I have MS, and I acknowledge this fact. This disease is debilitating, and some days I question how I can power through this at all. But, nothing trumps having to parent during these times. When all I want to do is stay in bed and sleep. Or I lack the motivation even to exist. I still have to get out of bed to take care of my son. He is too young to understand what mommy is experiencing (I dread when we have to have the inevitable conversation).
We are in the terrible twos’ stage, progressing to whatever phrase describes the threes’. Micah is having a lot more tantrums over almost everything now. What he eats, watches, and activity he does. Some days I feel that I cannot satisfy all of his needs and wants. The constant crying and screaming are jarring on the nerves.
I fight the urge to become a yelling parent. I want Micah to be raising a calm environment. But, some days I can feel myself coming apart from the seams.
As if I am one tantrum away from completely losing it. How do I combat this? I’ve read the mommy blogs and books. No one has advice for parenting with MS. Parenting through the moments when you want to give up on yourself, let alone be able to support someone else.
Having a partner is what saves me. I would be nothing without Nick. We try to balance each other. The days I’m down, he takes on more responsibility, and vice versa. Nothing prepared me for what parenting truly is. I would not trade my son for anything in this world. It does not take away how challenging it is to raise him. I try my hardest to be the best parent possible for him.
For every bad day, there are multiple good ones. This is not a rant saying I hate parenting. I love parenting but some days I don’t. There is nothing wrong with saying that! More parents should be honest about the more challenging days. It does not take away from your ability to be an excellent parent. Or how much you love your children. Having MS and parenting is an EXTREMELY hard combination, and there is nothing wrong with admitting that.
Visit Lyfebulb Ambassador Moyna’s blog!
Stacy is defying the odds and defining cancer, read her story on CancerLyfe.
The call you will likely hear resound when illness comes is a battle cry. Fight. Beat. Kill or be killed. I heard this cry when disease came my way and I yelled back; “War.” I fought through. I muscled on. I battled. I steeled against. Put on a brave face. Held tight. Closed my hands into fists and held my breath. I shot, aimed to kill. Warrior, “you are so strong.” I allowed disease and the curveballs of chronic illness to harden me.
As I fought and battled to heal through the wild lands of hospitals and O.R’s, therapy and holistic medicine and what are they calling it now? Ah yes, “self development,” the song of self-love was often sung. I know, I would say. Yes. I would say. I will affirm ten times a day looking at my own eyes in the mirror that I love myself. Words, just words. An emptiness stared back. A sad confusion. I was at war, and I was losing. My body, if not an outright enemy, was certainly not a trusted friend and most of the time a dreaded sea I was doomed to tread water in. Forever. Until I sunk. In my battle with Ulcerative Colitis I tried many many treatments to “beat” the disease ravaging me, but I hadn’t tried love.
This experience of loving my body is new and novel and unsteady. I waver. I catch a glimpse and revert back to shame and disgust in an instant. But I have been bitten. A tender nip of the elusive “self-love.” What finally made the switch go off? I have no concise explanation. More therapy? That likely played a role. Marriage? Yeah, that too. Another period of surgeries and uncertainty? How could that be…
Regardless, through the lens of love I have come to believe that hardening against isn’t the way of disease. The truer call is to love. Gentle. Soften. Open. unclench those iron fists. The way through disease is with, not against. To take the sticky hand of our illness and say, “oops sweetheart, no, go this way instead.”
So, I give in. I lay down my sword. But, I do not give up. I choose to go with, to love the most unlovable, to yield, to shift, to submit. To ease. To slow. I relent. I still have one more planned surgery staring at me. I continue going to doctors and alternative therapies, diet, supplements and meditation. I continue to do the daily work to offer my body whatever I can to heal. But I will no longer fight. Actually, I probably will. This stroke of inspiration that overcame me in the small hours of the night will leave me. I will steel again, hold my breath, push back, I will forget. But then, I will remember. I will come back. Then forget. Forget-remember-forget and remember again. Love’s first bite has been soft, quiet, a gentle suggestion. Yet it whispers that If I feed it, water it, let it blossom and grow, it will devour me whole.
We all get to choose whether illness will soften or harden us. Free will. One final plug for softness with a quote from Marianne Williamson; “We do not get rid of darkness by hitting it with a baseball bat. We only get rid of darkness by turning on the light.”
Yes, go ahead warriors. Turn. On. The. Light.
Visit Cody’s blog here!
The Challenge recognizes Patient Entrepreneurs with solutions that aid successful, long-term recovery from alcohol and opioid use disorders
UPPSALA, Sweden and NEW YORK, Sept. 1, 2020 /PRNewswire/ — Orexo, a Swedish pharmaceutical company focused on improved pharmaceuticals and digital therapies, and Lyfebulb, a patient empowerment platform, announced the 10 Patient Entrepreneurs selected as finalists for the Lyfebulb and Orexo Innovation Challenge in substance use disorders. Motivated by personal connections to addiction and co-morbidities, the following finalists represent companies with unique solutions that address unmet needs afflicting patients and support partners in the recovery journey:
- Marisa Barbieri, CEO and Digital Health Solutions Architect at Competitive Solutions
- Rohan Dixit, Founder and CEO at Lief Therapeutics
- Richard Hanbury, Founder and CEO at Sana Health
- Shay House, Co-Founder and CEO at youturn
- Lucinda Koza, Founder and CEO at I Ally
- Beau Mann, Founder and CEO at Sober Grid
- Tyler Matheny, Co-Founder and CEO at YANA
- Swatee Surve, Founder and CEO at Litesprite
- Mehran Talebinejad, PhD, Co-Founder and CEO at NeuroQore
- Holly Whitaker, Founder and CEO at The Tempest
Finalists will pitch their business solutions during the two-day virtual summit on October 14-15, 2020 to an expert panel of judges who represent various facets of the healthcare industry and patient community to assess each solution through a unique lens. The judging panel will include:
- David Hunt, Chief Digital Officer at Havas Health & You
- Geri-Lynn Utter, PsyD, Medical Science Liaison at Orexo Pharmaceuticals
- Kajsa Gatenbeck, Investment Manager at Schibsted Growth
- Lisa Smith, Author and Principal at Lisa Smith Advisory
- Philip Rutherford, Chief Operating Officer of Faces & Voices of Recovery
The judging panel will select one winner to receive a $25,000 monetary grant to further the development of their business concept.
“Our hope with this Innovation Challenge is to become one step closer towards eliminating any and all burdens individuals may face when pursuing, maintaining or supporting a loved one’s recovery.” said Dr. Karin Hehenberger, CEO and Founder of Lyfebulb. “Our timely partnership with Orexo has shed light upon the many unfortunate challenges people still face today, but it also signals the opportunity to respond to those challenges through new innovations. We applaud each entrepreneur’s effort in solving for these unmet needs and look forward to the opportunity of making a lasting impact on the community.”
“We are incredibly pleased by the response to the innovation summit initiative and appreciate the engagement manifested the entrepreneurs, who have invested significant time and effort into the program.” said Mikaela Odlander, Director of Digital Therapeutics at Orexo. “We look forward to meeting with the finalists and to continuing our dialogue with this highly diverse set of companies, with a view to support innovative approaches to address the growing issue of substance use disorder.”
More information about the challenge may be found on Lyfebulb’s website at https://lyfebulb.com/innovation-award/orexo-2020.
About Orexo DTx
Orexo DTx is the digital health arm of Orexo AB, a pharmaceutical company that develops and commercializes improved pharmaceuticals and digital therapies. The company addresses unmet needs mainly within the growing space of addiction. Orexo DTx was created in Q4 of 2019 and currently has three products in the pipeline, vorvida® for alcohol misuse, deprexis® for depression, and OXD01 for opioid use disorder, all in partnership with the GAIA group.
Orexo DTx’s mission is to redefine treatment of addiction by offering clinically validated digital therapeutics to ensure more successful treatment for patients and cost-effective solutions for payers. The digital products will be commercialized by Orexo DTx worldwide, with the U.S. as the principal market, where Orexo also commercializes its lead product Zubsolv® (buprenorphine and naloxone) sublingual tablets (CIII) for treatment of opioid use disorder.
Orexo is listed on the Nasdaq Stockholm Mid Cap (ORX) and is available as ADRs on OTCQX (ORXOY) in the U.S. The company is headquartered in Uppsala, Sweden, where research and development activities are performed. For more information about Orexo please visit, www.orexo.com. You can also follow Orexo on Twitter, @orexoabpubl, LinkedIn and YouTube.
About Lyfebulb
Lyfebulb is a chronic disease-focused patient empowerment platform that connects patients and industry to support user-driven innovation. Grounded with its strong foundation in diabetes, the company has expanded disease states covered into cancer, inflammatory bowel disease, multiple sclerosis, mental health, addiction, migraine, transplantation, and chronic cough.
See www.lyfebulb.com, Facebook, Twitter, Instagram, Lyfebulb LinkedIn, and Karin Hehenberger LinkedIn.
For more information:
Orexo Contact:
Mikaela Odlander
Director of Digital Therapeutics
Phone: + 46-187808802
Email: Mikaela.odlander@orexo.com
Lyfebulb Contact:
Karin Hehenberger, MD, PhD
CEO & Founder, Lyfebulb
Phone: + 1-917-575-0210
Email: karin@lyfebulb.com
Exercising is a little different for anyone living with a chronic illness. Some workouts trigger flare-ups in autoimmune conditions, while others cause discomfort or pain. Sticking to a regular routine is also difficult due to the many challenges brought about by one’s condition.
The goal of exercise is also a little different from most people’s. Studies have shown that physical activity aids in the management of chronic illness in many different ways. It reduces risk factors such as high blood pressure; it improves joint mobility; and it lowers the perception of pain, making it more bearable to live with. What that means is that improving quality of life through movement always comes first. Achieving a certain physique or becoming the strongest person in the room, then, are just secondary goals.
Adding to these unique considerations are today’s challenging times. With gyms closed and many people in quarantine, it’s important to remember to keep working out, as regular exercise can help in the prevention and management of chronic illness. Here are five tips that can help you get started:
1. Consult with professionals
Before trying out a workout, make sure to get the go signal from your specialist. Ask which exercises are good or bad for your condition and how much training you’re allowed to do.
Looking for a qualified trainer is the next step. While there are many free resources online, hiring a certified professional is ideal for people with specific needs. Graduates of exercise science degree programs have an in-depth knowledge when it comes to proper exercise prescription, which should be based on each individual’s unique needs. Training with a professional means your program will be customized around your condition instead of having to use cookie cutter routines that may not be applicable to you. Make sure to be open with your trainer about your specific requirements, so they can make adjustments along the way. And given that going to a gym right now is not safe, look for personal trainers who are giving online consultations as there are many. And if hiring a trainer is not possible, try working out with a partner — while practicing social distancing, of course.
2. Be prepared
By now, you are aware of what your condition needs as well as the different scenarios that might happen if you push too hard. That’s why you should always come to each workout prepared. Bring cover to avoid an asthma attack like a mask on your run, pack extra medicine into your bag, and have your emergency contacts on speed dial. Inform your family or housemates that you’re going out to exercise. You can even print out a route so they know where you’ll be.
3. Experiment with different workouts
Trying out different types of exercises is not only exciting, but it also gives you different options. There will be days that doing your usual routine will be difficult, so having backup exercises is a good idea. For instance, Pilates is a low-impact activity that can be a great alternative for when you can’t go for a run due to inflamed joints. It targets your core without putting too much pressure on your joints. Pilates studios are offering their classes online so you can get proper instruction from qualified teachers. There are a myriad of exercises waiting to be discovered by you online, so don’t be shy and keep trying them out!
4. Pair exercise with good habits
People who get hooked on exercise usually re-evaluate their other lifestyle habits, and you should, too! Take a holistic approach when it comes to improving your quality of life as these factors are all tied together.
For instance, anxiety is a common experience for people with Crohn’s disease. It’s easy to fall into a vicious cycle, as being anxious also causes flare-ups in the inflammatory bowel disease. A helpful solution to avoiding triggering those unhealthy cycles is to stick to good habits that naturally alleviate each of them. Exercise is a good place to start, but do also look at getting quality sleep, eating nutritious foods, and balancing your social life.
5. Be flexible
Being flexible doesn’t mean being a master at yoga. Instead, it means being ready to adapt to your circumstances. Skip a workout if you’re not feeling up to it. Or, find an alternative that won’t cause you any discomfort, like gentle yoga or meditation. It’s good to have certain goals, but you should also accept that your condition might sometimes get in the way of achieving them. Regardless of your situation, listen to your body and practice self-compassion at all times.
“The service industry, as we know it, is changing before our very eyes. Fine dining restaurants have become quick-service takeout joints, bars are acting as bodegas, and bartenders have become online spirits instructors. It’s wild how quickly a business model can change in moments of crisis. We’d like to believe that once we get past COVID-19 (Big Rona), everything will be back how it was, but I’m here to tell you: it won’t. The entire structure of the hospitality industry is going through a forced remodel, and if you aren’t careful, you’ll be discarded with the scraps.”
These are the words of Dante Wheat, a local beverage director in my hometown of Louisville Kentucky. Dante is also a freelance writer and founder of Raw Pineapples, an editorial web-page that gives an authentic look into the cultures, people, and spirits that make up the bar industry.
As of this morning, more than 17 million individuals have applied for unemployment, and with no end in sight, many more will be forced to do the same over the next several weeks. The reality is, many of our favorite bars and local diners won’t survive this pandemic. With so many individuals left questioning what’s next, I openly acknowledge it can be challenging to feel optimistic about what our quality of life may look like post the Big Rona.
For myself, I too have had to ask this very real and hard question of what may be next. For the past three years I have been navigating the ups and downs of entrepreneurship. And while I am extremely proud of the progress and contributions made during that time, it can be easy to lose hope during these odd times. We don’t have our own product to sell online. Nor do we have our own brick and mortar to offer take out orders. So, how does a company like The Mocktail Project, a service based mission that crafts mocktails survive when the entire world is on pause?
In 2014, I made a life changing choice that forced me to optimistic about living a lifestyle that I didn’t know was possible. Now six years later I am encouraging you to do the exact same thing; to stay optimistic about the quality of life that may be waiting for you at the end of this pandemic..
I figure we have two ways of looking at our current situation we are all living in. .
The doom and gloom, or the forever optimist.
To reference Dantes’ latest post; “Im not here to take a piss in your Negroni; I honestly think the industry will be stronger for this… eventually. We’re starving right now, but that isn’t always bad. In times of famine, the first thing you do is burn the “fat.” I think the years following this, you’ll see some of the most focused restaurants and bars we have seen in years. You’ll see people letting go of bullshit gimmicks, overpriced mediocrity, and wack products. Instead, you’ll find getting us back to what we genuinely need, excellent hospitality. My curiosity (and hope) is at an all-time high waiting to see the fire menus, concepts, and service regimes that come out of this.”
For myself, I made up my mind six years ago that I wanted to stop being the “fat.” Each year, on April 16, I get to celebrate 365 more days since I took my last drink of alcohol. I was 25 years old when I made that choice to start believing in myself. Believing that there was hope. Taking action in my own daily routines. Taking action over my own mental and physical health. Believing that there was hope for a better future, even without truly knowing if there was light at the end of that tunnel or not . . Optimist!
For longer than I can remember, each time when I reached for a drink of alcohol, my outlook on life, at best, was doom and gloom. There was no light at the end of my tunnel. What seems like a crazy thought today, I genuinely struggled to find value in my own life. I hated who I had become, and yet, I was doing nothing to change it. I had lost most of the people in my inner circle and was a shell of a person. I was lost. More times than not I felt hopeless, no place to turn, a constant downwards spiral into another empty bottle. Like any pandemics, it can be a struggle to look beyond the chaos of the storm you are living in at that very moment.
My first pandemic, a disease I tried to fight without the right mindset to overcome a brutally exhausting lifestyle caused by my own doing. Days and nights lost. Career opportunities squandered. Friendships thrown by the wayside. I spent years and years excessively drinking myself into darkness. I spent nearly ten years unsuccessfully trying to fill an emptiness that couldn’t be filled, at least with the tools I was using in my toolbox.
Today, I openly share my story because someone once did the same for me. I share my story not only to remind myself to continue to look towards brighter days, but to offer you hope and encouragement during even the darkest of times. . . like say a global pandemic. . .
Choosing not to drink hasn’t always been easy for me. There have been days and weeks that I felt like giving up. There were countless times over the past past six years that I questioned myself, internally, asking myself what I was doing with my life. Why I started my own company. Why I was living out of my own car just to keep this project alive. Why, Why, Why?
Like so many us, I was a product of unfortunate circumstances that I later acknowledged wasn’t my fault. I took my very first drink as a young child and then proceeded to spend more than ten years trying to deal with my own insecurities. What I have learned in my own reflections is that when you are living inside of the eye of the storm, it is challenging to look beyond, but I am here today encourage you to do just that, look beyond.
Although this current pandemic, the Big Rona was not of my own doing, it has reignited an energy inside of me that I haven’t felt in years. An energy of optimism that I haven’t felt since I was 25. As the world pauses, it has provided all of us a great opportunity to look at ourselves in the mirror and ask; what kind of life do we want to live post the Big Rona?
For myself, rather than looking at the doom and gloom of our current situation, I am challenging myself to manifest into existence the life I want to live post the Big Rona. I am using this time to rework The Mocktail Project. A mission and project that is near and dear to my heart. In this down time, I am thinking about how I can bring new and creative experiences to you. How to create memories that will inspire you to remember exactly when and where your where in life when you reached for that very first mocktail post the Big Rona.
If covid-19 has taught me anything, I hope it has taught us just how precious life truly is.
Today, six years after making that life changing choice, to stay optimistic, that one day I may end up living a life that I didn’t know was possible. . . well, I have been living it. I made a choice to look beyond the eye of that storm and manifest a better life for myself. In the past six years I have started my own company, The Mocktail Project. I vanlifed to 49 out of 50 of our beautiful states, only (AK) left to go. I have been to more music festivals than I can even count, something I love doing, and something I thought I would have to give up without drinking. I have been able to create countless memories with my family. I’ve traveled abroad. Marked off epic bucket list items. I have lived 10 life times compared to the life I was living at 25. My life isn’t perfect, nor am I. Progress, not perfection they say. Most importantly, I am happy.
I am not asking you to use this time to get sober, that was simply what was best for my own journey. I love and miss a good bottle of red wine and some of my greatest partnerships with The Mocktail Project are my friends on the Kentucky Bourbon Trail. I am encourage you to use this time we now have for self-development. If you have a family, cherish this extra time with your loved ones. Start up a new daily routine that addresses your mental and physical health. Read that book you have been putting off for years now. Get in your kitchen and try to cook that meal you have always wanted to try.
Use this time to be grateful for what we have. The odds of being born are so slim that it’s truly a miracle that you and I even exist. The odds of being born are 1 in 400 trillion. You must remember to live each day to the fullest.
My goals for 2020 have already changed a few different times this year, and that is ok. Now more than ever, when things get tough, and they will be tough for a while, I am going to choose to stay optimistic during the duration of this global pandemic, and I hope you do the same. I want to personally thank all of my friends and family that have supported me throughout the entirety of my life, especially over the past six years since I made the personal choice to have my last drink.
Stay safe, social distance, and wash your hands!
Join us for an informal, chat-style discussion between two Lyfebulb community members in recovery, Rebecca Rush & Lisa Smith, lightly moderated by Lyfebulb CEO Karin Hehenberger, MD, PhD. We are all living during unprecedented times created by the COVID-19 pandemic, which has posed particular challenges for the addiction recovery community. Do you want to hear how others in recovery have adapted to the new normal? This event, part of our fireside chat series, will spotlight innovative solutions and adaptations for a quarantined reality in order to maintain recovery. We will be sure to discuss today’s addiction and recovery landscape as a whole, so we encourage you to submit any specific discussion topics or questions that you’d like us to cover!
See the replay here:
Time: Aug 26, 2020 04:30 PM EST
“Part of adapting to the conditions of the pandemic has meant refocusing the tools I rely on for accountability and keeping to a routine. In this context, this may mean pulling out different tools than you are used to relying on.” – Lisa Smith
Hello all, I’m Lara.
I am a Marriage and Family Therapist associate in California, and I work with teens, young adults, and career professionals who are working through issues surrounding anxiety, depression, self-esteem, personal development, and relationship issues. But my true call to action is the work I do with those living with chronic illness.
In all honesty when I originally set out to get my master’s in counseling, working with the chronic illness population was not something I was considering, even though I had a chronic illness at the time.
At the age of 23, I was diagnosed with dilated cardiomyopathy (which meant my heart was not able to pump blood effectively to the rest of my body) and soon after, I was diagnosed with ventricular tachycardia (VT) — a horrible and life-threatening rhythm issue. I had an ICD which kept me safe, but I would frequent the ER more than anyone would like.
I knew the nurses, I knew which staff did paperwork the fastest, and I knew exactly how the amiodarone should be given. “Don’t do a push, please give me a drip or else my blood pressure will drop”. Another popular sentence by me was “This vein never gives blood, try my other arm”. I became more familiar with the medical world than I ever wanted to be.
I lived like this for 5 years. I spent a large part of my 20s in this constant state of panic. Always wondering when the next VT storm would hit which was not only terrifying, but it made my cardiomyopathy worse, reaching an ejection fraction as low at 8 percent at times (An ejection fraction is a measurement of the percentage of blood leaving your heart each time it contracts. A healthy heart’s ejection fraction is from 50-60 percent).
Safe to say, stairs were not my friend.
In the meantime, though, I lived a good life, just one with an invisible illness. I began dating a wonderful man, spent time with family and friends, and received my masters. I tried to keep moving life forward but I was always grieving the parts of my life that weren’t “normal”, the version of myself that I had lost, and the milestones I was likely to never hit (having a wedding, taking trips with friends, or having children) because of my illness.
I cannot emphasize this enough; my own therapy was one of the most important protective factors during this time. Without it, I don’t think I would have found my own strength and would have fallen into a depressive daze.
Transplant was always on the table, but I believed that if I did the work, I could save or fix my heart. After countless ablations and medication changes, I had my last and likely worst VT episode. My ICD fired, hard, and at that moment I knew that the fight to keep my heart was over. It was time for a transplant. I was listed shortly after, and after waiting for 13 days, I got the call on June 19, 2019.
My life has taken a 180 since transplant. I had created a box in my mind and labeled it “I Can’t”. In that box I filled all of these dreams, aspirations, desires, and joys. It was a box filled with things I was no longer able to do or would never be able to experience. Things like running and jumping and swimming. Things like crossing the street in a rush, or driving at night, or making long term plans without the caveat of “I’ll see if I can”.
Transplant has allowed me to open that box back up. I have spent the last year pulling things out one by one. The limitations I had been living with aren’t limitations anymore. It is surreal and humbling after living with an illness for so long. And it is all thanks to a donor who gave me and others the ultimate gift through his graciousness. He is always on my mind. I am always working to keep our heart safe, to make him proud. There are not enough thank you’s I can ever say to express my gratitude.
As I mentioned before, while getting my masters, I did not think I would be working with individuals living with chronic illness, but my personal experiences transformed me. My own therapy allowed me to tackle my issues with a bit more grace, humor, and strength.
What I experienced was unique, but I am not the only one. So, through my work as a therapist, I wanted to provide space to those of us who are learning to live with a chronic illness, who are grieving at times, and who are trying to navigate life while honoring our health concerns. My work still tackles all sorts of issues such as anxiety, depression, and relationship issues but it does so from the lens of living with a chronic illness. It is the most rewarding work I have ever done. I am honored to be a part of other’s transformations. I am honored to work with individuals towards the goal of living an authentic, happy, and content life, despite of and in congruency to, their medical conditions.
For more some chronic illness and self-development inspiration, you can follow my Instagram @wishyouwellness_ or check out my website www.laraabounayan.com
Sometimes one of the most difficult things about the experience of living with chronic pain can be feeling that your loved ones don’t understand. Even when loved ones mean well and want to be there for you, sometimes they simply can’t fully ‘get’ what you’re going through. This can leave you feeling isolated and alone, which unfortunately is a common feeling when you live with chronic pain.
Having to explain every symptom you’re experiencing and how you feel in every situation can be really draining and increasingly frustrating. Often it’s hard enough to fight fatigue to get through the day, never mind having to explain what you’re feeling. Sometimes talking about your symptoms can bring them to the front of your mind and make them harder to deal with. If you’re utilizing adaptive coping strategies and trying to distract from your pain, to think positively and to pace your activity so you can get things done, sometimes being reminded of your symptoms can actually worsen them!
Yet you know your loved ones want to be there for you and want to help. You understand that chronic pain can affect the whole family, not just you. So how do you deal with this situation? Throughout the years of living with chronic pain, I’ve developed a few ways to help my loved ones understand while also preventing me from having to go over things all the time.
1. Arrange an open conversation
Arranging a specific time to have an open conversation about your chronic pain can be really useful. You can allow your loved ones to ask all of their questions or voice their concerns, and take your time to answer them in a safe space, at a time that suits you. You can be clear that outside of this conversation, you’d prefer not to go over things too much as it can be unhelpful for you. This provides a clear time for your loved ones to get the reassurance and information they need, as well as allowing you to set a clear boundary for the benefit of your own health.
2. Send resources
It may be that your loved ones are trying to educate themselves about the disorder to help you, but aren’t sure where to turn, or perhaps aren’t reading accurate resources. Picking out some great resources which you feel reflect your condition accurately and sending the links, leaflets or books, can be a great way to allow them to educate themselves about what you’re going through.
3. Write down how you feel
We’re not all great at talking about our feelings face to face. Sometimes an in depth, in person conversation can be much more draining emotionally and even physically. It can even lead to being flustered and not remembering what you wanted to say, particularly if the loved ones you’re trying to communicate with are not as understanding as you might like them to be. Writing down how you feel and specific points you want to get across can be a great way to ensure you’re expressing exactly what you want to. You could send your loved ones a letter, an email, or even a text.
An extra bonus to writing things down is that your loved ones have a reference point to refer back to whenever they need to, giving them an ongoing clear understanding and reducing the chance you will need to go over things again.
4. Use relatable examples
If you don’t live with chronic pain, even if you’re trying really hard, it’s not possible to understand exactly how it feels. Something I’ve found really useful is using examples that my loved ones can relate to in their own lives.
For example when I’m referencing fatigue, I describe it to them as that feeling at the end of the night when you’ve had a busy day, you’re exhausted, your eyes are closing as you sit on the sofa and you know you absolutely have to go to bed because you can’t stay awake any longer. I then explain that on bad days, that’s the feeling I wake up with, and I only get more fatigued from there.
Another example is how I explain the ‘fibro fog’ (cognitive issues) which comes with fibromyalgia. I describe that feeling when you walk into a room and forget why you went there in the first place, or when you have a word on the tip of your tongue but can’t quite reach it, but amplified. I use these examples to help them understand somewhat how the experience feels.
5. Ask them to write down questions and concerns
If your loved ones have lots of questions and concerns, it can be a good idea to ask them to write them down. That way you can address each concern one at a time when you feel up to it, allowing you to deal with things at a pace that suits you.
Your mental and physical health come first
Fundamentally it’s vital to remember that your mental health and your physical wellbeing come first. There’s no requirement which says you have to help your loved ones understand. They are responsible for their own self-education and understanding. For me, it helps me to feel less alone and enables those I love to know better how to help me. However if you feel that explaining what you’re going through isn’t useful for you, you’re under no obligation to do so.
Remember that if your loved ones are not willing to understand or are acting in a way that is detrimental to your health, you have a right to set clear boundaries or distance yourself from negative influences. Even if your loved ones have the best of intentions, setting boundaries can be beneficial for your own wellbeing and doesn’t mean you love them any less. Never be afraid to do what is best for you.
In recent weeks, months and years, we have witnessed far too many hate crimes toward our Black brothers and sisters. It is not unknown to us that many Black bodies have been tested upon without fair pain medications, expected to endure tremendous suffering in the name of science. Within the healthcare system, not only do Black folks face significant health disparities and delays to diagnosis, they also deal with uphill battles when it comes to accessing good insurance, care and treatment options.
With this blog post, I aim to shed light on the stories of 8 lovely Black inflammatory bowel disease (IBD) patients while sharing the resources of 3 die-hard Black IBD patient thought leaders, along with the resources of 5 prominent Black gastroenterologists who are leading the charge in ensuring the gastroenterology field continues to include more diverse Black voices. My hope is we can continue to make strides in eliminating disparities in minority health by sharing these and other very real stories and how Black patients continue to advocate for themselves in spite of significant hurdles.
Read the full interviews on Tina’s original blog post here.