E. Prybylski

@e-prybylski | contributor
E. Prybylski is a writer/editor who lives in rural New Hampshire with her husband, dog, cats, goats, chickens and other beloved friends. She recently received her Ehlers-Danlos and fibromyalgia diagnoses after years of fighting to try and understand why she is in constant pain. Since then she has been readjusting to a quieter life than she once led, but it’s not all bad — more time to write!
E. Prybylski

Cleaning With Chronic Illness

For many people, housekeeping is an important standard of gauging how well someone has their life together. Those of us with chronic illness understand that housekeeping can feel (or be) almost impossible when you have no way of really keeping on top of things. We read books and watch shows like “Tidying Up With Marie Kondo” and sigh wistfully because we cannot imagine tearing everything out of a single room, putting it in a pile and then ever getting it put away again. The good news is that while those large cleaning sprees and major events might feel beyond our reach, if we look at the whole, there are ways we can declutter our lives and pare down on things we don’t need without undertaking the dreaded “spring cleaning” or purging everything at once. Here are some tips on handling housecleaning for those of us living with chronic illness: 1. Small Pieces Start your work in one place. Clean off your desk (I just got rid of some candles I’d burned out and hadn’t thrown away yet). Sort the papers you have on the kitchen table. Clean the stove top. Pick a single thing and really give it a go. If you want to do more than a single thing, use a timer so you don’t get carried away and throw yourself into a flare. Try 15 minute increments and evaluate (honestly) how you feel when the timer goes off. 2. Learn To Let Go This can be really difficult for those of us who are lower income or who struggle, but letting go of items that no longer serve you is important. The less stuff you have, the cleaner your space can be (and nobody has energy to dust off all the knickknacks). That isn’t to say you need to get rid of things you really treasure, but if you hold something and it doesn’t give you a thrill of joy, it may be time to let it go. While I might not use every aspect Marie Kondo’s method, this piece of advice really struck a chord with me, and I think it’s valuable for all of us. 3. Learn What Cleaning Products You Can Use For some of us (like those who live with migraines, allergies or asthma), specific cleaning products can cause awful reactions. One of my housemates is allergic to bleach, which means we have to be careful what we use to clean with. If you have issues with certain ingredients or scents, be careful what you purchase and learn what works best for you. Also, there are cleaning products that can make your life infinitely easier! For example, I have an extendable scrub brush I use for the shower so I no longer have to reach or bend. I can sit on my shower chair outside the tub and clean with far less misery than before. 4. Ask For Help Having a system of support is important, but it doesn’t do anything to help if we don’t use it! It can feel embarrassing to ask for help for things like cleaning your bathroom or doing your laundry, but if you get too far behind and feel overwhelmed, ask a few trusted friends (or family members) to give you a hand. Make a day of it and maybe buy a pizza as a thank you. You aren’t an island, and you shouldn’t feel embarrassed that you need help. 5. Don’t Worry About Perfection Real talk here — we are probably not going to have homes featured on HGTV pretty much ever unless we hire a professional to do it for us. Liberate yourself from the notion that you need to make your space neat as a pin. Instead, you want to make sure you have room to breathe and possessions you can manage with your current abilities. It’s OK if your living room looks like a disaster after a flare. I’m in the middle of a major pain flare right now, and my living space is a complete disaster. I haven’t emptied the trash, cleaned the cat box or done my dishes in almost a week, and it really shows. It’s tempting to beat myself up over it, but the reality is I can’t do any better. Be kind to yourself. What other tips do you have for cleaning that you’ve found helpful? Leave me a comment below. I’d love to see what helps you!

Having a Mental Illness Does Not Invalidate Physical Illness

I recently went to my doctor for increased symptoms of fatigue and pain leading to a major decrease in my activity. During the appointment, I asked some general questions to see if there were more treatments I could try, and I informed my doctor of my recent PTSD diagnosis. As soon as that cat was out of the bag, the tune of the appointment completely changed. Apparently no treatment but antidepressants would help me, and I needed therapy. I have a confirmed diagnosis of hypermobile Ehlers-Danlos syndrome with many comorbidities, and my PTSD diagnosis should not invalidate my symptoms. I am in therapy, and I have been for over a year. However, my EDS symptoms are increasingly worsening. Just because I have a mental illness does not mean that my symptoms are not real. I came asking for help, and instead I got discounted. I am not sure if this is common amongst other chronic illnesses, but I know it is especially prevalent in those with EDS. I have found more and more people with both PTSD and EDS due to the genetic predisposition of our bodies to overreact to stressors. If anything, our EDS sparked our mental illness. The mindset that some doctors have can be dangerous, and I experienced the effects myself. I believed what they said, and I started to ignore all of my body’s signals. I began snowboarding and rock climbing, which was fun at first, and I loved it. The more I went, though, the worse I felt during and afterwards. I began having difficulty driving, walking, participating in school and even standing up without falling. Because I ignored what I felt, I can no longer work many hours or attend school. I am hopeful that I will get back to that point again, but my specialists are not sure how long it will take if it is possible at all. It may take some searching, but I am going to find a new doctor who can look realistically at everything going on and truly listen. I am thankful for my specialists who are willing to help me try new things and suggest treatments. If you are in this same situation, or if you have been brushed aside because you have a mental illness that doesn’t explain your symptoms, please do not lose hope. There are doctors who understand and truly want the best for you. Keep searching until you find a good one, and don’t ever let them go. Listen to your body, and do what you know is best for you. You are allowed to say no to medication, and you are allowed to find someone who will listen.

Erin Migdol

21 Symptoms of Ehlers-Danlos Syndrome Called 'No Big Deal'

It’s a story so many people with Ehlers-Danlos syndrome can relate to: You experience a painful symptom, tell doctor (or friend or family member) about it and get “Oh, that’s no big deal” in response. Partly because EDS is still so poorly understood by medical professionals and the general public and, sadly, partly because many patients simply aren’t taken seriously, far too many EDS-ers can recount a time when someone brushed off one of their symptoms as “no big deal.” No one should ever be made to feel like their symptoms are “all in their head” or not worth investigating further. We wanted to raise awareness of the kinds of symptoms people with EDS present with that are often brushed off — but are actually signs of the condition and should be taken seriously. So we asked our EDS community on Facebook to share a symptom they experienced that was dismissed as “no big deal.”  If you’ve ever experienced these symptoms, know that your pain is valid and deserves to be addressed. Here’s what our community shared with us: “Chronic wrist and elbow dislocations and easy bruising. I would tell doctors about these symptoms and they would just say ‘oh that’s impossible, you don’t have any trauma’ or ‘you’re just clumsy, be more careful.’” — Christa R. “When I had growing pains, it felt like my body was being torn apart. But since I’m female, they brushed it off as being overdramatic, and also asked if I was on my period once. It gets extremely frustrating when doctors don’t listen.” — Tiffany B. “My hypermobility. I was told that I was just very flexible, that I should be thankful and try out for gymnastics, or that it was odd but no big deal.” — Julia O. “I needed surgery as a teenager because my jaw had dislocated so many times that the hinges wore out. I also needed braces and my orthodontist said he’s never seen such a high arch. Alarm bells should have rung when after years of jaw and dental work my teeth returned to their old position.” — Lidia K. “Lots of stomach issues. I was told to ‘eat more fiber’ and to use Metamucil three times a day. Too much fiber makes me bloated and makes things much worse.” — Karla D. “Chronic and severe joint pain. My doctor always told me it was in my head because there was no proof on imaging.” — Brittany A. “The fatigue. Now I know we all feel like this!” — Hiu Y. “ I’m 10 months postpartum with my daughter and I am still working on correcting my alignment from being pregnant. It has taken this long for doctors to stop considering my hypermobility and pain a ‘pregnancy thing.’” — Tab M. “My ankles would just pop and give out. I was told I needed to see a therapist because talking about feeling might make the pain go away.” — Sarah B. “I had a doctor (youngish, so fresh out of med school) tell me that all EDS is is being double-jointed. It’s no big deal. She said, ‘My husband has EDS, it’s no big deal.’ So to her, EDS itself is nothing at all.” — Rebecca R. “The constant dislocations and falls. I was told it was just balance issues and need to learn balance myself when I walk. Really? Turns out EDS caused complete hearing loss in left ear and knee joints were completely unstable causing four breaks.” — Akamai K. “I had heart issues my entire life. My heart rate would shoot up upon standing and plummet randomly. I had multiple issues resulting in four cardiac ablations, open heart surgery and a pacemaker and several other health issues and never once did a doctor ask or wonder why?” — Misti M. “My extreme lack of balance. Had to fight for a long time for a cane, during which I injured myself many times just from falls.” — Tiff W. “ I was told I couldn’t walk as a young toddler because I ‘just preferred to be carried around instead.’ My doctor assigned a physical therapist to confirm this, but was shocked when my PT informed him that I had hip dysplasia and extreme hypermobility. For the record, I didn’t actually like to be carried around.” — Brittany N. “Vertigo, temperature intolerance, trembling, and cold sweats out of nowhere. It started in my late teens. I recognized five decades later that it’s symptoms associated with dysautonomia and MCAD. Even with a hEDS diagnosis, the accompanying co-morbid conditions are completely ignored!” — Madeline M. “Being up all night as a young child having my mom rubbing my knees and legs from excruciating pain, and doctors telling her that it was just normal growing pains, no biggie, I’ll get over it, grow out of it… As my mom lost many many nights sleep staying up all night (she even worked full time) rubbing my knees and legs just to help a little to allow me to sleep so I could go to school…God love my momma…” — April B. “I was told the pins and needles in my hands and feet are hallucinations.” — Helen M. “Pain in abdomen (round ligament pain) during pregnancy. Was brushed off as ‘normal’ and ‘no big deal,’ as we later learned my round ligament with literally tearing and bleeding internally.” — Kayla D. “Constant dislocation in my neck.. It causes pressure headaches along with neck and shoulder pain. The doctor said he could give me shots in my head for the headaches and that was it. Completely ignored my neck problems.” — Dani L. “My daughter’s elbows subluxated and popped loudly and painfully, often, starting at age 10. The family doctor and the orthopedic surgeon chalked it up to growing pains. No matter my arguments, I was told I was wrong, it wasn’t a concern and that it was completely normal.” — Trish V. “Chronic fatigue and malaise, which for me is more like constant exhaustion. I would love for every doctor who has ever told an EDS patient, ‘Eat better, exercise more, lose weight, take this antidepressant and you will be fine,’ to suffer from chronic fatigue for a year. In that amount of time, I think they could then understand how debilitating chronic fatigue can be and how it impacts every part of our lives. Then I would remind these doctors of all the other symptoms that we are trying to deal with all the time, every day of our lives.” — Jamie E.

Lilly
Lilly @lillysal
contributor

5 Frustrating Situations When You're Young and Have Chronic Pain

Being a young person looks physically and mentally fit on the outside has its downsides. I, along with many other young people, live my life with invisible illnesses – both mentally and physically. I live my life every day in constant physical pain as a result of disc degeneration and nerve damage in my lumbar spine, which affects my hips and down to my toes. I have recently been told this pain is for life. Sometimes it feels the wider world forgets younger people can struggle with mobility and pain problems too. Because of this assumption, it can make you feel like you’re not entitled to struggle too. Here are five ways our struggles are real: 1. Public transport You have somewhere to be just like everyone else, but you can’t stand for the whole journey – yet the train or bus is busy, so you take the last seat or the one designated for the elderly and disabled. However, soon more people get on who are looking for seats, and they see you, a young person with no disability to be seen. To some people, you become the bad person. You are expected to give up your seat because you are young and you look just fine. The truth is, you aren’t fine. You are in pain. You are tired, you’ve taken medication to help you get through the day, you feel dizzy or “out of it,” and you have every right to sit in that seat. You need that seat and you know that in your heart, but they almost make you feel ashamed. When someone asks you to give up your seat, you don’t feel you can say no. How do you explain this to a stranger? If you say no, you are an arrogant young person. If you move, you have to endure the pain. Sadly, you usually feel guilt tripped into the latter. 2. University Lectures Sitting can be as bad as standing. As a university student, for a person without pain or mobility problems, sitting on seat with a millimeter of cushioning is hard. When you do have pain and mobility problems it can be torture sitting through a two hour lecture – even with cushy seats. There comes a point when you can’t take it any longer, but you can’t bring yourself to walk out of a room filled with people because then you become an object of attention. I get anxious at the thought of me limping out of a lecture in a room with 100 people who don’t know me. What if the lecturer says something? What if my leg gives way and I fall in front of everybody? It is because of this I struggle and fidget through the pain 90 percent of the time 3. Being Social Sucks Even with the pain, you still want to be with your friends and have fun. You are young, you should be having the time of your life. This means sometimes we push ourselves too much, simply just to keep up. It’s not your friend’s fault, but you envy their ability to be able to walk or run anywhere. You envy their ability to just go anywhere with no pain, and you feel bad sometimes when they change their plans to suit you. You may even beat yourself up instead of realizing how great your friends are for keeping you in mind. In the moment when you’re out with your friends you feel good – you’ve not let the pain win, and you are being young and having fun. But, you still have a nagging feeling you will regret it later, so you hold on to every funny moment to remind yourself it was worth it. 4. Convincing the Doctors I’m sure we can all relate to countless doctor’s appointments were you feel you haven’t been taken seriously. There’s frustration of walking out of the room and being told to “do yoga and Pilates” or “go for a swim.” When you are a teenager its growing pains or a pulled muscle. When you’re in your 20s it’s because you are slouching, because of your diet or not enough exercise. If you know something isn’t right, keep going. Don’t let the frustration or embarrassment win. You know your body better than anyone. I was told for two years my back pain was growing pains or chronic fatigue syndrome (which I did have, in all fairness). In reality, I had a slipped disc compressing a nerve that needed surgery. Three years after the surgery, that disc has now degenerated and cannot be fixed. I’m in constant pain and the nerve is still damaged. They didn’t expect it because I was young, but age doesn’t always mean there isn’t something wrong. 5. You Feel 70 at 21 The times when you can’t get out of the bed, you can’t get up or down the stairs, the times you can’t walk down the street – you feel like you have the body of an elderly person. Every day you do your stretches, you take your painkillers and you slowly walk or limp around. It’s hard to remember a time when movement was easy. You can’t possibly be the age you are with a body like this. You have countless doctor’s appointments, scans and medication reviews. Your bags and pockets rattle with tablets, you get judgmental looks when you take them in public, and sometimes a stereotype may be assumed that your pills are illegal because of your age and appearance. You dread what you will be like once you do get to 70, but try not to think that far ahead. You have to take it day by day. Why did I write this list? It’s not very positive or uplifting. In reality, we can’t always be positive. Sometimes what we need is to find relief in seeing you aren’t alone, to laugh along as you relate with your own experiences. By seeing these things it emphasizes you aren’t alone, that you aren’t wrong for sitting in that seat, you aren’t being anti-social by saying no to your friends. The important thing is to look after yourself and your body. You can still have fun and you can still be taken seriously. Don’t let anybody make you feel ashamed for standing up for yourself and trying to make your life better for you – because a happy you is what matters. We want to hear your story. Become a Mighty contributor here . Getty image by GizemBDR

E. Prybylski

When You Have to Tell a Doctor They're Wrong

I have several rare conditions (all part of one constellation: Ehlers-Danlos syndrome), and as a result I am often a medical mystery to many physicians. Only one in 7,000-20,000 of people in the world has my condition, and many doctors are unaware it exists. Or, if they are aware, many don’t understand most of the details of it. For example, I recently went to an orthopedic surgeon to have a hip problem looked at, and he wanted to do a steroid injection into my hip. I had to tell him no. This left my husband and the doctor both staring at me for a second. He then went on to explain what steroid injections do and how they’re useful, and I said no again. He frowned. I told him about the dangers of that treatment along with my condition make it not something I’m willing to roll the dice on. Steroids, you see, break down collagen and can cause joint problems. I have enough of those, and my joints don’t need more help breaking down, thanks. He gave me the side-eye and said he’d call my rheumatologist. The next visit, he said my rheumatologist had confirmed my statement, and we’d move ahead with a different plan of attack on the hip problem. Which is fine. I am not upset with him for not knowing everything about Ehlers-Danlos syndrome, and he said he was willing to bet I know more because he sees two or three patients a year with my condition – and I live with it every day. I tell you this story because it’s indicative of many of my doctor’s appointments. Particularly with new doctors. I have had to advocate for my own safety many times and regularly tell doctors that I will not do their procedure or try certain medications because I know my body and my conditions. It’s an awkward thing, too, because doctors aren’t usually in a position where people tell them they are wrong and don’t know much about a particular subject. It has also led to arguments on more than one occasion. I’ve also had to find a new physician because I couldn’t trust the one I had, or because they were offended that I didn’t bow to their expertise and risk a procedure that could hurt me. The doctors I keep and love are ones who listen to me and hear what I say about what’s happening in my body. They might not know the answers all the time, but they definitely are willing to look and will hear me out when I tell them something about what’s going on, or if I say I don’t want to try something. When you have a complicated diagnosis like I do, the person who has to advocate most for your care is you. You cannot expect doctors to immediately understand or even listen to what you have to say. While I’m not telling you to disregard doctors’ orders, I do recommend researching your conditions and understanding them. That way, you know when to ask questions and not allow yourself to be pushed into things that you are not comfortable with, or that might hurt you. We want to hear your story. Become a Mighty contributor here . Gettyimage by: smalllike

E. Prybylski

Fighting the Stigma Against Chronic Pain Patients Who Use Opioids

I want to preface this by saying I do not take opiates. My husband takes them for chronic pain stemming from a debilitating injury to his spine. He cannot take NSAIDs due to having had stomach surgery and has no other options. He has done appropriate therapies and manages his opiate use well. He is not addicted. I have nothing for daily pain management because I cannot take NSAIDs or steroids due to stomach erosion caused by NSAIDs. I explicitly do not want opiate pain medication and do not take it. Pain is something everyone in the world is familiar with. We have all stubbed our toe or bitten our tongue or banged our shins on something or another. Most people know pain as transient – it comes, it goes. It doesn’t stay forever, even if it does stay for longer than we’d like. With that in mind, people with chronic pain face an uphill battle. With the war on opiates creating a hostile environment for pain patients, it is becoming harder and harder to be treated as a person who is in pain rather than viewed as a person who has a drug addiction. I face this stigma when dealing with doctors, pharmacists, strangers and even some friends. The number of times I have been treated as suspect because of pain is higher than I want to think about for too long. I sympathize with doctors who are under extreme pressure to avoid opiate prescriptions and who have encountered people with addictions just looking for a fix. I sympathize with people who have others in their lives who may be wrestling with addiction to pain pills or other sources. However, they need to stop projecting those experiences onto pain patients. Pain clinic physicians whose first words are, “I’m not giving you opiates,” should rethink that a little. It’s fine to not provide opiates if there are other means – I am 100 percent for that – but you shouldn’t lead the conversation with the assumption that the other person is addicted. Those of us with invisible illnesses like Ehlers-Danlos syndrome shouldn’t have to defend ourselves against people seeing to make us out to be the bad guys. Pain is a daily part of our lives, and sometimes that pain is horrible. Using that awful “pain scale” we see everywhere, my best days are a four while my worst days have topped out at nine and 10. Let me reiterate that I have nothing to control my pain. The pharmacy on my nightstand is mostly antacids and migraine medication along with a muscle relaxer for the days I have severe spasms. My husband’s opiate usage is limited to days when he could not get out of bed otherwise. He uses his painkillers when he has no other option and needs to function like a human being. And that’s what most chronic pain patients want. We know pain will be our companion forever. So many of us live our lives feeling like we’ve got the flu (and that’s on good days). We use our pain medication to keep us functional on the days when we’d otherwise be unable to function. It’s not asking too much to want to function. We want to hear your story. Become a Mighty contributor here. Photo via luchschen on Getty Images

Watching Mandy Harvey on America's Got Talent With Ehlers-Danlos

Last night “America’s Got Talent” shared with the nation an inspiring story of a young singer. A 29-year-old woman named Mandy Harvey took the stage and blew the judges away with her story and profound talent. Before she played her song, she explained to the judges that despite being deaf due to a connective tissue disorder, she has managed to make a name for herself in music. This story hit me harder than most other viewers. Not only did I sit at home watching with a connective tissue disorder (I have hypermobile Ehlers-Danlos syndrome), but I also was watching as an EDSer with almost complete hearing loss. Ehlers-Danlos syndrome is a very complex condition. This syndrome affects the formation of healthy collagen, and collagen makes up half of your body. This condition not only causes bendy joints or stretchy skin, but it causes complex issues in multiple systems of the body. Not many people realize that connective tissue disorders like EDS can cause issues such as hearing loss, but Mandy stood up on that stage and told the world the truth about connective tissue disorder. She told her story and shared her love of music in a beautiful way. I sit here writing this article blaring music, trying to hear the beat. All day I have been reading lips and asking people to repeat themselves as I honestly can barely hear anything. While my hearing loss is caused by buildups in my ear rather than nerve damage, Mandy’s story hit home. Her song and story made me feel less alone on a day when I felt like an outsider. Hearing loss is hard to deal with. Whether it is permanent or temporary, not being able to hear what people say is nearly impossible. I was fortunate enough to have learned how to read lips in the Sign Language Club that I started at my school, but most people do not have this useful skill. Even being able to read lips, I still miss a lot. I miss small words, side conversations, and most music. It is so incredibly frustrating to go around the world only catching half of everything that people say. For this reason, I am so incredibly grateful to hear about people like Mandy who have overcome hearing loss. Thank you, Mandy, for being brave enough to share your story on national television last night. It is people like you who give all of us with connective tissue disorders the strength to push through another day. Your story reminded everyone that it is a complex condition. It’s not all dislocations and bruising, but there are also other issues such as hearing loss. Thank you for bringing awareness to our condition, spreading your music with the world, and showing everyone that they can overcome any challenge. We want to hear your story. Become a Mighty contributor here .

E. Prybylski

Not Wanting Attention or Pity When Talking About Chronic Pain

I don’t “look disabled.” Most of the time. Unless the weather’s gone wild (and I live in New England, so that’s only an afternoon away) or I’ve somehow injured myself, I usually look like a healthy woman. Heck, I don’t even look my age – no one believes me when I tell them I’m over 30. While I won’t complain about the fact that most of my symptoms are clandestine enough to not warrant attention, it makes discussing my disability challenging, at best. Because I don’t look the part, and because I so often push through my pain with a smile plastered over my face, it’s easy for people to discount and disbelieve what I’m saying when I tell them how much pain I’m in. I mask very well, and it’s born of having a life where I needed to. I didn’t have much of a choice, since I couldn’t really show my pain to the world. I also didn’t want to, since with pain comes attention, and I really hate that kind of attention. I don’t want it. Most of it comes with a “you poor thing” sort of feel, and I don’t want that at all. In addition to that kind of attention (and often with it) comes this sort of feeling that I am somehow lesser because of my disability. If they believe me at all. And that’s a big if when my overt presentation of the conditions I cope with is well-hidden. The fact that I’m laughing doesn’t mean I don’t feel like my head is trying to tear itself apart with a migraine. Heck, I went out with my best friends to a midnight screening of “Doctor Strange” and laughed my whole way through it while simultaneously in the worst pain of my life. During that showing, my spine was out between my shoulder blades, and every breath, every wrong move and every turn of my head flooded my body with agony. On the one-to-10 pain scale, I sat at a solid nine, and I had been there for nearly a week. My friends knew how much pain I was in, as did my husband, and spent the whole time keeping me giggling. It helped, though I spent most of the movie wondering if I needed to leave and go to the ER for some kind of pain management.   So many people, when they learn of my limitations, give me the eyes and a sort of “how sad for you” feeling. Yeah, it is sad. It does suck. But I spend most of my time trying to forget that and keep my head in what I have, in what makes me happy, in what I can do. Heck, I’ve run into problems in my marriage because I avoid talking about my pain to the point where it almost seems fake when I mention it. My husband is my greatest supporter and champion, no questions asked, but if I bury my pain to the point where he struggles with it, I can only imagine how other people must perceive it. On the other hand, were I to speak on my pain more often, I worry I’d come across as whining because I don’t remember a day when I had no pain. I know I had them when I was younger, but I don’t remember it. The only days I have almost no pain now are when I medicate heavily, and I don’t even know if I’d count those as “days” because I’m asleep. As a result, my pain becomes sort of an elephant in the room. The people closest to me recognize it and know it’s there, but they usually don’t bring it up unless it really needs to be mentioned. If I say I’m hurting particularly badly on any given day or express I am limited, they know to leave it at that unless they have some kind of specific questions about what I’m experiencing. They also know I don’t want sympathy or attention for it, I just need to make accommodations for the struggles I’m facing that day with as little ado as possible. As someone with chronic pain and illness, pain is sort of a shadow I live with every day. A spectre that hangs over my shoulder, much like the depictions of depression (which many of us fight, as well). It’s a constant, and it’s something I often will try and push aside and ignore in favor of other pursuits. Talking about it brings it to the forefront, and I know complaining won’t do me much good. That, and no one wants to hang out with someone who spends their day whining. Even if people tell me a million times that stating my limitations and expressing I’m having a rough time “isn’t whining,” it still feels like it. You can’t talk me out of that feeling, most of the time. Also, recognize that just because you can’t see what might be hurting or know why, my pain is still very real. Comparing it to anything else or your own won’t help. Saying, “Gee, I’m sorry you dislocated your shoulder. I pulled a muscle once there, and it hurt so much. I had to go to physical therapy and everything!” doesn’t tend to help. In fact, it takes the conversation and turns it around to be about you. When in doubt, just say, “I’m sorry you’re hurting.” You don’t need to try and relate to it or tell me about your experiences with whatever I’m dealing with in an effort to connect a lot of the time. I know you mean well – really, I do – but it’s frustrating because you aren’t dealing with what I am unless you share my condition or disease or have experienced the exact thing I have. At the end of the day, so much of my combat is fought within my own body and head. That isn’t to say I don’t have allies, friends, companions and people who walk with me on my journey, but for a lot of my illness, I need to face my demons on my own. What I’d ask of someone on the outside is that you accept my statements of pain as what they are. Know that, more often than not, I want acknowledgement of our limitations in a compassionate manner. Sympathy, snuggles and expressions of “I’m sorry you’re hurting” aren’t unwelcome, but for many of us, we’d rather just get on with our lives and not think on it more than we have to. Give me my space, and let me manage unless I ask otherwise. And please, please, never judge me for my pain. I can’t control the signals my nerves send my brain, though a lot of the time I really wish I could. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via kotoffei.

E. Prybylski

Not Wanting Attention or Pity When Talking About Chronic Pain

I don’t “look disabled.” Most of the time. Unless the weather’s gone wild (and I live in New England, so that’s only an afternoon away) or I’ve somehow injured myself, I usually look like a healthy woman. Heck, I don’t even look my age – no one believes me when I tell them I’m over 30. While I won’t complain about the fact that most of my symptoms are clandestine enough to not warrant attention, it makes discussing my disability challenging, at best. Because I don’t look the part, and because I so often push through my pain with a smile plastered over my face, it’s easy for people to discount and disbelieve what I’m saying when I tell them how much pain I’m in. I mask very well, and it’s born of having a life where I needed to. I didn’t have much of a choice, since I couldn’t really show my pain to the world. I also didn’t want to, since with pain comes attention, and I really hate that kind of attention. I don’t want it. Most of it comes with a “you poor thing” sort of feel, and I don’t want that at all. In addition to that kind of attention (and often with it) comes this sort of feeling that I am somehow lesser because of my disability. If they believe me at all. And that’s a big if when my overt presentation of the conditions I cope with is well-hidden. The fact that I’m laughing doesn’t mean I don’t feel like my head is trying to tear itself apart with a migraine. Heck, I went out with my best friends to a midnight screening of “Doctor Strange” and laughed my whole way through it while simultaneously in the worst pain of my life. During that showing, my spine was out between my shoulder blades, and every breath, every wrong move and every turn of my head flooded my body with agony. On the one-to-10 pain scale, I sat at a solid nine, and I had been there for nearly a week. My friends knew how much pain I was in, as did my husband, and spent the whole time keeping me giggling. It helped, though I spent most of the movie wondering if I needed to leave and go to the ER for some kind of pain management.   So many people, when they learn of my limitations, give me the eyes and a sort of “how sad for you” feeling. Yeah, it is sad. It does suck. But I spend most of my time trying to forget that and keep my head in what I have, in what makes me happy, in what I can do. Heck, I’ve run into problems in my marriage because I avoid talking about my pain to the point where it almost seems fake when I mention it. My husband is my greatest supporter and champion, no questions asked, but if I bury my pain to the point where he struggles with it, I can only imagine how other people must perceive it. On the other hand, were I to speak on my pain more often, I worry I’d come across as whining because I don’t remember a day when I had no pain. I know I had them when I was younger, but I don’t remember it. The only days I have almost no pain now are when I medicate heavily, and I don’t even know if I’d count those as “days” because I’m asleep. As a result, my pain becomes sort of an elephant in the room. The people closest to me recognize it and know it’s there, but they usually don’t bring it up unless it really needs to be mentioned. If I say I’m hurting particularly badly on any given day or express I am limited, they know to leave it at that unless they have some kind of specific questions about what I’m experiencing. They also know I don’t want sympathy or attention for it, I just need to make accommodations for the struggles I’m facing that day with as little ado as possible. As someone with chronic pain and illness, pain is sort of a shadow I live with every day. A spectre that hangs over my shoulder, much like the depictions of depression (which many of us fight, as well). It’s a constant, and it’s something I often will try and push aside and ignore in favor of other pursuits. Talking about it brings it to the forefront, and I know complaining won’t do me much good. That, and no one wants to hang out with someone who spends their day whining. Even if people tell me a million times that stating my limitations and expressing I’m having a rough time “isn’t whining,” it still feels like it. You can’t talk me out of that feeling, most of the time. Also, recognize that just because you can’t see what might be hurting or know why, my pain is still very real. Comparing it to anything else or your own won’t help. Saying, “Gee, I’m sorry you dislocated your shoulder. I pulled a muscle once there, and it hurt so much. I had to go to physical therapy and everything!” doesn’t tend to help. In fact, it takes the conversation and turns it around to be about you. When in doubt, just say, “I’m sorry you’re hurting.” You don’t need to try and relate to it or tell me about your experiences with whatever I’m dealing with in an effort to connect a lot of the time. I know you mean well – really, I do – but it’s frustrating because you aren’t dealing with what I am unless you share my condition or disease or have experienced the exact thing I have. At the end of the day, so much of my combat is fought within my own body and head. That isn’t to say I don’t have allies, friends, companions and people who walk with me on my journey, but for a lot of my illness, I need to face my demons on my own. What I’d ask of someone on the outside is that you accept my statements of pain as what they are. Know that, more often than not, I want acknowledgement of our limitations in a compassionate manner. Sympathy, snuggles and expressions of “I’m sorry you’re hurting” aren’t unwelcome, but for many of us, we’d rather just get on with our lives and not think on it more than we have to. Give me my space, and let me manage unless I ask otherwise. And please, please, never judge me for my pain. I can’t control the signals my nerves send my brain, though a lot of the time I really wish I could. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via kotoffei.

E. Prybylski

Not Wanting Attention or Pity When Talking About Chronic Pain

I don’t “look disabled.” Most of the time. Unless the weather’s gone wild (and I live in New England, so that’s only an afternoon away) or I’ve somehow injured myself, I usually look like a healthy woman. Heck, I don’t even look my age – no one believes me when I tell them I’m over 30. While I won’t complain about the fact that most of my symptoms are clandestine enough to not warrant attention, it makes discussing my disability challenging, at best. Because I don’t look the part, and because I so often push through my pain with a smile plastered over my face, it’s easy for people to discount and disbelieve what I’m saying when I tell them how much pain I’m in. I mask very well, and it’s born of having a life where I needed to. I didn’t have much of a choice, since I couldn’t really show my pain to the world. I also didn’t want to, since with pain comes attention, and I really hate that kind of attention. I don’t want it. Most of it comes with a “you poor thing” sort of feel, and I don’t want that at all. In addition to that kind of attention (and often with it) comes this sort of feeling that I am somehow lesser because of my disability. If they believe me at all. And that’s a big if when my overt presentation of the conditions I cope with is well-hidden. The fact that I’m laughing doesn’t mean I don’t feel like my head is trying to tear itself apart with a migraine. Heck, I went out with my best friends to a midnight screening of “Doctor Strange” and laughed my whole way through it while simultaneously in the worst pain of my life. During that showing, my spine was out between my shoulder blades, and every breath, every wrong move and every turn of my head flooded my body with agony. On the one-to-10 pain scale, I sat at a solid nine, and I had been there for nearly a week. My friends knew how much pain I was in, as did my husband, and spent the whole time keeping me giggling. It helped, though I spent most of the movie wondering if I needed to leave and go to the ER for some kind of pain management.   So many people, when they learn of my limitations, give me the eyes and a sort of “how sad for you” feeling. Yeah, it is sad. It does suck. But I spend most of my time trying to forget that and keep my head in what I have, in what makes me happy, in what I can do. Heck, I’ve run into problems in my marriage because I avoid talking about my pain to the point where it almost seems fake when I mention it. My husband is my greatest supporter and champion, no questions asked, but if I bury my pain to the point where he struggles with it, I can only imagine how other people must perceive it. On the other hand, were I to speak on my pain more often, I worry I’d come across as whining because I don’t remember a day when I had no pain. I know I had them when I was younger, but I don’t remember it. The only days I have almost no pain now are when I medicate heavily, and I don’t even know if I’d count those as “days” because I’m asleep. As a result, my pain becomes sort of an elephant in the room. The people closest to me recognize it and know it’s there, but they usually don’t bring it up unless it really needs to be mentioned. If I say I’m hurting particularly badly on any given day or express I am limited, they know to leave it at that unless they have some kind of specific questions about what I’m experiencing. They also know I don’t want sympathy or attention for it, I just need to make accommodations for the struggles I’m facing that day with as little ado as possible. As someone with chronic pain and illness, pain is sort of a shadow I live with every day. A spectre that hangs over my shoulder, much like the depictions of depression (which many of us fight, as well). It’s a constant, and it’s something I often will try and push aside and ignore in favor of other pursuits. Talking about it brings it to the forefront, and I know complaining won’t do me much good. That, and no one wants to hang out with someone who spends their day whining. Even if people tell me a million times that stating my limitations and expressing I’m having a rough time “isn’t whining,” it still feels like it. You can’t talk me out of that feeling, most of the time. Also, recognize that just because you can’t see what might be hurting or know why, my pain is still very real. Comparing it to anything else or your own won’t help. Saying, “Gee, I’m sorry you dislocated your shoulder. I pulled a muscle once there, and it hurt so much. I had to go to physical therapy and everything!” doesn’t tend to help. In fact, it takes the conversation and turns it around to be about you. When in doubt, just say, “I’m sorry you’re hurting.” You don’t need to try and relate to it or tell me about your experiences with whatever I’m dealing with in an effort to connect a lot of the time. I know you mean well – really, I do – but it’s frustrating because you aren’t dealing with what I am unless you share my condition or disease or have experienced the exact thing I have. At the end of the day, so much of my combat is fought within my own body and head. That isn’t to say I don’t have allies, friends, companions and people who walk with me on my journey, but for a lot of my illness, I need to face my demons on my own. What I’d ask of someone on the outside is that you accept my statements of pain as what they are. Know that, more often than not, I want acknowledgement of our limitations in a compassionate manner. Sympathy, snuggles and expressions of “I’m sorry you’re hurting” aren’t unwelcome, but for many of us, we’d rather just get on with our lives and not think on it more than we have to. Give me my space, and let me manage unless I ask otherwise. And please, please, never judge me for my pain. I can’t control the signals my nerves send my brain, though a lot of the time I really wish I could. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via kotoffei.