liz_ed

@liz_ed | staff
liz_ed

This is a new story with lots of different formatting

At some point in your life (or, let’s face it, many times), someone you care for – a friend, a colleague, a partner, a child – will be diagnosed with a health condition. And when that time comes, your brain will likely start to misfire with a slew of half-baked yet earnest questions: What should I say? How should I act? What can I do? What’s actually going to be helpful? Not only are those questions ping-ponging around inside your skull totally normal, they are also a sign you care. So, take it easy on yourself – health from the patient’s perspective is wildly tough, but health from the I-care-about-you-but-I-don’t-fully-get-it perspective comes with its own set of challenges as well. As someone who’s about two decades into her diagnoses, I’d love to give you a tip – sometimes the most well-meaning comments and questions can have the opposite effect on the person who’s struggling. But have no fear, friend! This is where The Patient Translator comes in. The concept here is simple: I assembled my fellow Mighty staff members to tap into their own lived health experiences. Together we pooled the comments and questions that sometimes frustrate us, translated them into what we really hear, and then offered some suggestions for what we wish people would say instead. Looking to navigate a conversation around a particular health topic? Use the links below to start “translating”! Heading 1 Body Heading 2 bullet bullet bullet Heading 3 Heading 4 Heading 5 Body text   Chronic Illness | Disability | Neurodivergence | Rare Disease | Parenting | Mental Illness | Grief | Trauma What to say to someone with chronic illness When you say: “Have you tried [insert diet, treatment, or exercise here]?” What I hear is: “You aren’t doing enough to feel better. Try harder.” What I’d love to hear instead: “What’s working for you best in your treatment plan right now? What kind of changes do you want to make?” Learn more from our community’s experiences: 16 Things People With Chronic Illness Don’t Find Helpful (Even If It Helped Your Mom’s Friend’s Gardener) 5 Reasons Unsolicited Medical Advice Hurts More Than It Helps   When you say: “I’m praying for you/thinking of you/hoping for you to get over this illness.” What I hear is: “If you had more faith/positivity, all of this would go away! Your illness is just a bump in the road that you have the power to change.” What I’d love to hear instead: “How can I support you as you continue your maintenance treatment for this condition? How do you want me to show up for you?” Here are more perspectives to learn from: When Church Members Said God Would Heal My Illness If I Prayed Hard Enough To the Person Who Tried to Pray My Disability Away   When you say: “This too shall pass.” What I hear is: “I haven’t heard a thing you’ve said about your condition, and I haven’t bothered to look into it either.” What I’d love to hear instead: Silence. If you feel like you absolutely need to say something in the moment, “That sounds really hard” will do the trick. Learn more from our community’s experiences: The Harm of Toxic Positivity (and What You Can Say Instead) This Is What Happens When People Can’t ‘See’ Your Chronic Illness What to say to someone who is disabled When you say: “I don’t see you as disabled.” What I hear is: “When you do struggle, I’m going to put ‘able-bodied’ expectations on you.” What I’d love to hear instead: “I see you as a whole person. If you struggle with something and need help, I’m here to help you.” Here are more perspectives to learn from: ‘Disabled’ Is Not a Bad Word The Problem With Telling Someone ‘I Don’t See You as Disabled’   When you say: “You don’t look disabled.” What I hear is: “I have a very small view of what disability looks like, and you don’t fit it. You must be making it up.” What I’d love to hear instead: “How does that look/present for you? Are there accommodations/changes I can make that would be helpful?” Learn more from our community’s experiences: The First Time Someone Told Me ‘You Don’t Look Disabled’ I Am the Face of Disability, Even if I Don’t ‘Look’ Disabled   When you say: “Those people who fake a disability to get benefits make me so angry. They hurt people like you who are actually disabled.” What I hear is: “I don’t take invisible disabilities seriously, but you’re one of the ‘good ones’ with a visible condition and deserve help. Also, if you tell me about your neurodivergence and PTSD, I’ll dismiss them as no big deal compared to your mobility disability.” What I’d love to hear instead: “It makes me so angry that people with disabilities have to struggle to get the support and acceptance they need. How can I help advocate for change?” Here are more perspectives to learn from: 5 Scams That Are Easier (and Way More Common) Than Faking a Disability to Get Benefits Targeting ‘Illness Fakers’ Doesn’t Help Disabled People   When you say: “You’re such an inspiration.” What I hear is: “If I were you, I wouldn’t want to be alive. You’re a hero for just existing in a disabled body without hating your life.” What I’d love to hear instead: “That’s really great that you [insert actual accomplishment or interesting thing about me here].” Learn more from our community’s experiences: Living With a Disability Doesn’t Make Me an Inspiration Please Stop Spreading ‘Inspiration Porn’ About Disability What to say to someone who is neurodivergent Neurodivergence is an umbrella term for people who think and perceive the world differently. Autistic people and individuals with ADHD, sensory processing disorder, and some who have mental illnesses may identify as neurodivergent. You can learn more about neurodivergence and the neurodiversity movement in this article. When you say: “Everyone thinks they have [insert condition here] these days. You’re fine.” What I hear is: “I don’t trust that you know yourself, I don’t care what you’ve been through, and you don’t know what you’re talking about.” What I’d love to hear instead: “I’ve been hearing a lot about that recently, and my understanding is that it presents differently for everyone. How does it present for you?” Here are more perspectives to learn from: I’m Not Embarrassed by My Child’s ‘Made Up’ Diagnosis How It Feels When Someone Says, ‘Everyone Has Anxiety’ When People Tell Me I ‘Can’t Be Autistic’ When People Say ‘You Don’t Seem Autistic’   When you say: “Have you tried using a planner?” What I hear is: “ You are disorganized and haven’t even tried a simple solution. This is the only fix.” What I’d love to hear instead: “How can I help support you to keep you on track? What ways work best for you? What haven’t you tried that may interest you?” Learn more from our community’s experiences: 7 Seemingly ‘Harmless’ Comments About ADHD, and How to Respond to Them 5 Ways to Empower Employees or Kids With ADHD   When you say: “Everyone’s a little autistic.” / “Aren’t we all on the spectrum somewhere?” What I hear is: “Your experiences being autistic aren’t valid and don’t matter.” What I’d love to hear instead: “I’d love to know about your experiences being autistic/on the autism spectrum. Can you tell me more about what you go through so I can support you and make you feel less alone?” Learn from our community’s experiences: No, Not Everyone Has ‘a Little Bit of Autism’ Autistic People Answer 15 Questions About Autism   When you say: “Aren’t you a bit old to like [insert special interest]?” What I hear is: “Your special interests are not appropriate and you should feel ashamed to like them. You should hide that part of yourself.” What I’d love to hear instead: “What do you like about [insert special interest]? I’d love to know more about what draws you to it.” Here are more perspectives to learn from: How Pressure to Be ‘Age Appropriate’ Can Harm Autistic People The Necessity of Special Interests for Me as a Person on the Autism Spectrum   When you say: “Stop acting out. Tantrums are for children, not adults.” What I hear is: “You must conform to how I expect people to act when they’re upset. Your way of handling your emotions is invalid.” What I’d love to hear instead: “How can I best support you through a meltdown?” Learn more from our community’s experiences: What Meltdowns Feel Like to Me as an Autistic Adult What My ‘Quiet Meltdowns’ Look Like as a Neurodivergent Adult What to say to someone with a rare disease When you say: “Oh, I saw your disease on an episode of [House/Grey’s Anatomy/E.R./General Hospital/etc.]. It sounds so cool!” What I hear is: “You must have had such an easy diagnostic process and straightforward treatment plan. Your disease is a novelty fabricated for my entertainment.” What I’d love to hear instead: “I’ve only heard about your disease from a TV show. If you don’t mind sharing, what do you want me to know about actually living with this disease?” Learn more from our community’s experiences: 4 Things About My Rare Disease I’m Tired of Explaining 25 Misconceptions About Living With a Rare Disease What to say to someone who is a parent of a child with a health condition When you say: “Parenting is hard for everyone. Kids these days just need more discipline and less screen time!” What I hear is: “I don’t care about your experience of parenthood, do it how I think is best.” What I’d love to hear instead: “Parenting can be hard. What’s going on? Do you want to talk about it?” Here are more perspectives to learn from: 15 Things I Don’t Want to Hear as a Parent of Kids With Disabilities When I’m Judged Because My Child Needs Screen Time to Eat When you say : “I can’t imagine [having a child with a disability/chronic illness].” What I hear is: “ I don’t want to talk or think further about the realities of living with a disability. Let’s end this part of the conversation and move onto something more palatable for me.” What I’d love to hear instead: “ Tell me more about your son/daughter/child.” Learn more from our community’s experiences: The Problem With Calling Parents of Kids With Disabilities ‘Heroes’ There’s Nothing ‘Wrong’ With My Daughter With a Disability What to say to someone with mental illness When you say: “What is there to be depressed/anxious about? Just cheer up/relax!” What I hear is: “You’re keeping yourself stuck in this place by not trying hard enough. Also, I don’t believe it’s actually an illness.” What I’d love to hear instead: “I can’t imagine what that must be like, but I’m here for you in any way I can be. How can I support you?” Here are more perspectives to learn from: When You Don’t Have a ‘Reason’ to Be Depressed To the People Who Tell Me to ‘Calm Down’   When you say: “Just keep your head up and look on the bright side. It’ll get better, you got this!” What I hear is: “Your illness isn’t actually that complex, a positive attitude is all you need to feel better.” What I’d love to hear instead: “I’m here for you regardless of what the future holds. I know I don’t understand all of it, but I’m here to support you.” Learn more from our community’s experiences: Why ‘Forced Positivity’ Is Problematic for Mental Health and Chronic Illness  The Danger of Encouraging ‘Positive Thinking’ With Depression   When you say: “Don’t isolate, you need to reach out and spend time with people!” What I hear is: “You should reach out and spend time with people, but not me. I don’t want to deal with you.” What I’d love to hear instead: “I’m sorry you’re feeling like you have to isolate. What are you doing right now? Can I call or come pick you up?” Here are more perspectives to learn from: 7 Reasons People With Mental Illness Might ‘Disappear’ The ‘Cycle of Social Withdrawal’ People With Mental Illness Might Relate To   When you say: “Oh I was depressed when X happened, and I drank this juice/tried this oil/took a walk and felt better!” What I hear is: “You’re making it up, it’s not that bad, you just need to make a change and everything will be great.” What I’d love to hear instead: “I was depressed when X happened. I remember it was really hard. If you ever want to talk about some of the tools I tried, feel free to ask!” Learn more from our community’s experiences: When You Do Everything ‘Right’ but You’re Still Depressed 22 Things That Don’t Always ‘Fix’ Anxiety, Even Though You Mean Well   When you say: “Nothing is impossible if you put your mind to it.” What I hear is: “ It’s OK to sacrifice your mental health in the name of accomplishment.” What I’d love to hear instead: “ You are worth more than your accomplishments. Follow your dreams, but go at your own pace and don’t push yourself past your limit – it’s not worth it.” Here are more perspectives to learn from: We Need to Devalue Being Busy and Start Valuing Rest and Mental Health How the ‘Cult of Productivity’ Harms People With Chronic Illness Hustle Culture Is an Ableist Health Minefield That We Need to Dismantle Now   When you say: “ Just let it go and move forward.” What I hear is: “ You are broken because these feelings won’t go away easily. You are too sensitive.” What I’d love to hear instead: “ Your feelings are valid. How can I support you to help ease the tension or distract you?” Learn more from our community’s experiences: 24 ‘Harmless’ Comments That Hurt Highly Sensitive People Why Trauma Survivors Can’t Just ‘Let It Go’ What to say to someone who has been struggling When you say: “Wow, you’re so brave. I couldn’t have gone through that.” What I hear is: “ Wow, I can’t even tell how much you’re struggling with your mental health through this!” What I’d love to hear instead: “While I know I can’t fully understand, this must have been a really difficult experience and I’m here to support you however I can.” Here are more perspectives to learn from: Thanks for Thinking I’m Brave, but… Going Beyond ‘You’re So Brave’ When We Talk About Chronic Illness   When you say: “You back in today?” (in a work context) What I hear is: “Are you back to working at full capacity today?” I know this question. It means you’re testing the waters. This isn’t an “Are you feeling any better today?” You just want something. What do you want? Can you soften the approach a little more so I can pretend that it’s coming from a caring place? What I’d love to hear instead: “I’m sorry you weren’t feeling well yesterday. Hope today is looking up.” Learn more from our community’s experiences: Everyone Who Needs a Mental Health Day Deserves a Reply Like This From Their Boss 5 Ways Workplaces Can Be More Disability-Friendly   When you say: “How are you doing?” What I think is: “…Like, emotionally? Physically? Existentially? Just at this very moment? Since the last time we talked? Are you asking me for my feelings on big picture/overall life trajectory stuff? Wait, how am I feeling about any of that right now? Do I not look like I’m doing OK? Am I not doing OK? Are any of us doing OK?…” What I’d love to hear instead: “How are you doing today?” (Honestly, even the littlest bit of specificity makes the biggest difference in keeping the spiraling at bay.) Here are more perspectives to learn from: When Anxiety Makes It Difficult to Answer ‘How Are You?’ When ‘How Are You?’ Becomes a Dreaded Question What to say to someone who has lost a loved one When you say: “Your [loved one] wouldn’t want you to still be feeling this way.” What I hear is: “If you were strong enough, you would be over their death by now.” What I’d love to hear instead: “I’m sorry your grief is still weighing so heavily on you. Everyone grieves differently, and what you’re experiencing is valid, but you might need a little help in order to heal. What can I do to support you through it?” Here are more perspectives to learn from: This Analogy Perfectly Explains Why You Can’t Just ‘Get Over’ Grief No One Can Tell You When the Pain of Grief Is Over   When you say: “I’m sorry for your loss.” What I hear is: “I don’t know what to say and I don’t want to be awkward so I’ll say this, and mean it, but also hope we change the subject to something fun soon so I don’t have to sit here awkwardly.” What I’d love to hear instead: Every loss is different and there is no “right” thing to say. Keep these two things in mind: try not to make it about you or say something simply out of obligation. Your responsibility is to show up for the other person, not to “fix” their grief. Learn more from our community’s experiences: 11 Things People Wish They Were Actually Told After Someone Dies 10 Things No One Tells You When a Loved One Dies What to say to someone who has lived through trauma When you say: “Why didn’t you tell me at the time?” What I hear is: “I don’t believe you buried your abuse. It’s your fault.” What I’d love to hear instead: “I’m sorry this happened and I didn’t know. I can’t make up for the past, but please let me know what I can do to support you now.” Here are more perspectives to learn from: 5 Reasons Sexual Assault Survivors Don’t Open Up About Their Abuse Why I Couldn’t Talk About My Sexual Assault Until Now   When you say: “Time heals all wounds.” What I hear is: “I don’t know how to help you whatsoever. You’ll get over it eventually.” What I’d love to hear instead: “What matters is what you feel right now and in this moment. Time doesn’t heal all wounds, and that’s OK.” Learn more from our community’s experiences: Let’s Talk Trauma: You May Never Be Completely Healed, And That’s OK 6 Things to Remind Yourself During Trauma Recovery   When you say: “You need some self-care.” What I hear is: “You don’t know how to care for yourself.” What I’d love to hear instead: “That sounds really tough. Do you have the support you need?” Here are more perspectives to learn from: 8 ‘Harmless’ Comments That Actually Hurt People With PTSD 10 Ground Rules for Working With Trauma Survivors   When you say: “What doesn’t kill you makes you stronger.” What I hear is: “It’s OK for people to go through tough and traumatic experiences because it should make them stronger, and if it doesn’t, it’s their own fault.” What I’d love to hear instead: “No one deserves to experience trauma, and even if the experience forces you to be ‘stronger,’ that doesn’t mean it’s OK that it happened.” Learn more from our community’s experiences: When Trauma Doesn’t Give You Thick Skin A Reminder to Strong Women — It’s OK to Not Be OK   When you say: “But you have built a good life.” What I hear is: “Your trauma doesn’t matter.” What I’d love to hear instead: “You can have a good life and also experience trauma – these are not mutually exclusive. I’m sorry that this happened to you but I’m here to support you in any way that I can. I hope you can feel safe with me.” Here are more perspectives to learn from: When You’re ‘Too Functional’ to Have Your Mental Illness Taken Seriously What ‘High-Functioning’ PTSD Looks Like   When you say: “It could have been worse.” What I hear is: “What you went through wasn’t that bad. You should be over it by now.” What I’d love to hear instead: “I’m sorry that happened to you. How are you feeling about it now? How can I support you?” Learn more from our community’s experiences: Why You Shouldn’t Tell a Trauma Survivor ‘It Could Have Been Worse’ Why We Dismiss and Diminish Our Past Abuse   The Mighty is proud to be staffed by people who have lived experience with a variety of health conditions and disabilities. Thank you to Ashley Kristoff , Ben Berkley , Brittany Johnson , Camara Rauen , Francesca Dalleo , Genevieve DeRose, Jess Sells Wertman , Karin Willison , Kelly Douglas , Matt Sloan , Monique Vitche , Sarah Schuster , and Skye Gailing for their contributions to this piece!

liz_ed

10 Unconventional Tips for Managing Fibromyalgia

Fibromyalgia is different for everyone who has it, from the symptoms to the severity, to the severity of each of the symptoms. Also, for those of us who have fibromyalgia, it’s different for us, each day. Managing an unpredictable and little-understood illness is certainly challenging. I manage my own in some conventional ways: I try to eat healthily, I take vitamins and supplements, I exercise when I feel up to it, and I try to get a decent amount of rest and not “overdo it” in my day-to-day activities. I also manage my fibromyalgia in some unconventional ways. (But is “unconventional” even a thing for such an unconventional illness?) Maybe some of these tips will work for you, too: 1. To reduce fibromyalgia pain, use a microwavable heating pad — on your feet. I have a microwavable heating pad filled with beans that is made for your back, but I nuke that thing and wrap my sore feet in it. It’s almost as good as a hot water soak, but it’s so much easier. 2. To cope with sound sensitivity related to fibromyalgia, pretend to listen to music in loud public spaces. I’m sensitive to loud noises, so I keep my noise-canceling earbuds in my purse, and when I’m stuck in a waiting room with a loud television, or any place there is loud noise, I pop them in my ears to use as earplugs. I’m not even listening to anything; it just looks less weird than actual earplugs. 3. Surround yourself with items of joy and don’t hold back. I’m a maximalist. I have the walls of my house covered — in some places literally from floor to ceiling — with photos from my travels. I also have over 2,000 books, all of which I’ll never read in my lifetime, but I find walls of books to be immensely comforting. Some people think my house is too busy, or that I have too much stuff, but it is a joyful place for me. Everywhere I look, there’s treasure. My favorite is a collage wall of photos from a 10-week road trip I took with my dog. It’s in my bedroom, for me to look at when I wake up and fall asleep. It’s not just a great memory; it’s something I did with my fibro, so it’s a reminder of everything I still have and can do. 4. Organize your home and life. I have always taken a lot of comfort in organizing things. It could be getting a couple new books and alphabetizing them within my library, or color-coding my closet. It calms me. When fibromyalgia makes me feel like I’m not in control, I pick something I can control and make it beautiful. 5. Watch the weather forecasts and plan ahead if conditions could trigger a fibromyalgia flare-up. I obsessively watch the weather forecasts. I know temperature changes and precipitation can trigger a flare-up. How then do I plan? Well, I catch up on chores and work ahead on work, setting up my home and life so I can chill and rest and take a couple “sick days.” It never hurts to stock up on soup or take-out! 6. Make yourself a fibromyalgia care package. I call mine a Splatquake Kit (my article on that is here). It’s loaded with comfort items for the bad flares. These are items that are for physical comfort, pain relief, as well as mental comfort. Having easy-prep or no-prep food is a biggie. 7. Talk about fibromyalgia as much as possible. Being open about my fibromyalgia and its symptoms reduces my need to “pass” as someone who is able-bodied. I simply let people know, without shame or fear of judgment (because if they judge, that’s their issue, not mine), and then I avoid the behaviors that can exacerbate my symptoms. I let people know I may slur my speech, and then I don’t panic if I do. I let people know I’m fatigued, so I get grace to lag behind in conversations or leave social gatherings early. I also created the Splat system of communication, which makes it even easier to let people know how I am and what to expect. 8. Create “to-do” lists that account for unpredictable fibromyalgia symptoms. I made up a thing called the Impact Map, that revolves around the Splat system. It’s a fabulous way to stay on a productive routine and avoid feelings of guilt on bad days, or making excuses on the good ones. I put together all versions of this tool on this page. 9. Use your fibromyalgia for good. I’ve used my fibromyalgia to reshape my life for the better. The beautiful thing about limitations and disadvantages is the creativity that it inspires when we strive to still live full lives within these limitations. It’s not unlike the structural rules of a sonnet being the very reason these are beautiful poems rather than ordinary prose saying the same thing. Because of the cycles of fatigue and flare-ups, I have fewer moments in my days when I can be active at work or play, so I get the very most out of those moments and live an incredibly rich — and ironically free — life! In fact, the best thing ever about my fibro is how it inspired me to go into business for myself as a professional speaker teaching about invisible disabilities! (Talk about being “free”!) Sometimes I do just hate being chronically ill, but on most days, I’m able to see all the gifts I’ve gained from fibromyalgia and I have peace with it. 10. Play! Like many others, I had an absolutely terrible 2020, and during that time, I went back to the basics. I asked myself, what was my favorite thing to do when I was a kid? That I could get caught up in for hours and escape the world and all its troubles? For me, it’s LEGO® bricks! Now, I have an epic collection of toys and I love to build things and play with them, and I have other adult friends who come over and play, too. The truth is, when I was 12 years old and stopped playing with toys, it wasn’t because I didn’t like them anymore; it was because I was embarrassed and worried about what other people think. I live with a disease that controls my life and influences who I am, without my consent. I’ve learned that where I do have a choice is choosing to not let other people or societal norms tell me what I can or can’t do or who I should be. And I embrace every bit of this realization to be a happy weirdo fibro warrior. Check out some more tips from Mighties with chronic illnesses (and see one of my LEGO creations) in this article: 15 Products That Help People With Chronic Illness Manage Their Mental Health.