Please Don’t Congratulate Me For ‘Getting Better’

Please don’t congratulate me on getting better. Because in truth, I just got lucky, and I’m not cured. I have friends with the same condition as me who haven’t been dealt the same hand in life. When you congratulate me, you inadvertently shame them. You also imply that there is something wrong with being too sick to work.

The thing is, I haven’t managed to return to work because I tried harder or because I’m somehow stronger than other people with hypermobile Ehlers-Danlos syndrome. It’s just that my chronic illness stars aligned. My hormones settled, we found a good medication regime for my body, my allergies calmed down, I managed small amounts of exercise, I had a period of time where I was miraculously free from acute injury and I found a job with extraordinarily accepting people.

The writer holding a rabbit.

If you want to share some words of encouragement, tell me that it’s nice to see me so happy or congratulate me on finding my calling in life. Tell me you’re delighted that things are looking up for me. Ask me how I’m managing.

I’m still in pain. So much pain. I get home from a five hour shift and feel like I’ve climbed Mount Kilimanjaro and then tumbled the entire way back down. I need my partner’s help more than ever. I’d not be able to do this if he wasn’t happy and able to support me financially, mentally and practically.

I’d not be able to do this if I hadn’t found a job that I was so, incredibly passionate about that this level of pain was justifiable. I’m financially worse off working part-time than I was on the benefits that I had to fight for just a year ago. Now that’s a risk you must be able to justify. What if it doesn’t work out? It’s not easy to go back.

I’m proud of myself for being brave, though my physical therapist would call me stubborn. I’m proud of myself for keeping going when it’s tough and I’m exhausted. But mostly, I’m grateful that my body cut me a break and the world tossed me a bone. I’m one of the lucky few, not one of the many.

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12 Incredible Artists With Down Syndrome

When my daughter was born with Down syndrome, I had many questions about the possibilities for her future. She was only a few months old when someone shared a link to an auction for a painting by Michael Wasserman, an artist with Down syndrome. His art was captivating, and somehow it felt like a symbol of great possibilities for my daughter.

A few years later, I connected with a Polish author Joanna Puciata. I was surprised to find she had a sister with Down syndrome, which we both felt was a sign our friendship was meant to be. She invited me to an art exhibit where we could meet in person and I could look at her sister’s art. Her paintings were full of emotion; I felt Kasia Puciata’s sadness through the pictures she painted and saw great beauty in the way she shared her feelings with each brush stroke. I am now the proud owner of two of her original paintings.

Often, the way artists experience life comes across in their pieces. People with Down syndrome have a unique way of looking at life, and their artistic expressions reflect those experiences.

Many of the artists with Down syndrome below have had their work recognized by experts in the field, allowing them to showcase their art around the world.

The Mighty is proud to introduce you to these 12 amazing artists with Down syndrome:

1. Kasia Puciata (1961-2004)

Abstract painting of Kasia Puciata

When Puciata was born in Poland, the country’s culture was not well prepared to handle disability. Some people were ashamed to have her family over or requested Puciata stay home. Others advised putting her in a foster home, as not to “ruin” the family’s good image. In time, neighbors came to accept Puciata. After her father’s death, Puciata turned from a happy and outgoing child to someone who had to search her inner world to shine some light. Her paintings are a reflection of her deep soul and a result of two years of silence, followed by desperation to share her loss with the world. A breakthrough happened when a well known art critic saw some of her paintings and declared Puciata a talented Polish artist. Puciata’s art has been displayed at the Wojciech Wróbel Gallery and the Polish Art Museum in Chicago. Her art has been featured in art exhibits in France and Germany, too. The mayor of Warsaw was at the opening of one of Puciata’s most recent exhibits. Hoda Kotb was awarded one of Puciata’s painting during  the National Down Syndrome Society’s Spring luncheon in 2013.

To learn more about Kasia Puciata’s art and life, visit Vague Memories.

2. Alan Tellez

"Tears" by Alan Tellez

Tellez is a Mexican artist who began his career when he was 17 years old. He studied at the Instituto Municipal de Bellas Artes, Mexico’s world recognized art institute, where he attended workshops and private lessons from Ángela Uscanga Tiburcio. His first art exhibit took place in 2010. In 2011, art curator Ricardo Camacho recognized his talent and introduced him to José Luis Cuevas, who invited him to exhibit his art in several museums in Mexico City and Toluca alongside other famous Mexican artists. He recently had an exhibit in New York City. His art is abstract, inspired by his favorite painters: Joan Miro and Picasso. Recently, Tellez has focused on painting faces as a desire to show how everyone is different and special in their own way. Each one of his paintings has direct meaning to his life. Tellez also partners with children’s rights organizations. He is a global Down syndrome ambassador and has spoken at the United Nations.

To learn more about Alan Tellez’ art visit

3. Christian Royal

Christian Royal's pottery

image via Facebook

In his teen years, Royal showed an interest and aptitude for working with clay. He began making pottery as part of his homeschooling program. Since his first lesson with Kris Neal of Fire And Earth Pottery, he’s increasingly focused on pottery. John and Jan Myers, professional potters, offered to teach Royal the methods and techniques they have developed over 30 years. The Myers’ teaching enabled Royal to produce a style of pottery that captures simplicity and charm in its essence. Christian Royal Pottery is high-fired stoneware handmade using slab-building techniques. The stoneware incorporates the natural splendor of leaves or the artistry of beautiful laces, which are shaped into flowing designs and functional forms. While some of the pieces may be similar, none are identical due to the process.

To purchase and view Christian Royal’s pottery, visit Christian Royal Pottery.

4. Judith Scott (1943-2005)

Judith Scott was born in Cincinatti, Ohio. It was unknown at the time that she was deaf and therefore considered as having a “profound intellectual disability.” At the age of 7, she was sent to a state institution where she lived in isolation for 30 years. Her twin sister later arranged for Scott to be released to her care and they moved to California where Scott joined the Creative Growth program. Scott was a visual artist, independent and self-directed. In the 18 years Scott made her work she never repeated a form or color scheme. Crafting armatures of bamboo slats and discarded materials, Scott diligently wrapped each work with lengths of knotted cloth or yarn. She was introduced to fiber art in 1987 by artist Sylvia Seventy at Creative Growth and produced a remarkable, breathtaking body of mixed media sculptures. Roger Cardinal and John MacGregor, internationally known scholars and experts in the field, have both designated Scott an “outsider artist,” as her sculptures reflect little cultural input and are highly individualistic, reflecting Scott’s own unique personal vision. Scott’s work is in the permanent collections of the Museum of Modern Art in New York; the San Francisco Museum of Modern Art; Collection de l’Art Brut in Switzerland; The American Folk Art Museum in New York; and the Museum of Everything in London. Most recently, from October 2014 through March 2015, The Brooklyn Museum in New York, exhibited the first comprehensive retrospective of her work.

To learn more about Judith Scott, visit Creative Growth.

5. Bernadette Resha

Outdoor scene painting, fall colors, trees, a lake, mountains in distance

Born in Nashville, Resha has received worldwide recognition. Her exposure to the art world and culture started as a child when she attended as many art galleries, museums, concert halls and plays as her time would allow. From an early age she was encouraged to draw and color in her own style as a form of expression and therapy. This has resulted in a body of work which documents an artist developing a style entirely her own. With an artist grandmother and a mother fully committed to allowing her to use this medium of self-expression for as far as she would care to take it, Resha now has exhibits in numerous art galleries, art and craft shows and attends many conventions throughout the United States showing and selling her work. “My goals are to increase my skills. I want to improve on painting three dimensional, lighting and form, shape and shadows, and to learn how to blend colors,” she writes on her website.

To view and purchase Berndette Resha’s art, visit Bernadette Resha.

6. Ashlee Jane Birckhead

Painting of fish by Ashlee Birckhead

Birckhead was born and raised in northeastern North Carolina near Edenton, a beautiful waterfront historical town. She lives with her parents, Thomas and Susan Birckhead. Birckhead developed a strong interest in the visual arts at an early age and began to paint professionally in 2001. Birckhead is quiet and shy by nature, and art has been the key to a challenging but meaningful life. Her mother is a artist and art educator, so art was a natural path. Animals are one of Birckhead’s favorite subjects. She loves to sketch and create modern abstract designs and paint her favorite ideas on canvases. Birckhead likes to draw animals with a black Sharpie followed by watercolors. She also paints with acrylics on canvas. Birckhead has exhibited in Phoenix; Detroit; seven times in New York City; and Long Island with the Down syndrome group, Alexander’s Angels; Virginia Beach, Virginia; Roanoke, Virginia; and all over her home state. In March, she will be a featured artist at her local Chowan Arts Council, in Edenton. Birckhead told The Mighty: “I like painting because it’s my life. I’m very crafty. I like all the details I do with my animals and abstracts. Abstracts are original ideas that fall right out of my head and it’s fun to paint all the crazy colors and designs. I like being a famous artist and making new friends who enjoy my art.”

To see more of Ashlee Birckhead’s art, visit her Facebook page, Ashlee’s Art.

7. Megan Hawk

Bluebird painting by Megan Hawk

After graduating from high school, Hawk enrolled in a painting course through Down Syndrome of Louisville’s College Connections Program. There she met teacher Charlotte Link, who discovered her talent. Now, years after that program, Hawk attends Link’s studio once a week where she paints for hours at a time. Hawk prefers to paint animals, and she uses beautiful colors to bring them to life. Some of Hawk’s paintings can be seen in the office of her local Down Syndrome Association of Louisville. She has exhibited her paintings at the DSA Gala. Hawk’s first painting sale was to a local news anchor. One of Hawk’s paintings was auctioned in a fundraiser for $1,100 at the Louisville Down Syndrome Association.

To see more of Megan Hawk’s art, visit her album on Down syndrome on The Mighty Facebook page.

8. Michael Wasserman

Until he was 39, Wasserman always chose black. If black paint, markers or pencils were unavailable to him, he had no interest in art. Shortly before his 40th birthday in 2001, Wasserman dove into color. In the course of one week, he painted eight pieces using acrylic paint and paper. With every brush stroke, Wasserman brushed his soul, and colors flowed onto his paper. Wasserman’s first works in color were displayed by the St. Louis Arc. Soon after, Wasserman was invited to participate in an art auction. Wasserman’s paintings have sold for up to $400. From time to time, Wasserman still auctions his painting on his Facebook page. Winning bidders donate 100 percent of their winning bids to a nonprofit working to enhance quality of life for people living with intellectual or developmental disabilities. The winning bidder keeps the painting, the nonprofit keeps the donation and Wasserman has the pleasure of knowing he is paying it forward. In November 2017, Wasserman was featured in a six-page article in Runner’s World magazine to honor a group he inspired: “I Run for Michael.”

To see more of Michael Wasserman’s work, visit his Facebook page.

9. Michael Johnson

Michael Hohnson painting of children playing instruments

image via Facebook

Michael Johnson paints watercolors, acrylics and oil paintings. He shares an art studio and he paints almost every day. After dinner Johnson can often be found working at his mail order business: filling orders, writing letters and packing his notecards, paintings and catalogs to be shipped to his customers the next day.

Learn more about Michael Johnson and how to purchase his work at Love and Learning. Michael also has a Facebook page.

10. Sam Doran

Sam Doran's painting, white houses with red roofs b a lake surounded by mountains and palm trees are closest to observer

Sam Doran is a 14-year-old who is interested in music, art and participating in Special Olympics. His talent for painting was discovered while participating in a fundraiser for the Down Syndrome Guild of Greater Kansas City. KCDSG asked teens with Down syndrome to create artwork at Pinot’s Palette in NKC for an auction to benefit the organization. Rather than pick the usual items off the wall to paint, he wanted to paint a “Project Runway” model. The resulting painting was great. He next painted a picture of his sister’s dog as a gift for her. For his paintings, he selects a subject matter and searches for an image on the web or in magazines. Then Doran and his mother sit down to paint. His mom mixes paints, encourages and points out details, but Doran is the creative artist.

You can see Sam Doran’s paintings at the KCDSG Facebook page or his online art  gallery.

11. Sarina Rosalie Favazza

Stone Art, "Moonlit Lovers"

Sarina Rosalie Favazza is a 50-year-old woman who started an art business with her sister. Sorelle Sirena LLC means “Mermaid Sisters” in Italian. These Italian-American sisters come from an artistic family originating in Gloucester, Massachusetts, a haven for artist and writers alike. For more than 13 years, Favazza bagged groceries, a job she loved and enjoyed, but she wanted to express herself through her art — to be heard and seen in such a way she hadn’t been able to in her past jobs. She attended art classes on different mediums. Her creative side blossomed along with her self-esteem, self-worth and self-awareness. She has sold over 30 paintings and creations since she started. Favazza paints with acrylics and makes “Sea Stone Art,” which she created with her sister in 2017. She enjoys putting the pieces together like puzzles and creates beautiful pieces of art out of nature. She is a main artist in the business, with her sister helping frame and book gigs. Favazza has sold her art all over the country.

Learn more about Sarina Rosalie Favazza and how to purchase her work at Sorelle Sirena.

12. Allie Guard

image via Facebook

“Allie Art” is the colorful creation of Guard, a young woman from Cincinnati who is drawn to the magic of color. Using colored pencils, she fills intricate patterns with bright hues to create graphic landscapes, each with unique qualities of movement and emotion. After completing a design, the artwork is either framed for display, turned into wearable art in jewelry and accessories or added to usable items such as book marks, key rings, ID badge reels and bottle stoppers. Guard’s mother, Sharon, helps her in the process. All pieces are one-of-a-kind.

To view or purchase Allie Guard’s art, visit Allie’s Art.

Alexander’s Angels, and organization for people with Down syndrome, hosts a yearly exhibit for artists with Down syndrome called DOWNrightART.

Banner images by Megan Hawk, Alan Tellez and Bernadette Resha

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14 Photos That Show the Different Ways Ehlers-Danlos Syndrome Can Manifest

Since there are 13 subtypes of Ehlers-Danlos syndrome with symptoms that affect systems throughout your body, EDS can manifest in many different ways. Some manifestations, like joint dislocations, hypermobility, skin elasticity and chronic pain, are common among EDS warriors, while others, like gastrointestinal issues and organ rupture, may affect some but not all. EDS is also often accompanied by co-morbid conditions, like dysautonomia, adding even more variation to how EDS can manifest.

To create a guide to some of the ways EDS can present itself, we rounded up photos of 14 ways EDS can manifest, as shared by our Mighty community. We hope these photos can help show others with EDS that they aren’t alone in dealing with these symptoms, as well as educate people about the visible (and invisible) aspects of this condition.

Here’s what our community shared with us:

1. Joint Dislocations

“A lot of my joints no longer work the way they should. My right thumb is one of those joints. When I write, pick things up, hold things, grasp things, etc, my thumb slips out of place. I can’t rotate it any more, it just clicks in and out. I took this picture of my thumb because many of my doctors don’t realize just how much you use your thumb. I notice, because for me, it’s painful, and a hassle. So, I took this photo to show them that just normal, daily tasks such as opening Chapstick are hard.” — Rebekah B.

thumb dislocation

2. Postural Orthostatic Tachycardia Syndrome (POTS)

“Myself on my first port access today. My EDS manifests with POTS, and fluids is the only way for me to keep myself from passing out. I get fluids two times a week to help with this. I also manifest with major orthopedic and joint issues, but my comorbid manifestations are major, too.” — Saylor A.

woman's chest with port in it

3. Hyperextension of Joints

I have kEDS and when I relax my knees hyperextend. Over the past year I’ve tried to stop doing it as it’s caused damage to my knee joints, so now I make a conscious effort every time I stand to try to stop this from happening.” — Poppy A.

woman taking mirror selfie showing hyperextension of knee

4. Stretchy, Hyperelastic Skin

“My sagging skin was my biggest insecurity, amongst other side effects. I would later learn this was due to the rarity of my type. As I got older, my discrepancies started to show more and more… I hope to be an inspiration to others and open individuals’ eyes to the true beauty within themselves,” Sara Geurts told The Mighty.

sara geurts

5. Mast Cell Activation Disorder

“Mast cell activation disorder. This is what happens to my face when I shower, and it gets even worse when I try to cover it up. After this initial burning, red, ugly rash, the skin peels and flakes off. It’s painful, embarrassing, and I’m at my wit’s end with it. This is a mild case, a day after contact with water. It is much worse about 30 minutes after exposure.” — Jacklyn C.

woman showing allergic reaction on face from mast cell activation disorder

6. Needing Lots of Medications

“At 33 I have converted weekly pill containers into my daily pill containers. I’ve been on Medicare since I was 26. My life is nothing but doctors appointments, pharmacy trips, intake meetings and medical supply catalogs.” — Shay K.

two weekly pill organizers filled with pills

7. Easy Bruising

“Crappy fragile veins… this is the result of trying to get a line in for fluids and IV antibiotics for an infection last Friday.” — Aemie T.

three photos of bruises on legs

8. Photosensitivity

“This is a photo of my daughter trying to make it through a photo shoot with a dance photographer. EDS and dysautonomia make her eyes extremely photosensitive and slow to adjust. On this day the sun was so bright she couldn’t keep her eyes open without intense pain.” — Avril D.

girl wearing pink dress and ballet shoes standing on one foot in ballet pose

9. Brain Injury

“In the hospital after discovering I’m paralyzed from the waist down. I’ve had multiple traumatic brain injuries as my brain is extremely fragile and not held in place by connective tissue like it should be. I have a high pain tolerance so I haven’t even known or sought help for some of my TBIs but it’s thought the portion of my brain responsible for moving my legs was damaged. I also will be getting a specialized MRI soon at Cleveland Clinic to check for tethered cord as I have a cardiac pacemaker that isn’t MRI safe. I have hEDS and either vEDS or cEDS.” — Jamie H.

woman in hospital gown

10. Scoliosis

“Thought I’d share this X-ray because it helped lead to my diagnosis. The scoliosis was so bad my whole life, I just thought I’d be all better when it was ‘fixed’ with my second fusion surgery. Who knew all my clumsiness, and flexibility, and random bruising, and, and, and…were all connected? A blessing and a curse. Having validation and an explanation, but having to accept my limitations.” — Staci H.

x ray of back and spine after surgery

11. Mental Health Challenges

“If that looks like a fake smile, it’s only half fake. This is me celebrating my 30th birthday with my best friends. Hours later, I was sobbing. No one really prepares you for the mental symptoms of EDS. Some days you fake it until you make it, or until you cry it all out. You never know what will be the catalyst for asking for help, but fake as this photo looks, I’m proud that day got me to where I am now.” — Gauri W.

gauri wadhwa smiling

12. Frequent Falling/”Clumsiness”

“This is an asphalt burn from where I face-planted in a parking lot from just walking. EDS and POTS make me so clumsy. I have zero balance because I’m in too much pain most days to walk, so when I do walk, I wobble and fall a lot. it sucks. Still recovering from my fall four days later.” — Emily F.

hand with red burn spot above wrist

13. Chronic Pain

I was in Seattle, walking around all morning (January 1st). You can’t see how much pain I was in, which is what sucks about having an invisible illness. My hip was coming out, my knee was coming out, and my shoulder was aching, but I stopped to admire the beauty of my city.” — Michelle D.

woman looking at ocean by Seattle

14. Fatigue

“Here’s me having just tried on about 60 wedding dresses and finally picking my dress. Inside I am screaming in pain and exhaustion but still a fantastic day.” — Kirstie W.

woman in wheelchair holding sign that says i found my wedding dress

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What Motivated Me to Put More Effort Into Managing My Type 1 Diabetes

I have had type 1 diabetes since 2005. I was 10 years old. At the time, I don’t think I really grasped what was happening to me.

I was losing weight fast. I was throwing up after each meal. I felt so sick. Next thing I knew, my parents were driving me to the hospital and I was praying over and over again that I wouldn’t die that day.

Then, I woke up in the ICU. I don’t know if I just suppressed the memory of that day, but I can’t remember ever hearing the word “diabetes.” I remember a nurse showing me and my family how to give injections. I didn’t understand what was going on at the time. All I knew was that I had to take shots. And a lot of them.

Over time, my mom taught me how to give my own injections and take my own blood sugar. Soon, I got a grasp on it. I went from drawing up my own insulin to switching to pens. It was amazing, to say the least. Who could ever imagine that a 10-year-old girl would be doing these math calculations in her head to try and figure out how much insulin she would need for a meal? Let alone, do the work of an organ.

But, I never really understood how to get my blood sugars in control. From the beginning of my diagnosis till a couple of days ago, I was all over the place. If you were to draw my blood sugars on a graph, it would look like a roller coaster. Numbers ranged from 40s to an unknown number that just read “HI” on the meter.

But I didn’t really give it a second thought. I knew my numbers had to be 60 – 150s, that was the goal. I gave my insulin, guessing at how many carbs the meal was going to be. I would eat something and just think, “my blood sugar will be fine without the insulin,” as the numbers just kept getting higher. As the numbers soared, I lost motivation to do better.

Everyone has their good and bad days, but it seemed I had more bad days than good in terms of how I felt. My head would always feel foggy. I felt sluggish. Every task seemed to be daunting. I knew all I wanted to do was lie down and sleep.

Anxiety and feeling “low” started to show the same symptoms. Every time I had a flutter in my chest or felt a little anxious, my mind would race to the thought that I was low. And that I needed sugar quick or something bad would happen. I would grab a juice box without checking my blood sugar, easing the tension in me as I chugged it within seconds. I just based it off the symptoms I was having. Little did I know, sometimes I would be in a normal range. But sometimes, I would have a high sugar.

I felt defeated. I didn’t understand. I gave my insulin. I guessed the carbs when I didn’t have the correct number. I was doing everything the doctor told me. Or so I thought.

I wasn’t making a honest effort at it. That was my problem.

I switched my mentality of resorting to a juice box when I felt anxious to grabbing my meter and checking my blood sugar. It would only take about 30 seconds to have that number on a screen. If it was a relatively normal number, I would calm myself down because I knew I would be OK. If it was low, I would go ahead and grab the juice box, recheck my blood sugar in 15 minutes, and reassess. Doing this eased my anxiety in a way that changed how I feel.

diabetes supplies for tracking and managing blood sugar

A few days ago, I had a blood sugar of 75. That number, a talk with a couple of friends and some therapy sessions kicked my motivation into gear. I was counting carbs more intently. I went to the gym for at least 30 minutes to one hour every day. I was checking my blood sugar more. I was feeling better, emotionally, mentally and physically. My head feels a lot clearer and everything seems like it’s slowed down so I could enjoy life.

I had a good run of blood sugars below 100 for a day and a half, which was the best it had ever been in my whole diabetic lifetime. I was ecstatic. Then, it jumped up to 204. Usually, that would kick me into a bad habit of just forgetting everything and doing the minimal amount of effort to just survive. But now, I’m still making a conscious effort to try and get those numbers to a good level again.

Now, I know my blood sugars won’t always be perfect. Things happen. All I can do is try to adjust to what’s happening around me and go from there.

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We Need Better Understanding of Endometriosis

According to Google, endometriosis is a disorder in which tissue that normally lines the uterus grows outside the uterus. Such a vague description, isn’t it? Google failed to mention that endometriosis is a very common chronic invisible illness that has no cure. That it takes seven plus years to just get a diagnosis. That a diagnosis doesn’t solve anything for the people who have it. It’s just the beginning of a long, hard battle that can seem impossible to win.

It can take going through countless doctors just to find one who knows what endometriosis is and how bad it can be. It sometimes takes years to find a doctor who believes your symptoms and pain are a real thing. The common treatment options are birth control, laparoscopic and excision surgery, partial or full hysterectomy and pain management. But again, there is no cure. There’s a chance at temporary relief, but that’s all you get. Temporary.

You put your body through so much, you go through so many extensive surgeries and you try different “treatment” options all for the hope of a little pain relief. You hold on to the hope of being able to live a “normal” life even for a short while.

Look around you: one in 10 women live with endometriosis. We may mask the pain with a fake smile and a positive attitude, but we are struggling. We are forced into trying treatment options that sometimes cause more harm than good. We sometimes suffer in silence because the people around us don’t understand that endometriosis is more than just “period pain.” It affects our jobs and our relationships with the people we love.

Our illness may be invisible, but it doesn’t make it any less real. We struggle greatly with an illness we never asked for. An illness that fuses our organs together. An illness that can make having a child almost impossible. An illness that causes severe pain throughout our bodies. An illness that can cause you to struggle with depression. An illness that makes even the easiest tasks such as showering and getting dressed feel impossible. An illness that has no cure. An illness that isn’t fully understood by doctors.

woman standing on the beach at sunset with the hashtag "I'll rise up"

So, the next time you see someone struggling, don’t judge them over something you can’t understand. We are fighting a never-ending uphill battle every single day. We will be battling this illness for the rest of our lives. We deserve better treatment options but until we get them, don’t judge us. We were given an impossible task and we are just trying to make the most out of it. We have good days and we have bad. And of course, endometriosis will always be a part of us. We have no cure, just “better” treatment options.

We want to hear your story. Become a Mighty contributor here.

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The First Time I Used a Tampon After Being Raped

Editor’s Note: If you’ve experienced sexual abuse or assault, the following post could be potentially triggering. You can contact the National Sexual Assault Telephone Hotline at 1-800-656-4673.

I had my period for less than two years before I was raped. During that time, I preferred to use pads, but I did know how to use a tampon and sometimes would.

Then I was raped and did not get my period for four full years. I didn’t use tampons or pads. I spent this time virtually denying the existence of my vagina.

Now I’ve had my period again for a bit over two years, and until today I have only used pads. But I’m doing a triathlon in July and my period tracker says it’s going to be day two of my period that day. That means I’m going to have to swim during my period.

That means I’m going to have to use a tampon.

The first time I got my period post-rape was just a week before I started dating my boyfriend. This is important because I was at the literal peak of my vagina-denial at that point. I had worried how I’d react when I presumably got my period once again, but I was much more nonchalant about it when it happened. I casually went to insert a tampon and was horrified that it was impossibly painful when I tried.

The key word here is tried, because I did not succeed. I was acutely remembering and reexperiencing what it felt like to be raped, and the shame of that was only heightened by my embarrassment that I was unable to insert the tampon.

But I didn’t give up right away, despite the tears I was crying through unrepressable flashbacks and flop sweat and anxiety-induced body heat. I really could not get the tampon inside of me. When I gave up I felt wholly inadequate, and since I had not yet realized I had been raped I felt even more pathetic for being affected in a new way by a stupid thing that happened four years ago.

That experience in itself was traumatic. Until the necessity of using a tampon for the triathlon emerged, I was pretty content to keep on pretending they don’t exist. But here we are.

Two days ago I tried and quickly failed and didn’t swim that morning and went back to sleep hopefully forever.

Today I really wanted to swim. So I watched some really bad videos clearly targeted at 12 year olds teaching them how to insert a tampon, and then I watched just a normal video that hopefully would distract and relax me while I pathetically tried to untense my hypersensitive groin muscles enough to put a little thing inside of me. And it sort of worked.

No, it did work.

I don’t know what I was expecting. Did I want to cheer for myself and feel free? Did I want to feel like a sufficient and “normal” human vagina-owner and not like a failure? I don’t know. But I don’t exactly think I expected the successful insertion of a tampon to be triggering. But it was.

All I could feel was powerless.

All I could hear was my rapist telling me he wanted to make my phone vibrate inside of me.

All I could see was him taking my phone out of my hands and holding it away so I couldn’t get it back from him and sometimes aiming towards my vagina with it.

All I could feel was me reaching to take my phone back from his hands and squirming away and tightly pressing my legs together when he tried to get it near my private parts.

All I could think was him winning. This was my rapist getting my phone inside me when I kept telling him not to.

All I could hear was him laughing.

And then at the same time I was back in my bathroom with a string hanging between my legs and all I wanted to do was cry.

And I cried a little, and I talked it out with my friend, and I ended my pity party early so I could swim.

And I swam. And I came back home and took the tampon out as fast as possible and only then did I feel free.

Still, I’m pretty sure it will only get easier each time, and someday I’ll be glad that when I want to, I can use a tampon and it won’t be a big event.

Even though that probably won’t be the case on the day of the triathlon, I know that day I won’t give up.

If you or a loved one is affected by sexual abuse or assault and need help, call the National Sexual Assault Telephone Hotline at 1-800-656-4673 to be connected with a trained staff member from a sexual assault service provider in your area.

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Why It Can Be Difficult to Not ‘Look’ Sick

When you have an invisible illness, things can be more challenging because you also need to deal with the pain of not looking sick. It feels awful being in pain, living in pain and not being believed. When you have to constantly explain yourself and convince others that your sickness is real and you are not a hypochondriac, it is a horrible feeling.

Take a look at my photo above. At a superficial glance, there’s nothing wrong with me. I look just fine! That’s where everyone is wrong! You and others know little about the war going on under my skin, about the long list of invisible symptoms I experience. I used to get annoyed whenever I was judged based on my appearance, while I was struggling to look “normal.” A few years back I took another approach: I started to Lyme educate everyone. I did my best to explain all that entails being a person with Lyme.

When I attended a social gathering or when I met someone new, I was faced with the the same issue: everyone kept on telling me I looked healthy and that I may have had a wrong diagnosis. At one point I had given up using makeup just because I could not stand one more comment regarding my appearance. I wished to look sick, just to be in line with everyone else, to make it easier for others to believe me. Their disbelief and ignorance made me feel worse than I already did.

Whenever asked what the most annoying symptom was that I had to put up with, I said that it depended on the day I was having. That’s when I saw people raising an eyebrow in disbelief. Those who took an interest in finding out more about the details of my invisible illness know I always tried not to burden them with my daily cocktail of pains and symptoms. Once they heard me describing what the burning felt like, they understood my misery.

The burning under my skin is by far one of the most disturbing symptoms. It never leaves me. It simply increases or decreases its intensity depending on my other symptoms. I also get shifting pain in the muscles, joints and bones, combined with electrical pulses, twitching prickly tingly muscles. All of these things happen within my body on a daily basis. Despite all this, I still manage to put a smile on my face and carry on with my day. Life goes on! I learned how to deal with all these.

Neurological chronic Lyme disease (Neuroboreliosis) takes things to another level. Once the illness starts to affect your nervous system, you have to deal with a new ordeal of symptoms. Some of them are quite strange and bizarre, though not everyone gets to experience all of them in the same time. Some people have these sensations during a flare, a herx (Herxheimer reaction), while others have to deal with them on a daily basis. I count myself among the “lucky” ones who still have them.

When Borrelia Burgdorferi (the main culprit for Lyme) and Bartonella (co-infection) are hijacking your nervous system, you get to experience some unusual sensations, unknown before, like:

  • crawling sensation – a creepy feeling that something is crawling around on or under your skin, throughout your body
  • freezing or burning sensation
  • buzzing or vibrating – better described as a TGV train passing through your body making each single cell vibrate
  • numbness
  • tingling (mostly in the limbs) – being pricked at once with thousands of needles. It does not feel anything like acupuncture. It is a totally different sensation.

How can I translate into words the burning sensation? Imagine that you went to the beach and got a severe sunburn which is making your body and skin ache. What do you do? You avoid touching your skin in order not to feel the pain or the tingling burning sensation. Now try to picture how it feels applying a frozen ice cube on your skin, all over that area that just got sunburnt. I am sure you just shrug your shoulders trying to visualize it. This is the best explanation I could come up with for the burning under my skin. Only difference is that it feels that way throughout the entire body. Some days it might shift from one area to another and it can change its intensity.

The weirdest sensation is when I experience this burning on my head. Generally when you have neurological Lyme (Neuroborreliosis), you get the “privilege” to feel it. That is a bit different. It can feel like you have a slug or an army of ants moving slowly, leaving an icy trail on your skull.

After reading about my daily ordeal, next time you meet someone touched by an invisible illness, please don’t tell him he looks good or healthy! Refrain from saying something that would make him feel worse. Try to be creative. Make an effort and come up with something new!

This post originally appeared on A – Z Lyme.

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