Stacey Philpot

@stacey-philpot | contributor
Stacey is an author, goofball and avid reader. You can find her blog at Chronically Whole where she endeavors to encourage other warriors like herself along in their journey of battling for health and discovering wholeness. She is mom to Hayden and Avery, stepmom to Julie and wife to Ryan (a smarty-pants who works at NASA and logs their whole life on spreadsheets and pie charts, true story!) She has a strange affinity for eating whole meals in bed (don’t tell anyone) and is convinced smelling old books will make her smarter.
Stacey Philpot

Sex Tips for Women With Illnesses and Compromised Immune Systems

If you or your partner have a chronic illness, chances are there have been some not so sexy seasons in your sex life. Maybe your sex life has even been nonexistent at times. I get it (well, sometimes I don’t, not that “it” anyway – more on that in a bit). Chronic illness can make romance challenging. (I was going to say hard, but nope, not a good idea.) The thing is, even us immunocompromised girls want to get our freak on. There are just all those seemingly never-ending complications to deal with. For instance: Will I get an infection? If so, will that infection spread, leading to other, worse infections? Will it hurt? Have I showered or shaved my legs in the last 10 years or so? Can I complete said acts without horrific pain? Can I complete said acts without horrific pain for days to come? Do I even remember how to have sex? Will my partner still be attracted to me after all this weight I’ve gained? Will this set off a flare? Can I stay awake long enough to do this? Infections, setting off flares and trying to decide if you can stay awake during sex? Not that hot. But connecting with your partner? Feeling seen, known, loved, cherished and chosen? Super hot. Olaf believes some people are worth melting for, and we know some people are worth sorting through the complications of sex and chronic illness for (and we’re one of them, by the way). How do we, even us immunocompromised girls, enjoy hot sex? 1. Get comfortable. Whatever this looks like for you and your partner, maybe it means adjusting the lighting, the temperature in the room, the location, the position or even the degree of intimacy your body can tolerate. It may also mean getting comfortable with your body. If your partner tells you that you have the body of a hottie, believe them! Accept the loving words lavished upon you. Rejecting your body and their love will only make it harder to have hot sex when the time comes. Embrace your body, celebrate all the hard work it’s done fighting illness. You may not look the way you once did, but that doesn’t mean you don’t look good. Don’t rob your partner of the opportunity to show you just how much they still enjoy your body. 2. Think sexy. As chronic illness warriors we often think medically. Throughout the day we think about dietary restrictions, taking medications, treatments and side effects and managing homes and children in spite of symptoms. It can be hard to throw in, “I can’t wait to get my freak on” in the middle of a migraine. Looking for windows for romance physically as well as reflecting back on the fun times we’ve had in the bedroom will help keep intimacy at the forefront of the relationship. Again, positive body image for the win here. The better we feel about ourselves, the better we’ll feel about intimacy. 3. Practice. Even when my husband and I can’t have everything on the menu, I try to make sure we partake in something from the menu. This might sound like, “I can’t have sex right now but we can…” Usually, he’s pretty excited about what we are doing, and is always thankful I’m making intimacy a priority in our relationship. This practice also keeps me from overthinking things. When I’ve been in an intense flare and it’s been too painful to engage in intimacy of any kind for a bit I always feel like an awkward sixth grader stepping back into things. The narrator in my head cannot be silenced. “Should I move my hand now? I could grab his butt? Should I grab his butt? It’s probably too soon. I don’t want to seem overeager. I hope he sanitized his hands.” Practice makes perfect and shuts the narrator up. (Thank God.) Some days, you’ll be having action so impressive the two of you may consider filming instructional videos out of your bedroom (I’ve given this the veto in my home, but best of luck to you!). Other times you may wonder if this is a bike you’ve ever actually ridden before. Just remember, hot sex is more than steamy action. It’s connecting with that person who’s stood beside you on this journey of chronic illness, who’s loved you in sickness and in health, showered and unshowered, shaved and unshaved. It’s about saying, “Hey you, this part of me is only for you” and that’s pretty hot, even when it’s not. We want to hear your story. Become a Mighty contributor here. Getty Image by Denisfilm

Stacey Philpot

What to Do When Chronic Illness Leaves You Feeling Lost

As a 4-year-old girl, I once peed my pants while hiding inside a circular rounder of clothing at our local Walmart store. Having been somehow separated from my mom for what felt like an eternity, I’d become increasingly afraid of all the unknowns around me. Everything felt foreign, menacing, and overwhelming. As time passed, the idea that I had been cut off from my mom for all eternity cemented in my mind. In the end, I cocooned myself within the nearest rounder of clothing, shaking with terror. My sobs must have alerted someone to my presence, because just as my fear peaked and I released my bladder onto the floor, the clothes parted, and the face of an elderly Walmart employee appeared. Queue ultimate humiliation. While I felt sheer relief upon being reunited with my mom, she felt a different combination of emotions. It turns out learning your daughter peed on the Walmart floor doesn’t emit instant jubilation. The thing is, I felt lost, alone, and afraid. So I hid. (And peed.) My mom didn’t understand this response. Still today, many of us are living out the same cycles. Chronic illness often leaves us feeling lost, alone, and afraid. So we hide. (And maybe some of us pee. I have bladder issues, so it’s a possibility.) People don’t understand this response and get frustrated with us. Thus, a cycle ensues, and communication breaks down. So, if hiding and peeing isn’t the answer? What is? What should we do when chronic illness leaves us feeling lost, alone, and confused? 1. Reach Out : When our instinct is to turn inwards, it takes bravery and intentionality to reach out. However, we’ll never stop feeling alone if we don’t take those intentional steps to connect to others. These steps can be small and based on what our health will allow. This may include online groups, book clubs, sharing, opening up about ourselves and our struggles, finding people with common interest, waving at our neighbor, etc. 2. Self-Care : Self-care looks different for everyone. For me, when the world feels too big and I feel too small, I need quiet time with a book, writing time with my laptop, or time with a friend watching shows in our comfies. I try to refrain from hiding in rounders of clothes these days, but strolling through Target is still oddly soothing to me. 3. Talk It Out : Whoever those trusted people in your life are, this is the time to borrow their ear. Now is when we say the words, “I feel so lost.” Or, “I haven’t seen anyone other than a pharmacist or doctor in a month. I feel like no one cares about me. I need you to tell me that my life matters.” Our lives do matter, but everyone needs a reminder every once in a while. 4. Help Others : In whatever way your body will allow, make the world better. Is knitting your jam? Can you make blankets and donate them to homeless shelters? I promise, as you do it, you will begin to find your footing again. Maybe, if I’d found another little girl looking for her mom that day at the store and helped her, it wouldn’t have been so scary. I bet we would’ve started playing ponies and forgot all about the part where we were supposed to be hunting for our moms. Feeling lost, alone, and afraid is terrible, no matter how old you are. How terrible it is, depends on whether or not we know what to do when we find ourselves there. That day, after my mom and I were reunited (and I helped clean up the pee) she said, “ The next time you can’t find me…” Getting separated from her was never so scary after that because I knew what to do. The next time chronic illness leaves us feeling lost, alone, and confused, let’s remind ourselves we know what to do. A version of this post first appeared at Counting My Spoons. We want to hear your story. Become a Mighty contributor here . Gettyimage by: CentralITAlliance

Stacey Philpot

Thank You to Those Who Go On the Chronic Illness Journey With Us

This week I stood on a wooden platform. Sweaty, eager teenagers in cut-off shorts holding souvenir cups surrounded me. The soundtrack, a cacophony of nervous chatter about what might happen should the coaster become stuck or spontaneously fall apart and the click-click-clack sound of the coaster slowly rising followed by the thrilled screams of riders. My stepdaughter and I waited our turn in companionable silence. I tried to extract from the dusty old files in my brain exactly how many years it had been since I’d ridden a roller coaster.   The bell sounded, we stepped forward, placed ourselves within the foam seats where a million sweaty riders had gone before. I made a mental note to sanitize my entire bottom half the second our ride came to a halt. The lap bar came down, we inched forward and suddenly I was 12 years old. Sitting next to 12-year-old me was my older brother, Matt. We were at Six Flags in St. Louis riding the “Screaming Eagle” – a wooden coaster that sprawled the full length of the park. His presence, the moment was tangible. Our futures were bright. We were young and free. Our dreams were grand. He would grow to be a great man, a Pastor. I would attend his church service every Sunday morning and cheer him on, shout out the loudest “amens” of all. 12-year-old me rode the “Screaming Eagle” with full belief my brother would always be by my side. History gave me no indication to believe otherwise. 12-year-old me planned to ride “The Ninja” next and gave no thought to a time in life when Matt’s body would be ravaged by cancer, and I would someday ride wooden roller coasters without him. 38-year-old me got a lump in my throat as I exited the coaster and had an overcoming urge to call my Mom and tell her how much I love her. You may have noticed by now chronic illness is a bit of a wild ride. Many of your friends and family may have chosen to sit this one out. Unlike a roller coaster filled with thrills and frills, this ride we’re on is mostly filled with terrifying ups and downs. If you’re like me, more than anything, you just want someone to sit beside you for the harrowing ride. When my stepdaughter and I sat down and prepared to launch, I completed my calculations and determined it had been close to 20 years since I’d ridden an actual roller coaster. I confessed to her; I was going to hate the first drop, the one where my stomach would plunge. She said simply, “Just scream it out.” I can’t tell you how many times during this wild ride of chronic illness I’ve needed someone to sit next to me and let me confess to him or her how truly petrified I was of the part coming up. I can’t tell you how many times I’ve needed them to say, “Just scream it out.” Here’s the truly stunning thing: not everyone I once believed would take the ride with me has, but I have never ridden alone. Whether it’s a check-in text, a meal, child-care or physical aid for my body, I have been loved and supported in a way that leaves me breathless. Does this mean I have never felt isolated, alone, misunderstood, forgotten? Absolutely not! It may mean a sudden drop caught me off guard, and I needed to scream it out until I reoriented and came to the realization my people were still there. The ones who stand beside us may be few, but our lives are forever changed because of their love. When the choice is ours, to take the ride with others or sit this one out, may we chose to ride, to love, to stand beside, to comfort with the comfort we have been given. To all who choose to stand beside us, to take the ride: Thank you, we love you. A version of this post first appeared on Chronically Whole. We want to hear your story. Become a Mighty contributor here.

Stacey Philpot

How to Prepare for a Vacation If You Have a Chronic Illness

I’m almost positive someone wise and famous once said something about “spoonies just wanting to have fun.” It’s possible I misheard them. Regardless, spoonies do wish to have some fun even if it requires a bit of forethought, planning and precisely 47 improvisations. Whether you’re summoning all of your courage and reward points to go overseas or taking a road trip with your besties to the beach, being prepared can make all the difference between the trip of a lifetime and spending your whole vacation in a dark hotel room trying to sleep off a flare. Here are 10 tips to help you prepare for all the fun ahead: 1. Make Sure You Have a Current Medication List With You This isn’t your first rodeo. In the unfortunate event you’re forced to see a doctor who isn’t familiar with your medical history, it will speed things up, prevent potential interactions and unnecessary catastrophes if you can present a list of your current medications when seen. It also means you might get away with writing “see attached” on those 10 pages meant for writing all your meds on. Hand cramps? None for you, thank you very much.   2. Pack All Your Meds Daily, rescue and “just in case.” This is one of those times where being over-prepared is the winning way to go. No one wants to be in another city or country when “that thing” that hasn’t happened in two years happens again, and they have no meds for it. So bring the meds, just in case. Murphy’s law dictates by simply bringing the meds along you’ll actually prevent “that thing” from happening on your dream trip. But leave them at home? And you, friend, are tempting fate in a way I dare not. You are far braver than I. Did you need those pills once in your life? Toss them in the bag just to be safe. Better safe than sorry is the guiding principle here. 3. Ugly but Supportive Shoes I mean, if you have supportive and cute shoes, then please, provide the link where you purchased these anomalies, otherwise, don’t worry about cute. Pack the shoes your body needs. 4. Clothes Your Body Needs for Every Situation Are you prone to overheating? Are you heat intolerant? Do you need to dress in layers? Real talk – is there a chance you might pee your pants if the lines are too long at your favorite venues? Pack for all those possibilities. Might it rain, soaking through your socks and supportive shoes? Pack backups. Do you need a backpack to keep your ostomy supplies in? I say you need bug spray no matter where you’re going, so throw that in the backpack too, pretty please. 5. Assistive Devices Travel is exhausting. No matter how much fun you’re having, you’re also taxing your immune system and all of your body’s resources. Whether or not you generally use your assistive devices in public, it’s probably a good idea to bring them on your trip. You may well find you tire out much more quickly than expected, or that your body is simply unable to navigate some portions of your trip without them. 6. List and Locations of Local Doctors Hopefully, you never have to use this list, and if printed out, it can ultimately be used for spitting your gum out in before boarding your flight home. However, if something unexpected should occur, you’ll want to know where the doctors who practice in the field needed are located, if they take your insurance, would be willing to see you in a pinch, etc. before you’re in a crisis. Knowledge is power. Simply being equipped with this information can make an emergency in a foreign city or country much less scary and unnerving. In the instance your friends or partner are trying to locate care for you in an emergency, this, along with your medication list, will be the gifts that keep on giving. 7. Emergency/After Hours Line for Your Physicians Since your doctor knows you and your history best, there’s no one better to talk to should you begin sprouting new or unusual symptoms while away. Ask before you take off on your grand adventure if he or she would be willing to guide you should you have any troubles while away. Would they be willing to guide or consult with a local doctor on the scene? 8. Ear Plugs/Eye Mask People are loud and annoying. (Did I say that? Sorry.) You’ll be exhausted. Light and sound may be a trigger for unhappy things. Perhaps you’ll be sharing a room with your besties or even the tiny, noise-making humans you created. Trust me, you’ll need the mask and ear plugs. 9. Ice Packs/Heating Pads If you are prone to joint swelling and pain or if you have chronic pain of any kind, these items are your long time friends. You are most likely quite familiar with “heat, ice, repeat.” If done while wearing your eye mask and ear plugs, it can be quite lovely. You’ll most likely be pushing your body to the max, and you’ll want to have the tools to soothe it a bit at the end of each day. You may even want to start each morning by icing your ailing members before pain sets in. 10. Sanitizers With all the fun you’ll be having, you may not think about all the new germs you’ll be meeting. Every hotel you enter, every plane seat you sit in will be swarming with them. So sanitize those hands and areas like your life depends on it! (Because, you know, it might.) Clip a travel size hand sanitizer to your wallet and purse (or Murse?). Pack the travel wipes in your bag for untidy surfaces you may encounter. If you need to go full mask in order to protect yourself on the plane or densely populated areas, there’s no shame in your game. You make that mask look good, baby. Take a shameful amount of selfies and have so much fun! Because, you know, YOLO! We want to hear your story. Become a Mighty contributor here. Thinkstock photo via g-stockstudio.

Stacey Philpot

Signs of Strength in Chronic Illness Warriors

While it might appear strange to those outside of our world looking in, when you have a chronic illness it is easy to feel weak when you can’t do what you once could. Take a pounding from your body enough days in a row and before you know it, you might find yourself questioning your own strength. But everyone around you can see your grit. Today, I think you might recognize yourself in these five signs you’re stronger than you think. 1. You’re still here . There’s been ample opportunity to call it, to throw in the towel, declare it all “too much,” and yet you don’t. Every day your feet hit the floor, and you go at it again. Oh, I’m sure you make plenty of morbid jokes about quitting, changing your name, your job, your identity and moving to Guam, but you don’t. Not only are you still physically present but also you’re still emotionally engaged. You’re still fighting. Yes, you stop and take a breath, you come up for air, but you always go back to the fight. What’s my play here? Do I remind you that you’re one tough dude? Do I tell you strength oozes from your pores? You pick. The truth is you’re tougher than you like to give yourself credit for because you’re afraid it might run out one day. Let’s not worry about that. Let’s just celebrate the incredible tenacity you’ve demonstrated every single day of this journey thus far, OK? 2. You help others. How do I know this? I’ve seen your strength. I’ve witnessed it all over the internet. I’ve seen it in waiting rooms, in parking lots, in daily interactions. You’re sitting next to me, waiting to find out if the cancer has returned. When I can’t figure out why my phone won’t accept the office Wi-Fi password, you see my disproportionate response to this. You understand I’m responding to something unseen. You take my phone and seamlessly log me on, hand my phone back to me as you get up and open the door for the woman struggling to get her mobility device through the door. She’s having a hard time during this first week of her treatments, so you coach her through, giving her the link to your blog, where you respond to thousands of hurting women weekly, even when you’re hurting. You want your pain to help others. You carry a silent strength with you wherever you go. 3. You share your story. Not one to overwhelm people or create drama for the sake of drama, you try to tell your story in pieces whenever possible. You know, having lived it, it can be a lot to process. You also know, having lived it, if you can make it through, so can others. So you share your story, but only the pieces the person sitting in front of you needs to hear at that moment. After all, it’s about them, not you. You don’t have a need to be seen, but you do have a deep desire to meet others where they are and walk with them to the other side. So you tell your story in pieces. You invest it in the beautiful world around you because strength adorns you. 4. You listen. In a world where everyone fights to be heard, you listen. You really listen. You hear what hearts are saying. You know it’s something different entirely than nodding your head until the other party stops talking so you can make your point. Furthermore, you don’t always respond. You hear the difference between honest requests for dialogue and a need to be right, a desperate need to be needed or to fix you. You’ve perfected the ability to listen to someone else’s rant about how your pain is your fault without railing against them. In fact, you can listen, hear their pain and know they’re not ready to hear the truth. You have the strength to speak and the strength to be silent. You are a warrior. 5. You love. It’s no secret your heart has been broken. Your body has betrayed you. People have betrayed you. You’ve not let this convince you all of life or humanity are unworthy of love. Just the opposite, you’ve learned love heals. You live and you love to the fullest when all of your history is trying to convince you not to. Perhaps the darkness in the world knows the strength of your love. You see through hardness and send your love as your ambassador. Maybe you often feel weak. And yet, day by day, your strength is changing the world and raising up an army of warriors behind you. Don’t quit. A version of this post originally appeared on Chronically Whole. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via jelenahinic.

Stacey Philpot

When Chronic Illness Leaves You in the Darkness

One minute you sit within the light. Comfort and companionship surround you. Perhaps, it’s a Friday night tradition, hosting dinner at your house, your closest friends laughing and dining together. The climate of the room adds to the perfection of the night. It’s cool, but not too cool – a welcome reprieve from the punishing heat outside. The food and fellowship nourish your soul. You have everything you need, right here in this room, within arms reach. And then the lights go out. Perhaps, it’s a power surge, too many people entertaining, with the air conditioning set too low on this lovely evening. Suddenly, you sit in total darkness, unable to see your hand in front on your face. The entire neighborhood must be without power. You stand and begin to fumble your way towards, where? You don’t know where you are or how to get towards the light. Suddenly you feel panic rising in your chest, constricting your throat, the air becoming harder to obtain. What was safe, familiar, and inviting just seconds ago is now menacing, unknown, and terrifying. Quickly, the temperature rises and while you can hear the voices of your people, you don’t know how to get to them. How did life change so quickly? Hopefully, the lights will come back on momentarily and life can resume as normal. But what if instead of the lights going out at your dinner party, words were spoken over you, which ushered you into darkness? What if, instead of a power outage, it was actually a devastating accident, a mental breakdown, or a sudden barrage of symptoms which rendered you unable to get to the ones you love, even though you could still hear their voices? What if one moment life was perfectly lovely and the next you were left with panic rising in your chest, wondering when someone might turn the lights back on so life could return to normal? What if no one ever turned the lights back on and you had to learn how to navigate the darkness? The first year of my illness was spent in a fog, darkness really, which swallowed me whole. One minute, I’d been sitting in the light next to the people I loved, laughing and enjoying the moment. The next minute I sat in total darkness, unable to get to anyone, unsure of how to find the light. Sheer terror consumed me. How long would it be before the lights came back on? It turns out I spent a year in the darkness. Not because I suddenly got better within that time frame and then the lights came back on, enabling life to go back to normal. But because, eventually, I learned to find what I needed within the darkness. I learned to find my way to the people I love. Slowly, the darkness lifted. The fog was dense, but it no longer left me petrified. I’d lived in the darkness long enough to no longer be afraid of it. Is the darkness swallowing you up today? Are you living in a fog, unable to get to the people or things you love? Are you waiting for the lights to come back on so life normal life can resume? Can I tell you today the lights may never come back, on but the darkness won’t last forever? You will find your way. You’ll find the tools you need in the darkness. Eventually, a friend will place a flashlight in your hand. It won’t be long before you find the matches and light a candle. Before you know it, the panic in your chest will begin to subside. Cooler nights will come, and open windows will bring relief. Hold on, it will be bearable before long. Before you know it, you’ll catch yourself laughing again. One day, maybe a year from now, maybe two, you’ll look back on that night the lights went out and you’ll marvel at how far you’ve come. How in the world did you learn to live in the darkness? How did you find light where there was none? And then in a year or so, maybe two, you’ll find someone wandering about, panic-stricken in the darkness and you’ll place a flashlight in their hand. You’ll pull them close and whisper, “Hold on, friend, the darkness won’t last forever.” Follow this journey on Chronically Whole. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: ananaline

Stacey Philpot

When My Daughter Called Me 'Brave' in the ER

Last fall, I experienced terror on a new level. In the days following my monthly intravenous immunoglobulin (IVIG) infusion for common variable immune deficiency (CVID), my body began to spawn unusual, intensely painful symptoms. They worsened by the day. Generally, I have a rather intense headache and a tremendous amount of fatigue in first three days after my IVIG. On the morning of the fourth day, I wake up a new woman, healed like clockwork. This reaction, however, was a different beast entirely. I lay in bed with a towel covering my eyes to keep the light out. Leaning over produced the overwhelming urge to vomit. A rash began to crawl up my left arm, and it hurt to turn my head. My skull felt too small for my brain. I sat in the bathtub and cried in agony. On the morning of the fourth day, I did not wake up miraculously healed. Instead, my 5-year-old daughter awoke screaming out in pain,“My head hurts so bad, Mommy! Make it stop!” I quickly took her temperature, still trying to shield my eyes from the light. 104.2 F, I’d never seen her temperature this high before. I frantically texted my home health nurse who’d been at the house the night before to change the dressing on my PICC line and asked, “Do I have something contagious? Did I give it to my daughter?” I’m still trying to heal from her answer. “I think you may have given her viral meningitis. Have your husband take her to the ER. I’m on my way to get you right now.” I strapped my daughter into her car seat while she vomited into a bowl and cried for me to come with her. My heart felt like it had been put through a paper shredder. In truth, I was too sick to go with her.  In a matter of minutes, my daughter and I were set up in ER rooms next to one another. She cried for me, but I wasn’t allowed to see or touch her. My room was set up for precautions. She needed me, and I couldn’t get to her. Never had I felt more powerless. What had I done to her? It wasn’t long before a doctor came in and told me my daughter was laughing and watching cartoons. Once her temperature was controlled she was her normal, happy self again. She’d been cleared, now me, I was another story. They considered a brain bleed and several other fun options. About six hours into one of the worst days of my life, the door to my dark, cool hospital room cracked open. In walked my sweet little girl, still dressed in her pink and black polka dot bunny nightgown. An adult sized mask swallowed her face. She stepped to the edge of the bed and asked, “How are you feeling, Mommy?” Tears fell from my face at a rapid pace. “They said I still can’t touch you, but I brought you these prizes for being so brave.” Then, she slid a hospital issued package of graham crackers and apple juice onto the bed. From behind her back, she revealed a Tinkerbelle sticker she’d chosen for me, “Because you are so brave,” she said again. Here is this moment of my life when I felt least brave, yet my child had named me brave. The tears wouldn’t stop. I took her sticker and hid it under my pillow. After she’d closed the door, I held onto the sticker and sobbed until my body shook. Sometimes, we all need someone to name us brave when it seems all is crumbling around us. In the end, the neurologist said my body had decided to spawn a new illness called vasculitis. I don’t have nice things to say about vasculitis. Her and I have gone toe to toe several more time since that first episode. My Tinkerbelle sticker still sits on my dresser, reminding me that I am brave, even when I feel it least. And so today, I’m passing out stickers and snacks. I’m meeting you in the scary, hard, terrible places and I’m naming you brave — even when you feel it least. We want to hear your story. Become a Mighty contributor here . Lead photo by Thinkstock Images

Stacey Philpot

Types of Friends I’ve Encountered as a Person With a Chronic Illness

People are messy. If you’ve ever raised a toddler, you’re most likely nodding your head and offering me a hearty “amen!” However, I’m talking about a different kind of messy. The one that implies we humans aren’t always simple, drama-free, uncomplicated or easy to understand. Perhaps you have experienced this “messiness” in your friendships as you navigate the highs and lows of chronic illness and rare disease. You love your friends, but you don’t always love how they respond in your time of need. You adore your people, but you wonder if perhaps they might be available to come down off their high horse any time soon and give you a hug? In general, I’ve found my friends have a myriad of responses to my ailments and illnesses. There are: 1. The drifters. These friends might be what your parents would have called “fair-weather friends.” Whatever the reason, they aren’t equipped to cope with the magnitude of your pain. Maybe they don’t know what to say or feel about your circumstance, so they end up vanishing. 2. The coaches. These friends can’t understand why you feel the need to talk about your illness so much. They’re perplexed by why you can’t do the things you once could. They continue to pressure you to do things you’ve told them over and over again your body can’t do. They’ve never faced anything remotely similar to what you’re going through, nor have taken the time to learn about your illness. Yet, they feel it’s their job to coach you on how you should handle your circumstances. They tell you how you should and shouldn’t feel and what you’re doing wrong. 3. The keepers. These friends are in it with you through thick and thin. Their hearts break to see you hurting. They constantly ask, “What can I do for you? How can I help?” Your grief and processing are met with love and not judgment. They love you on your worst days just as much as your best. They meet you with practical help whenever possible and go out of their way to let you know you are seen and your story matters. These friends carry you through the darkest days of your life. Illness can be the great “friend sifter,” and while I wouldn’t wish illness on anyone, this friend sifting doesn’t have to be a bad thing. Knowing who is in our corner for the long haul and who we can count on when it really matters is a gift. We all reach a point in our lives where we no longer wish to invest in fruitless relationships. Illness pushes us to this point much faster. We no longer have the energy to invest in relationships that lack depth and staying power. Now, it’s all about quality versus quantity. All we really need are a few friends we can count on when things get hard. A version of this post originally appeared on Rare Daily . We want to hear your story. Become a Mighty contributor here . Lead photo by Thinkstock Images

Stacey Philpot

What to Do When You Don't Have Any Energy

If you are familiar with the impending, looming sense of dread heaped upon you at the mere mention of one more stop on the way home, you might be a spoonie. If you have ever cried upon being asked “Are we going anywhere today?” by your children, you might be a spoonie. If you have ever eyeballed the distance between your vehicle and the entrance to Target, determined it insurmountable and headed home, you might be a spoonie. If you have ever awoken to a sound you were certain was a full-on robbery and wished they’d keep it down, you might be a spoonie. More specifically, you might be a spoonie who has come to the end of their spoons. I don’t think there’s any question in my household when I’m running on a spoon or two and I’m certain there is a look in my eye, a desperation that crosses my face as I hand over my final spoon to the forces that be. If only I could teach my 4-year-old to recognize it, or to understand what it meant when I said, “Mommy’s all out of spoons right now. Can you go ask your daddy?”It was fitting this morning when I dragged myself to the kitchen for a bowl of cereal before hurling my body back in the bed for a day of post-holiday recovery. I poured my cereal and milk, sleepily opened up the silverware drawer and sure enough, no spoons. It’s true. The season of no spoons is upon us. Just last night my husband asked me about some Christmas decorations he wanted to bring in from the garage. He wanted to know where I wanted him to put them. The answer I gave him is that I didn’t have that — the decorating — to offer at the moment because, you see, I was fresh out of spoons. (And also, the real answer about where he could put those decorations was X-rated and would have been the lack of spoons talking.) So what do we do when we find ourselves fresh out of spoons? Rest: This seems self-explanatory and yet you and I both know it is often the last thing we do. Instead, we try to push through. Because, inevitably, running out of spoons will come at the worst time, such as the day of the holiday party, before company arrives, when the shopping needs to be done, etc. But we’ve learned the hard way that forging ahead on no spoons will only damage the motor further. Time to listen to our bodies, and they say rest. Pace ourselves: We know that there are many meaningful traditions that we are going to want to take part in. It’s up to us to decide which ones and to what degree our bodies can really handle and schedule accordingly, to the best of our ability. If we know that preparing for the party will take approximately seven spoons, we probably shouldn’t schedule a 12-spoon event the next day, but maybe instead a 12-hour nap. “What are you doing today?” “Making up for lost spoons, you?” Ask for help: “Hey Bob, do you think I could get two or three spoons’ worth of help preparing for the party on Friday? I’m trying to save a few of my spoons for the concert on Saturday night. You can? That’s awesome. Thank you so much.” And lastly, when you run out of spoons, let people know. This way they can support and encourage you. Missing out on special days because you’re spoonless can feel pretty crummy. Being honest and up-front about it helps prevent misunderstandings and also helps us feel less alone in our spoonie world. From my home to yours, may you have a very special, spoon-filled holiday season. Don’t get all the spoon stuff? Read here. A version of this post first appeared on Chronically Whole. We want to hear your story. Become a Mighty contributor here .

Stacey Philpot

What You Need to Know If You Just Got Sick

When sickness began closing in on me, I felt guilty and conflicted about a lot of things, maybe even most things. It was as if I was drowning and unsure of who I was in light of these new circumstances. And what were the ground rules for these (crappy) new circumstances? Not knowing how to approach what was happening made it all the more distressing. Today, I’m sharing 10 things I wish would have known when I was newly sick. 1. Your work and your worth are separate. While this seems self-explanatory, it didn’t feel that way. It felt like if I could no longer work, I was no longer worthy of love. I didn’t realize how entangled the two had become for me. 2. It won’t always be this scary. Maybe it takes us a while to learn what we can really do. Maybe I’m just a scaredy-cat. Either way, those early days were some of the most frightening I’ve known. If today you’re shaking in your boots, know that, like Stella, you will get your groove back. It won’t always be as scary as it is today. 3. You didn’t do anything wrong. I know it seems like you must have for this to be happening, but listen — you didn’t. This isn’t a punishment. It’s not because you are a bad person, a faulty human being or a poor housekeeper. And yes, there are sometimes people who say things that leave you feeling like it is your fault. Be like Taylor Swift and shake it off. You didn’t choose this. 4. Someone will figure it out. In the beginning, this felt like a given. But over time, answers felt more like a pipe dream than anything else. Would they ever come? If you are one of the many who suffer without clear answers as to why — my heart breaks for you. I don’t know when it will happen, but please know I’m praying the right set of eyes find you and lead to the answers you’re searching for. 5. You don’t have to hide. You don’t have to “protect” everyone else from the horror of your illness. In fact, you will find the burden is a bit lighter if you let others bear some of it. There are people in your life who will love you just as much on the bad days as they do on the good. 6. This isn’t the end. Yes, life is going to require a “new normal.” Things aren’t going to look or always feel the same. But life is going to go on. There will still be much to celebrate, beautiful relationships and new adventures. 7. Forgive yourself. Let it go. All that pain and shame over not meeting your own expectations, all those feelings of self-loathing and hatred? Send them packing. You’ll have enough battles to fight. Beating yourself up shouldn’t be one of them. Lay the baseball bat down. 8. It won’t always be this lonely. You’ll find a tribe that understands you. Eventually, your world will include deep, rich meaningful relationships that are short on expectations. You won’t always let symptoms isolate and back you into a corner. Eventually, you’ll hear the cries of “Me, too!” and know you’re among friends. 9. Love is given, not earned. This is a hard lesson to learn. Now that your hands are tied, you may feel like no one will ever love you again. Worse, you may feel that’s the way it should be since you are now unworthy of love. This couldn’t be farther from the truth. You haven’t changed. Now is the perfect time to learn that love is given, not earned. 10. You can still be you. Illness doesn’t get to win. You can still chase your dreams, sing your song, leave your mark on the world. If may not look the way you thought it would, but you can do it, anyway. What things have you learned along the way? What tips would you share? We want to hear your story. Become a Mighty contributor here .