10 People With Disabilities Share Their Secrets for a Successful Relationship

Valentine’s Day is upon us and love is in the air! But for many people with disabilities, finding a loving and supportive partner can be a challenge. Finding love with a disability often means overcoming society’s judgments about what makes a person attractive and sexy. Joyful images of roses and romance contrast with the knowledge that the disability community faces disproportionately high rates of domestic violence. But when we look beyond all that, we can see plenty of reasons to be hopeful.

Society is beginning to recognize how much people with disabilities have to offer in all aspects of life — as employees, volunteers, friends, parents, lovers and partners. People with disabilities do find love, and have relationships and families, just like everyone else. Some of us partner with able-bodied people, while others choose another person who has a disability or chronic illness — and both options are valid. What matters is finding the right person who will love us for who we are — someone who doesn’t ignore or disregard our disabilities, but sees them as just one part of us.

We asked Mighty readers on social media to share their love stories with us, how they met their significant other and their tips for sustaining a strong relationship when one or both partners has a disability or chronic illness. We noticed many common threads: honesty, good communication and the recognition that relationships aren’t something to take for granted. Loving someone, disabled or not, requires hard work and commitment. Here’s how 10 couples have lived and loved with disabilities.

1. Be Honest About Your Disability

“My story is unique. I had severe rheumatoid arthritis for 6 years before I met my husband in 2004. I work full-time and was [employed] at the time. My RA affects all aspects of my life even though it is under control. However, I didn’t know if I could have kids and germs are a serious issue. I was completely honest in my online profile and he wasn’t afraid. Life isn’t always easy but he is an amazing  husband and father to our kid and husband.” –Stephanie DeNicola Turner

2. Have a Sense of Humor

Mario and Kim.“My fiancé Mario and I have been together for 15 years. We both were born with a condition called spina bifida. We met playing wheelchair basketball in a class at our local community college, two years before our first date. It is by far the best relationship I’ve ever been in… we are, above all else, best friends. We have so much in common it’s almost scary, we have inside jokes between us, and always laugh when we’re together. Most importantly, we are each other’s rock. We’re always there when we need each other, and we can talk about anything and everything.

Two years into our relationship, Mario had to go on hemodialysis three days a week. Since then, we both have spent time in and out of the hospital, sometimes with long recovery periods. We joke around about taking turns in the hospital, and how we sometimes skip our turn, because the other goes in back-to-back. One of the many things Mario has taught me is to keep a sense of humor. He always makes me laugh. The other thing I’ve learned from him is to have patience and appreciate the little things in life. He’s the most amazing person I’ve ever met, and I feel so blessed he chose me as his life partner. It makes me angry that we cannot get legally married. Mario has to keep his MediCal, and his only source of income due to not being able to work. But the one thing the government, nor anyone else, can’t take away from us is our deep love for each other. Our commitment to each other, through the good times and bad, is the most important thing in our lives, and I know in my heart that will never change.” — Kim Ezell

3. Your Family Is Your Rock

Lora with her husband.“My husband and I have been together 33 years. I had polio at the age of 3. I walked with a limp for the majority of my life until [I developed] postpolio syndrome around the year 2000. I’ve been using a wheelchair since, and have had four surgeries since 2011. My husband is my rock and my family are awesome people who care for me with all the love in the world.” — Lora Duguay

4. Love With All Your Heart

Lorna Elaine with her husband.“I have been with my able-bodied husband for almost 30 years. I have peroneal muscular atrophy (CMT) and have never been able to walk normally. We met at 19 and 20 and were married 2 years later. I was told that having children would put me in a wheelchair. We had four and I am still standing. My husband loves my soul. He has seen me through many challenges both physical and emotional and is the finest person I have ever known.My advice is to do as he does – to love the soul. To love with trust, vulnerability, and complete abandon because life is short and the opportunities for real love are few and far between.” — Lorna Elaine

5. Take Care of Each Other

Courtney with her husband at their wedding.“I married my husband in 2015, after knowing him since eighth grade. He knew I was disabled, with many chronic conditions including fibromyalgia and PCOS, and a few mental illnesses. I knew he was disabled due to prior cancer treatment making him lose ribs and parts of a lung, and with PTSD. We also found out later he has fibromyalgia. The best advice I can give is to help each other as often as possible, help each other get dressed, bathe, help each other emotionally with little things, get each other coffee or something when the other is having a bad day, get them their favorite chocolate or let them sleep in. Love each other and communicate about any issues your having physically or mentally that day, make each other smile, be their friend and their caregiver when needed, and it will all work out.” — Courtney Heathfield

6. See Each Other’s Strengths

“My girlfriend reminds me of my strength and beauty during these hardest days. She recognizes my pain, but convinces me of my worth, and affirms that the weakness my disability causes is also the root of my deepest strength. She tells me often how much she admires me for my resilience, and always assures me that I am perfect in her eyes – disability and all.” –Ashley Burnside

7. Don’t Settle

Alexandria with her partner Connor.“This is Connor and I. We’ve been together two and a half years. I was born with a yet-to-be-diagnosed rare disorder that affects my muscles and joints — my muscles are very tight and I lack a lot of ability to bend. I also have rheumatoid arthritis and fibromyalgia. For me, the most important thing was finding someone who is compassionate and understanding; someone who doesn’t see my physical disabilities when they look at me, but me as a person. Communication is a big part of the relationship too. You need to find someone you feel comfortable asking to help with the things you can’t do, whether it be putting on your socks or standing to wash dishes. My best advice is to learn about communicating effectively, don’t settle for anything less than you deserve and don’t be afraid to go out and try to meet someone. There is someone out there who will love every part of you just as it is.” –Alexandria Pattie

8. Relationships Require Hard Work

Laura with her husband.“I was diagnosed with relapsing-remitting multiple sclerosis (RRMS) three months before our wedding date and right as my temporary field research position was ending and I was losing my medical insurance. After the doctor gave me the diagnosis, I went to my then-fiancé’s office to tell him the news. I told him I completely understood if he didn’t want to get married, and I wouldn’t judge him for it. He laughed incredulously and gave me a big kiss and said, ‘Let’s get married at city hall tomorrow so you can get on my insurance.’ So the next day we got married in secret and then still had our big wedding a few months later. We’ve been married for seven and a half years and together for 14 (since I was 19 years old). MS has put a wrench in some of our plans, but it has taught us how to be good communicators, how to be supportive and still care for ourselves, how to find the good in every day. I am beyond grateful for this wonderful partner in life, not because he loves me in spite of MS, but because he loves me and I love him.

My advice for any couple, whether or not one or both of them is ill or disabled, is to not take your love and relationship for granted. Long-term commitments require work and honesty and compromise. If you ever feel that you’re not communicating properly or not getting your needs met, don’t let it slide and hope it gets better. Address the situation and put the work in to remedy it. Couples therapy is not a dirty word. Just like your car needs an oil change and tire rotation, your relationship will need maintenance as well.” — Laura Jones

9. Love Is a Gift

Felix and Denis.“I have invested my life in the search for love and that gift was given to me 18 years ago when I met Denis. He quit his job and has been taking care of me. He does all the things I can’t do anymore. He feeds me, bathes me, dresses me, grooms me and I’m very well taken care of.

My family is very understanding and supportive of my health condition. I still have a few very close friends. I also have the conviction that in the moment of truth, when it will be time to say goodbye, there will be living angels holding my hand, giving me the peace I need to depart happily. Meanwhile, I live and keep on fighting.” –Felix Garmendia

10. Your disability or illness doesn’t have to define your relationship.

Christine and Thanh at their wedding.“My husband, Thanh, and I got married before I ever got sick. We’d been married for over a year when I first got MS symptoms, and almost two years by the time I got diagnosed in January of 2017. We’ve been together since 2009. We met working together when I was 17 and he was 19. I don’t think it’s much different since my diagnosis — all couples have their issues, and MS is just something that we work through together just like anything else. My advice would be to be patient and kind to one another, and to do your research! Also, always talk about what’s bothering you, illness related or otherwise. Communication is even more important when an illness is involved. Other than that, my only advice is to not let an illness or disability come between you! A person isn’t defined by an illness and a relationship shouldn’t be, either.” — Christine Yvonne Hoan

Full Source: disableddatingclub.com

A Valentine’s Day Letter to Crohn’s Disease

Yes, you read that title correctly. I used the words “Valentine’s Day” and “Crohn’s disease” in the same sentence. I’d be lying if I said I would have been able to do that years ago. Hate would have been a more relatable feeling and word. As Valentine’s Day approaches and love is in the air, I’m choosing to look at my disease with my whole heart and to share my feelings with you.

If it weren’t for my Crohn’s I wouldn’t know my strength.

If it weren’t for my Crohn’s I wouldn’t have my perspective.

If it weren’t for my Crohn’s I wouldn’t know the meaning of a “feel good” day.

If it weren’t for my Crohn’s I wouldn’t be able to empathize with others on the same level.

If it weren’t for my Crohn’s I wouldn’t be able to see people’s true colors.

If it weren’t for my Crohn’s I may have ended up marrying a person who really wasn’t about being with someone in sickness and in health.

If it weren’t for my Crohn’s I’d feel invincible and take my health for granted.

If it weren’t for my Crohn’s I wouldn’t be me.

In life there are triumphs and there are challenges. There are stresses and there are successes. There are highs and there are lows. I find embracing the good, the bad and the ugly enables us to reach our potential. The painful, low points are difficult in the moment, but in hindsight they push us to our limits and show us all what we are capable of.

A photo of the writer holding a heart with "Crohn's" written above it.

People often ask me if I wish I didn’t have Crohn’s disease. I find it to be a loaded question. I’ve gotten to the point in my patient journey where I wouldn’t change a thing. So much of taking on this chronic illness is your attitude. There’s no sense in wondering and wishing for something that is not possible. Once you take a deep breath and stop living in your healthy past, you come to realize that you were given this hand of cards for a reason.

Your voice, your experience, your journey has the power to inspire. You have the ability to change lives. You have the opportunity to show that invisible illness and everything that comes along with it doesn’t need to destroy your dreams.

While I know some days, weeks and months are going to be treacherous in this journey, do yourself a favor and stop being so hard on yourself. Love yourself. Love all of you. Even the part of you that is broken on the inside. I’ve been through the flare-ups and the scares. I’ve overcome pain that causes me to pass out. I’ve weathered the storm of being wheeled into surgery. I’ve done hundreds of injections and blood draws and pokes and prods. At the end of the day, you rise. You take those steps to heal. You focus on getting better. You do all you can to make it through. Crohn’s and any chronic illness for that matter gives you this opportunity over and over. So, while we all tend to have negative feelings about our health and worry about what the next hour will bring, try and pause and stop for a moment. Think about all the beauty and insight it’s provided — and love yourself and your disease for a second.

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

Full Source: disableddatingclub.com

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.

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

Full Source: disableddatingclub.com

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 AlanTellez.com.

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

Full Source: disableddatingclub.com

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.

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