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What a GI Doctor Wants You to Know About Getting Pregnant With UC

When it comes to family planning and pregnancy, people living with inflammatory bowel disease (IBD) may have a lot of questions and concerns about what’s safe and not safe. How should I deliver? Can I stay on my medication? Does my baby need to be tested? How often should I see my gastroenterologist? Do I need to get my regular colonoscopy? As someone living with ulcerative colitis (UC) and talking about family plans with my husband, I am one of those people who wonders about all of these topics.  I decided to sit down with my own gastroenterologist (GI), Dr. Gauree Konijeti at Scripps Health in San Diego, to ask for her thoughts on IBD, childbirth, family planning and disease management. “Dr. K” is the head of the Scripps IBD program and specializes in both Crohn’s disease and ulcerative colitis, and she’s been treating my UC for several years. I found her answers to be especially helpful. At the end of the day, every person is different, so it’s important to talk to your own GI about what’s best for you. I hope this conversation helps you start yours.  Caitlyn: When it comes to family planning, specifically as it relates to the person who will be giving birth, how do these conversations start in a GI’s office? Dr. Konijeti: We always like to start even before conception happens, asking about what their plans are. Sometimes patients have never even had that discussion, and they may have some preconceived notions about what it would be like to conceive or carry a baby with Crohn’s disease or ulcerative colitis. So it’s nice to introduce the topic early and see where they’re at and what their plan is. While we may not be the ones to address all of that, at least we can sort of inform them about what the options are and how those might affect risks with IBD as well.  The goal before pregnancy is remission, both clinical and objective. Objective really means endoscopic remission, so trying to get the disease as controlled as possible on the inside. That leads to much better outcomes for both the parent and the baby. With the delivery, we have to think about what surgeries they've had in the past. We have to talk about medications, disease behavior — all aspects of their health. Then we can get into postpartum management.  There are also a lot of factors to discuss surrounding conception, even the route of conception, whether "natural" or IVF and so on. Caitlyn: That’s a good point about talking about medications. I’ve heard that maybe some medications aren’t safe for breastfeeding, and I know some people have concerns about drugs used to manage inflammation. What can you share about medication safety and having a baby?  Dr. Konijeti: For the most part, most of the medications we use for IBD are considered safe during pregnancy and nursing. Anti-inflammatory drugs are fine to continue during pregnancy and nursing, but you might need to add some extra supplements.  Be sure to speak with your doctor before starting or stopping any medication. Treatment plans just depends on the patient, with the whole goal being to keep the mother’s IBD under control. It has to be individualized for that patient, and we just make sure they understand any risks associated with medications. Caitlyn: It sounds like as long as your IBD is managed well going into the pregnancy, it’s more or less safe to have a baby. But what if you do get pregnant during a flare? What would you do in that situation?  Dr. Konijeti: We’d really manage the flare much like we would if they weren’t pregnant. We’d evaluate potential triggers and assess how bad it is regarding symptoms and labs. If it’s more on the moderate-to-severe end, they might need a sigmoidoscopy to see what’s going on inside. That would usually be coordinated with their OB, too, just to make sure everyone remains safe during the pregnancy. Then we figure out how to manage it; sometimes it can mean a course of steroids to get it under control, or maybe the therapy they were on isn't working anymore, and they need to switch. In that case, it's OK to start new medications during pregnancy. We wouldn’t necessarily want to start a medication that could take a few months to work, when you don't have that kind of time during pregnancy.  Caitlyn: You mentioned that they might have to get a sigmoidoscopy. Are those safe to do during pregnancy? If I had my regular checkup scheduled, do you still perform those, or do you wait until the baby is born?  Dr. Konijeti: Usually we avoid doing full colonoscopies on patients during pregnancy. If it's for screening purposes, then we would defer that until after the baby is born, when they’re in a good place postpartum. I want to give women six months to adjust to that new life and the busyness of their schedule. A time that we would do procedures during pregnancy is when you’re going to change management; that's a therapeutic decision, such as during a flare.  It's also important to remember that flares look different for everyone. Some patients might have bleeding and diarrhea like in ulcerative colitis, but for patients with Crohn’s and something like a stricture, it can present as a bowel obstruction. While we do try to avoid x-ray-based imaging like CT scans or MRIs on pregnant women, we can do an x-ray if they’re in the hospital, then go from there. I have had women who have had those types of issues and have needed surgery during pregnancy, and they’ve done fine. Caitlyn: That’s really good to know. Can a pregnancy itself cause a flare? Dr. Konijeti: Most women who are in remission going into pregnancy remain in remission during pregnancy. If they’re not in remission, then they do have a higher chance of flaring. Probably one third of those women may continue to have the same amount of disease activity, then another third may actually feel better during pregnancy. It’s hard to predict who might flare, and there are a lot of factors. Sometimes women stop their medication because they're pregnant, and that may cause a flare. Or the stress may be a factor. My best advice is to work with your doctor to get your IBD under control, then keep it under control the best you can during pregnancy. Pregnancy can actually have a protective effect for a lot of women with respect to inflammation. Many women report to me that they feel better than they ever have from a colitis perspective, and they wish they could be “perma pregnant,” sort of! Caitlyn: I wouldn’t expect that about the inflammation, but that actually makes sense. I’ve also wondered about C sections versus vaginal delivery. Can you speak to the safety of one over the other in terms of women with IBD? Dr. Konijeti: So we actually encourage vaginal delivery, unless there’s another reason the mother shouldn’t deliver that way. From a safety standpoint, we haven't seen a higher rate of complications for women delivering vaginally versus C sections. Specifically with ulcerative colitis, I suppose if the patient has had prior surgery or is in a severe flare, those may be reasons to consider a C section. However, from an overall IBD standpoint, the only major contraindication to a vaginal delivery is having active perianal disease in the setting of Crohn’s, which affects the anal canal. But otherwise I don't see any reason why they’d have to get a section. If the baby is breech, or if the woman is having twins, then maybe that might make a C section safer, but that would be true regardless of IBD. Also, for those living with a j pouch, we do see an increase in bowel movement frequency during those pregnancies. However, they do not have to have a C section; they can also have a vaginal delivery. I would just encourage them to talk to their care team, especially their gynocologist, about their specific situation and see what’s best for them and the baby. I think it's very reasonable to try doing vaginal first in most situations.  Caitlyn: This is all really helpful information! Obviously women who are pregnant have regular appointments with their OB/GYN to check on the baby. How often should those living with IBD also check in with their GI? Dr. Konijeti: If a woman is thinking about having a baby, let your GI know! It’s about getting IBD under control but also making sure they're on adequate supplements, navigating medications, improving nutrition and assessing for any vitamin deficiencies before conception. As a rule of thumb, I typically like to see patients every trimester, especially the first two and maybe the third. We can see how things are going, talk about fetal growth, monitor labs, change medication if needed and talk about nursing and delivery too.  Caitlyn: That all makes sense. Are there any tests you recommend for the baby after it’s born? I know there isn’t much data showing that IBD is genetic, but maybe that’s changing? Dr. Konijeti: A routine assessment is fine. We don't recommend any additional testing on the baby. We do recommend avoiding live vaccines for the first year. Then after that six months, it’s up to the mom and their pediatrician about if they want to do a live vaccine before one year. The ones you normally get around one year are fine to proceed with. And of course, bring in photos after they’re born! We love when patients share their good news with us.


How Frida Kahlo Made Chronic Pain and Disability Visible Through Art

"I paint self-portraits because I am so often alone, because I am the person I know best.” — Frida Kahlo At the Frida Kahlo: Timeless exhibit that closed recently at College of DuPage's McAninch Arts Center in Glen Ellyn, Illinois, what gripped me as much as her artwork, the 26 paintings on display, was how profoundly her life and art were shaped by disability. I knew from the biopic with Salma Hayek that she led a life of physical pain, but had no idea she was bedbound so often and so long that she created a lot of her great art there. They even placed a replica of her bed right in the exhibit! At age 6, Kahlo contracted polio that left one leg shorter than the other. At 18, she survived a bus crash that killed several passengers. Kahlo was pierced by a metal handrail that fractured her pelvis and punctured her abdomen and uterus. Her spine was broken in three places, her right leg in 11, her collarbone was broken and her shoulder dislocated. That fateful moment dealt her a lifetime of agony, isolation, and miscarriages, but also tempered her artistic vision and strengthened her resolve to realize it no matter what. At times she saw herself and others in an almost disembodied way. She created surrealist paintings that looked like medical charts of her miscarriages, vehicular accidents, and the metal rods that propped up her back and caused chronic pain. She turned that same almost clinical eye on her portrait subjects and on the way women are treated. One of the paintings shows the brutality a woman from the headlines had suffered at the hands of a murdering man, and Kahlo pulled no punches on the details, making sure viewers got to see how many women are treated. But on the other hand, her eye could capture the lace as fine as dewdrops on the sleeve of an otherwise poor and plain young girl whom she painted, signaling the beauty she saw inside of her young friend. The exhibit highlighted the disability theme throughout the exhibit, and amplified the message by mounting a side gallery of works by Tres Fridas, a collective of artists Reveca Torres, Mariam Paré, and Tara Ahern. Tres Fridas (the name is a nod to Kahlo's painting, Dos Fridas) stage disability-related recreations of famous paintings. The nameplates of their works show the original artworks to compare with, as well as explain issues that people with disabilities are dealing with today. Kudos to the McAninch Center for taking this opportunity to underline important issues that the general public gets little exposure to, and highlighting disabled artists. Kahlo embraced her own disability as an intrinsic part of her whole self. She wore support braces around her torso, three of which were re-created for the exhibit. One was of burnished leather that resembled a hunting vest or leather armor. Another was molded plaster, decorated with exotic painted flowers and designs. Kahlo also had a leg amputated later in life and decorated her prosthetic. Another way that disability was manifest in her art was in her subjects, especially herself. As a young woman (she died at 47), her energies and mind engaged with the wider world, yet for much of her life, her body would not let her. She and her famous and influential husband, the painter and muralist Diego Rivera, reveled in the company of artists and thinkers in Mexico and worldwide. One item in the exhibit is a short film showing her and Rivera with the historic revolutionary Leon Trotsky after he came to Mexico in exile from Russia. (Soviet Premier Joseph Stalin would send an assassin to kill him shortly afterward.) All this, and still Kahlo led much of her life in her bedroom, alone. And yet, even forced to lie on her back, she created art. To create requires willpower even for someone able-bodied. That she continued to do so through pain and depression is a testament to her power as a person and artist. As I deal with similar issues, she amazes me. Of course, Frida Kahlo is not only a disability artist. She was also a painter, provocateur, fashionista, and proud Mexicana (in the Mexican Revolution of 1910, Mexico threw off the yoke of dictatorship, and the society of Kahlo's day embraced and celebrated its native culture and history). All of these things made up Frida Kahlo as a person and as a life, and she incorporated it all into her art and expression. Even her disability and isolation were not overlooked or kept hidden: they were turned into a source of power that made her work unique, that is, uniquely Frida Kahlo. Until recently, disability and depression were forbidden subjects. Now think about the taboos back in Kahlo's time! Things like these seem like common sense, and yet we (me) sometimes have to learn basic truths like this, and it can take a great artist and museum to help us understand. Viva Frida Kahlo!

Frida Kahlo, The Broken Column.


LEMS Advocates: Never Accept ‘I don’t know’ When Looking for Answers

Navigating a rare disease diagnosis can be challenging and is often filled with many doctors appointments, trial and error with different treatments and misdiagnosis. One condition, Lambert-Eaton Myasthenic Syndrome (LEMS), is known for being difficult to diagnose, as it can mimic other health conditions. LEMS is a neuromuscular condition that primarily affects the muscles in the arms and legs, causing weakness that makes walking difficult. People diagnosed with LEMS typically also have small cell lung cancer, which is why receiving the correct diagnosis early is so important.  To better understand the misdiagnosis journey faced by people living with LEMS, The Mighty reached out to three LEMS advocates about their experience. Meet Ashley, a nurse who has lived with LEMS for five years: Ashley was 25 when she first experienced symptoms, beginning with chronic acid reflux. A GI doctor diagnosed it as acute stress and recommended yoga and deep breathing. Not surprisingly, that didn’t help: “After that, I started noticing more weird symptoms. My pulse shot way up. I was living with a baseline pulse of 160. And at work, it would go in the 200s.” After passing out at work, she met with a cardiologist who diagnosed postural orthostatic tachycardia syndrome (POTS), a neurological condition that affects blood flow. That just didn’t seem right to Ashley. She got a neurology referral, and was lucky enough to be matched with one who had some experience with autonomic nervous system disorders. Eventually the truth came out.  Ashley’s diagnosis journey took a full year, and she feels very fortunate. “I know people that have gone 10 years waiting for a diagnosis. So I truly consider myself to be lucky.” Because her employer was understanding, Ashley has kept working. Her colleagues were a different matter. “They were not nice to me at all about it. They ostracized me, they told me that if I was that sick, I shouldn't be a nurse. They didn't think it was fair that I got special treatment.” COVID-19 complicated her work life, too. Because of her health, Ashley doesn’t care for COVID patients, which struck her colleagues as unfair. “That was honestly one of the hardest things for me to deal with. It was heartbreaking.” With treatment, though, Ashley’s LEMS symptoms have improved.. One of her most important treatments is regular IV therapy and she’s careful to stay on top of it. She learned how important it was during a medication shortage two summers ago: “I went without treatment for three months and that quickly humbled me because I realized how much I needed it. I actually am at the point where I look forward to getting it because I know, once I get it, I feel so much better.” She advises patients to not give up when an initial diagnosis doesn’t ring true.  “Make sure you advocate for yourself, make it known how much your life has changed, and don't give up until you get a diagnosis. Find a doctor who’s like you – someone who just won’t give up. Sometimes it feels impossible, but it's not. There will always be someone down the road to help you or to give you an answer.” Meet Emily, a nurse and 20-year LEMS advocate: Emily’s first sign of something strange came in November 2000, when she was 35 years old. “I was normal when I went to bed, but I woke up with severe back pain. I had what I described as heaviness in my legs. I first thought I had a back injury. Over the course of eight months, I progressed to almost complete muscle loss and atrophy of my lower and upper extremities.” Also, a nurse, Emily simply couldn’t keep up with her work duties. “I went from seeing 10 patients a day to only being able to see two, I would get extremely fatigued, I would not walk places because I couldn't make it. So, it was a pretty quick progression.” Emily was her own worst critic; it was her family and co-workers who pushed for an answer. “I was like, ‘Oh, just tough it out,’ but the pain just got too bad. My family noticed though. They said, ‘Look, ou need to go see somebody.’” Her primary care doctor prescribed physical therapy (PT), assuming she had a back injury. Not only did PT not help, her symptoms actually became worse. “My family ended up taking me to the ER. The doctor recognized that I had absent reflexes, and the way that I walked was not normal. And so, he was actually worried that I might have had multiple sclerosis.” MS was the first incorrect diagnosis. She also went through diagnoses of myasthenia gravis and chronic inflammatory demyelinating polyneuropathy (CIDP) and even conversion disorder, a psychological condition in which a person has unexplainable blindness, paralysis or other nervous system symptoms.  “Basically, they said I was ‘making it up.’” It took eight months to find the right answer. Finally, a neuromuscular specialist diagnosed her with LEMS. “I was relieved but scared. [I had so many questions:] Am I going to die? Can I be a mom? Will I ever get better?” Unlike Ashley, infusion therapy made Emily sick, giving her terrible headaches and nausea. Medications that work directly with acetylcholine and calcium, two important players involved in LEMS, are now the cornerstones of Emily’s treatment.  Her advice for people with newly diagnosed LEMS? “Don't give up. Demand a higher level of care. Don't accept ‘I don't know’ as an answer, because that's not okay.” Meet Julianna, a 30-year LEMS veteran:  Juliana has no problem describing her life with LEMS: “It's like a roller coaster ride that you can't get off. That’s my best description – very high highs and very low lows. I have been on my deathbed, in hospice twice already- those are the lowest lows. And my high highs are when I make a comeback, like I'm doing right now. Just feeling my strength again, trying to focus on making my muscles stronger.” Juliana was on a Colorado hiking trip in 1992 when something started to feel different. . “I was just having a really rough time with my hike down some of the rocks, and took a couple of falls. I thought I didn’t give myself enough time to adjust to the altitude. When I got back to work, I  just walked down the hallway and fell. I thought maybe my heel caught in the carpet.” When she fell a second time, a co-worker stepped in. “She was married to a doctor, and she said ‘I'm going to get you in and seen by a doctor and have you checked out because there is just something not right.’” Juliana was also prescribed physical therapy. “I started having such a hard time getting out of the whirlpool bath. My body went limp and they could barely get me out of there. My next step was to see a neurologist, and this is where I got really fortunate because this guy really dug for me.” She had the familiar first misses: MS and myasthenia gravis. When those tests came back negative, Juliana got a referral to a muscular dystrophy clinic, where the truth was revealed. An electromyogram, which measures a muscle’s response to electrical simulation, painted a clear picture of LEMS. The diagnosis came eight months after her first fall. “I’m one of the longest [diagnosed] living patients with LEMS. It’s been 30 years now.” Juliana gives huge credit to a multidisciplinary neurology team at the University of Colorado, which manages her care. Getting the right team together isn’t easy, but it’s a must, she said. “You want someone who’s knowledgeable and who’s going to dig, dig into your case. If you've got a good advocate on your side, then you've got it made. Those people are really hard to find. But you need a team.” As a senior member of the LEMS community, Juliana has shared her experience and wisdom with hundreds of other LEMS patients. “I have a Facebook group that's international with over 1,300 people in it –we've been able to bring people all over the world together.” Juliana wants people to know that while a LEMS diagnosis is a tough turn in life, it’s not the end. “This condition is treatable [and finding a treatment that works for you can be] life-altering.” Like Emily and Ashely, Juliana says being tough and persistent is the key to getting a diagnosis and being your own proactive health manager. “You need to hang in there and keep being persistent. Be willing to do some educating with your healthcare provider, because a lot of times you're the first person that they've ever seen with LEMS.” Looking for LEMS resources? Check out LEMSaware to find a downloadable health care provider discussion guide, symptom tracker and more! Learn More


8 Wearable Stim Toys for Autistic and Neurodivergent People

Stimming is a necessity in the lives of many neurodiverse people — including autistic people, people with ADHD and those with anxiety. Everybody stims in some way or another. I love having easily accessible wearable stim toys and things for my sensory needs with me at all times. There have been many times when I start to feel overwhelmed, need to release excess energy, or just feel the need to stim, and digging around in my bag for a stim toy is just too much for me. Wearing a stim toy means it can be fidgeted with throughout the day, it can be discreet in workplaces and school, and it can help with accessibility during meltdowns. Plus they look super cute! Here are some ideas for wearable stim objects or toys: 1. Mindfulness Fidget Bracelet Old Soul Project Bracelets are perfect for fidgeting, mindfulness, and help regulate the stress from overstimulation and under-stimulation that people with ADHD and/or on the autism spectrum often experience. The bracelet comes with ideas for exercises and ways to stim with the bracelet. Their site is also full of how-tos and great information. 2. Push Pop Fidget Bracelet I love those push pop fidget toys but I never have them handy when I need them. I love the idea of having a push pop bracelet on my wrist that's easily accessible. You can find these in all sorts of colors and styles on Amazon. 3. Fidget Necklace Have you ever worn a necklace and played with it? Well, some necklaces are specifically designed for stimming. Check out Stimtastic's stim jewelry collection. Their Concentric Circles Necklace has three different beads that spin independently of each other you can roll or spin just one or all three together. 4. Fidget Key Rings Having stim toys that you can easily access on your keys is perfect for autistic and neurodivergent people to use while out and about. There are push pops, pea poppers, and gear shifters that you can put on your key rings. Plus keyrings can be pretty fun to fidget with. 5. Chewable Jewelry Many autistic and other neurodiverse people stim through chewing on things. This can be chewing on their fingernails, clothes, etc. Having a chew necklace can be a great way to stim and stop destroying our nails and favorite t-shirts. One of my favorite companies is Chewelry. You can usually find their products on Amazon. Stimtastic also has some great chew necklaces. Most companies have different textures and hardness; you might want to try a couple of different variations out and decide what you like. 6. Spinner Rings Spinner rings are really popular for anxiety, but are great for fidgeting and stimming for other reasons as well, such as ADHD and autism. I wear a lot of rings and I often find myself fidgeting with them. You can find spinner rings on Amazon and beautiful handmade spinner rings on Etsy like this one from BlackFeatherDesignUK. 7. Hair Ties If you have long hair, you probably always have a hair tie with you. Hair ties can be a wearable stim. Phone cord hair ties can be good for this because of the texture, and they're fun to fidget with. However, everyone has their likes and dislikes with texture. Try them out to find out what feels best to you. 8. Bonus — Earplugs While earplugs are not necessarily stim toys, they are a great thing to always have with you for sensory issues. You can attach earplugs to a key chain or (as I've seen some people on TikTok creatively do with their loop earplugs),  make them into earrings.

Wearable stim toys for people with autism, ADHD, and anxiety.


What I Love About Season 2 of ‘Love on the Spectrum' as an Autistic Adult

Imagine the barriers that would be broken down for those with autism if dating-reality shows like Love on the Spectrum, which is so wholesome and pure, became the norm in the entertainment world instead of shows like The Bachelor. This was a thought I had when watching the first episode of the second season of Love on the Spectrum, an autism-themed dating reality show that is now available to stream on Netflix. Along with being a fan of Season 1, I was interested to check this season out as someone who is currently searching for love on the spectrum along with my work in the entertainment world as an autism and disability entertainment consultant. Similar to Season 1, Love on the Spectrum looks at the lives of autistic individuals in the dating world. This time around, they are looking into the lives of Ronan, Kassandra, Jayden and Teo, along with familiar Season 1 fan favorites Michael, Mark, Chloe, and an autistic couple, Jimmy and Share. Warning: Spoilers ahead, so if you haven't watched yet, give this article a share on social media and come back later. Overall I was pleased again with the cast's authenticity in their pursuits of dating, romance and love. While many dating shows feel scripted, you can tell this one doesn't. At times there are heartfelt moments, funny one-liners, and at other times a bit of awkwardness sprinkled in. Here are some key highlights for me from the season. Michael – What can I say? Michael reminds me so much of myself growing up on the autism spectrum, searching for love in my 20s, so when I heard he'd be back for another season, I was genuinely excited. I applaud him for continuing to put himself out there, most specifically in doing speed dating, which can be an intimidating experience for anyone. When he found a match, I was rooting that it could be "the one," but alas, he preferred to just be friends with her by the end of the season. I admired him for realizing what he wants in a relationship and not settling. I know some of my mentees worry about breaking up with a partner because of doubts about finding someone else. Michael has become a role model for countless. Continuing to highlight the LGBTQ+ autistic community – Autistics from the LGBTQ+ community are often underrepresented, so I was happy to see Teo and Mark, both bisexual, being featured here. Online dating – Although only mentioned briefly, I have seen this as a platform for some of my autistic mentees to succeed. The advantages of thinking about what you want to say before meeting face-to-face have been helpful for some. Like Season 1, I'd recommend Season 2 without reservations. You can watch “Love on the Spectrum” on Netflix here.

Michael from Love on the Spectrum Season 2.


My Experience with Bipolar Depression vs. MDD

I used to feel like there was a revolving door in my emotional guesthouse. A joyless, listless version of me wandered in like a vagrant, stayed a while and left. There was enough time to tidy up my mess and have some peace before a charming, risk-taking bad boy version burst through the door. These bipolar guests took control, ran the show, and they all had bad manners. Without psychiatric and therapeutic support to manage my extreme highs and lows, every depressive episode cycled to a hypomanic episode. Sometimes there were periods of a balanced mood post-depression, but hypomania always arrived next.  Now that I have become educated about bipolar disorder cycles, I recognize some important distinctions between bipolar depression and unipolar depression, also known as major depressive disorder. Bipolar disorder is easily confused with depression because it often includes depressive episodes. However, there are some key differences:  Bipolar disorder tends to recur on a somewhat regular basis. In a typical cycle, a depressive episode will sometimes end abruptly, followed by hypomania, then followed by another depressive episode. They may be weeks to months apart, but the cycle continues. Does it sound exhausting? It is. With depression there is no “up” period. Unipolar depression may feel like a pervasive sense of hopelessness, worthlessness, loss of enjoyment and a decreased ability to manage day-to-day tasks. Depression may slowly creep in, hang around for several days or weeks and have a glacial quality. Bipolar disorder always includes symptoms of mania or hypomania. The shorter-lived cycling between hypomanic or manic episodes and repetitive depressive episodes may be an indication of a bipolar spectrum disorder, not a unipolar depression disorder.  While clinical depression cannot evolve or “turn into” bipolar disorder, a person previously diagnosed with depression may actually have a type of bipolar disorder. If you’re unsure whether your experience is one of unipolar depression or bipolar disorder, please consult a therapist and psychiatrist for a full psychological evaluation. Don’t self-diagnose. Before I received an accurate diagnosis, it seemed I had a string of depressive episodes. It’s possible that some hypomanic cycles were milder and went unnoticed. The early experience of hypomania didn’t usually affect me much, if at all. I might feel cheerful, well-rested after just 4 hours of sleep, focused and on top of the world. After a depressive cycle, this wouldn’t seem like a problem. Hypomania felt kind of awesome at times…nothing like how manic episodes are depicted in movies. In the past, hypomanic episodes would sneak by because I didn’t know what the early signs were. I thought, Hmm…I have been feeling absolutely awful for the past four days. Today I feel better…much better just overnight. This quick turnaround isn’t usually associated with unipolar depression. It felt wonderful until it became too much to handle. My bipolar depressive episodes were more noticeable because they were short-lived, intense and sucked my energy quickly—sometimes in a matter of hours. By contrast, once the first episode of major depressive disorder has occurred, recurrent episodes will usually begin within 5 years of the initial episode. On average, those with a history of MDD will have 5 to 9 separate depressive episodes in their lifetime. Another difference is that antidepressants made my depression cycles worsen, which then made hypomania’s impact worse when the pendulum swung in the opposite direction. When I was prescribed a mood stabilizer instead of antidepressant medication, I experienced a steady return to emotional balance within a couple of months.  Before finding the right medication, and before mindfulness practices and talk therapy, I would sustain a level mood for several weeks. But the balanced mood would escalate to a level of unstable emotional intensity not found in MDD. This time period of gradual, intensifying hypomanic symptoms is called the "bipolar prodrome.” The prodrome period can be weeks to months long, making it harder to recognize.  The most common prodromal symptoms tend to be a sudden elevated mood, overly positive self-talk, decreased need for sleep, increased activity, compulsive spending, hypersexuality, and obsessive, grand ideas. For a while, friends may not notice I’m off balance. I seem confident and purpose-driven. I’m extroverted, charming, quick witted, and I get stuff done. However the prodrome can shift suddenly in a few hours or a few days to unmanageable high-flying moods and poor choices, followed by the depressive shift to a loss of energy, motivation, self-worth, and a flat emotional affect. Unipolar depression is characterized by a slower, pervasive experience of worsened mood without the highs of a manic cycle.  While these two have similar qualities, they’re different enough to have distinct diagnostic criteria in the DSM-5. Unipolar depression and bipolar depression share the same symptoms with three main differences:  Bipolar depression is more episodic than unipolar. Bipolar depression is always on the edge of mania.  Due to the mania risk, bipolar depression treatment differs from unipolar depression treatment.  Here are some steps that will help a mental health provider offer you an informed diagnosis: Make a list of what you’re experiencing, when and for how long. Rate the severity of the symptoms on a scale of 1 to 5, with 1 being the least intense and 5 having the most impact on your functioning. Track this list for at least a month, if possible. Ask your friends, family or someone you trust to tell you what they notice. An external view is important, because both depression and bipolar disorder tend to draw a person inward, away from self-awareness. Note changes to your appetite; quantity and quality of food; sleep; use of substances like cigarettes, alcohol, caffeine and other drugs; and the motivation to do daily tasks before, during and after an episode of depression. There may be important clues that will help your provider offer an accurate diagnosis. When depression subsides, do you return to a balanced mood for a significant amount of time (months or years), or does your mood become gradually euphoric, intense, impulsive and unmanageable for you and those around you? Consider asking a psychiatrist to give you an assessment for both major depressive disorder and bipolar spectrum disorder before a diagnosis and regimen of medication. With medication and interpersonal and social rhythm therapy (ISRT), my depressive and hypomanic episodes become fewer and less intense. When they subside, life becomes more manageable. I am reconnected with myself, others and the environment. I have more patience. I wake up feeling calm and well-rested from at least 7 hours of sleep. I make healthy meals, find time for rest and play and hit the gym after work. I'll be in bed by 11 instead of 2 a.m. and drift off in 5 minutes. I don’t feel like a superhero. I simply feel like me again. It’s not always this way; medication isn’t a magic wand. I still have occasional episodes, however, they’re less intense and don’t last as long. The tools I’ve learned have helped me trust my moods as authentic and less worrisome. My emotional life has improved from drastic and exhausting travel between the north and south poles to living in a balanced, temperate emotional climate near the equator. Whether your diagnosis is unipolar depression or bipolar disorder, finding the best tools will make a big difference in living a healthy, emotionally balanced life. That’s something both of these disorders have in common.


Surviving May Be a Daily Challenge, but It’s Also a Daily Victory

When you're living with a health condition, some days surviving will feel like the only thing you can do. Those days may make you feel disappointed in yourself, especially if you wish you were more productive or able to focus on other aspects of your life, but survival can be one of the most underrated victories in life with a health condition, and it's about time we recognize it. You may have moments when you're fighting for your life, wondering if you can get through life-threatening health complications and make it to the other side. You may think back to times when your survival was at stake and wish you could focus on anything else as you move toward new treatments, surgeries and procedures. If you've faced a life-or-death situation in your medical life, whether or not it's left you with a loss of function or a long list of medical complications, the fact you survived is worthy of celebration. Your body summoned all of its strength to get you to this point, so even if you wish it could do more after everything you've been through, you are conquering life. You may have days when you feel disconnected from your body and mind — when it feels surreal they function the way they do. You may wish you could step out of your body or brain and into one that isn't so complicated, especially if you long for a time before you were disabled or a life you've never had because of your health condition. You may feel like you're dissociating to get through each day, and in moments when you're a bit more grounded, you may feel sad or angry that this body will remain with you for life and you can't experience the physical or mental sensations you believe will fulfill you. At the end of those days when you feel like you're stumbling through life or wishing your health were different, though, remember you survived a hard day — and not every day going forward might be so difficult. You may face times when your mind convinces you the world is better off without you or that you can no longer survive life's trials and tribulations. Your thoughts may have such a hold on you that you genuinely believe life is no longer worth living, and in those moments, living and breathing may physically pain you. You may wonder how you can possibly survive the rest of your life when your mind, body and spirit feel exhausted, and as you fight your own mind, you may also berate yourself for not being more productive. But no matter what, your decision to take life one second at a time until it no longer feels so heavy is one of your biggest successes, whether you recognize it or not. Someday, you may even celebrate your survival and remind yourself how far you've come. If you live with a health condition, surviving may seem like an everyday challenge, but it can also be one of the biggest victories in your medical life. No matter if you're currently surviving physical complications, mental illness or your complicated relationship with your health condition, celebrating making it through your lowest moments can show you just how far you've come.

Back of a woman walking in a flowy summer dress outside


How to Have Uncomfortable Conversations With Your Gastroenterologist

If you live with ulcerative colitis (UC), you have probably had at least one uncomfortable discussion in your GI’s office. A GI doctor, or gastroenterologist, is a doctor who specializes in the health of the digestive system, or the gastrointestinal (GI) tract. To be frank, it can feel scary and embarrassing to talk about bowel movements and blood with an otherwise perfect stranger, especially as a brand-new patient. It actually took me close to six months to finally disclose that I was seeing blood to my pediatrician; when she heard that, she immediately referred me to a gastroenterologist, and I was diagnosed shortly thereafter.  Why do I share that? Because had I shared earlier, I probably could have saved myself some months of pain and gotten on a treatment plan much sooner. I spoke with my own GI, Dr. Gauree Konijeti at Scripps Health, about how to start these types of conversations around UC and its varying symptoms. “Dr. K” is the head of the Scripps IBD program and specializes in both Crohn’s disease and ulcerative colitis. She’s been treating my UC for several years. While I’ve grown to be filter-free when it comes to discussing my symptoms (20 years will do that to a person!), I remember vividly a time before I felt that way. I hope this conversation makes having your own difficult talks a little easier… and remember: There’s nothing to be ashamed of when it comes to managing your UC. Caitlyn: In the beginning, I know so many people are scared to talk about blood and diarrhea and all of that stuff. How do you support a brand-new patient you've never seen who doesn’t want to talk about UC symptoms? How do you create a safe space for them? Dr. Konijeti: I think it's something we talk about all day, every day as gastroenterologists, and maybe sometimes we forget how hard it can be for patients to talk about these types of symptoms. When people have felt anxious to talk about it, I’ve reassured them not to worry and that I know all about UC. I just acknowledge that it can feel uncomfortable to talk about these symptoms with somebody else, and say that I want to know everything — there's nothing you can tell me that I haven't heard before. I want to know all of it, so please don't feel shy or embarrassed. The more I know, the more I can help you. Caitlyn: I know when I was first experiencing symptoms, I was seeing a lot of blood and didn’t tell my pediatrician for six months. When I finally did, I was rushed to a GI. Do you encounter that a lot — patients who are withholding? How do you encourage them to disclose everything, especially if there is blood in the toilet?  Dr. Konijeti: Since UC is something I specialize in, by the time people come to me, they've already had to discuss symptoms on some level. They’ve already gone through testing or imaging of some sort. So I tend to see a lot of patients with established IBD who are actually ready to talk about it. But if I were to see someone without the diagnosis and wanted to guide them, I would ask them if they look at their stool. If they're not looking at their stool, then it's going to be hard to answer a lot of these questions. From a gastroenterologist perspective, I want to know if they’re seeing blood in it. Most often in the setting of UC, we're thinking about bright red blood. I’d also want to know if they’re seeing blood on the toilet paper, on the stool or mixed with the stool. Are you seeing blood by itself? How much is it? How often do you see it? These specifics give us an idea of inflammation severity.  Caitlyn: That makes sense. And when I think of my own experience, I’m 120% comfortable talking about my UC now. But so many people aren’t there yet, and it’s still a very emotional experience at each visit, especially if they’re seeing you or someone else after months of looking for answers. How do you comfort them in your office if they are really having a hard time? Dr. Konijeti: First of all, it's perfectly normal and acceptable to feel that way, so I really try to acknowledge where they are and that this is hard. It’s been a long road, and I’m always glad that we have an answer, but I know that can be hard to face as a patient. Especially when it’s something chronic like UC, it may not be what they were expecting to hear. Many don’t know what to do with that information. Of course we want to get the diagnosis and symptoms under control, but that can happen over a series of visits. I let patients know that if they want to talk about it tomorrow, I can have my nurse call, or they can come back in at another time. Sometimes they need a moment right then and there, and I’ll offer to step out and give them privacy. I think it depends on the patient and how much it's impacting them. It’s also really helpful to have loved ones at these appointments, if possible. They can help ask questions that maybe the patient hasn’t thought of or isn’t ready to ask themselves. I do refer a lot of patients to the Crohn's and Colitis Foundation to let them know they’re not alone and that there's a community out there who walk in your same shoes. There's a lot of good resources because a lot of patients at that point want to just get more information. Caitlyn: That’s so helpful, and I know that the foundation has helped me tremendously with connecting with others and supporting my own journey. It also helps with stripping away the stigma that this “bathroom disease” can carry. It’s much more than that, as we all know, but do those stigmas around bathroom talk or invisible illnesses impact your ability to treat patients? Dr. Konijeti: Well, you know me! I want to know everything from the beginning, and it always amazes me how much time can go by between the onset of symptoms and a diagnosis. For some, it can happen right away, but for others, they’ve maybe been told a bunch of different things, such as irritable bowel syndrome (IBS) or hemorrhoids. So by the time I see them, they already have those other possibilities in their mind. I can see how if someone was talking about milder symptoms how it may go overlooked, especially if they’re younger. My best advice to patients is that if your symptoms are persistent and not improving, seek medical attention, specifically a gastroenterologist.  Caitlyn: That’s good advice to not ignore symptoms and seek specific support from a GI. And as we all know, mental health can be greatly impacted here too. How much does the discussion of mental health come up for you? What role do you see yourself playing there?  Dr. Konijeti: Mental health is really something I think we should be evaluating more, or at least assess and talk to patients about. It’s certainly very common, and it can also affect disease activity, disease behavior and medication compliance. I wish we had more resources for patients. For example, in our own health system, I don't have a pool of psychiatrists and counselors that I can refer patients to, but I have a list of resources in San Diego that I can send them to. I think that's helpful, but it’s also still putting the onus on the patient. In a perfect world, I wish that it was more integrated. Anxiety and depression are so common and expected, especially when you’re going through something so significant. It’s important to build that support network through the foundation, and we need to do a better job of supporting patients. A lot of them also tell me their doctor dismisses the fact that stress impacts their symptoms, and I just acknowledge that stress really can affect symptoms. So then the conversation can turn to, OK, what can we do to manage it? I do tend to send patients to integrative medicine as well; aside from psychiatry, counseling and therapy, other measures like meditation, acupuncture and mind body-work can make a big difference. 


The Power of Aiming for Progress, Not Perfection, in Life With Chronic Illness

If you're living with a health condition, you may constantly hear about the importance of “progress over perfection” — to the point where it may even feel cliché. But if you constantly worry that you're not doing enough in life with your condition, compare yourself against your able-bodied friends, or strive for perfection in every area of your life, noticing and celebrating your progress can help you more fully accept yourself and your capabilities. Life with a health condition can be messy and unpredictable — which can make perfection a tempting but impossible goal.  When your health rapidly changes from your “baseline” to a “hard day” to “feeling your best,” you may want to hold onto those “good days” for as long as you can and try to put the state of your health entirely in your control.  Unfortunately, though, there are so many physiological and mental factors that influence your health that while you can make some lifestyle choices that may improve life with your medical condition, those days when you function at your “peak” may not be sustainable for long stretches of time — and that's OK. Although it may sting to see your able-bodied, neurotypical friends living their lives in a way that's not as much dictated by their physical or mental state as yours might be, striving for that type of “perfection” in your life with a health condition may cause burnout and amplify the effects of your symptoms. Instead of constantly focusing on doing the most you can, acknowledge the pain of not knowing what your health will look like from day to day, and look at your overall trajectory. You may have days when you feel well and accomplish your goals, days when you struggle, and every type of day in between, but if you're making progress in terms of adapting to your symptoms, learning new ways of thinking and accepting yourself as you are, you're succeeding in life. In life with any type of health condition, emphasizing progress over perfection can help you become more in-tune with your strengths and abilities. Maybe you can't seem to muster up the energy to get the dishes done, but you successfully calmed yourself after a panic attack in a way you couldn't just last month. Maybe you've noticed yourself struggling physically, so you made yourself an appointment with a specialist instead of pushing through pain and discomfort.  Maybe you found yourself crying after a rough therapy session, but you know you had an important breakthrough that will ultimately help you. And maybe you're implementing lifestyle changes that don't look like the changes in your friends' lives but that help you better manage your health. If you're making progress in terms of your health or self-acceptance, you're setting yourself up for a more fulfilling life — which can be far more rewarding than trying to force yourself into “perfect” health. Your health isn't static, so holding yourself up to an arbitrary standard of perfection may make you constantly feel like you're never measuring up to the person you aspire to be.  When you focus on the progress you're making and celebrate the small victories in life with your health condition, though, you may feel like you genuinely love where you are in your life — not where you could be.

Dandelion seeds in the sunlight.


A Letter to What I Can't Do Because of My Disabilities

Dear What I Can't Do, I'm at a loss for what to do again. Once again, I find myself in eating disorder treatment feeling like staff don't know how to treat the root cause of my problem – my relationship with my disabled body. Time after time, I hear “don't focus on what your body looks like, but what it can do for you.” But what happens next when I don't like how my body functions either? Society tells me to focus on what I can do vs. what I can't do. But, this is invalidating because everything I can't do is just as much a part of me as my arms and my legs. It's hard to pretend those don't exist when it's very clear that those limbs do exist. What I can't do often feels like this big black cloud in me, always ready to rain on my parade. While there are so many things I can't do due to fatigue and pain from my cerebral palsy and mental health, I've gained perspective others don't have. What I can't do makes me, me. And that's where the words acceptance and forgiveness come in. If I could do everything I wanted to, I'd be a practicing physical therapist and possibly have a family by now. Instead, I'm in and out of mental health treatment year after year. I spend my time focusing on my physical and mental health as my full-time job. I volunteer one morning a week at a hospital. That's what I can do, but that's only happening because of what I can't do. Because of what I can't do – be a physical therapist, I have a completely different life ahead of me than the one I had planned for years. Because of what I can't do, I've spent the last five years living with my parents. I don't feel like I'm “adulting” like other 28-year-olds. Because of what I can't do, I've become an advocate after experiencing injustices faced by poor and disabled people every day. I make sure buildings are accessible and speak up when they aren't. I have written about the lack of adequate low-income housing and how receiving SSI payments forces an individual to live in poverty and be unable to marry in order to keep financial assistance and proper health insurance. Because I can't be a physical therapist – due to both physical and mental health reasons – my income is limited to SSI and I will basically be moving out of my parents' house and into poverty in the coming months. My physical and mental health make many things difficult or impossible such as running, keeping up with friends and family, and having the energy to explore my community and the world around me. I have to accept that this is all part of my life. I can't ignore it, and I don't want others to ignore that either. I am who I am because of – not in spite of – what I can't do. Acceptance is hard, and I know I must work through that before I can work through forgiveness. Forgiveness is difficult because it forces me to let go of some dreams forever. And that's really uncomfortable. In the end, I need acceptance and forgiveness to heal. "Accept yourself, love yourself, and keep moving forward.” –Ray Bennett