Patient Experiences

living with irritable bowel syndrome

Living With Irritable Bowel Syndrome (IBS)

Living with irritable bowel syndrome (IBS) is a constant battle that leaves many feeling frustrated, exhausted, and emotionally drained. There are days when symptoms are so strong, it prevents you from the daily tasks you want, and need to be doing. While it’s completely normal to feel this way, it is important to learn to understand what causes your body to react and how to work with it instead of against it. Preparation is key in the successful management of your symptoms. With proper planning and awareness, you can eliminate the fear and reduce the symptoms that prevent you from being an active participant in your life. What is IBS? IBS is the most common gastrointestinal disorder that affects between 25 and 45 million people in the United States. A chronic and unpredictable condition with intermittent abdominal pain is accompanied by a variety of other symptoms. These symptoms can change in both intensity and frequency over time. Among those who have been diagnosed with the illness, 40% of people have mild IBS, 35% moderate, and 25% severe. IBS symptoms include: Bowel pain Changes in bowel movements: diarrhea, constipation or both Incomplete Bloating and abdominal distention Gas Indigestion Nausea The cause …

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signs of medical gaslighting

Is Your Doctor Gaslighting You?

You’ve noticed symptoms for a few weeks, maybe months or even since childhood. You visited doctor after doctor with no answer. Over time, the symptoms progress and may start to interfere with daily living. So you go to your doctor again, seeking some answers and solutions. But again, you don’t get a diagnosis or are misdiagnosed. Every year, over 12 million adults who seek medical care receive a misdiagnosis. Of these misdiagnoses, about 15% are patients with serious conditions and 28% are life threatening. Unable to provide answers, the doctor tells you “it’s all in your head” or “these symptoms don’t add up, have you considered a psychologist?” You leave feeling more confused, frustrated, even anxious and depressed. You may even start thinking it really is all in your head. Medical gaslighting happens to millions of people every year. What is gaslighting? Gaslighting is a form of psychological manipulation that hangs on creating self-doubt and makes someone question their sanity, perception of reality, or memories. Someone who experiences gaslighting often leaves a conversation or situation feeling confused, anxious and even a little ‘crazy’. Because gaslighting involves an imbalance of power between the abuser and victim, it can happen in personal, …

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women feeling depressed

8 Celebrities Who Struggle With Depression

Celebrities have it all – status, wealth, power, resources, luck – or so we think. From the outside, they don’t appear to struggle with mental or emotional health and seemingly have it all together. But looks can be deceiving. Celebrities have real feelings and mental health issues that interfere with daily living. On the inside, celebrities are just like everyone else.  Until recently, it was taboo for anyone to speak up about personal mental health issues for fear of judgement and ridicule. But the stigma of depression has slowly lifted as celebrities have bravely opened up about their stories and use their platform as a means to advocate for mental health.  The truth is depression doesn’t discriminate. More than 264 million people suffer from depression worldwide, ranking it as the leading cause of disability in the world.  Major depressive disorder is described as experiencing a depressed mood or loss of interest in daily activities, coupled with problems sleeping, change in appetite, poor concentration, altered energy levels, isolation, and feelings of low self-worth for at least two weeks.  While there isn’t a simple cure-all for depression, the healing journey begins when we start to honestly and openly share about our battles …

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two woman holding each other

How to Ask for Help

Everyone needs it, but sometimes the hardest thing to do is to ask for help. Opening yourself up to feeling vulnerable, especially when you are already feeling compromised by your condition, can be challenging. It is important to remember; you do not have to shoulder it alone. Your chronic health condition may force your hand in making some adjustments to your everyday life, not only for you but those around you. Depending on where you are on your health journey, you may need to think about asking your loved ones for a bit more support. It can be hard to admit that your condition is taking away yet another piece of who you used to be, but reaching out for help is necessary for managing your stress and comfort levels. You don’t have to feel ashamed for needing a helping hand (or two!) The National Alliance on Mental Illness reminds us that there is no right or wrong way to ask for help, but if you are looking for some motivation for starting these kinds of conversations, try these tips our members have recommended: Be clear and specific about where you need help or support When you ask for help, …

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Protect your heart

5 Ways to Protect Your Heart

Did you know heart disease is the leading cause of death in the United States? In 2020, 690,882 deaths were attributed to heart disease, a 4.8% increase from 2019, ranking as the largest increase in heart disease deaths since 2012. Heart disease is a broad term that refers to several types of heart conditions, from genetic defects to blood-vessel diseases. The most common types of heart disease are coronary artery disease (CAD), cardiomyopathy, heart arrhythmias, and heart valve disease. While these illnesses can be fatal, they don’t have to be. About 90% of risk for heart disease can be explained by smoking, poor nutrition, lack of physical activity, poor weight management, and leveled biomarkers, such as high blood pressure and blood lipid levels. The most important way to lower your risk and prevent heart disease is to adopt a healthy lifestyle. 1.Know your risk factors Roughly half of all Americans have at least 1 or 3 major risk factors for heart disease: high blood pressure, high cholesterol and smoking. Some risk factors cannot be controlled, like family health history or genetics, but by knowing your risk factors, you can take steps necessary to control the ones you can. 2. Choose …

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caffeine and anxiety

Is Caffeine Causing Your Anxiety?

Most people look forward to their first cup of coffee every morning. In fact, 62% of U.S adults drink coffee regularly. The routine of having that first cup; the strong aroma, taste, and the feeling you get when you take the first sip is a moment of peace, celebration and energy all at once.  But after you’ve finished the first cup, and maybe a second, or third, you may start to feel a little jittery, nervous or even irritable.  Caffeine is the psychoactive compound in coffee that affects how we think and feel, physically and emotionally. It’s the most commonly used stimulant that, when consumed in large doses, elevates heart rate and blood pressure, speeds up breathing, and increases feelings of nervousness and irritability.  This fight-or-flight response, also known as an acute stress response, can make anxiety worse and in some cases may even trigger an anxiety attack. What is anxiety? Anxiety disorders are the most common mental illness in the United States, affecting 18.1% of adults every year. While most people experience anxiety at some point in time, like speaking in front of a crowd, the first day at a new job, or driving, not everyone has an anxiety …

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Chronic Kidney Disease Woman and Cat

Lessons Learned on a Seventeen Year Journey to Diagnosis

Meet Trisha (@DXMS06) Before Trisha Bordelon, a 69-year-old PatientsLikeMe (PLM) user from Springfield, Missouri, officially received any diagnosis, she was guilty of what many of us in her shoes would do – spend hours going down a rabbit hole of internet searches to try and figure out what was going on with her health. She had it in the back of her mind that her symptoms were aligning with Multiple Sclerosis (MS). However, even after seeing multiple doctors, her diagnosis was still unclear, and Trisha became more and more frustrated. One of the first symptoms she remembers was constantly losing her balance and bumping into the walls in her home. While her doctor was blaming this on the steroids she was taking, the symptoms continued even once she stopped taking the medication. It really never occurred to Trisha that something was really wrong with her until she experienced optic neuritis – twice. She was finally referred to a neurologist for scans. Still, she was frustrated she had no answers and was trying to figure out what was going on with her body. From what started with her first symptom in 1989, she experienced a double vision attack when driving to …

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woman with psoriasis

The Surprising Benefits of Summer for Your Psoriasis

7.5 million Americans and 125 million people worldwide are living with psoriasis. Some factors can make the summer months challenging for people with psoriasis, including dry air conditioning, increased sweating, and feeling self-conscious about exposing your skin. However, it is not all bad news – the summer also provides a few surprising ways to improve your skin. Psoriasis is a systemic condition resulting from a malfunction of the immune system, specifically over-active T-cells, a type of white blood cell involved in inflammatory activities. These cells trigger immune responses that cause increased blood flow and inflammation, resulting in skin growth and build-up. Psoriasis can affect any part of your body but is most common in areas like your elbows, knees, scalp, and torso. There are several types of psoriasis, but during a flare-up, a typical reaction looks like a scaly red rash or, inflamed patch of silvery skin called plaques. The rash is not only unsightly but can be painful, itchy, and uncomfortable. If you think you might have psoriasis check out the CDC’s fact sheet with information about diagnosis and treatment. We want you to get the most out of your summer, regardless of your condition. Here are some ways you …

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Doctor viewing health data

Taking Control of Your Health Data – Why It Matters

While the healthcare industry has attempted a more patient-centric approach over the last 20 years, consumers today demand even more from companies, led in large part by the transformation of traditional retail consumer experiences, such as Amazon and Uber. As a result, better patient outcomes are starting to become expected rather than just wished or hoped for. But while attempting a patient-centered approach, patient centricity has become an overused industry catchphrase that belies the healthcare industry’s failure to prioritize easier access to patient data to improve patient engagement and drive better outcomes. Patient empowerment lies right at the heart of the patient-centric movement where consumers are starting to take back control of their health data and, with it, a far more active role in their healthcare decision-making. “We are entering an era of ‘patient-centered medicine in which patients and their care partners participate actively in decision-making and priority-setting about all aspects of health care,” said Nina Hunter, the FDA’s former Deputy Director for Medical Programs. “Americans are becoming increasingly active consumers of health care, making choices about their doctors, diagnostics, treatments, and healthcare experiences rather than simply allowing health care providers to make the decisions for them.” The biggest challenge …

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people on a rollercoaster

Theme Park Tips for Physically Disabled People: Thrill on Two Wheels

Roller coasters, water slides, tilt-whirls, and Ferris wheels are all exciting ways to spend your summer afternoon, but when you use a wheelchair, these options might not be accessible to you. This does not mean that you should cancel your next trip to a theme park. In fact, The American Disabilities Act has set an accessibility standard that applies to amusement parks and their rides. Know Before You Go In addition to visiting the park’s website to look for their disability guide, it is also helpful to reach out to the customer service team over the phone. When you speak with them, they can give you a plan to access their park and get the most out of their attractions. You can also ask about discounted prices, complimentary admission for assistants, and fast-track policies for disabled visitors. Mapping Out Your Trip – In More Ways Than One! In most cases visiting a large theme park requires a degree of travel. While top travel priorities for able-bodied people may include brainstorming what outfits to pack or what camera to buy, those living with a chronic illness or using a wheelchair may have some additional challenges in planning a trip. We recently …

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