The Ladybug

Tag: Chronic Illness

  • “You Look Great!” Are Appearance-Based Compliments a Problem? 

    Dear readers, can you tell from this photo how I am feeling/doing?  Would you say I look great?  I took this selfie at the park today…but what about my day can you really understand from the look of the photo?  Let’s explore the topic of compliments based on appearance… 

    I do not wish to seem vain when I say that I have received many positive comments about my physical appearance throughout my lifetime.  However, today I want to draw the curtain back and talk honestly about what is often going on under the surface. As I have shared in the past, I struggle with multiple chronic illnesses, both mental and physical.  In addition, recently I have had some acute illnesses distressing me as well.  So, I consider myself a bit of an expert on the problems associated with getting compliments on “looking great,” while feeling like hell on the inside.  Let me give you some examples of what I mean: 

    First, I have struggled since age 18 with a severe eating disorder.  This disorder, which I call ED, has continued for my entire adult life.  It has taken many forms and has been visible with many different disordered eating behaviors.  Therefore, I have never been able to maintain a stable weight.  I am 5’4” tall and have weighed in a range of over a hundred pounds of differences.  I have been a size 0 and a size 20 in pants.  When I was anywhere from a size 0 to a size 12-14, I still received positive compliments, although I found that the lower the pants size, the more compliments I would acquire.  From size 14-20 in pants, I very rarely received any compliments, and was told constantly that I looked “unhealthy” and had “lost control.”  What I never told the people who felt free to comment either positively or negatively on my pants size, was that I was either starving myself to be thin, or binging to deal with stress, or purging to try to “fix” my weight gain.  In addition, I went through cycles in time when I was over-exercising to control my weight and get positive feedback.  I was punishing my body at the gym, just hoping to accomplish another physical appearance goal.  Finally, I had to stop visiting gyms, as they became unhealthy environments for me.  I understand that this experience of gyms is not true for everyone, just my story’s truth. 

    Second, my chronic mental health issues such as bipolar disorder and PTSD affected my inner world and still do to this day.  I used to wear heavy make-up and heavy perfume and obsess about my fashion choices, all because I did not want anyone to see how depressed I was or how much I was struggling to merely hold it all together emotionally.  I would spend hours on my hair, dying it, growing it long, straightening it with a hot iron, all so that I could look like anyone but my natural self.  The truth was that in my 20’s I went through a mental storm where I hated myself and I could not get stable.  Thankfully, that is no longer the reality of my life.  In my late 30’s now, I live on a much more even street, but I still struggle.  The mental health issues I have are chronic, and so will never go away.  But I do not try to disguise myself anymore with beauty armor.  I wear my hair in its natural curls and color, even letting the grey strands creep in, and I wear minimal makeup and feel comfortable in sweatpants and a tank top.  I do not hide.  I also get a lot less attention from men who want a model for a girlfriend.  In the past, partners I have had have asked me to change my appearance for their preferences. My attitude now is…f*ck em! The right type of partner will find me eventually, and whoever they are, I will require them to not ask me to change my appearance, and simply like me for me. 

    Third, both chronic and acute physical illnesses have plagued me throughout my life.  This may be my biggest annoyance.  I receive a compliment when inwardly I’m dying from my invisible illnesses.  I have what is known in Zebra circles (IYKYK) as the trifecta (hEDS, POTS, and MCAS).  These are: Hypermobile Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardic Syndrome, and Mast Cell Activation Syndrome, Google them for more info!  These are miserable illnesses to live with, and there are few treatments for them.  It is all about “lifestyle management.”  I may look great but feel terrible and barely standing, not an exaggeration as I sometimes now walk with a cane or walker.  I want to make something clear, compliments on my personality or spiritual gifts etc…are welcome. But when my body is aching and I feel physically terrible, and someone assumes that I must be feeling better because I “look great,” that is what upsets me.  Please simply ask if my health is better. Do not make a blanket statement that feels as though it dismisses my physical suffering by making a compliment on my appearance.   

    Finally, you may be thinking that I am a snob for not wanting to accept compliments about my physique.  But that is not the problem.  I respect and honor that people are only trying to be nice and find something positive to say.  I just want, in return, a little more validation for what I struggle with due to my eating disorder, mental illness, and chronic and acute physical illnesses.  It somehow feels dismissive to be told that if I can be beautiful, I have won the battle.  And I am currently battling hard with all 4 of the problems I just named.  If you would like to say something nice, please ask me how I am doing and I am willing to give you an honest answer.  I want friends who will listen to me when I struggle.  I want a romantic partner who sees me and accepts me for me.  I am fortunate to have met some of these types of friends, although I cannot say the same for my romantic history.  But stories of dating and soulmates would have to be its own blog post, and it is one that, currently, I am not willing to make public.   

    I leave you with some thoughts.  Try to come up with compliments for your friends and family that are not appearance-based.  Compliment their incredible kindness, smarts, bravery, or laughter that makes you laugh…be creative and let your loved ones know that you love them for who they truly are.  I, myself, have made appearance comments before as well, and I am pledging right now to reform my ways, won’t you join me?   

    With all respect and love for my readers, G.

    PS!

    If you struggle with an eating disorder, check out MEDA Inc. | Multi-Service Eating Disorders Association

    If you struggle with mental illness, you can always dial 988 for crisis assistance or go to 988 Lifeline – If you need emotional support, reach out to the national mental health hotline: 988.

    Finally, if you struggle with hEDS, check out Support – The Ehlers Danlos Society

    Remember, you are Never alone!!!

  • Strength Inside the Struggle

    Today is a holiday, Valentine’s Day, and many are enjoying dates with their partners and the thrill of a special evening approaching. However, I will be honest that that is not my reality today. Why? Because, I am sick today. My chronic illnesses are in a flare. So, I thought I’d give you a look at what that is like for me, instead of pretending that my life is roses. This entry is not meant as a pity party, merely to give the average healthy person a glimpse into my world.

         I have been diagnosed with what is casually known as “the trifecta.” This includes hEDS (hypermobile Ehlers-Danlos syndrome), POTS (Postural Orthostatic Tachycardia Syndrome), and MCAS (Mast Cell Activation Syndrome). I encourage you to Google them, because these are complex chronic illnesses that have no cure, and make the lives of those who suffer from them pretty damn miserable! Basically, I struggle with a multitude of symptoms, including chronic fatigue and chronic pain. I take 20 medications a day in an attempt to manage the symptoms, but nothing is super effective. These medications also include the ones I take for my mental illness diagnoses. However, I have written previously about my chronic mental illness diagnoses, and they are not the topic of this post.

         I began having health problems as a child, and I have always been “sickly.” It has been a long journey of tears, unsuccessful treatments, surgeries, trips to the ER, and doctors telling me that I was crazy before I finally got the correct physical diagnoses. They came from a combination of an Integrative Medicine doctor in Northampton, MA and a few specialists in Boston, MA.  The trip to reach answers was long and difficult.

         Once I was properly diagnosed, I had a lot to process. On the one hand, I was relieved, and on the other hand, I was completely overwhelmed with facing what I now knew would be a lifetime of being sick. In early 2025, I began seeing a health psychologist for a special kind of therapy to help me learn how to live better and cope with the new knowledge. He has been extremely helpful. However, it has also been a challenging process to relearn how to balance my daily activities so as to better preserve my health.

         You see, I have always been an active person. I have always enjoyed setting goals for physical activities and participating in charity walks. As a younger person, I rode horses competitively and did jumping at horse shows, as well as dressage. I once dreamed of being a horse trainer. In addition, I had a passion for running as a young woman and enjoyed lifting weights at the local gym. My attitude was always to push through and keep going.

         BUT, as I have progressed through life, so have my illnesses progressed. All of those activities I loved to do my body can no longer support. Not surprisingly, this has left me with a ton of mental grief to process, and a lot of anger. So, now we come to the reason for the photograph I chose for today’s entry, which is me walking with my cane. Thankfully, I do not need the cane every day yet, but I do need it more and more. In addition, I occasionally have even needed a walker when in a really bad flare of illness. I have just turned 39 years old, and this seems incredibly unfair to me!

         How do I cope? Not great. Honestly, I have to spend a lot of time lying on the couch or bed and simply resting. Netflix and my DVD player have become necessities. I will say it: I hate resting. I crave a busy and productive life, and I wish my body would let me do more. I’m no expert still on living with chronic illness and dealing with the physical and mental pain. I just keep going. I keep putting one foot in front of the other and being grateful for the good days when I get to accomplish something meaningful.

                For example, I transferred to Westfield State University in the Fall 2021 semester, after not doing college course work for 14 years. It has been difficult, but I have now completed 11 courses at WSU with an overall GPA of 3.8. In addition, I enjoy volunteering at my local church. This year there was a high of being a worship leader for the Christmas Eve service. Mission work for the less fortunate in our society is also a passion of mine, and I feel fulfilled when I can help local charities. And, family and friend time is precious to me. I love to be social, even if it means resting afterwards. All of these blessings make my life purposeful. 

        I encourage you to be grateful, just as I try to be grateful, for the wonderful moments in life! We all struggle with something, and the best comeback is to see how God has blessed us. I try to be positive, even when it’s rough, and know that I’m never alone. My family, friends, and Faith guide me through. May my story inspire you to see your own strengths inside the struggle, and NEVER give up!!

         With Resilience, G.

  • Restorative Walking: A Personal Journey

    Walking is such a wonderful activity, and full of many different benefits!  I do not take my ability to partake in this gift lightly!  And walking truly is a gift, as it allows one to exercise in a gentle way.  If you have read The Ladybug this year, you may already know that I feel especially connected to the Spirit of God while in nature and moving my body.  I also like to partake in charity walks to raise money for worthy organizations that do good in our imperfect world.  In addition, walking with a friend, family member, or group, is a blessed way to be in community and form connections.  I could go on and on about the benefits of walking, but I want to get a little more personal with my readers today about my 2025 walking journey.

                Walking is, in general, a little more difficult for me than for the “average” person.  I have been diagnosed with POTS (Postural Orthostatic Tachycardic Syndrome) and hEDS (hypermobile sub-type Ehlers-Danlos Syndrome).  Both illnesses affect an individual’s ability to exercise.  However, I persist with a routine of walking and yoga as a way of maintaining healthy and joyful movement in my life.  The year 2025 began with a blast, with my body being strong enough to complete the American Cancer Society 31-Mile Challenge in January.  I walked 42 miles in the month of January, while raising money to fight cancer. 

                As the year continued, I began to feel a bit like I was struggling with my health.  I completed less mileage in the months of February and March.  Half-way through March 2025, I became ill with a bad bronchitis and lay in bed feeling sorry for myself.  In April 2025, I woke up on Easter Sunday extremely ill with a tick-borne illness like Malaria.  If you want more details on that experience in my life, see my former Ladybug post I’m Back! Let’s Talk Honestly About Anxiety and Faith.  By the end of May 2025, I was barely walking down to the mailbox. 

                Facing a huge deficit in my physical stamina for walking and getting outdoors for exercise has been hard on my mental health as well.  As the month of June began, I was determined I would regain my strength.  Gently, I began with restorative yoga practices.  Then, walking 0.50 miles up and down the sidewalk near my apartment building.  When I was visiting my parents’ home, I walked short distances with the family dog.  I carefully stayed under a mile at first until I felt strong enough to barely reach that distance. 

                It seemed that my fitness was on an up-swing, but the universe had other plans!  In early July, I was admitted to the hospital on a med/surge floor for testing and the procedures set me back yet again.  When one has POTS and hEDS, it is harder to recover from “normal” testing which other individuals may bounce back from.  I left the hospital on shaky legs, walking with a cane.  I do not want to complain too much at this point, because let me be clear that walking is a privilege.  Even with the set-back, I knew I was still blessed.  So, the journey now starts again to gain momentum and stamina.

                I would like to choose a charity walk in the Fall 2025 to plan to complete.  It will be beneficial to have a goal to train for as I navigate the difficulties this year has thrown at me, and may continue to provide.  Please comment your suggestions!!  I live in New England, but virtual walks are welcome, too!  Last October 2024, I completed a 10K distance virtual walk for The Jimmy Fund.  I would like to choose a walk with a good cause.  My walking journeys are never all about me.  I like to use my body, in whatever shape she is in, to spread love to others.  I hope that my passion for sticking to it and not giving up will inspire you as well.  Think of a cause you love and find a walk/run/hike/roll that you can accomplish!! 

                In Progress, G.

    PS The photo below is of me walking the family dog today.  I completed 1.03 miles! 

  • Challenges and Gentle Self-Care

                                                    Updates and Lifestyle Hacks

    First, I would like to update you, readers of The Ladybug, on my progress towards The American Cancer Society 31-miles Walking Challenge for January, which was the subject of my first blog post, Walking for a Cause.  I have successfully completed the challenge, by walking a total of 42.56 miles in the month of January 2025.  The goal of the challenge was to walk 31 miles total, and so I was quite pleased with the result of my efforts.  In addition, I was able to raise 151.00 dollars for The American Cancer Society from donations of generous friends and family members who sponsored my walking.  Completing a goal is always rewarding, whether the goal was large or small, and walking for charities is one of my most important values.

    As I have mentioned previously, I struggle with chronic physical illnesses, which can make exercise difficult on any given day.  Two of my diagnoses are: hEDS (Ehlers-Danlos syndrome, hypermobility subtype) and POTS (Postural Orthostatic Tachycardia Syndrome).  These two illnesses do not have cures, and are managed through lifestyle changes.  Exercise is highly suggested for both conditions, and can help the body stay stronger.  Beyond physical health, the benefits of walking for mental health cannot be overstated.  When I am in nature, I feel calm, serene, and connected to God.  Nature reminds me that the problems of the world that seem huge, can just melt away with some sunshine and the songs of birds.

    I feel that when I ask my body to walk, even if she is tired or the weather is difficult to endure, I need to find a way to reward my hard-working body.  One of the ways that I do this is by drinking homemade matcha green tea lattes.  Matcha is an ancient green tea that was drunk by Buddhist monks in a special ceremony.  There are multiple benefits to matcha, including its antioxidants and natural caffeine.  Personally, I find the little ritual of making my matcha lattes to be rewarding.  First, I heat water, but not to boiling.  Then, I whisk the matcha powder with the water.  Finally, I add cold oat milk, and whisk everything together.  The drink is then poured in a glass and finished with a couple ice cubes.  It tastes earthy, rich, and sublime.  This is my personal thank-you to my body after getting me through another work-out. 

    I recommend that everyone be on loving terms with their bodies and find a special way to engage in some self-care.  Self-Care is unique to what each person enjoys. I would simply define it as: being gentle with the wonderful bodies and minds that God has given us.  Whatever challenges you may be facing, or difficult goals you may be pursuing, take some time and be gentle.  Read a book in your favorite genera, wear fuzzy slippers after a pedicure, play an instrument, paint a picture, soak in a bath, or make a list of the blessings in your life.  It is the little moments of joy that heal us and keep us going.  Take on your challenges armed with self-care!  Until the next quest…keep healing, G.

    P.S. Below are two pictures from my walking adventures in New England, and two pictures from my matcha making ritual at home.  Not sponsored!  Enjoy!!

  • Lifestyle: Walking for a Cause in 2025!!!

    Hello and welcome to 2025!!  I am starting this year with a lifestyle post about my love of charity walks.  As a person who struggles with more than one chronic illness, I find it invigorating and important to exercise by walking on a regular basis.  I can think of no better way to apply my love of walking than by raising funds for worthy organizations.  I first began participating in charity walks when I was quite young, around 10 years of age.  Over the years, the mileage that I can achieve has changed based on my health, but my determination to make a positive difference in the lives of others has not wavered.  In 2024, I participated in four charity walks.  I completed two 5K distances, one 2-mile distance, and one 10K distance, all of which I trained for carefully.  The walks supported the organizations: National Alliance on Mental Illness (NAMI), Open Sky Community Services, The American Foundation for Suicide Prevention (AFSP), and The Jimmy Fund. 

                Fast-Forward to 2025, and I am taking on a new walking challenge!  I have registered for the American Cancer Society 31-miles in January Challenge, committing to walk at least 1 mile per day.  This cause is very close to my heart, as two of my grandparents struggled with cancer, and one of my close friends is currently fighting. Unfortunately, cancer seems to affect the lives of everyone, whether you know someone or battle with it yourself.    The fundraiser is on Facebook, and I include the link here:

    https://www.facebook.com/donate/1351351116309350/

    I appreciate your support!!

      In addition, this challenge also comes at a tough time for me physically, as I have been in a flare of my chronic illness. Walking daily is currently more difficult than usual.  However, I am determined to overcome my own health struggles, and aid others as well.  Comment below any ways that you use movement to make a difference.  What does it mean to you? 

    Let’s Go, New Year, Goal Set!!!!  

    My photo of my first 2025 walk: