Susie

@srhosterman | contributor
Susie is an artist, photographer, and writer who has struggled with depression, anxiety, and eating disorders throughout her 30 years on Earth. In 2012 she became chronically ill with functional movement disorder. She also discovered she has narcolepsy with cataplexy. Ask her about her wobbliness, bendy joints, autoimmune irritations, and German Shepherd puppy: all of which consume her attention on a daily basis! Susie is passionate about mental health and chronic illness advocacy and has a YouTube Channel that addresses many chronic illness concerns at @herartisheart .
Community Voices
Community Voices

Can you keep crying during #Cataplexy #Narcolepsy

Hi. So far, I've been diagnosed with type 1 #Narcolepsy (without cataplexy.) Yesterday I had a scary experience, and I wonder if it was cataplexy? I was upset and crying. First, I couldn't stop crying for a very long time, even though I wanted to and my body was exhausted. Second, I couldn't get up off of the floor. Every time I tried, I kinda collapsed.
So: can you keep laughing or crying during cataplexy? Does this sound like cataplexy to anyone?

1 person is talking about this
Alessia Cesana

Why This ASICS Runkeeper Ad Is Offensive to People With Disabilities

I confess I have a bad habit: one of the first things I do in the morning is to wake my brain with my phone’s blue light by checking my emails. This morning, one of them read: “What excuse is standing in your way?” It was from Runkeeper, the ASICS running app, for which I signed up a while ago. What woke me up was not just the light, but the anger I felt at the message. I used to be a volleyball player. I’ve never been one for long-distance running, but I have an enviable sprint that once shocked a gym enthusiast friend when we were running to catch a bus together and I was ahead by a considerable distance, saving the day. About four years after my arthritis diagnosis, I have decided to train for a 5K as a way to challenge myself and raise money for a good cause. That’s why the app ended up on my phone. I never expected it to be easy or pain-free, or to run it fast instead of more like a relaxed jog or speed walking (easier on my knees, after all), but I know I am one of the lucky ones when it comes to managing the disease. I feel fortunate not to need to be on multiple drugs to be able to do the basic things most people take for granted. My training for the 5K was interrupted, though, by two consecutive years with severe chronic bronchitis. If I were to “outrun my excuse” (the slogan on the image that appears upon opening the email), I could face severe, even fatal consequences. While exercising is recommended as a way to improve your breathing after the symptomatic phase has passed, vigorous aerobic exercise such as running appears discouraged in every article that comes up from a search for “running with bronchitis” on a famous search engine. One might dismiss my concerns with the language used by saying I was not the intended target market. Clearly, as the email goes on, they’re thinking of people who say they are too busy or have no running buddies. That’s fair enough, but it’s still an ableist comment to open by talking about excuses and saying “There’s always a reason not to run. But with a 50 percent off our a Runkeeper Go subscription, you’ll have more tools to rise above your excuses. What’s stopping you?” You see, I very much consider myself their target market. I still want to tick off the goal of running a 5K off my list, and I would have considered the offer if it hadn’t been put in such shaming terms. They could have said it was a New Year’s offer for people who haven’t used the app for a while, or something about a present to ourselves after a season of gift-giving to others. They could have talked about kickstarting 2020, or go along the lines of the corny “new year, new me” messages. Even an offer to take my running to the next level would have felt less like rubbing salt on a wound. The fitness industry is not well-known for its inclusivity, but it should be. While some people truly cannot exercise because of their health, everyone else can benefit from some movement commensurate to what they can safely do. Research into fat-shaming has shown us inspirational messages that do not shame people are more effective at achieving the goal of motivating them to act. The same principle translates to fitness. Not only are shaming messages like this email ableist, but they’re also ineffective at supporting everyone regardless of their ability. Instead of accusing people of making excuses not to run, ASICS could have chosen to uplift the demographic that is not already committed to their product. British gym chain PureGym has been very successful as sending out positive messages. All their emails trying to make people re-join the gym use neutral messages about restarting a fitness journey, and they’re all about what’s on offer rather than anything about your choices. They showcase a diverse range of members’ testimonials, and share articles about how they can help you, whatever your ability. The pressure to sign up is all in the time-sensitive nature of the offer, and not in making you feel guilty. It really isn’t hard to craft a marketing message that isn’t ableist but instead uplifting and motivational for all. Badly done, Runkeeper, badly done.

Katie K.

Responding to 'You’re Too Pretty to Be Disabled'

Recently, a guy told me that I was “too pretty to be disabled.” It’s something I’ve heard before and something I think most disabled women have heard before. This statement is quite possibly one of the most annoying things I have ever heard. Telling someone they’re “too pretty to be disabled” is offensive, at least to me and some of my disabled friends. It’s as if you think disabled people can’t be “pretty.” What does disabled look like to you? Do you just see one thing? Disability affects us all in different ways. It changes some of our appearances, and others it doesn’t. It isn’t a one size fits all. I have many disabled friends and they’re beautiful, both inside and out. Disabilities included. Our disabilities are a part of us and that’s one thing that will never change.

Daily Tasks That Are Harder for People With Joint Hypermobility

Having a chronic illness can make simple, daily tasks extremely hard – just getting out of bed is often a hassle. But when you have Ehlers-Danlos syndrome and your joints are subluxating, or partially dislocating, these tasks may seem impossible. “People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin,” according to the Mayo Clinic. As those with EDS know, this can cause a lot of pain. I have witnessed my best friend, Hannah, struggle through her daily tasks for years because of her hypermobile EDS (hEDS). I have seen her cry in pain because her shoulder has subluxed while brushing her hair. I have seen her lie on the floor because she cannot muster the strength to make it to the bed, all because of her hEDS. We wanted to show fellow hEDS warriors they are not alone in their struggles, so we decided to reach out to our Mighty community and find out which daily tasks they struggle with, and what these tasks are like, because of their hEDS. To all those living with hEDS, you are not alone. We see you, we hear you and you are stronger than you know. Here is what our community shared with us: 1. “Hand washing dishes. It’s so hard to prevent my fingers from hyperextending and hurting me later. Same reason rubbing in skincare products is a pain.” – Ansley M. 2. “Bending down to pick stuff up immediately dislocates my hips and knees. Trying to shave my legs is a pain because maneuvering to reach everything pops them out.” – Unity M. 3. “Sweeping my floor. After a while my shoulder and elbow start to sublux and roll around causing pain.” – Alexandra B. 4. “Putting on a pair of shoes can sublux my knee caps.” – Sarah S. 5. “Having a bath, getting in and out of the bath is nearly impossible sometimes as my hips and knees aren’t stable enough to step over the side and my shoulders can’t lift myself back out.” – Abi H. 6. “Going down steps! My ankles and knees can lock up or give out so the last steps can be a rapid, painful descent. My SI joint and hips sublux easily too and this is really painful. Sharp stabbing pain in the area with tingly aches all around. Sometimes it goes back easily, other times it can be days and sleep is then difficult.” – Louise M. 7. “Preparing a whole meal. Lifting pans, scrubbing potatoes or grating cheese, whisking or kneading etc. etc. Sweeping or mopping and vacuuming.” – Vanessa B. 8. “Trying to put my bra on with ribs and shoulders that subluxate.” – Heather E. 9. “Napping/sleeping. It’s extremely difficult to get comfortable and very common to wake up with dislocated joints.” – Sarah B. 10. “Writing. I’m in college and taking math courses so a laptop isn’t an option. Between my fingers locking and dislocating, it makes for a very painful set of homework problems.” – Kourteney K. 11. “Standing up from a seated position. It’s like a game of Jenga, will a joint pop out, or will I just crumble on the floor…?” – Charlotte D. 12. “Flossing my teeth, because the last joint of the finger I wrap the floss around tries to dislocate due to the pressure of the floss. Very painful and lots of weird sensations and sounds. Who knew even the simple act of flossing could be such a drama.” – Christina C. 13. “Sneezing. It makes me dislocate ribs so I have to physically push them back in place.” – Sage R. 14. “Drying hair. Trying to support or direct a hair dryer while also manipulating a hairbrush. The strain on various joints is very painful and even if you are lucky enough not to dislocate completely (I don’t) the hyperextension it causes pinches nerves, causes numbness and weakness in the hands, pain and weakness through the shoulder and elbow… the list goes on!” – Corinne S. 15. “Opening bottles, opening cans (once injured a rib while opening tuna…) carrying things with my hands, opening some doors… a lot of opening/closing actually.” – Mar M. 16. “Loading the dishwasher. It tires out my SI joints and then my back starts hurting so bad that I can’t stand anymore.” – Amanda W. 17. “Getting ready and getting dressed is so hard sometimes when my fingers hurt. Everything from washing my hair, to holding a hairdryer, to putting on pants makes my fingertips sublux. By the time I’m ready, I often feel so worn out and pained that I feel like I need to rest again already. I’m the kind of person who loves feeling put together with hair, makeup and clothes but the pain makes it so hard now.” – Meg S. 18. “I can’t do anything where I have to look down for more than a minute or two. So no dishes, no giving my kids a bath, no cleaning floors etc. If I do, it will be days or weeks of inability to hold up my head, awful neck pain, horrible headaches, nausea, dizziness, etc. It’s awful.” – Jennifer G. 19. “Reaching for anything, especially if I’m reaching overhead at an angle. It will almost always make my shoulders sublux. It makes my arms feel like I’ve got heavy weights in my hands. Both shoulders sublux, too, so it’s frightening to not be able to use either arm.” – Kathryn M. 20. “Pushing buttons. The microwave, pushing down the flusher on the toilet. I have to do it differently because my fingers bend alarmingly.” – B. N. D. 21. “Cutting my food. My finger joints bend backwards and I can feel my tissues stretching too far and the joint coming apart. It feels like my fingers are breaking… Think of bending each joint in your finger as far back as you can take the pain, then think how it would feel if you had to push two or three times as far. All day every day.” – Jill D. 22. “Cooking. It feels pointless. By the time I’ve managed a half assed meal, I’m too sick or in pain or exhausted to eat.” – Gaye D. 23. “I have hEDS and it restricts my walks with my dog. I struggle to lose weight and I have high pain levels. I find this thoroughly depressing, as I do feel like my life isn’t how it used to be anymore. I have become less and less active instead of building up fitness levels.” – Jude M. 24. “Wiping myself after going to the bathroom is by far the worst and such a huge thing that people don’t even think about. My fingers, ribs and shoulders sublux so sometimes I am crying in pain in the bathroom stall just trying to clean up. It’s embarrassing to talk about and embarrassing to be the woman in the stall crying out loud because of pain. It takes a lot of energy to do just that simple task.” – Andie W. 25. “Getting dressed. Seriously! I can’t count the number of times I’ve dislocated or subluxed things just by getting dressed for the day. Thank God for days I can stay in my pajamas.” – Kari R. 26. “Ugh. It’s easier to list tasks that are easy to do. That list is far shorter.” – Hope S. If you have joint hypermobility and have struggled to do a basic task, do not feel discouraged. You are not “weak” or “lazy,” you are a warrior living through pain that others cannot even fathom. What’s an everyday task you struggle with because of hypermobility? Let us know in the comments below!

Family Privacy and In-Home Medical Services

After a fairly typical morning of physical therapy, then a visit from the palliative care team, immediately followed by an oxygen tank delivery, I finally closed our front door and briefly contemplated installing a revolving door before remembering they aren’t stroller or wheelchair accessible. Our condo’s front call box rings to my phone and this happens so frequently that our dog, Tabasco, now associates my phone ringing with someone coming into the house. Every time my phone rings he runs to the door barking and scratching, waiting for the visitor that has obviously arrived with the direct intent of providing him attention. He is visibly disappointed when it is an actual phone call. Pavlov fail. As part of our morning routine, my daughter’s nurse and I discuss what appointments she has for the day. Even though I’ve cut back significantly on her therapies over the last year, she is still a busy little girl. At one point we were traveling 45 minutes for bio-feedback therapy and another 45 minutes for hippotherapy — all in the same day. Then on another day we would go 20 minutes to an amazing therapy clinic that had every piece of equipment under the sun. As my daughter has grown more and more medically unstable, extended drives in the car no longer feel safe. At this point, we only utilize services that can be offered in our home since the less transport the better, both for her health and my mental health. Quick break here to note that I love that everyone is able to come to our home. Not to mention, that without my daughter’s nursing army I would have mentally, physically and emotionally combusted by now. This is definitely the best option, but its just another way our medically complex “normal” is different. For most people, home is their private space, a place where they can be their true selves with all pretenses removed. Imagine waking up in the morning, yesterday’s mascara that you didn’t get entirely off the night before smudged under one eye, braless, in your PJ’s, pre-coffee, and maybe you’ve brushed your teeth. You walk out of your bedroom and are greeted by the cheerful night nurse ready to give you a verbal medical report before she heads home for the day. When we had our first night nurse, I made sure I was mildly presentable before leaving our bedroom in the morning, both out of vanity and courtesy. This lasted all of a week until I relented to usual habits. I mean it’s early and the coffee isn’t event brewing yet — let’s be realistic here, people. If I’m completely honest, I’m doing well if I’ve added a bra by the time our day nurse arrives. We’re all women, so it’s cool, right? Please tell me it’s cool. When my husband enters the room with his long curly hair all astray, looking like he wandered in off the street, I decide it’s cool. To provide the best care for our daughter we have invited the world into our most sacred of domains, our home. Perhaps, that is one reason that it is so easy for me to share in my blog. On any given day, complete strangers have seen our baskets full of clothes, toys and shoes strewn throughout the room, dishes in the sink, and a garbage bag by the door needing to be taken out. All the things you scramble to tidy and hide when you know you have guests coming over. We’re not slobs but our home is lived in, because we live here, and as a result our proverbial and not-so-proverbial dirty laundry is out for all to see. Keeping our home guest-ready 24 hours a day ain’t gonna happen with a dog and two children (three if you count my husband). Of course, I can’t bring any of this up without commending the nurses, therapists, social workers and technicians that bear the sometimes awkward responsibility of coming into other people’s homes. This bizarre reality is a two way street and, oh, the tales I imagine they could tell. Somehow, I think my empty wine bottle(s) and husband’s dirty socks are the least of these horror stories. I still have occasional moments of vanity or embarrassment, but not nearly as often as I once did. Living and growing with my daughter over these last nearly four years has humbled me in ways I can only begin to describe on these pages. For example, I never used to leave the house without make-up, but you know what? My daughter’s medical team has seen me without my face on and they didn’t turn to stone, so chances are no one at the grocery store will either. We do attempt to keep some semblance of privacy by keeping our master bedroom and bathroom off-limits for any of my daughter’s guests. It’s a small sanctuary from the beeping machines and general coming and goings. There I know I wont be disturbed… well, until my son throws open the bathroom door while I’m sitting on the toilet. Ah, parenthood — isn’t it glamorous?

Unexpected Ways Chronic Illness Can Physically Change Your Body

Chronic illness comes with a lot of unexpected physical changes. Sometimes your chronic condition causes weight fluctuations because of a medication you’re on or because you’re unable to be as active as you once were. Other times, you could have scars due to surgeries or medical procedures you’ve had. You could also have changes in your hair or teeth because of side effects of your condition or medication. Whatever the changes might be, it can be a lot for anyone to handle. There are lots of ways your body might change due to chronic illness — and not all are bad! Regardless of how your body has changed, you may feel uncomfortable if the body you’ve had for decades suddenly doesn’t feel like it’s yours. And while your loved ones might not notice or say they care that your appearance has changed, it can still be an overwhelming and uncomfortable thing to process. Like it or not, physical changes are often a part of chronic illness. (In fact, they’re a part of life for everyone as we age.) However, it’s not often we talk about the ways our bodies can change, let alone share photos. It’s OK if you don’t love your body’s new look, and you certainly aren’t alone if you feel that way. To help demystify this experience, we asked The Mighty community to share some “unexpected” ways their bodies have changed due to chronic illness. Here’s what our community shared with us: 1. “The first photo is before everything. Then there was the shoulder surgery, the iron infusions, the cervical steroid injections and finally the ACDF surgery. In two years, I’ve gained over 50 pounds just from medication side effects and dealt with immobilization after surgery, steroid moon face and fluid retention from endometriosis. I look back at who I was and I don’t recognize her anymore. I try not to have my photo taken just because of my embarrassment over how my body has betrayed me.” – Samantha S. 2. “I can still fake a smile, even with the feelings and pain shaking my body to the core. Photo one is when I was training for a full marathon and went to the gym five-plus days a week. Photo two is me in my chair because I can’t stand or move at an accelerated speed due to Ehlers-Danlos syndrome. I tried to capture happy-ish photos for both, despite the fact that it’s not my usual feeling. Weight gain from meds, inactivity and eating my feelings. This body brought to you by invisible illness!” –  Robyn D. 3. “This was a surgery where they took a vein from my thigh to connect to my jugular vein. It was in hopes of getting blood flow to my head, but it collapsed. More scars for nothing.” –  Michael C. 4. “The first image shows me at 10st and a dress size U.K. 12-14. This was about a year before I started getting severe symptoms of fibromyalgia. The second image was taken about 2 years after my fibromyalgia diagnosis where I had gained 7 and a half stone and was a U.K. 20-22 dress size. I’d been prescribed all sorts of drugs and have experienced torturous pain, fatigue, depression and anxiety. I’m now fluctuating in between these two images. I feel my illnesses have really changed my body. I look like a different person in most of my photos.” – Carole-Anne R. 5. “I always wanted long hair. My hair is super thick and curly, so it takes a ton of work and there used to not be all the tools they have now. When I was in elementary school, I would wrap a towel around my head and pretend it was long beautiful hair. I finally had the patience and grew it out at the age of 47. When it finally was halfway down my back, I had to cut it off two months later. I have PSA and fibromyalgia. My hands will no longer cooperate. I now have a short bob cut. It’s cute, but I miss my long hair.” – Shelley F. 6. “I have several chronic illnesses but the one that has had the most impact on my appearance is my severe gastroparesis. This is a photo collage of me and my hubby celebrating our anniversaries. The top left is right before I got really sick and right after we got married. I was close to 200 pounds, but I didn’t know it! Then the bottom left is a year later where I was 30 to 40 pounds lighter And the ph oto on the right is our second wedding anniversary and I was down to 120 pounds. My weight has since yo-yoed, but this was the biggest and most drastic appearance change. At first, people congratulated me on my weight loss. I never knew what to tell them because the real answer was that “my stomach was paralyzed and I threw up the everything I ate,” wasn’t what someone wanted to hear…” – Amanda E. 7. “I used to have long pretty hair and was tiny and trim. Now my meds, autoimmune stuff and heart stuff have caused me to rock a cute short cut and I’m a bit fluffier. Also, my attire is different. I wear way more comfy clothes than before and a heart monitor on occasion. In the before picture, I was going clubbing and now that is a foreign concept [to me]. I get tired way more easily now so weekends are for rest.” – Jae M. 8. “Untreated chronic illness symptoms caused all my teeth to decay, to the point where they needed to be completely removed. I’m 24 and need dentures!” – Shandi D. 9. “Myself almost five years ago, and me last week, almost three years after fibromyalgia. I gained some weight, but honestly, I’ve become more humble. I really do miss having long hair and feeling confident in whatever I wore. But now, I love my t-shirts, sweats and yoga pants!” – Ashley P. 10. “I scar super easily. There are only four places that my insulin pump seems to keep my sugar levels to stay and that’s each thigh and each forearm. So when it gets to where I need to use my forearm, this is what is left. It gives me a lot of anxiety when it gets colder because they become very dark and people notice. No, I’m not a drug addict… I’m just trying to stay alive.” – Jerica W. 11. “I have Crohn’s disease. In the picture in 2015, I was healthy. By the beginning of 2016, I was sick and lost over 40 pounds in less than a month. I was put on Prednisone and gained more than 60 pounds. In that picture, you can really see my moon face. My now picture shows I’m in remission. I still have many battles and obstacles, but I have started to find a better balance.” – Chloe B. 12. “It’s not much, but it bothers me so much. My face has become blotchy and in some spots [it’s so] dark that it makes my face look like I have a mustache. You can’t tell how bad in this photo, but still.” – Christina U. 13. “My legs pool with blood when I stand up, accompanied by high heart rate up to 190 BPM. It makes me feel dizzy, have breathless tremors, sweating and more.” – Cheryl R. 14. “I’ve lost 100 pounds in the past year due to diabetes. I used to have curly long hair, but lupus completely changed that due to hair loss and unending various growth of the short lupus hairs. I’ve lost muscle due to both pain and diabetes. I’m lucky that I have a great cane that was made for me and a walker that an occupational therapist located. And although I have a tub bench, it’s very difficult to bathe and shower because keeping my arms up is hard.” – Jeannine A. 15. “I was diagnosed with Addison’s disease January of 2017. I was eight stone, went onto hydrocortisone immediately and fell pregnant three months later. I put on five and a half stone and after having my son in January of 2018, my steroid dose was reduced. Over the past 18 months, I’ve been using diet and Pilates to gradually reduce my weight so that I feel happy with my new look. I’m now on hydrocortisone, prednisone and fludrocortisone. I still have to wax a lot of facial hair, I still have a steroid hump at the back of my neck and my hair is so frizzy, it takes hours to straighten. But I’m getting there.” – Victoria D. 16. “Among a bunch of other symptoms, this is what happens to my skin now when I go out in the sun. I seriously hate having to be covered up head to toe in the dead of summer. I miss the sun.” – Heather J. 17. “I have gained 60 pounds in the last couple of years due to my illness getting worse and an increase in medication. My doctors tell me I cannot exercise and I don’t even feel like myself anymore. I get made fun of by family members and picked on for being ‘chunky.’” – Tiffany L. 18. “ I lived until 38 without a single scar. Active and healthy life. Now, after seven surgeries in six years, I have three large scars around my midsection, the newest being the pain pump they installed. I have two devices, pins, screws, rods and mesh all implanted. I gained 65 lbs. I don’t recognize my body anymore. It feels like someone made a bionic woman with lots of coding bugs and an embedded virus.” – Krista I. 19. “Me before and you can tell the after… Thanks, Prednisone. I also rarely smile because my teeth are so deteriorated from side effects. I’ve also gained weight and lost muscle mass.” – Rina G. 20. “The first two photos are of me pre chronic illness. I was working full-time as an RN, teaching Zumba part-time and taking care of my family (husband and six kids). The last photo is me now. I am unable to work, have gained considerable weight and battle an incurable and rare neurological condition (1 in 100,000). Now, I’m a professional patient battling a host of medical issues and have had a shunt implanted to attempt to manage my condition. Life can certainly change on a dime.” – Jennifer C. Physical changes can be difficult to deal with, but please know that you are not alone. If you are struggling, reach out to someone you trust or post a thought or question on The Mighty. Want to share your experience? Post a photo on The Mighty with the title “#Chronicillness Changed My Body.” #ChronicIllness changed my body. Looking for more on how chronic illness can change your body? Check out these articles from our community: When People Judge Me Because They Don’t Understand How Illness Affects My Weight The Side Effects of Chronic Illness No One Talks About This Is What a ‘Beach Body’ Looks Like if You Have a Chronic Illness I Never Thought Much About My Appearance – Until Illness Caused It to Change

Unexpected Ways Chronic Illness Can Physically Change Your Body

Chronic illness comes with a lot of unexpected physical changes. Sometimes your chronic condition causes weight fluctuations because of a medication you’re on or because you’re unable to be as active as you once were. Other times, you could have scars due to surgeries or medical procedures you’ve had. You could also have changes in your hair or teeth because of side effects of your condition or medication. Whatever the changes might be, it can be a lot for anyone to handle. There are lots of ways your body might change due to chronic illness — and not all are bad! Regardless of how your body has changed, you may feel uncomfortable if the body you’ve had for decades suddenly doesn’t feel like it’s yours. And while your loved ones might not notice or say they care that your appearance has changed, it can still be an overwhelming and uncomfortable thing to process. Like it or not, physical changes are often a part of chronic illness. (In fact, they’re a part of life for everyone as we age.) However, it’s not often we talk about the ways our bodies can change, let alone share photos. It’s OK if you don’t love your body’s new look, and you certainly aren’t alone if you feel that way. To help demystify this experience, we asked The Mighty community to share some “unexpected” ways their bodies have changed due to chronic illness. Here’s what our community shared with us: 1. “The first photo is before everything. Then there was the shoulder surgery, the iron infusions, the cervical steroid injections and finally the ACDF surgery. In two years, I’ve gained over 50 pounds just from medication side effects and dealt with immobilization after surgery, steroid moon face and fluid retention from endometriosis. I look back at who I was and I don’t recognize her anymore. I try not to have my photo taken just because of my embarrassment over how my body has betrayed me.” – Samantha S. 2. “I can still fake a smile, even with the feelings and pain shaking my body to the core. Photo one is when I was training for a full marathon and went to the gym five-plus days a week. Photo two is me in my chair because I can’t stand or move at an accelerated speed due to Ehlers-Danlos syndrome. I tried to capture happy-ish photos for both, despite the fact that it’s not my usual feeling. Weight gain from meds, inactivity and eating my feelings. This body brought to you by invisible illness!” –  Robyn D. 3. “This was a surgery where they took a vein from my thigh to connect to my jugular vein. It was in hopes of getting blood flow to my head, but it collapsed. More scars for nothing.” –  Michael C. 4. “The first image shows me at 10st and a dress size U.K. 12-14. This was about a year before I started getting severe symptoms of fibromyalgia. The second image was taken about 2 years after my fibromyalgia diagnosis where I had gained 7 and a half stone and was a U.K. 20-22 dress size. I’d been prescribed all sorts of drugs and have experienced torturous pain, fatigue, depression and anxiety. I’m now fluctuating in between these two images. I feel my illnesses have really changed my body. I look like a different person in most of my photos.” – Carole-Anne R. 5. “I always wanted long hair. My hair is super thick and curly, so it takes a ton of work and there used to not be all the tools they have now. When I was in elementary school, I would wrap a towel around my head and pretend it was long beautiful hair. I finally had the patience and grew it out at the age of 47. When it finally was halfway down my back, I had to cut it off two months later. I have PSA and fibromyalgia. My hands will no longer cooperate. I now have a short bob cut. It’s cute, but I miss my long hair.” – Shelley F. 6. “I have several chronic illnesses but the one that has had the most impact on my appearance is my severe gastroparesis. This is a photo collage of me and my hubby celebrating our anniversaries. The top left is right before I got really sick and right after we got married. I was close to 200 pounds, but I didn’t know it! Then the bottom left is a year later where I was 30 to 40 pounds lighter And the ph oto on the right is our second wedding anniversary and I was down to 120 pounds. My weight has since yo-yoed, but this was the biggest and most drastic appearance change. At first, people congratulated me on my weight loss. I never knew what to tell them because the real answer was that “my stomach was paralyzed and I threw up the everything I ate,” wasn’t what someone wanted to hear…” – Amanda E. 7. “I used to have long pretty hair and was tiny and trim. Now my meds, autoimmune stuff and heart stuff have caused me to rock a cute short cut and I’m a bit fluffier. Also, my attire is different. I wear way more comfy clothes than before and a heart monitor on occasion. In the before picture, I was going clubbing and now that is a foreign concept [to me]. I get tired way more easily now so weekends are for rest.” – Jae M. 8. “Untreated chronic illness symptoms caused all my teeth to decay, to the point where they needed to be completely removed. I’m 24 and need dentures!” – Shandi D. 9. “Myself almost five years ago, and me last week, almost three years after fibromyalgia. I gained some weight, but honestly, I’ve become more humble. I really do miss having long hair and feeling confident in whatever I wore. But now, I love my t-shirts, sweats and yoga pants!” – Ashley P. 10. “I scar super easily. There are only four places that my insulin pump seems to keep my sugar levels to stay and that’s each thigh and each forearm. So when it gets to where I need to use my forearm, this is what is left. It gives me a lot of anxiety when it gets colder because they become very dark and people notice. No, I’m not a drug addict… I’m just trying to stay alive.” – Jerica W. 11. “I have Crohn’s disease. In the picture in 2015, I was healthy. By the beginning of 2016, I was sick and lost over 40 pounds in less than a month. I was put on Prednisone and gained more than 60 pounds. In that picture, you can really see my moon face. My now picture shows I’m in remission. I still have many battles and obstacles, but I have started to find a better balance.” – Chloe B. 12. “It’s not much, but it bothers me so much. My face has become blotchy and in some spots [it’s so] dark that it makes my face look like I have a mustache. You can’t tell how bad in this photo, but still.” – Christina U. 13. “My legs pool with blood when I stand up, accompanied by high heart rate up to 190 BPM. It makes me feel dizzy, have breathless tremors, sweating and more.” – Cheryl R. 14. “I’ve lost 100 pounds in the past year due to diabetes. I used to have curly long hair, but lupus completely changed that due to hair loss and unending various growth of the short lupus hairs. I’ve lost muscle due to both pain and diabetes. I’m lucky that I have a great cane that was made for me and a walker that an occupational therapist located. And although I have a tub bench, it’s very difficult to bathe and shower because keeping my arms up is hard.” – Jeannine A. 15. “I was diagnosed with Addison’s disease January of 2017. I was eight stone, went onto hydrocortisone immediately and fell pregnant three months later. I put on five and a half stone and after having my son in January of 2018, my steroid dose was reduced. Over the past 18 months, I’ve been using diet and Pilates to gradually reduce my weight so that I feel happy with my new look. I’m now on hydrocortisone, prednisone and fludrocortisone. I still have to wax a lot of facial hair, I still have a steroid hump at the back of my neck and my hair is so frizzy, it takes hours to straighten. But I’m getting there.” – Victoria D. 16. “Among a bunch of other symptoms, this is what happens to my skin now when I go out in the sun. I seriously hate having to be covered up head to toe in the dead of summer. I miss the sun.” – Heather J. 17. “I have gained 60 pounds in the last couple of years due to my illness getting worse and an increase in medication. My doctors tell me I cannot exercise and I don’t even feel like myself anymore. I get made fun of by family members and picked on for being ‘chunky.’” – Tiffany L. 18. “ I lived until 38 without a single scar. Active and healthy life. Now, after seven surgeries in six years, I have three large scars around my midsection, the newest being the pain pump they installed. I have two devices, pins, screws, rods and mesh all implanted. I gained 65 lbs. I don’t recognize my body anymore. It feels like someone made a bionic woman with lots of coding bugs and an embedded virus.” – Krista I. 19. “Me before and you can tell the after… Thanks, Prednisone. I also rarely smile because my teeth are so deteriorated from side effects. I’ve also gained weight and lost muscle mass.” – Rina G. 20. “The first two photos are of me pre chronic illness. I was working full-time as an RN, teaching Zumba part-time and taking care of my family (husband and six kids). The last photo is me now. I am unable to work, have gained considerable weight and battle an incurable and rare neurological condition (1 in 100,000). Now, I’m a professional patient battling a host of medical issues and have had a shunt implanted to attempt to manage my condition. Life can certainly change on a dime.” – Jennifer C. Physical changes can be difficult to deal with, but please know that you are not alone. If you are struggling, reach out to someone you trust or post a thought or question on The Mighty. Want to share your experience? Post a photo on The Mighty with the title “#Chronicillness Changed My Body.” #ChronicIllness changed my body. Looking for more on how chronic illness can change your body? Check out these articles from our community: When People Judge Me Because They Don’t Understand How Illness Affects My Weight The Side Effects of Chronic Illness No One Talks About This Is What a ‘Beach Body’ Looks Like if You Have a Chronic Illness I Never Thought Much About My Appearance – Until Illness Caused It to Change

Community Voices

The worst day

#CheckInWithMe

I'm in my room. Each month this storm rolls in. I've seen doctors since 2007. Waiting for disability. Ironically denied a wheelchair recently and I can't even walk or stand. Bed bound. How can we deny someone help when they are crying for it daily?? I just don't understand. It's all too hard and I don't want to do it anymore. I have no purpose. Feels like no one is listening or interested in really helping me. Some days I want to help me, but today is a hard one.

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Nurse Speaks Up About How Suicide Is Discussed in the ER

As a nurse working in the emergency department, I frequently see people come in for suicide attempts. I’ve noticed there’s a stigma surrounding some attempts, and many colleagues agree there’s a difference in the way patients are treated depending on the type of attempt. From what I’ve seen, a patient whose attempt is more “serious,” with visible life-threatening injuries or potentially deadly pathology results, is more likely to be treated with understanding, compassion and patience. It’s as if serious injuries validate the mental illness, making the inner turmoil visible to the outside world. But the “less serious” the attempt is (for example, taking a non-lethal amount of medication or self-inflicted injuries that aren’t fatal), the less sympathy I’ve seen patients receive. This can also be said for patients who have repeat suicide attempts. I’ve heard these patients referred to as “ time-wasters,” “attention-seekers,” “ t aking up beds,” and they’re described as “crying out for help.” Although it’s acknowledged as wrong, there’s still anger and frustration felt towards the patient. I’ve heard many question the reason for their behavior. But I believe anyone who intentionally puts themselves in harm’s way needs help, regardless of the intended outcome, and are still entitled to be treated with dignity, understanding and kindness. When I was 23, I tried to jump off a cliff after being discharged from a psychiatric hospital. I have bipolar affective disorder . I rarely call this a suicide attempt, although I would’ve jumped if it weren’t for a person walking past. If that person didn’t talk me down from the edge I wouldn’t be here today. I didn’t end up in an emergency department that night; instead the person called the local psychiatric triage team for advice and made sure I got home safely. The next morning my psychiatrist arranged for me to have electroconvulsive therapy (ECT). I was determined to take my life. However, just because I didn’t end up in the emergency department didn’t make my determination to kill myself less serious. For weeks afterwards I remained suicidal. It’s because of my wonderful family and excellent psychiatrist I got through those weeks alive. According to the World Health Organization,  800,000 people die by suicide every year, and for every successful suicide there are many more people who attempt it. About 20 percent of people who die by suicide have made a prior suicide attempt. But the  stigma attached to suicide can be isolating and discourages help-seeking behaviors. When I was suicidal I was too embarrassed to ask for help from emergency services because I thought I would be judged. That night I stood on the cliff, dying seemed like the only way out. Like a lot of suicidal behaviors, the decision was driven by desperation and impulsivity. The method didn’t matter — only the end result. I was only seconds from death. By complete luck I survived that depression. In seems people are fearful if we talk about suicide we’ll trigger risky behaviors. But if we don’t talk about it, how are we going to understand it? If we don’t understand it, how can we be compassionate and empathetic? And if we don’t treat those at risk with compassion and empathy, how do we expect them to seek help? Most importantly, we need to make it known reaching out for help is one of the bravest and best things someone can do. I’ve heard nurses say it’s “heartbreaking” when patients die from a suicide attempt. But what’s more heartbreaking is how often I hear families say the person they lost had been “been unhappy for a long time’” or that “they tried suicide before.” We need to talk about suicide to offer people hope. The courage it takes to reach out must be recognized. Every suicide attempt needs to be taken seriously. People don’t kill themselves, mental illness does. The sooner we start understanding this, the sooner we can combat the stigma surrounding suicide. Decreasing stigma encourages help-seeking behaviors and leads to more widespread and compassionate treatment for those who need it. And this treatment needs to be available for everyone however long they need, not just for the people who end up with serious injuries in the emergency department. If you or someone you know needs help, see our suicide prevention resources. If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.