Mental Health Survey Results

These are the results of an anonymous questionnaire regarding mental health in the gastroparesis community.  The survey was open for a one-week period from September 25 to October 1, 2019, and was posted publicly on Facebook and Twitter as well as in our closed Gastroparesis Support Group (and several subgroups) and in our Gastroparesis: Fighting for Change advocacy groups.  We had 784 total respondents.


Please note that this survey is intended only to inform and should not be interpreted as scientifically proven data or as implying any sort of causation between mental and physical health.  Those of us conducting the survey are not researchers, and though we do our best to present and interpret findings, we seek primarily to spark interest in further research among those properly qualified to conduct it.  In addition, as a community, we wish to know more about our fellow community members, and these surveys give us an indication of the circumstances and difficulties others face.  In assessing the results, we find numerous limitations and shortcomings associated with this questionnaire, but we learn as we go and hope to conduct follow-up surveys to better enlighten us about the conditions in which this community finds itself.


Regarding the results, the first few charts show participants’ gender, age, annual income, general location, and number of years since being diagnosed.  Of those completing the survey, 95% of respondents (or 744) identified as female, and 41% fell into the 36-50 year old category.  67% had been diagnosed between 2-10 years, 21% for less than one year, and only 12% had been diagnosed more than 10 years ago.  Annual income varied greatly, with only 11% earning above $75,000 per year and 22% noting income of $10,000 per year or less.  68% indicated they reside in either urban or suburban areas (49% suburban; 19% urban) and 32% in rural areas.


When asked if they had ever been diagnosed with a mental health condition, 81% (or 629) responded that they had and another 6% (or 50) responded that, while they had not been given an official diagnosis, they believe they live with a mental health condition.  When asked about their specific mental health diagnoses (and permitted multiple responses), anxiety (77%) and depression (75%) were most commonly cited, followed by PTSD (40%).  Additional mental health conditions not included in the response options (but listed as “other” in written questionnaire responses) included eating disorders, borderline personality disorders, obsessive-compulsive disorders, ADHD, panic attacks/disorders, and several others.  [It is worth noting that, while not included in our chart presentation, 524 respondents (or approximately 67% of total respondents) cited more than one mental health diagnosis.  The most commonly cited combination was anxiety and depression, with 59% of total respondents (or 464) noting they had been diagnosed with both.]


Approximately 80% of total respondents indicated they either were currently being treated for a mental health condition (40%) or that they had been treated in the past (40%).  Another 8% responded that they had never been treated but believed they would benefit from treatment. When asked if they found treatment to be effective, 31% replied that they found treatment to be either highly (13%) or somewhat (18%) effective and 17% replied that they were either somewhat or completely dissatisfied with their treatment.  (For reasons we cannot fully understand, 52% selected “Does not apply” when asked this question.)  Of those who were currently receiving or had previously received treatment, only 22% indicated their therapist specialized in the treatment of chronic illnesses.  [While not included in our chart presentation, of the respondents receiving treatment from a therapist specializing in chronic illness, 90% noted that they were either highly (49%) or somewhat (41%) satisfied with their treatment.]


When asked about medications, 84% of total respondents indicated they were either currently taking medications specifically intended to improve their mental health status (56%) or that they had taken them in the past (28%) and 68% noted that these medications were either highly (23%) or somewhat (45%) effective.  When asked if they believed an approach which combined medications(s) with counseling would be helpful for most mental health conditions, 50% responded that, though they were not currently undergoing this type of treatment, they believed it would be helpful.  Another 34% indicated that this was either their current treatment approach or a previous approach and that it was highly (19%) or somewhat (15%) effective. 


In terms of current overall mental health, as self-assessed, 35% of total respondents rated their mental health as good, 17% rated it very good or excellent, and 48% rated it fair or poor.  When asked to self-assess quality of life, 67% responded that they were either not very satisfied (52%) or completely unsatisfied (15%), 26% were satisfied, and only 7% were either very (6%) or completely (1%) satisfied.  Of  the 784 total respondents, 628 (or 80%) who had been diagnosed with a mental health condition echoed these numbers, with 69% indicating they were either not very satisfied (53%) or completely unsatisfied (16%) with their quality of life.  (The quality of life ratings did not vary greatly from these figures regardless of the number of years respondents had been diagnosed: 67% of those diagnosed for 1 year or less were either not very satisfied or completely unsatisfied; 2-3 years = 67%; 4-5 years = 66%; 6-10 years = 64%, and 10 years or longer = 73% either not very satisfied or completely unsatisfied with their quality of life.)


When asked to whom they would first turn for help with a mental health condition, 67% responded that they would seek support from either a family member (47%) or friend (20%) and 15% indicated they would first seek help from a mental health professional.  Only 1% responded that they would first seek help from a crisis center or hotline.


Several respondents also submitted comments with their questionnaire, and we have included a sampling of those below.


As noted above, there are many limitations and shortcomings associated with this survey.  First and foremost, we wish we had asked respondents the estimated date of their mental health diagnoses.  It would have been interesting to note whether the physical diagnosis preceded the mental health diagnoses or vice versa.   We also wish some of the questions had been a bit clearer.  For instance, the question regarding income was designed to gauge household income, but because we failed to specify, we are not certain whether responses indicate individual or household income.  In addition, because our survey largely targets Facebook, we cannot assess those outside of social media.  Facebook limits accounts to those above 13 years of age as well, so we have very few if any respondents in that age category.


We would love to make further assessments as well.  We wonder whether and how age, location, and income have any bearing on the type and quality of treatment patients receive and on whether they have adequate access to this care.  We wonder what factors patients consider when evaluating the effectiveness of treatment, their overall mental health rating, and quality of life measures.  We would also like to know why patients value certain sources above others for help and support and whether that varies depending on the seriousness of the mental health condition or in the event of a true crisis.  We wish we better understood the connection between physical and mental health, if one exists, and would like to know details about the impact of one upon the other as experienced by patients, in their own words.  And, finally,  we would love to hear from patients as to what most needs to change in terms of how mental health is addressed and how we might go about implementing solutions to the problems this community faces.


We intend to pursue follow-up surveys, but our real hope lies in garnering the support of those scientists and physicians who might take an interest in this too-often-neglected gastroparesis community and reach out to us for further in-depth study regarding these matters.  We are grateful to all who participated and to all who take the time to review the survey results. 


Thank you!

Sample Survey Comments

Originally, I skeptically agreed with meeting with a chronic illness clinical psychologist to stop doctors from suggesting seeing one. I decided to continue seeing my psychologist on a regular basis to help cope with (the) negative impact gastroparesis and other health issues since have (had) on my quality of life. He has helped me deal with losing my career, missing family activities, being mostly homebound, preparing and handling surgeries, fears for future, speaking up for myself with “problematic” doctors, etc. I have not been diagnosed with any mental health issues; when asked, he states that I may have depressive moods/drops as a result of chronic illness stressors and debilitating symptoms (which is understandable) but am not clinically depressed.
My neurologist took me off all medicines for anxiety because he believes I don't actually have mental illness but that my poor quality of life due to my unmanaged chronic illness is why I am so anxious and depressed. I have lost my career and my family and am financially ruined. But I cannot afford therapy or really anymore doctor appointments. And the meds they are prescribing are out of reach or denied by insurance and still not addressing enough symptoms to get me back to work.
The chronic illness population is growing. We need more therapists who know how to help chronically ill patients learn to cope along with how to become resilient because of everything they must deal with.
I currently suffer from anxiety, depression, and bipolar disorder. Every day is a struggle. Getting help is a struggle due to my social phobia and anxiety. I wish getting help was easier somehow. It stresses me out.
Not enough mental health resources specifically geared to the GP community, unfortunately.
In the past, I have encountered a lot of therapists who seemed more interested in pushing pills on me than actually trying to understand and address the underlying causes of my depression and anxiety. Honestly most of the time they just made me feel worse than I started out feeling. They have little to no comprehension of the impact of a chronic illness on the individual and the people closest to them. They act like antidepressants are magical little happy pills that can fix everything but they are not! Sometimes I just need to cry and scream and just let it all out. I don’t want or expect anyone to fix anything or even really do anything. Just see me and be with me so I’m not so alone. It can get terrifying and overwhelming at times. And often, I just don’t want to be alone. I fear that I’m going to die, and I just want someone to help me to not feel so alone and scared. It’s not something that a pill can cure! And I often feel like I can’t really talk about it to anyone because it seems like everyone always wants to jump right to suicide and they don’t listen to what you’re actually saying! And it’s exhausting and frustrating!
I lost my job/insurance because of GP. This has a negative effect on my mental and physical health as well.
My GI doctor says that my problems are caused by all of the medications I'm on, a lot of which are for mental health. But I didn't get put on them until after my diagnosis. I just want to give up and stop taking all of my medicine. I don't know what to do!
This illness is so very hard on your mental health as well as the physical challenges you experience. You live in fear of what your body is going to do to torture you. You have anxiety when you’re dealing with anything to do with food, never knowing what or when you’ll be sick again and how long it will last. Social events cause anxiety and if you’re not able to attend, depression sets in… The disease is hard enough, dealing with doctors who don’t understand the disease and they treat you like it’s a mental health issue, when physically you’ve never felt worse in your life. We need more research and help from the medical community to keep us going with the best quality of life possible.
I have had all of my psychologists/psychiatrists/therapists/counselors tell me that it is absolutely understandable that occasionally I get suicidal thoughts because of my Gastroparesis. I have never and will never act on it. It’s just that there are times when my health is so poor that I feel like I’m a huge burden and good for nothing. I don’t take antidepressants because they cause indigestion and constipation and nausea and I already deal with that enough. I’d rather keep trying to manage my mental health with a therapist I see once sometimes twice a week. I understand that anxiety and depression can make the Gastroparesis worse but most of the time it stems from Gastroparesis so it is a vicious cycle. I don’t know where I would be if I didn’t talk to someone about it. That’s all I can do. Talk about it because there really is nothing that can be done to make it go away.
My symptoms of depression and anxiety have greatly increased since my digestive system issues have started. I also believe I’m dealing with PTSD from the years of suffering with symptoms, testing, and poor treatment by doctors/nurses.
I believe that the quality of life issues that people who have GP are not adequately addressed. I am daily devastated by the number of individuals I see on the Facebook GP page that express lack of hope, inability to cope, and their great frustration with the inadequate ability of the medical professionals in meeting their needs. I believe that overall we are not heard, our concerns are overlooked, and the quality of care for this disease is very poor. I hear frustration, dissatisfaction, resentment, and downright anger in the voices of those who suffer with this disease.
With gastroparesis I find that my mental health status changes with my symptoms. When I am flaring, I go from fine to suicidal very quickly because I am worried that I Will never come out of it.
I think there are special kinds of difficulties having chronic illnesses add in, hindering good mental health. It's hard to keep up with therapy and the like when you aren't consistently well enough to attend. Poor attendance leads to being removed as a patient.
My mental health was at its worst before I was diagnosed. I spent 6 years going from doctor to doctor, test to test before finding an answer. Once I got the diagnosis and was able to try and work to aid my symptoms, my mental health improved exponentially.
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Gastroparesis, a debilitating and destructive chronic condition

Natasha Jones

I suffer with Gastroparesis. A debilitating and destructive chronic condition that has ripped me apart. I have lost my sense of self, my ability to have a job, my brain function is slower, my body is in pain every minute of every day, I can’t be spontaneous, I take bouts of medications all day every day, I feed through a tube in my nose into my bowel, I will soon have surgery.

The treatment options are abysmal. The motility medications rarely work and often make us worse. The only pain medication available is both addictive and slows down motility but we have no other option. The anti-sickness medications rarely work unless administered through IV but a lot of us do not have access to that.

I’m only 25 and therefore my specialist refuses TPN. TPN itself causes a huge amount of issues. There’s no one looking for a cause, and there’s no cure. We are tubed, stuffed with medication and left to rot at home. We see specialists twice a year due to overwhelming lack of funding. There’s no mental health support and none of the therapy treatments apply to our condition. We are shoved aside, blamed for our condition, accused of lying, accused of drug seeking, accused of starving ourselves. All this is soul crushing. We get treated so poorly, despite the fact that we have an organ that doesn’t work properly.

Imagine if it was your heart, kidney, lungs, you’re treated properly. You’re treated with respect. But when it’s your stomach? You’re left to deal with it yourself, like being thrown to the gutter. It’s absolutely appalling. We are dying, slowly, we are getting more sick, slowly, we are in pain, all the time, we deserve better! Across the whole world we deserve better. We deserve recognition, better treatments, less ridicule and we deserve respect. Could you imagine living everyday with food poisoning, every day, for the rest of your life? Just imagine it. Imagine how that would feel. Would you be able to work? Would you expect to be treated better, properly? This is our lives. All day, everyday! We deserve better.

Gastroparesis has taken so much from me but I will refuse to let it take all of me. I am a warrior and a fighter. I fight everyday, we fight everyday. More than a lot of people could comprehend. I try and raise awareness because we are treated like an afterthought! It’s only our Gastroparesis groups and warriors that are fighting for awareness! We are the ones powering through for better treatment, better mental health support, better understanding, less ridicule all whilst suffering tremendously. This condition can be all consuming, soul crushing, mind altering, painful in every aspect and so unbelievably destructive. But through it we find strength we never thought we could ever have, we gain a family across the world that are there for you and understand you 24/7, we find new comforts and hobbies that we would never have considered before, we establish who is truly there for you, we push boundaries that we never thought were possible and we find a new respect for just how much the body can persevere. We are warriors. I am a Gastroparesis Warrior.

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Life is hard enough

I suffer from gastrointestinal problems and have recently been diagnosed with gastroparesis but after only trying medications that did not work the idea was changed. Based on what sounded like very little knowledge. I am home and struggling because there isn’t enough research out there to help diagnose these things let alone treat and maybe cure. I have suffered since I was a child with the same problems, now age makes it difficult to handle. I have a daughter who just turned 12 years old. I have a life to return to. I’d rather be worrying about my daughter than fighting and getting frustrated and depressed because I am afraid I may pass before she turns 18. I cannot afford a life change life is hard enough without the uncertainty of life.. please raise more awareness, look more into it. Spread all these stories. I’m broken from having to watch my daughter shed tears every time I return from the hospital as if she’s expecting me not to return one day. She’s scared and she’s young. Please.

Submitted by:  Zujeily Sanchez


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Although I’m overweight, I eat less than a child eats

Since I was a child I’ve had issues with my stomach and bowels.  But in 2012 I was given a diagnosis of gastroparesis. Two years after that I was diagnosed with pre-diabetes. When my stomach is in a fit, my blood sugar goes way up, when it’s having a good day my numbers come down. I’m supposed to only consume liquids or purees for my meals. My stomach doctor said just put your steak, potato and broccoli in a blender. I’m sure there is a way to make that taste okay, but no thanks.

Over the years my stomach has gone into “remission” and I could eat what I wanted and be okay. But that doesn’t seem to be the case anymore.  Although I’m overweight, I eat less than a child eats. Everything I consume at this time just makes my stomach hurt, I get severely bloated, I look pregnant, and I’m miserable. I can’t eat fresh veggies or fruits, they have to be canned or cooked to mushy status. No peels either. I can’t eat red meat, even ground anymore. If I eat like a normal person, I feel like my stomach is going to explode. Yet I’m over weight and not quite malnourished enough for a feeding tube, yet.

I eat empty calories, so sugar, fats, things you shouldn’t eat, but anything else just makes me sick. I’m fortunate that I don’t throw up, yet. But the nausea, the bloating, the pain makes me not want to eat anymore. So then I’m labelled with an eating disorder. I have no energy, I hate going out to eat with family or to their house because I’m so limited on what I can and can’t eat.

There are many people that are far worse than I am, so I’m grateful that I only deal with these issues. But I’m tired of my GP being associated with diabetes. I had GP for 2 years before my A1c showed high. I think there needs to be more education in the medical field so that they have a better understanding of this disease. If our only treatment options are a drug that is really harmful to people, so much that the FDA won’t approve it, then we need change. I would like establishments to be more understanding when someone like me wants to order from the kids menu as to not waste food, can order from the kids menu without getting told that they can’t do that. I want there to be more awareness.

Submitted by:  Heather Cooper

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It has changed my life dramatically

I’ve had gastroparesis since 2010. It’s changed my life dramatically. Surgery to remove my gallbladder because my stomach wouldn’t move food. It just sat there. Tons of nausea, weight loss, abdominal pain…daily. I had to change how I eat food to more liquids, smaller meals, which wouldn’t have been as big of a deal by itself but because of comorbidities is highly challenging to nigh impossible. My diet is already limited due to Crohn’s disease and lack of a colon. The only FDA approved medication that worked for me was Reglan and that has a black box warning for tardive dyskinesia, which is unstoppable shaking for the rest of your life. I took reglan for 7 years due to no other options. If I didn’t take it I’d be so nauseated I couldn’t eat and my stomach would take days to empty one meal. My doctors didn’t think reglan worth the risk. I now take a medication from the UK called domperidone that I have to order online because it’s not FDA approved. It works better than nothing. In a country where there are multiple drugs for the same health concern, why is it that there is nothing in America I can take. Why were there only 2-3 options and none worth the risk due to potential and actual side effects? I implore you to push forward with research. Many people suffer idiopathic gastroparesis. It’s not our fault that we have it and there is no cure. Once the vagus nerve stops communicating that’s it. EDS, Lyme Disease, GI disorders have correlation with gastroparesis. As I learned in graduate school, correlation does not equal causation. Please find a cause. Please find a cure.

Submitted by:  Dr. Sarah Cooper

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