being negative.
  11. I was a therapist and I couldn’t afford a therapist and yeah, I did need one to process all this.

I don’t make any of these points for pity or to feel sorry for myself. I don’t need or want pity and I don’t feel sorry for myself. I feel sorry for anyone who is sick and experiences half of what I have, or worse, experiences far more than I have (and there are many people out there right now who do).

Modern medicine doesn’t have answers to so many things. The system is broken. The doctors are burned out or indifferent or caring but unable to do anything. There are miracles, there are good things, there are good doctors and there are nightmare doctors. It’s a crap shoot and even with the best research in the world you can’t always get better. The reality is for most people with chronic illness, they don’t get better, they make the best of what there is and sometimes that’s really, really hard.

I have always relied on and valued my closest friends because I don’t have kids, and I have faraway disinterested relatives and so friendships were my life line as I was theirs. Illness really challenges friendships because there’s not much someone can do, especially from a distance. But never discount the value of a good friend. Which is why I attempt (and fail often) to be a good friend to others, because I really know the value of someone who cares.

Gastroparesis is a really awful disease. Not the worst one out there by any means but awful nonetheless. We all have things that are wrong, we may not be able to digest onions, we might get hangovers from one glass of wine, or not be able to eat spicy food. But when food and digestion become your enemies, that’s so opposite from our impulse to live. We eat to live. If we can’t eat because it makes us violently sick then what? Forcing food day-after-day, hour-after-hour so you don’t slip below 80 pounds is not anyone’s idea of a fun time.

Speaking of fun; I haven’t had much lately. The Gastric Arrythmia came back after 7 years. I had talked myself into believing if I’d beaten it back this much it was mostly better and mostly better was a good thing. I never (ever!) imagined it would come back as badly as it recently has. Far worse than any relapse or episode in all these years of recovery and set-backs. I was reminded of the first time; waking up at 4am throwing my guts up, unable to keep anything down, losing weight every single day and being able to do nothing about it. Not being able to even keep water down. Getting so depressed and sick feeling that you just want to end it.

No, I didn’t think 7 years later this would happen. Foolishly I believed I was on a path to healing; that I was one of the lucky ones, and most of the worst of it was behind me. I would have god-awful relapses especially on planes, in times of high stress or after an illness but none were as bad as now. I am brought to my knees by this reminder and left wondering … what are you trying to tell me God?

But I am also 7 years older. 7 years ‘wiser’ and 7 years further down the road. Which means it hits me more than it did when I was 7 years younger and less beaten down by this physically and mentally. I try to remind myself of all I have learned, I see myself able to cope with things I could not, first time around. I remind myself even in recovery you have set-backs and regardless of how bad they are, it doesn’t preclude recovery again. But at the back of my mind, I can’t help thinking … you got as sick again after 7 years and you kidded yourself you were really recovering and this severe sickness proves you are not ever going to get well because you would have by now if you were going to.

How to cope when the nightmare is real? I don’t know. Sorry. I’ve been a therapist, and a whole bunch of other things but I have no earthly idea. It is easy for people to say; distract yourself, don’t catastrophize, be optimistic, don’t dwell on the past. All those things are true but for sick people it’s virtually impossible because that’s all we have; the horrors of the past to remind us of how bad things are and possibly the horrors of the present to remind us how bad things can be. It is a full-time job staying afloat when you are inundated with symptoms and unacceptable suffering. I admire all those who are sick because of what they have to go through daily that those who are not sick may never understand.

Being sick is a full-time job. And it’s unpaid and relentless.

Accepting I am chronically ill and may always have these long, long periods of intense suffering is not something that comes easily. I’m generally told I am a cheer leader to my friends and that’s true, but I no longer am able to cheer lead my own self. I heard someone say the other day; “the best years are ahead of me.” They were 60+ and I admired that they thought their best years were still ahead of them. I have not felt that in a very long time due to this illness. It is hard to imagine a future that isn’t awful. I spend every single day trying to reframe those thoughts into something livable and not terrifying.

Yes, I hope I will recover. Yes, I hope this won’t happen again.

I think however it will happen again and if it keeps happening, by the time I am 60 I will be very, very tired. I try to imagine dealing with this when I’m 70, 80 … and I can’t imagine my body being able to. This illness has changed my life in every way I can think of. I used to be fairly fearless, intrepid, adventurous, social, fun-loving. Yes, I had my demons and I’m lucky as hell I had any good years as some get these diseases when they are still so young. But I don’t recognize myself any longer. I feel old for the first time in my life and I feel exhausted. I feel fear about the future not excitement. How can you hope to live if any minute you get sick again and everything turns to dust?

What can I impart that is positive from this? Do we have to impart something positive? I have always tried to. It’s how you get through life, by having hope and supporting others and trying to see the world through a bearable lens.

I have spent many years helping multiple people. But at this juncture I would give almost anything to just be given a reprieve from an illness that has literally stolen my life. I have a relative who is very sick whom I would love nothing better than to help and actively spend time with but they’re abroad and I get so violently sick when I fly that it’s literally impossible to be as supportive as I want to be. I know one day I will have horrible regrets about not being able to literally do things I need and want to do. Illness doesn’t just steal your life, it prevents you from doing some things for others you really, really want to do. It doesn’t just reduce your life span and make your future horribly cloudy, it acts as a weather vane for every fear and anxiety we humans are capable of. Because if you can’t look after yourself, who will look after you?

If you have Gastroparesis or another serious illness then you will understand much of this. You may nod your head or disagree with me and think I’ve given up and am weak. If you have never been sick you may wonder why I’m making such a big deal out of it (it’s just throwing up and nausea after all!) and if you don’t understand at all then I hope truly you never do. Because understanding isn’t all it’s cracked up to be. Understanding your limits when you want to believe you have no limits, is the opposite of living and thriving, it’s shutting down and giving up your dreams.

I only hope that yet again I am wrong and somehow some kind fate will not bring this awful disease around to visit me again and again until I succumb to it. It helps me understand and truly empathize with all those I know who suffer far worse than me; all these good people who are caught in the ravages and specter of chronic illness. And for those who judge those people? May you never have to experience this yourself, where undoubtedly if you do, you will finally and too late, understand mercy. And no … taking ginger or getting acupuncture doesn’t heal you. If only it were that simple …

One thing I think would help us all if not heal us all, is kindness. I have seen such unkindness lately, shocking things that I would never have expected. I believe just as trauma can make us sick, unkindness is a kind of poison and kindness an antidote. If we can do one thing to alleviate even a little suffering, it’s to be kind and not to deliberately hurt others. None of us really know what others are going through. Don’t say you love someone you don’t love. Don’t call them a dear friend if they are not. Don’t betray them or backstab them. Don’t be cruel because you are hurt. Don’t be vengeful. Don’t lie. Don’t go out of your way to get someone back. Be kind. Be compassionate. Do no harm.

25 Replies to “How to cope when the nightmare is real?”

  1. Understanding chronic illness is difficult unless you experience it. Kindness caring is the answer to help alleviate the pain and loneliness of any illness including Gastroparesis. Prayers..good thoughts.

  2. Oh god this sounds awful, you have my sympathy for sure, I really hope things turn around for you very soon

  3. Candice, I’m in awe of the courage and the need that allowed and brought you to tell the story (so far) of this illness so completely, clearly, and honestly. And the great truth at the end that this wold is so far in need of more kindness and compassion needs more saying and doing. Oh, dear friend, if I could lift any of the hold and weight this disease has over you … if only, but it is not an adversary I have tools to fight, even less that those doctors. So, I do what I can, send love that does not depend on you being well, performing tasks, or anything but being in my world.

  4. Incredibly written, and I wish every person with any influence in the health policy arena could read this.

  5. “Being sick is a full-time job. And it’s unpaid and relentless.

    Accepting I am chronically ill and may always have these long, long periods of intense suffering is not something that comes easily.”


    Hang in there, my friend. If we all made an attempt to place ourselves in someone else’s shoes, as human beings, we could be so much better.

    But alas, and until then . . . maintain as best as you can.

  6. I’m so sorry for all the things you’ve been through. Nightmares come in all shapes and sizes, some seen, some invisible to others. I hope things improve and they come up with a cure.

  7. I wish health for us all. Which is probably unrealistic but I do because we all deserve that. Thank you dearly.

  8. My friend, I remember when I was sick in 2017 and the only thing that got me through was my friend Mark who has Gastroparesis and was so, so kind and helpful. We are still the best of friends after sharing that – but the other thing was what I could find online because there’s so much negative information out there and I wanted to find out more and someone had a blog where they said they got over Gastroparesis and it gave me hope. Whether I get better or not, I want to help others in some way, I’m not sure this really helps anyone as it’s pretty negative but the other posts I made did because I got some people writing me afterward saying they found it helpful – that’s all we can do and it does help I think. Thank you for being such a good friend to me over these years. Sending love means a lot to me and I really, really value our friendship and your good soul – the world needs more like you Bob. I’m really glad I can call you my friend.

  9. Dearest Stephanie thank you so much for these lovely words of support. It means a great deal to me. I want to try to help others who are going through this. Your words have helped me.

  10. I love what you said here; and agree completely my wise friend. Thank you.

  11. thank you so much dear one, you are such a ray of light and always have been.

  12. thank you so much Kevin for your good heart and kind wishes which mean a lot.

  13. Thank you my beautiful talented friend, for the beauty of your heart.

  14. When I was very ill, there was this feeling of almost reaching an opening, only to be snatched back before I could fully escape. I never looked especially ill, mostly just tired, so had a very hard time trying to describe what I was going through, or, feeling like I was allowed to take the time I needed to, to describe. Good writers who can actually convey something the way you have here, are so rare. Perhaps because it is very hard to do when struggling! I went looking for what I thought was a much shorter Virgina Woolf quote but found this today:

  15. Gosh this really, really helped me and I am so glad to meet you here and learn these things because I completely agree with you and bravo to you for caring about others even as you have suffered so much, because some do not and those who do, really, really make the world a better place.

  16. It’s wonderful to meet you too. Thank you. We do need a more sensitive world, don’t we? <3

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