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    You’re Not The Only Chronic Illness Warrior

    Part 1 of 2 “I can’t, but thanks for the invite.” The sentence echos on my lips, spoken to more people than I remember. I don’t know about you, but I don’t like to say no. I thrive on adventure and exploration. I’m a social butterfly.

    And yet, I’ve said so many no’s I never wanted to. I wasn’t always this way. But when I first got sick as a young teen, I watched as “out of sight, out of mind” became a reality in my life. Friends slowly melted away.

    Part of it was because my lifestyle changed. My friends were going to dances and sports games. My community was gathered at church potlucks. But I lay in bed, counting the dots on the ceiling, wrapped in my yellow-y cotton blanket, straining to hear my family’s footsteps and conversation.

    Part of the friendships disappearing simply came down to a difference in experiences. Chronic illness changed my priorities and my perspective on life. I didn’t care so much about grades when I was fighting for my life, and it became increasingly challenging to connect with my peers even when our paths crossed.

    The Reality Is, We Are Not Alone

    After nine lonely months staring at the ceiling, I needed to change tactics. Maybe my local community wasn’t coming to me and I wasn’t able to go to them. But surely someone somewhere had similar experiences. Surely I wasn’t the only teenager with a chronic illness!

    I started to reach out online — on platforms very similar to TheMighty. Soon people started saying “Hey, this is wild, but . . .” and stories began to show up in my inbox. It was amazing. The more I shared my story, the more others shared their stories, and before we knew it we didn’t feel so alone anymore.

    I remember looking in my chronically- ill friend Mindy’s blue eyes, and in that moment we both felt seen. More than that, we both knew someone understood. Truly understood. It was — is — incredible. As this realization began to sink in, I did something a little . . . outrageous.

    I got some friends together, and we put together an online conference (before COVID made them cool). A teenager in her bedroom — sounds like a fun little project, right? But so many people with chronic illnesses I met were lonely and desperate for connection. Many more than I ever realized.

    Hundreds of people registered to attend that first event. Watching the live chat was a healing balm to my heart as I saw chronic illness warriors interact with each other, cheer for each other, and comfort each other. As the conference came to a close, I hastily put together an online forum because none of us wanted the connection to end. Seven conferences and thousands of chronic illness warriors later, that chat has grown into a community of people who understand.

    What a beautiful thing! People who know exactly what it’s like to be passed from doctor to doctor. People who have turned down invitations, sat on the sidelines, and needed help grocery shopping. People who have felt the shame, fear, anger, and grief. People who have stared at those dots on the ceiling day after day, wondering if they’ll ever get to start a career, be a parent, or even just walk.

    I longed for such a community during so many lonely nights of painsomnia, crying, and begging God for help. And friends, it exists. There are so many people who walk through chronic pain and chronic illness every day. Like Rachel over on the Diamonds conference community, who is parenting four kids while navigating Dysautonomia. Or Esther, a young adult who found herself facing POTS as she finished college. Or Cassidy, whose dreams are in limbo as she handles EDS, POTS, MCAD, and Gastroparesis with her service dog Heidi.

    In 2018, the CDC reported that 51.8% (129 million) of average adults had been diagnosed with at least 1 of 10 chronic conditions. That’s mind blowing. As I’ve recently joined a new community, I’ve found that statistic to be true in the friends I’m making. Sitting at a table of four friends from church recently, two of us were chronically ill. Of the eight people I see most often, none of whom are related to me, five have a chronic condition. And I didn’t even know that when I met them and began building a friendship!

    Before I got sick, I had no idea what a chronic illness even is. There’s a reason we call them “invisible illnesses.” And yet, the longer I lived with a chronic illness, the more I realized just how common it is.

    Let me say it again: you are not alone!

    Someone Else Is With You Too . . .

    For those of you who share my belief in God, there is another reason we are not alone.

    Even if we were alone in our experiences, even if no one else in the world experienced the illness we have, even if no one has asked the same questions we have — we would still not be alone. It is my belief that there i

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    Can we still do things freely in again?

    God help us we've so many locations to go for Thanksgiving vacations and Christmas too, because of the covid19 one can go out freely or go to your place of choice

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    Share an example of something unhelpful or harmful someone has said to you when discussing your CFS.

    Sharing your experiences with others about living with chronic fatigue syndrome can be incredibly validating, but sometimes other people’s reactions can be disappointing and hurtful (even if done unintentionally).

    Have you been told something unhelpful or harmful when talking to others about your CFS? How did you respond?

    #ChronicPain #ChronicIllness #COVID19 #ChronicFatigueSyndrome #PosturalOrthostaticTachycardiaSyndrome #AutoimmuneDisease #Spoonie #Fibromyalgia #IrritableBowelSyndromeIBS #Migraine #Depression #Raynuads

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    This is myself and my ex (we’ll call him D). D and I dated about 2 years ago for about a year and a half (started in 2019). I gave up EVERYTHING for him. I was in a severe mental state, suffering from PPD, PPA, and PTSD as well as untreated Bipolar 2 and ADHD. My ex fiancé (we will call him M) and I had a child in late 2018. We were living with his toxic family, he had total control over my life, I had no job, no license, no real family to go to, he made me completely isolated. Fast forward to early 2019, I met D a long time before that via a “friend” and we stayed in touch minorly over the years. We really started connecting around late 2018. By the time 2019 hit M had given up on me and his family just became more and more toxic. I started meeting up with D in secret. We would just talk, nothing else. But early 2019 I told M I was in love with D, he didn’t even seem to care. In April I ended up going off the deep end, I wanted to kill myself. So I went to the only family I had left and I stayed there for a few days. Over the course of those few days M broke off our engagement, which hurt at first but wasn’t so bad considering we hadn’t loved one another for years but I knew nothing else and was completely dependent on him, so I stayed. I was homeless at that point, I had gotten a job that I worked 18.5 hours a week at and I was spending my nights in D’s car or on his drunk mothers couch which she started charging me $400 a month for. Finally I got an apartment, sorta. M got full legal custody of our son due to my mental state. I was able to take the bus and Uber to my son and work. D would sometimes drive me. Sometime in early 2020 I moved in with D and COVID hit. I couldn’t see my son due to his family having medical issues. My mom was diagnosed with cancer on my birthday and died exactly 2 months later. I was the only one with her when she died. She was at home, I was taking care of her. Giving her meds, changing her diapers, trying to get her to eat. It was horrible and watching her die was traumatic to say the least. We buried her next to her parents and my aunt and I went through her whole apartment. It was so sad and I didn’t know how to handle that. I started going off the deep end again, hurting myself really badly, getting into petty arguments, shutting out work and my son. I ended up in the hospital. In the parking lot D said to me “if you go in there you’ll never get your son back.” I was so numb I didn’t even care. I did my time and got better but as soon as I came home I was depressed again. I packed up my stuff and moved in with a friend for a few months till I got a place of my own. When I came back up here I got back together with D, but he was just using me for sex. He ghosted me after a few months and started seeing someone else. I was heartbroken. After a few months he told me we didn’t work because I had a son and he never wanted to be a parent. I cried. I had never felt a love like I had with D and to this day I still love him. Fast forward to now, D and his girlfriend broke up a few weeks ago. He had rearranged his whole life to be with her, like I somewhat had with him, and now he was lost. He turned to me for comfort. We have a mutual understanding this time that he is solely using me as a crutch till he can figure himself out. But I’m so torn. I still love him but he doesn’t love me. I was so happy with him, I thought, but now I’m not so sure. He’s lost some of his values that we shared. For example: he’s started taking edibles and I and strictly against getting high due to personal reasons. And he used to agree with me on that. He’s cold and detached but then sometimes he seems like the old D I used to know. I don’t want to separate from him again because I want to help him stop hurting, even for a blip. But it’s toxic to me. I know the right answer is to let him go and move on, but I just can’t. I’m not strong enough. I love him and I hate it. #PTSD #Bipolar2Disorder #PostpartumDepression #PostpartumAnxiety #ADHD #ADHDInGirls #toxiclove #toxicrelationship #Abuse

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    Zero Love & Belonging for me & now my body is continually rejecting me with new diseases too. Pain vs Suffering

    This is my “BEAUTIFUL FAMILY”; My daughter-38 and older husband and his son to the left. To the right, my Diamond, her daughter, then new daughter in law and son (20). I should say my grandchildren, right. When? I had to begin going behind her back to see my Diamond when she is with her father. Then severe Long CoVid caused Dysautonomia, a big car accident where I got off pretty well- except my vision was damaged even more and Dysautonomia made even worse. I fainted every day for awhile. The 20yr old harmed me last & most 2 weeks after his 18th birthday, just a few days before mine. His mother hugged and consoled me. Made him move out. She didn’t come right back as promised. She went tanning for 4 days on a boat with an ex & still blames me 100%— again!
    That beautiful young man I have always loved like my own was raised to hate me once his mom became jealous. He is gone now too. First he cleverly acted to cause me to be deleted from THE family holiday celebration.

    My daughter sent me this photo after Thanksgiving. I had to call truce due to a tragedy in a woman’s life. Still, she avoided me entire month to avoid a conversation about Thanksgiving. She made herself Matron of the family. I am the ONLY adult my age (58) or older who’s child didn’t do something for them to honor them for the holiday.

    It does not occur to her that all I can see is everyone’s joy as long as I am absent. My mom disowned me for being disabled years and years ago, and my sister left drugs finally to take my place with Mom. She even removed every single picture out of the picture albums shoved them in an empty kids chalk plastic container and gave them to my daughter who left them with her ex. He dumped them on my front porch. Imagine that mind bend!! That was who my holiday anchor was until I was disabled and she uninvited me year after year and then nothing.
    Before or maybe not long after the incident with my grandson I directly asked my daughter, “Do I have love and belonging with you?” Her, “What do you mean!!??” I just repeated it palms up. Her, “I don’t know what to say. This feels like some kind of trick.” she said suspiciously. I was aghast. I was on the verge of tears and turning around, “No Blank. It is just that. I want to know if I have love and belonging with you.” And she answered me plainly. “Then No. You don’t.” This has come up and she has never changed it. I suppose I have a relationship because of my Diamond girl and maybe because she reaches out to me and says she loves me because I’m always here for her. Nope. Codependency left the building couple years ago. I have even had her on no contact for my sanity and lost the girl.

    My depression is so deep I can barely take a breath right now. I want to be loved and to know belonging before I die.
    I wake in #Pain everyday. My fourth CoVid caused my #longcovid to go Primal on me. BA.5 is not like the rest, honest. I finally turned to my alternative Dr herbal Chinese Medicine. I have a Master’s in Nursing and know know know that Western medicine might be covered but is also prescribing black label medications for chronic pain without the deep discussion patients deserve. My own mother in law suffered a stroke as a result of this. They added a black box label, but who explains that it even tells people? See-I’m so #angry . So I gotta pay $$$ out of Disability and $$ monthly for livability. From disability have a tea special made for me 3 times a day that controls my chronic pain enough to move in the house and such. It’s great. Still NO ONE understands that #ChronicPain or weakness, or just can’t either. Major #Depression is when I start to cry. Severe Depression is when I stop crying. Sometimes I start thinking and sometimes I stop. It is much scarier if I start. Pain is tolerable, #suffering is not, and #chronicsuffering is the most brutal of all.
    This Grief I bear, of having NEVER had #belonging once I was also #Abandoned by my poor child that I gave all my limited resources to, I died inside. I substantially failed and raised a daughter who is compassion and empathy challenged. I don’t remember being taught to call my grandparents. I didn’t teach my daughter to. My mom is brutal. Oddly, my daughter repeats her and has barely known her?
    My last straw today is a roommate who played the second mom, daughter who loves you, won’t abandon you card. I didn’t buy it. It’s talk. But I thought she could at least be a civil roommate. She walks in and out of the place without a word. Just jumps on that ABANDONED button as hard as she can! Profanity to the Nines! #Profanity #CPTSD #PTSD #ChronicDepression #Anxiety #SocialAnxiety #AgoraphobiaWithoutHistoryOfPanicDisorder #Grief #longcovid #disposable

    I tried. I don’t have words for what’s happening inside me. This is like Anticipatory grief of a hospice patient you know is gonna pass but we keep holding on and loving them just the same. It all makes the body even harder to manage. Thank you, whoever you are.


    Is this to be expected with a new job?

    For background, I have nonverbal learning disability (disclosure went amazingly well), life-long anxiety, and depression that started at puberty (managed very well on medication) and was in therapy, but haven't been in almost 3 years; my last appointment was January 2020, and Covid hit in March, and I haven't felt the need to go back.

    I started my new job about 6 weeks ago, and suddenly, things I thought I had mostly worked through years ago, are being triggered like crazy. I've already cried twice and almost a 3rd time, which hasn't happened over "little" things since I started meds back in 2017 (with the rare exception around PMS, which is not a factor this time). One of those was a big thing, but the other wasn't, and today, a completely innocent comment from my favorite manager sent me spinning. I went on medication about a month before I was hired at my last job, which I had for almost 5 years, and the management styles were very different.

    I can't tell if this is a typical part of the adjustment period, increased stress, learning curve, new everything etc. if it means this job isn't a good fit, I just need to go back to therapy (which I probably should anyway), or if I need to consider a medication adjustment. I know only I can figure it out, but thoughts? #Disability #Depression #Anxiety #neurodivergence #Employment


    New here

    Hi everyone! My name is ingewiel, I’m here because I’m a COVID long hauler #ChronicFatigue #longcovid


    Who can I actually turn to?

    #ComplexPosttraumaticStressDisorder the last few visits to my GP have been devastating to my recovery. Part of my trauma is lack of their help after my accident that caused all of this so I really am at the end of my abilities when I do go to them.
    Visit 1) After a re-trauma during Covid when PTSD symptoms were horrific the GP I finally got to see just shrugged it off as depression (surprise surprise) and basically told me once Covid was over it would get better. It didn't funilly enough so accesed counselling through my union and got diagnosed with PTSD.
    Visit 2) having the diagnosis made so much sense to me after thinking I was going crazy. Counsellor worked with me to go to GP. I finally went to be told the diagnosis didn't count as it wasn't a doctor and the diagnosis took time. The 3 months I had with a fully-qualified-to-make-the-diagnosis counsellor was apparently less time than the 4 minutes it took to dismiss me.
    Went private for counselling as no help from GP and 3 months in she thinks I have CPTSD compounded by the GP both now and in the past. Lots of work with them to get courage to see GP.
    Visit 3) basically a telling off that I hadn't seen the GP first and refusing to medicate despite now clinically very significant symptoms.
    I haven't had more than 3-4 hours sleep a night for 2 years now without either taking too many prescription painkillers or illegal drugs.
    Who can I turn to??? My counsellor is amazing and I have finally managed to find the strength to tell work, friends and family but I need medical intervention as its getting really really hard to not do myself harm/ worse.
    I don't want to give up but I don't know how to carry on


    I’m new here

    Hello everyone! I joined because I became disabled after getting the COVID-19 vaccine and I don’t know anyone else that has happened to. So, I would like to communicate with others about illness and disability and how to make my home safer for a disabled person.
    #CognitivelyDisabled #ImbalanceIssues
    #Hypersomnia #VaccineHauler