Jeanne Dagna

@drjeanne | contributor
Diagnosed with Crohn’s disease in 1977 and a permanent ileostomy in 1999, Jeanne is a retired special educator/admin who now spends her days chairing doctoral dissertations. She is married to an amazing woman who has supported her life and health for over 20 years, has phenomenal family and friends who help keep her laughing and has two “furry kids,” a Maine Coon cat named Tigger, and a Miniature Schnauzer named Rudy.
Community Voices

Share a song that gets you through a bad day 🎧

<p>Share a song that gets you through a bad day 🎧</p>
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Community Voices

Are Invisible Illnesses Truly Invisible?

We banter around terms that often need greater clarification and for me, one of them is the use of the term, Invisible Illness. Can any illness that is insidious and potentially life-threatening really be Invisible, or do people choose on some level NOT to see what is in front of them? You can tell me how great I look, you can mention my sudden weight loss and say it with a tone that drips of envy. My very short haircuts weren’t always a statement cut or an attempt to be edgy as much as it was to face my ever thinning hair loss from my serious illness and chemo-like medication(s), but, again, people choose what they see and, often times, we unknowingly reinforce that process.

When asked how we are doing, our most common answer is, “Fine” or “Okay.” Rarely do we go into the nitty-gritty of the issues with our bowels and/or our joint pain or our ostomies, nor do we expound upon the side effects of our medications or our sleepless nights. One reason we lie is for social appropriateness. It isn’t acceptable to be the one who complains all of the time about stuff that makes others so incredibly uncomfortable. But, on the other hand, it doesn’t help to complain too much anyway because then people only hear the complaining and ignore that there are genuine emotions, pains, fears and anxieties attached to what they are hearing. Complaining also puts the onus on the other person to have to respond in some way that could be perceived as supportive or understanding and, honestly, some people just aren’t capable of that level of closeness or empathy or don’t know what to say. A friend of mine, who totally gets my disease (as much as someone who isn’t sick is able) said to me recently, “Oh, well, it is always something with you…” I know she didn’t mean it the way it came out, but it was hurtful and left me feeling as though I shouldn’t be sharing too much information with her, so I went back to my retort of, “I’m okay.”

In the end, most people often don’t understand the enormity of what we live with since so much of what we survive happens out of their site; the ER visits, seriously invasive medical tests and ongoing medications which often border on being considered intensive chemotherapy. This all feeds the concept of our Invisibility. Honestly, people are generally so focused on themselves and what others are thinking about them, that they truly aren’t seeing the signs and messages that are being projected by others; And maybe that is okay. My disease isn’t invisible because I am not invisible. You may not see it, but I wake up with it and go to bed with it, as I have done for over 40 years, so believe me, invisibility isn’t a word I would have ever used. Remission? Yes; But not invisible. My secretary used to say to me, “Okay, I hear what you are saying to everyone else, but how are you REALLY doing because I know what you are saying is BS” and then she would smile and wait for me to respond, not giving me the out of hiding behind the generic, “Okay.” It is the very rare and caring person who can break through our superhero force fields and willingly ask to see us without the cape and shield.

Community Voices

Stop those negative messages your telling yourself!

Just because you keep telling yourself the same things over and over does not mean that it is true!

I admin a group for women with #CrohnsDisease and often read posts about being on medications and the meds not working, but they don’t say it that way, they say things, such as, “I failed Humira” and with that my blood immediately boils. No, you did not fail the drug. The medication didn’t work for your disease/symptoms and so you need to look at other options or considerations, but let’s be careful not to own this as a personal failure of yours.

I’ve had themighty.com/crohns-disease for over 40 years and back then there were only two or three medication options; You took steroids, sulfa drugs or antibiotics. Those were the only choices. The disease was in its research infancy and, if you were lucky, your GI might have heard about it if he had recently attended some conference in a major city! Luckily, my docs were up on this newly emerging and rapidly growing disease, but the treatment options were still  incredibly limited and the access to patient-based medical information was almost non-existent (remember, no Internet, computers, websites, etc.). I wonder if doctors spent more time on patient education back then since there were few options to learn this stuff on your own, whereas today, they tell people to go join a FB group, which oftentimes leaves the patient to do their own deep-dive into the Internet abyss of questionably accurate and definitely scary information!

The changes in the medical treatment of Crohn’s in these subsequent decades has been amazing and along with it the complexity of the medications themselves, so I totally understand that is daunting for people who are considering new meds and find the black box warnings. Many of these meds were devised to address what we already know to be a complex and difficult set of symptoms; symptoms that are often as individual as we are, despite all sharing the same ultimate diagnosis. But if I were to go back and look at all of the medications I have taken and stopped, tried and weren’t found to be effective since my formal diagnosis in 1977, I could easily think that I, too, had failed at those meds. But I didn’t! If anything, the drugs failed me…but either way, it isn’t worth the time and energy to worry about.  I truly believe that how we look at these situations is key to our emotional resiliency and believing that we have somehow failed our meds is not even possible! Please, take a moment to breathe, count yourself lucky that you were diagnosed in a time when medical technology is so incredibly vast and diverse and medications (no matter your opinions about big pharma) are numerous and keep the faith! It takes learning to turn the narrative from owning what isn’t yours (You didn’t give yourself Crohn’s; You aren’t your disease; You aren’t unlovable because of the disease; You will never accomplish what you want to accomplish because of having Crohn’s…etc.) Okay, I’ll add a caveat to that last one…you might need to make your life goals a little more realistic for living with Crohn’s but you don’t have to abandon all of your professional dreams and aspirations and curl up in a ball on your sofa watching questionably accurate medical television shows! (And don’t get me started on those or we will be here all day.) There are so many of us out there who have been living, surviving and thriving  with Crohn’s Disease for probably longer than you have been alive and this can be you, too, in a few more decades. But, in the meantime, Please, as I suggest to people all of the time, treat yourself as though you were supporting your best friend going through this exact scenario…you would never say to your best friend the things you say to yourself! So, become your own best friend!

Community Voices

Afraid to get better?

Does anyone ever get the sense that they’re afraid to get better or recover? It’s almost like I got so used to being depressed or anxious that I don’t know how it feels to be any different. Or I’ve been in so much pain lately and been having multiple seizures that I couldn’t imagine not being in pain. It probably doesn’t make sense but that’s how I feel! I’ve been experiencing a lot of pain lately and I’m getting 3 MRIs done next week and ofc I can’t wait for the doctors to tell me what I need for treatment but at the same time I’m scared to even find out what is going on. #ChronicIllness #ChronicPain #Depression #Unknown illness #Epilepsy

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Alison Chan

'Grey's Anatomy' Consent Episode Depicts Rape Kit for First Time

Update: On Dec. 2, researchers published the results of a study that suggest the March “Grey’s Anatomy” episode “Silent All These Years,” featuring a powerful rape kit scene, significantly increased online engagement with sexual assault prevention resources. The study looked at Twitter and Google search trends two weeks before the episode aired compared to the week after the episode aired. Researchers found online trends mentioning the nonprofit RAINN or “sexual assault hotline” increased significantly after the “Grey’s” episode aired. In addition, the National Sexual Assault Hotline saw a 43% increase in calls in the 48 hours after the episode aired. On Thursday, “Grey’s Anatomy” premiered its latest episode, “Silent All These Years.” Inspired by the current conversation on sexual violence and Christine Blasey Ford’s testimony during Brett Kavanaugh’s confirmation hearings in 2018, the hit medical TV show put rape survivors and consent front and center.The story follows Abby (Khalilah Joi), who arrives at the hospital after being sexually assaulted outside of a bar. When she arrives at the hospital, resident doctor Teddy (Kim Raver) must administer a rape kit, which includes taking photos, swabs and collecting other samples from the survivor.Initially, the extensive details of the rape kit were met with pushback from ABC’s Standards and Practices department, according to the episode’s writer Elisabeth Finch and “Grey’s” showrunner Krista Vernoff. After a rebuttal from Shonda Rhimes, ABC changed its stance. Vernoff explained in a Hollywood Reporter interview: They give these standard notes: ‘don’t be too gory’; ‘don’t be too explicit in your language’; ‘no side boob.’ But the ones we got on this script included, ‘Please don’t show any fluid on the Q-tips’ and ‘Please don’t show any body fluids under the blue lights.’ Shonda wrote back a pretty passionate response of the myriad ways that networks are willing to show actual violence but that what we were doing here was the medical process that happens in the wake of violence and they were trying to tell us we couldn’t show it. She said, ‘Respectfully, I decline these notes.’ Ultimately, ABC understood that she was right. According to The Hollywood Reporter, the episode is one of the most comprehensive depictions of what it’s like to get a rape kit ever shown on TV. Following legal protocol, Teddy gets Abby’s affirmative consent before each step in the process, asking “Are you ready?” As Abby is wheeled off to surgery to repair a tear in her diaphragm, the result of her assault, women of Grey Sloan Memorial Hospital line the walls of the hallway in a silent salute to Abby and her experience.Finch said she titled the episode after a Tori Amos song that reminded her of a friend’s experience with sexual violence.“I named this episode ‘Silent All These Years’ bc when my friend was raped in college I didn’t know how to help,” Finch said. “But days before I’d gone to a @toriamos concert and took a @RAINN bumper sticker they were handing out. Thank you RAINN and Ms. Amos for helping my friend.” I named this episode “Silent All These Years” bc when my friend was raped in college I didn’t know how to help. But days before I’d gone to a @toriamos concert and took a @RAINN bumper sticker they were handing out. Thank you RAINN and Ms.Amos for helping my friend. #GreysAnatomy https://t.co/aolkZKbPm6— Elisabeth R. Finch (@erfinchie) March 29, 2019 From there, Finch reflected on her experience watching Blasey Ford testify about her alleged assault. “I felt that the most damaging thing that happened in all that is that young women and men everywhere were told that consent was irrelevant,” Finch told The Hollywood Reporter. She then wrote the episode and its ground-breaking rape kit scene.Finch also revealed that the hallway scene was inspired by what she had seen doctors do when an organ donor is wheeled through the hospitals — the doctors line the hallways in their honor. She wanted to do something similar in this episode to honor Abby’s experience and by extension, all sexual assault survivors. Vernoff said the female staff members of the “Grey’s Anatomy” production team and production company Shondaland wanted to be involved.“That hallway contains nearly the entire female writing staff [of “Grey’s”]. It contains exec producers on the show, exec producers in Shondaland, most of our female crewmembers,” Vernoff said. “That entire hallway is Shondaland women and that is because they wanted to do it. So many women came up to us … and asked if they could be in that scene.” The episode wove the theme of sexual assault and its many impacts throughout the rest of the episode as well. “Grey’s” doctor Jo Wilson (Camilla Luddington) learns her mother abandoned her because she was raped. Jo had an abortion while in an abusive relationship. Doctor Ben Warren (Jason Winston George) teaches his stepson about consent. Creators also made it clear that people of all genders are assaulted.According to Vernoff and Finch, the goal was to illustrate the impact of trauma on survivors, their loved ones and the importance of consent in relationships.“We have to do something about consent and try to do our part to explain what consent is and how impactful rape is and how it can damage people for years, decades and generations,” Vernoff said. “I hope viewers walk away with a greater understanding of what consent means.”If you or a loved one is affected by sexual abuse or assault and need help, call the National Sexual Assault Telephone Hotline at 1-800-656-4673 to be connected with a trained staff member from a sexual assault service provider in your area.

Community Voices

Is it okay if my wife doesn’t understand ?

I am going through a very hard time right now. Struggling with accepting life feeling like it’s hard to find a reason to continue to live. Feeling like I am such a burden on everyone and I have no purpose. I try to let me wife know that all I need is kindness from her but she gets frustrated and annoyed and it makes it worse. Is this normal is this okay ? How do I help her understand because she is honestly the only reason why I’m holding on and if I lose that feeling of her love because of me and how I am i don’t think I can continue. #MightyQuestions #help

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Community Voices

How has creativity helped you? #CheckInWithMe

<p>How has creativity helped you? <a class="tm-topic-link mighty-topic" title="#CheckInWithMe: Give and get support here." href="/topic/checkinwithme/" data-id="5b8805a6f1484800aed7723f" data-name="#CheckInWithMe: Give and get support here." aria-label="hashtag #CheckInWithMe: Give and get support here.">#CheckInWithMe</a> </p>
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How has creativity helped you? #CheckInWithMe

<p>How has creativity helped you? <a class="tm-topic-link mighty-topic" title="#CheckInWithMe: Give and get support here." href="/topic/checkinwithme/" data-id="5b8805a6f1484800aed7723f" data-name="#CheckInWithMe: Give and get support here." aria-label="hashtag #CheckInWithMe: Give and get support here.">#CheckInWithMe</a> </p>
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Jeanne Dagna

Accepting My Early Retirement Due to Chronic Illness

When you have lived your entire adult life with a serious, chronic illness, you learn to look at life differently than most other people. Ask the average person about their retirement plans and they will gladly tell you they would retire tomorrow if they could. So, when you tell someone you are retired and clearly not of retirement age, they automatically assume a response tinged with envy or jealousy that you were able to somehow achieve this amazing accomplishment. What they often don’t understand is that, for those of us with serious, chronic illness, our “retirements” were not necessarily a welcomed event in our lives, nor did they come with the ability to choose our professional longevity or trajectory. Don’t get me wrong — I am not complaining, but illnesses such as ours take away so much of that illusion of control. So many of us worked so hard to keep our jobs and stay professionally viable that it comes as a stunning sense of shock and personal disappointment when we realize we just can’t fight fate any longer. I retired (early) at the age of 55, after working in my career for 32 years. Make no mistake — it was the right decision, given all of the ongoing medical issues I’ve had with my Crohn’s disease, peripheral neuropathy, Still’s disease and other ongoing autoimmune issues that my body battles every day and has done so for over four decades. I was diagnosed with Crohn’s at the age of 18, so I know nothing different than living with Crohn’s as an adult. I fought to go to college, complete my degree, earn my master’s degree, then my doctorate and work in my professional field, all while balancing the disease processes and all it entailed. I worked hard not to be seen as “that” employee. You all know the one with Crohn’s disease, the one who takes more than the average number of sick days every year or seems to be in the bathroom so much more than anyone else. I balanced hiding in my job so that I didn’t stand out for my health issues, but somehow also standing out for my skills, abilities and talents. In doing so, I readily assumed the “I’m fine” mindset, even when I was obviously not well. I learned to downplay and under-react to my disease and what my body and health presented, which oftentimes left me sicker than necessary by the time I sought out support from my doctors. I was the person who got so used to feeling terrible that it eventually became feeling “normal” for me, and I’d forget that I could even possibly feel better! So, after seven major surgeries in 16 years, I finally had to choose whether to return to work after an especially grueling surgery and challenging recovery, and after lengthy discussions with all my doctors (and I mean all: GP, rheumatologist, GI, hepatologist and oncologist) I made the decision that it was time to take care of me and my health. But, it was still the hardest decision of my life. For me, it meant I had to allow myself to admit it was OK and retiring wasn’t “giving in to the disease,” nor was it the end of my ability to be a productive and vital person. I learned to travel without feeling guilty. When someone asks me what I do for living and I say, “I am retired,” it almost always brings raised eyebrows and a moment of awkwardness. With invisible illnesses, our outward, physical presentations rarely match the severity of our ongoing, internal health issues. I still find myself feeling the need to add I retired early due to my medical issues, as though I owe them a justification. Retiring for someone who is healthy and chooses their path in life is a celebratory experience. For those of us who have it thrust upon us without the proper time to acclimate to all it implies, it can trigger the sense that, “The disease has finally won.” I had survived 32 years in a highly stressful and wonderful professional field and had earned the right to sit home and take care of myself, both physically and emotionally. But it took time for me to find ways to remain relevant and productive in my own life and in the community around me. I had to stop feeling strangely guilty when I told people I was retired and to learn to wear my retirement as the badge of accomplishment it actually was. I accomplished much in my profession as well as survived with multiple chronic diseases.

Jeanne Dagna

Accepting My Early Retirement Due to Chronic Illness

When you have lived your entire adult life with a serious, chronic illness, you learn to look at life differently than most other people. Ask the average person about their retirement plans and they will gladly tell you they would retire tomorrow if they could. So, when you tell someone you are retired and clearly not of retirement age, they automatically assume a response tinged with envy or jealousy that you were able to somehow achieve this amazing accomplishment. What they often don’t understand is that, for those of us with serious, chronic illness, our “retirements” were not necessarily a welcomed event in our lives, nor did they come with the ability to choose our professional longevity or trajectory. Don’t get me wrong — I am not complaining, but illnesses such as ours take away so much of that illusion of control. So many of us worked so hard to keep our jobs and stay professionally viable that it comes as a stunning sense of shock and personal disappointment when we realize we just can’t fight fate any longer. I retired (early) at the age of 55, after working in my career for 32 years. Make no mistake — it was the right decision, given all of the ongoing medical issues I’ve had with my Crohn’s disease, peripheral neuropathy, Still’s disease and other ongoing autoimmune issues that my body battles every day and has done so for over four decades. I was diagnosed with Crohn’s at the age of 18, so I know nothing different than living with Crohn’s as an adult. I fought to go to college, complete my degree, earn my master’s degree, then my doctorate and work in my professional field, all while balancing the disease processes and all it entailed. I worked hard not to be seen as “that” employee. You all know the one with Crohn’s disease, the one who takes more than the average number of sick days every year or seems to be in the bathroom so much more than anyone else. I balanced hiding in my job so that I didn’t stand out for my health issues, but somehow also standing out for my skills, abilities and talents. In doing so, I readily assumed the “I’m fine” mindset, even when I was obviously not well. I learned to downplay and under-react to my disease and what my body and health presented, which oftentimes left me sicker than necessary by the time I sought out support from my doctors. I was the person who got so used to feeling terrible that it eventually became feeling “normal” for me, and I’d forget that I could even possibly feel better! So, after seven major surgeries in 16 years, I finally had to choose whether to return to work after an especially grueling surgery and challenging recovery, and after lengthy discussions with all my doctors (and I mean all: GP, rheumatologist, GI, hepatologist and oncologist) I made the decision that it was time to take care of me and my health. But, it was still the hardest decision of my life. For me, it meant I had to allow myself to admit it was OK and retiring wasn’t “giving in to the disease,” nor was it the end of my ability to be a productive and vital person. I learned to travel without feeling guilty. When someone asks me what I do for living and I say, “I am retired,” it almost always brings raised eyebrows and a moment of awkwardness. With invisible illnesses, our outward, physical presentations rarely match the severity of our ongoing, internal health issues. I still find myself feeling the need to add I retired early due to my medical issues, as though I owe them a justification. Retiring for someone who is healthy and chooses their path in life is a celebratory experience. For those of us who have it thrust upon us without the proper time to acclimate to all it implies, it can trigger the sense that, “The disease has finally won.” I had survived 32 years in a highly stressful and wonderful professional field and had earned the right to sit home and take care of myself, both physically and emotionally. But it took time for me to find ways to remain relevant and productive in my own life and in the community around me. I had to stop feeling strangely guilty when I told people I was retired and to learn to wear my retirement as the badge of accomplishment it actually was. I accomplished much in my profession as well as survived with multiple chronic diseases.