This Sunday marks the beginning of mental health awareness month.
Chronic pancreatitis can be really difficult on your body, but it also takes a toll on your mental health. What has been your experience with mental health and pancreatitis, and in what ways do you manage?
That’s an interesting topic!
I got sick with my pancreatitis age 19. It was really poor timing…not that anywhen is great timing for pancreatitis!! But I’d just finished (or was finishing) my first year as a student nurse. All my friends had moved all over the country and were at different uni’s and I was at home with my parents in and out of hospital on a regular basis! It was just that age where you’re learning who you are in adulthood, and I feel that kind of got stolen from me. It affected my mental health quite dramatically and consequently now (43) I’d say it still affects me.
I feel like I never really figured who I was away from my parents and lost out on the fun years of uni and I’ve struggled ever since to know/find my purpose. I’ve been diagnosed with clinical depression ever since…although maybe that would have happened anyway, but I know it definitely didn’t help!
I also used to get severe anxiety but that’s kind of settled a bit now and it’s also triggered off an eating disorder which is your worst nightmare with Chronic pancreatitis, EPI and insulin dependent diabetes!
madonbrew It sounds like you've had an incredibly tough journey with this disease-- I'm so sorry to hear that. Thank you for sharing your story with us and for always being so engaged in the community. These are the kinds of hard conversations that are the most valuable for those who are also suffering from this disease. It really does help knowing that you are not alone!
Thank you Sofia 🌺Yes it’s been kind of hard in many senses but because I was so young at diagnosis, it’s now been more than half my life and it’s become my norm. I’ve just started to figure what an impact my ill health has had on my life…feel like I’m going through a bit of a grieving process about it because of what I’ve lost because of it.
But it helps coming here knowing like you say, that I’m not alone!
I hope you’re doing ok?
Dee ❤️
I am always optimistic that if I work hard to manage all my symptoms and deficiencies and other problems I will improve my life enough that I can work enough to stay solvent.
I manage (lower 😃) my expectations - we are only disappointed if we hope for more than we get.
I make the most of every good thing.
I always look for the good in every situation - even very bad experiences at least teach us not to do "X" again or whatever, or teach us new levels of fortitude and perspective.
I have pets!
I love the sunshine and the natural world around me - and I am lucky enough to live in a rural area.
I find out about things and learn the scientific facts so I am not destabilised by "the unknown".
I enjoy being kind to people and since a toddler I have had an aim to make people - random strangers - around me smile by smiling at them as I go about life.
I really admire your mindset, deniseinmilden ! I also find a lot of comfort in sunshine and nature. Sometimes I forget how much I love being in nature (I live in NYC so I have to look hard to find nature!) but every time I lay on the grass and read a book it makes me feel a thousand times better. Thank you for sharing 
It's wonderful that there's beautiful nature all around the world, isn't it! Well done for looking for it in the city. It might not be so obvious but that makes it all the more special! xx
I have struggled with mental health during my pancreas journey. At first, waking up after being in a coma for three months as a result of necrotizing pancreatitis, I was put on a prescription for depression. About two years later, I was able to stop taking the depression meds. Since then, I have become disabled because of chronic pancreatitis. In general, I am a positive person. But I have noticed I have to choose to be positive. I purposely focus on what is good in my life. I focus on what I can do, instead of the things I have lost. I use music, humor, reading, arts and crafts to help stay positive. It's not easy, but I take life one day at a time.
Thank you so much for sharing, Signingfun . This disease takes so much from people, and choosing to be positive is such a great mindset to have. What kinds of arts and crafts do you do? I really enjoy acrylic painting and find that it really helps my mental health!
Hang in there!
I have a bunch of interests... origami, calligraphy, watercolor painting, plein air drawing, knitting, sewing and cross stitch. I also enjoy growing flowers in my yard. Some of the flowers are in flowerpots and others (like my butterfly garden) are in a section of my yard but doesn't need much work to keep growing.
I love doing arty crafty stuff too…I made some little cross stitch Christmas cards last year…and love getting my sewing machine out. I also really enjoy writing ✍️ and I play the piano…just started getting lessons again so that’s a positive!
It really helps with mental health, doing the things we can and enjoy!
Those are great cards! I always like that personal touch. It's feels good to think of bringing a smile to someone's face. And helps me to get out of thinking about myself and my health issues. I enjoy playing the piano too. Something about music just makes me smile. Thanks for sharing!
I’m glad you enjoy playing the piano 🎹 too! I’ve recently taken up lessons again! I’m trying to learn Moon River atm!
Fantastic! Well done you - what an inspiring reply. Its hard if you dare to look at your situation, isn't it, but if you keep looking "out", it can be made to be OK.
I too choose to be positive - it's harsh but I always give myself an ultimatum to "do or die", I call it, and it means I can get on and choose the positive option or roll over and give up. It's amazing how mentally strong we can be if faced head on with our challenges and we don't let ourselves back out. The sense of good I get from triumph over adversity helps to get me through when the adversity wins no matter how hard I try! 😃
Thank you. You're right when I can help others it encourages me.
My introduction to pancreas issues was so severe that I kept thinking that having survived there must be more life for me to live. My life is very different with pancreatitis. I have had to get used to life in the slow lane. It has helped that I have a wonderful support system. One day at a time, I live life. Some days are better than others. I try to focus on the better days.
This is a painfully on point topic for me today. I just finished writing a journal entry about the connection between gut health and brain health for me. Because I don't have a tolerance for fat, I'm quite literally starving my brain of the fats it needs to function well. When I eat more fat because I'm can't stand the brain fog anymore, my pain increases and I'm more likely to have an attack. Both scenarios affect my mental health.
I've never quite understood why we (human beings) tend to separate physical health and mental health - they are one. So what do I do when what my pancreas demands is incompatible with what my life demands? There's no easy answer here.
I keep my health goals in sight and continually tweak the details to uncover what works and what doesn't. I'm not always positive about this journey, but I try really hard not to be fatalistic.
I prioritize the things that are important to me and uplift me - family, friends, quiet time, books and movies that inspire me, time in nature, sleep, movement, water, breath, laughter - and strive to make my situation better. I say no a lot more than I used to and have no shame in holding those boundaries.
It's a daily battle - sometimes minute by minute - and it's exhausting. But I want to experience life, not just live, and that's worth fighting for.
Saying no and setting boundaries is a radical and powerful act of self care, Sshe ! Thank you for sharing your experience. I really like all that you mentioned, especially the part where you mention books and movies that inspire you. Do you have a favorite movie you like to watch? I'm not usually a "movie repeater", but there's certain films that never get old no matter how many times you watch!
Thank you so much for sharing your experience. I really resonate with you about viewing mental and physical health as one in the same. This is also the case for me, especially with diet and sources of fat I once enjoyed but now can’t tolerate, like peanut butter.
I still find setting boundaries to be difficult, especially when it comes to food. Although I find more and more that being confident in my resolve to prioritize my health overall is empowering in a way.
You’re so right about there being no easy answer. I want to take care of myself and my condition, but I also don’t exist to manage a medical condition. I try to marry the two the best I can.
Thanks again, and take care ❤️
I’m with you too that MH and physical health come together! I wonder how it’s managed to get so separated over the years!?
I really understand the setting food boundaries hard! I’ve always really struggled with food one way or another and pancreatitis, EPI and diabetes are my worst nightmare because of it. It’s definitely a tricky one!
But like you say, it’s trying to marry living, with living with a dodgy pancreas, together! x
Thanks for sharing. I agree too that mental health and physical health are connected. Each effects the other. I relate to the daily battle, it is exhausting, but life is worth it.
To say I suffer from periods of despair and depression is an understatement. I used teach university English, a job I was passionate about. I had to give up my profession because of this disease. I feel useless.
I’m really sorry to hear about your experience of suffering. I can’t imagine what this condition has done to your life, with not being able to work. I’m happy you’re here ❤️
Dear Susaberry, 🌺I really understand the understatement of despair and depression! I have also really struggled with this. It’s really difficult having to give up a career…I had only done my first year as a student nurse and didn’t really know if it was what I wanted to do, and was never very confident. But now I’m 43 and am not qualified in anything because of the years of ill health…AIP, EPI , my own type of diabetes, chronic kidney disease, severe asthma, an eating disorder and clinical depression. And it makes me feel very inadequate within society.
So I can imagine how difficult it is for you going from being a uni English teacher to having to give that up.
I’m trying to learn that I’m more than my illnesses and that my identity isn’t defined by them. But it’s tricky sometimes!
You are totally not useless…you are obviously a very educated and talented woman who just happens to have a crap disease, but that doesn’t make you useless!! It’s just trying to find new ways of doing things we enjoy that we can!
Like cultivating_courage has said, I’m glad you’re here! ❤️
God bless you for your encouraging words. I’m so sorry you’re dealing with CP and the diseases that go with it. You must be a strong woman as well as a very kind one for responding to my post. Do you have family and friends who support you?
One of the times I was in the hospital, the doctor came in to see me. You know how doctors stand above your bed and talk to you? This one didn’t. He sat down on my bed, took my hand, and looked directly at me. He began gently rubbing my hand and said, “ Nora, never give up. No matter what, never give up.” I was touched by his kindness and humanity. I’ve never forgotten his compassion. So if I were with you, I’d sit beside you, take your hand. Never give up.
Dear Susaberry, 🌺…just a quick one to say I’ll reply soon! x Thank you for your lovely reply! ❤️
Thank you too so much for your lovely reply! It nearly made me cry! That’s such a lovely thing, that you’d sit beside me and take my hand! That really meant heaps…it’s amazing how even when you don’t know someone, how powerful a kind gesture can be!
I used to have a most amazing consultant..well she was a registrar when I first saw her then became a consultant in her own right She walked the walk with me for 20 years or so but has recently died of breast cancer. We cried together and she helped me more than anyone…not just physically but mentally too. She possibly stepped over a professional boundary and used to give me a really proper hug most times but it made her human!
I’ve got some amazing friends and my family kind of help. Do you have people to support you too? It’s really important having support and what’s nice about this forum is that others really understand too!
Please pop by for a chat and support anytime!
Dee x
Thanks for continuing the fight. At least I had a time of enjoying my work. You never had that chance. You're right we are more than this disease. I'm glad you're here too.
I've struggled too. I used to be an educational sign language interpreter. I enjoyed everything about what I did. Even though I returned to work at first, because of chronic pancreatitis I was forced into disability. I had fought to return to work, but my body just couldn't handle working. I was so much sicker when I tried to continue to work. What was best for my body, was not best for my mental health. It has been a struggle. Some days it's easier, but it's still a struggle to stay positive. It's just not fair.
It’s definitely difficult sometimes! I feel I’m just going through a bit of a grief process recently for what I’ve lost and missed out on due to my ill health…lol…after 26 years! I also have severe asthma and every time I see an ambulance flying by I keep replaying my trips to hospital by ambulance at the moment. It’s like I’m trying to process everything that’s happened or something.
It’s tough not being able to do the things you once loved! But I really hope there are other areas in life you can find something fulfilling!
❤️ Dee
You're right about a grief process. I've struggled with grief too. You have lost a lot to get chronic pancreatitis so young. Pancreatitis brought my life to a sudden halt. I'm thankful to have survived, it's just chronic pancreatitis and Type 3c diabetes never gives me a day off. But I try to focus on the life I still have. Some days are easier than others. Fortunately, there is life in the slow lane.Anne
I get the sudden halt! One minute I was bobbing along and then wham ! I really can’t stop going through everything in my head atm…it’s kind of weird but I guess I’m obviously trying to process stuff that maybe I haven’t allowed myself to before.
There is life in the slow lane Anne 🌺…I wouldn’t be able to play the piano as well if I were working, nor do so many of my arty crafty projects. And I enjoy doing them to be honest!
Like you say, it’s just the non escape from diabetes, pancreatitis and EPI that’s tricky! And asthma for me too.
Take care Anne!
❤️Dee x
Dee,I forgot to tell you I have asthma too. The last couple of years, I've had to be on prednisone. Not sure what changed. I was on Dupixent but I started having some bad side effects, so I've had to stop.
Take care,
Anne
My asthma was temporarily the most problematic thing…I had two trips to hospital with blue lights and sirens and was in for 11 days each time on crazy meds and back to back nebs and oxygen. Was scary! I can’t take pred regularly as it messes really bad with my head but I’m on 7 regular meds for my asthma and take pred if need be and I’ve another inhaler I can add on if things are really bad.
It’s all fun and games on top of the pancreatic problems and kidney disease.
I’ve not heard of Dupixent..you’re in the US aren’t you! I hope you don’t have too many problems with the pred?! Does it mess up your glucose levels?
Yes, I'm in the United States. The asthma definitely keeps life hopping. I have a couple of inhalers too. Unfortunately, a lot of the inhalers cause laryngitis for me. The prednisone definitely effects my blood glucose. Fortunately, I have a continuous glucose monitor and an insulin pump, so the technology helps me to adjust my insulin to keep my blood glucose down. Also, my doctor gives me a modified dose of prednisone. It is a struggle.
You hit it when you say, “what was best for my body was not best for my mental health”
Hello Christine.
have experience with a person with acute pancreatitis who was hospitalized for 6 months and had a difficult course. His mental health was ensured every day by receiving "Assists" from L. Ron Hubbard. He was also allowed to cry, to be angry, to laugh, and to be encouraged to express all his feelings and to be heard without judging what he said. A plan was made with him for the next life. He also received doses of vitamin B1 and a daily dose of vitamins and minerals. He was given milk thistle tea daily and was not forced to eat liquid food from the hospital because it caused nausea and vomiting. Hospital preparations are too burdensome for the pancreas. They contain substances that are irritating. This is how he got to the point where he could go to retreatment in a good mental state and continue with energy and with new goals. I do not recommend drugs for depression and the like to anyone, but only nutritnalments, and a great deal of patience and communication.Do
📣 Discussion Topic: How did you find out your pancreatitis was chronic?
What was your experience with your pancreatitis diagnosis? 
chronic pancreatitis?📣 Discussion Topic: What obstacles did you run into looking for diagnosis support for your pancreatitis, if any?📣 Discussion Topic: Do you share your pancreatitis diagnosis with others?
