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Tessa Koller

Health Effects of Long-Haul COVID-19

It was just three months ago when I was convinced I was living in a “new normal.” Back in August 2021, I caught the COVID-19 Delta variant and for more than seven months now, I’ve been fighting long-haul COVID-19 . People seem to think that only your first COVID-19 symptoms can send you to the emergency room. This isn’t the case. Long-haul COVID-19 just about eradicated me, and I’m still having significant hang-ups in my recovery. For months, I was struggling with dizziness and nausea, several headaches a day, fatigue I wouldn’t wish on anybody, chest pains that went from dull to unbearable in the blink of an eye, and as of December, a shutdown of my digestive system. One day, the function of my digestive tract froze up, and I couldn’t use the restroom. It was December 4 when it started, though before this, I was having instances of utter discomfort, constipation, and inability to urinate. By then, my health took such a drastic turn that I thought I had a kidney stone. I knew this couldn’t be the case when I found myself in a diaper. My symptoms were troubling. Before I go into more detail, I first must mention that I know about the challenges of dealing with health conditions. I have heart disease, lung disease, fibromyalgia, postural orthostatic tachycardia syndrome (POTS), depression, and anxiety. They are all associated with a genetic syndrome I live with, 22Q11.2 Deletion Syndrome, which is commonly known as DiGeorge Syndrome. I’m at high risk for COVId-19, and these risks maximized in intensity and frequency since I’ve started combatting long COVID-19. On December 4, I found myself nearly in septic shock, and my kidneys and liver also shut down. The only explanation I received from doctors was this was a long-haul COVID-19 case in the works. But I could’ve never prepared for what I was about to endure. It was alarming being told that my digestive system had frozen up, and I could go through this again. I was so constipated that I was losing feeling in the lower half of my body — starting just below my waist. Somehow, I made it through without ending up in septic shock. I knew, though, that the ramifications of my illness would impact me to a stunning degree. Long-haul COVID-19 has impacted me already. It’s the middle of March 2022, and I am still experiencing digestive system stalls. I also still have difficulty breathing, and I discovered that I may have an autoimmune disease as a result of my COVID-19 breakthrough infection. I’ve had to accept that I may struggle with symptoms related to long-haul COVID-19 for some time. I’m somebody who is a realistic thinker, and I personally don’t believe that positive or negative thinking has any importance on any outcome. I do meditative breathing when I’m experiencing intense physical pain and lose functionality in my body systems. Meditation, yoga, stretching, breathing, and being active when I am able has helped me — but not completely. Right now, I’m focusing on internal healing — treating these symptoms and flare-ups from the inside out. For three months straight, I’ve increased my Vitamin B12, D-3, Omega-3 and Omega-6, and zinc levels, and I’ve noticed changes in my overall energy. On those days when I must honor my body and simply surrender to daytime sleepiness and fatigue when my body wants to sleep but my brain doesn’t, I give my body what it needs. I’ve always listened to my body and acted accordingly during these times, and this has been my approach to wellness.

Rosario N
Rosario N @rosarion

Exploring the Link Between Long-Haul COVID and Suicide

One day, I messaged greetings to a friend who also has long-haul COVID, but I didn’t hear back from him immediately. It wasn’t until the next day when I recognized the familiar, friendly Facebook new message ping that I found in my inbox his messages, where he recounted to me his ordeal. He described how he experienced a TIA, or transient ischemic attack — also known as a mini stroke. His brother and step brother had to give him CPR while his family waited for an ambulance to arrive. But he didn’t recollect any of it. “I just don’t know how much more I can take,” he cried. His confession called me back to June 2021, when I was in my own fight against long-haul COVID symptoms, including struggling to breathe with San Antonio’s high molds, to which I had become severely allergic. Day after day, I battled with the environmental allergens and there was no reprieve in sight. I was doing everything I could to fend off any exposure to mold spores and my situation became so dire that I even covered my windows with cloth. My luxury apartment community was obsessed with landscaping the lush courtyard my balcony overlooked, and the maintenance team was diligent about cleaning the resort-inspired pool and removing debris and leaves daily, which, for me, meant more pollen particles floating nearby and worsening allergies. I often needed to retreat to the bathroom until the cleanup was complete. I had uttered the same words to my mother, I recalled, explaining to her that I was not being pessimistic about my illness; I was s-u-f-f-e-r-i-n-g. I am a resilient person and have already overcome multiple hardships in life, but this illness — this long-haul COVID monster — I simply could not defeat. It was ruthless and I was in agony, and no matter how hard I tried, I was losing the battle. Two days later, while still in the hospital for the mini stroke, my friend experienced for the first time a grand mal seizure, which he explained to me looks much like what you think of when you hear the word seizure: body shaking due to violent muscle contractions and a loss of consciousness. Grand mal seizures can be life threatening and, in fact, his body went into early sepsis, a state in which the body releases chemicals into the bloodstream to fight infection. I thought about how he said he’d already felt like giving up after the mini-stroke. He had survived the TIA and seizure, but these new developments would hinder any recovery progress. I also thought about the millions of other long-haulers across the world who may feel or have felt like giving up the fight, too. Some even had taken action. Long-Haul COVID and Suicidality In March 2021, Kent Taylor, the CEO of Texas Roadhouse, a major restaurant chain, died by suicide after struggling with long-haul COVID symptoms, including tinnitus. Another high-profile long-haul COVID death followed in June 2021 when the news media reported the suicide of Heidi Ferrer, a writer known for her work with the late 1990s TV show “Dawson’s Creek.” Her husband, Nick Guthe, shared that Ferrer had been struggling with long-haul COVID symptoms for 13 months. Guthe has since advocated for the research and treatment of long-haul COVID. On January 12, The Herald reported that a Scottish doctor and reproductive clinical researcher, Professor Fiona Denison, died by suicide, after battling long-haul COVID for two years. The deaths of Taylor, Ferrer and Denison have prompted discussion about the connection between long-haul COVID and suicide. Is suicidality a risk of long-haul COVID? Researchers are now beginning to study the mental health of patients who have recovered from COVID-19 and those living with long-haul COVID. An expert psychiatrist associated with the James J. Peters Veterans’ Administration Medical Center, Columbia University College of Physicians and Surgeons and Mount Sinai Icahn School of Medicine, estimates those with long-haul COVID are at an increased risk for suicidality due to the brain inflammation damage associated with the virus as well as symptoms from its psychiatric, neurological and physical effects. The American Psychological Society considers suicidality to be “the risk of suicide, usually indicated by suicidal ideation or intent, especially as evident in the presence of a well-elaborated suicidal plan.” In fact, patient-led and academic research published in The Lancet named suicidality as a long-haul COVID symptom that warrants more research, recognizing that it has largely been omitted from discussions. Later when I asked my friend why he contemplated death, he touched upon some of the themes I echoed and witnessed daily among long-haulers in online support groups or on Twitter. Long-haulers are screaming from the tops of our damaged lungs in an effort not only to warn others that long-haul COVID is a risk, but to cry for more research, funding, treatment options, and social support protections and services. “I’m tired of being isolated.” The isolation associated with long-haul COVID comes in all forms. In some cases, those who are living with long COVID may isolate from friends and loved ones because we are too unwell to interact, or conversations — face-to-face or even those over text — may be too taxing. Additionally, we may isolate to protect ourselves from contracting the latest COVID-19 variants, as we do not want to make our situations worse, or even fatal. Even more, others may stay away from us for fear that we are contagious or shy away because they do not want to face their own vulnerability. “I’m tired of flare-ups with no explanation.” The unknown can be maddening and terrifying, and there are many aspects of long-haul COVID that remain inexplicable. “Nothing is more frightening than a fear you cannot name,” wrote Cornelia Funke, young adult fiction author. While patients have named long-haul COVID, the many symptoms and illnesses associated with it are not defined. There is yet to be a map for how to navigate this virus and overcome it. In the meantime, patients are relegated to monitoring and troubleshooting symptoms without an overall understanding of the virus. “I can’t [believe] how the medical community doesn’t give a f***.” The patient experiences of those seeking diagnoses or treatment for long-haul COVID can range from the supportive and validating to the horrific and contested. As patients who are managing through long-term, debilitating illness, we cannot fathom how the medical community has remained disjointed — even broken— while millions of people living with long-haul COVID continue to suffer. We understand that doctors and nurses are humans, too, as The Atlantic writer Ed Yong’s recent article on the mass exodus of healthcare workers in the U.S. reminds us. But add in the motives of governments, insurance companies, the pharmaceutical industry, corporations and schools — and it results in a global healthcare breakdown. Yet hope is dwindling and our patience is expiring. “I’m tired of the [world] not taking this s*** seriously.” While COVID-19 and long-haul COVID continue to be widely politicized in the media and on platforms like Twitter and Facebook, the debates about masking, schooling, and workplace standards continue. It is distressing for long-haulers to sit on the figurative sidelines and watch the debates ensue. Some able-bodied individuals don’t want to wear masks. Others don’t believe COVID-19 is real. Meanwhile, long-haulers are screaming from the tops of our damaged lungs in an effort not only to warn others that long-haul COVID is a risk, but to cry for more research, funding, treatment options, and social support protections and services. HELP US. “I’m tired of no longer being human.” This final protest is probably the most difficult. Personally, I am two years into this illness and as the months roll on, I am coming to understand that transitioning to a life with chronic illness is accompanied by innumerable losses — partners or spouses, friends, employment or school, money, homes, goals, dreams, and hobbies. These losses are on top of physical abilities that have diminished too. It has been the sorrow of my life to say goodbye to important parts of my identity and to enter a realm — possibly for the rest of my life — of subsistence rather than existence. Perhaps it would be more bearable if we knew help was on the way. Alas, we don’t know if it is. Suicidality and Chronic Illness Research and advocacy group Body Politic reminded the public that suicidality and depression are not uncommon in people living with chronic illness, offering an explanation of why this change in the mind occurs. In response to Taylor’s death in 2021, the group published the following statement: “Like many issues long COVID patients face, suicidal ideation and depression are not unique to the experience of having Covid-19. People living with chronic illnesses of all types are twice as likely to experience depression and anxiety than the general population. Chronically ill young people aged 15–30 are three times more likely than their peers to attempt suicide. No matter what stage in life a person becomes chronically ill, the sudden changes to our physical bodies, our social lives, and our imagined futures can be difficult to face.” My friend is back home now, and following up with doctors about his prognosis, while my own doctor has issued me two more diagnoses. The outlook, whether positive or dismal, is one that we grapple with every day. There is no doubt it’s useful to know that some people living with long-haul COVID are more at risk for suicidality for many reasons. Even more, this fact underscores why it is important — no, it is a matter of life or death — that our global communities do not leave long-haul COVID patients isolated and in the darkness, but that we do everything in our power to be a guiding light.—— If you are in the U.S. and are in crisis and having thoughts about harming yourself or another, please call the National Suicide Prevention Lifeline at (800) 273-TALK (8255). The lifeline also offers online chat support, 24 hours a day, seven times a week. If you are located outside the U.S., please share your country’s resources in the comments.

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Tessa Koller

Long-Haul COVID-19 and Receiving a Behcet's Disease Diagnosis

After months of illness, physical pain, and inability to do everyday activities without health interruptions, I thought long-haul COVID-19would be my only struggle, and I’d overcome it. I was eager to get back to my life — running my little sewing business and doing the artwork I love. Back in August 2021, only four months post-vaccination, I contracted the Delta variant of COVID-19, and my symptoms were between moderate and severe but leaning closer to severe. I’d spent my two weeks with the virus and then noticed most of the symptoms didn’t resolve — the headaches, nausea, and chest pain when coughing, along with a host of other symptoms. Long-haul COVID-19 sent me to the emergency room numerous times with breathing issues, digestive distress, and other debilitating symptoms nobody could explain. The only information I knew for certain was that this was long-haul COVID-19 wreaking its havoc on every cell in my body. In the last three weeks, my health took another turn. A strange set of symptomatology that all seemed unrelated began having its way with me. From a strange metallic taste in my mouth to unusual chest pains, it felt as though I’d caught COVID-19 yet again. At first, some symptoms presented as fibromyalgia, but the pain felt deeply rooted in my bones, joints, tendons, and tissues. For about five days and nights, I was experiencing so much physical pain and agony that I couldn’t lie down on any part of my body. It hurt too much to sit, stand, and lie down on my stomach and back, and I found myself sitting on the floor of my bedroom sobbing myself to sleep or even not sleeping at all. Other symptoms, more personal ones I won’t be listing here, really put me through the wringer, and frequent hospital visits were causing me an undeniable amount of stress and anxiety. One symptom specifically led a nurse practitioner to believe that this was a Behcet’s disease autoimmune flare-up I was experiencing. It was like a funnel cloud had formed above my head and dropped right on top of me, upending everything in my life. In case you’re unfamiliar with Behcet’s disease, it’s a rare condition that is similar to vasculitis. The autoimmune disease had already spent months attacking my digestive system, immune system, lymphatic system, and many other bodily systems too. For about three weeks, I’ve been in the middle of an autoimmune flare-up that has been testing me to an extreme degree. To boot, I found out I have not one, but three bacterial infections that have all been utterly distressing. Still, I am relieved knowing this won’t be a forever situation, and it’s treatable and temporary. Perhaps I’m stronger than I give myself credit for, but the despair I felt in learning that I have Behcet’s disease has affected me on so many levels that words can’t express. There is no way for me to properly articulate what I’ve been going through with this disease. I’m still learning about Behcet’s disease, but I found myself undeniably angry that my lengthy battle with long-haul COVID-19 has led to it. The toll this autoimmune disease has taken on my mental and emotional health and well-being is irrefutable. On a better note, though, I’ve heard many positive things about this condition, including that people have been able to successfully tame Behcet’s almost to the point of full remission or to experiencing less frequent flare-ups. I’ve adopted a new way of eating and managing my health and lifestyle and am trying to be patient with my healing process. Being immunocompromised has made me realize how complex the immune system is in its reactions and responses to vaccines and diseases too. When I found out that Behcet’s disease is the mysterious autoimmune condition that was causing me so much trouble for all of these months, I didn’t want to accept or talk about it. However, our health is a part of us — whether we like or accept it or not. Our health isn’t the enemy — it can help us find new ways of living that may benefit us even more. It’s important to find resources that help you work with the sadness and grief a diagnosis like this can cause and be patient with the healing process. I’m utilizing the tools within me to move through this autoimmune flare-up: meditation, nutrition, a holistic approach to treatments, and of course, my art (when my energy allows it). Though I’m not happy about my Behcet’s disease diagnosis, I am hopeful about getting on a new path toward wellness that nourishes and enriches my health and life in the long term.

Ashley Seymour

Chronic Illness: What It's Like to Have Brain Fog

Before I had the unpleasant honor of joining the chronic illness community, my vocabulary was missing several phrases I’ve come to know all too well. I’ve learned more acronyms than I ever cared to and can recite far too many names of tests, what they are for and how they are usually done. I’ve learned words like “painsomnia” and “spoonie” and not only used them in my daily conversation but lived them. One term I’ve come to be much too familiar with is “brain fog.” I have some days when I am able to think clearly and can string sentences together without even really thinking, but other days, just trying to find simple everyday words is a struggle. Recently I’ve been experiencing the fog more often than usual. It’s been so frustrating and embarrassing at times. Attempting to explain what it feels like is a bit difficult because that requires communication – the very thing the sludge in my brain makes so hard! On the days that are particularly tough I usually describe it as trying to think through mud. It’s as if I have to concentrate on every word to be able to get it from my memory to mouth without disruption. Facts and numbers I may have known for years become blurry and I question everything before I say it. I worry that I might get it wrong and look silly since, after all, I look completely “normal,” I’m not drugged, not intoxicated and have no apparent reason for being any less mentally sharp than usual. It affects the conversations I’m able to have immensely. I want to be a friend with a comforting word but on the foggy days, I may not be able to find the words I want to use to accurately express my feelings. It’s hard to keep a conversation going when I have trouble coming up with the word “tea” or “window.” I might start a story and forget mid-sentence what my point was. Talk about a conversation killer! “So we were driving in the car and then… Um… I forget…” doesn’t really invite much response. It may seem like I’m uninterested in what the people around me are discussing but in reality, I’m doing my best to process what I’m hearing and just keep up. I probably am not able to have a thought, find the words to express it and actually say the words out loud before the topic has changed and what I was going to say is no longer relevant. The brain fog also causes anxiety. I have had more than one experience when I was unable to communicate with my doctors well enough to let them know exactly what was happening. It didn’t hit me until I was leaving the appointment that I realized I completely forgot to mention a new symptom or ask a question I had. The way I had to relay the things I did say might not have been very effective and because of that I left without adequate care. I’ve now started making lists obsessively in preparation for appointments. That in itself though causes anxiety. What if they think I’m seeking drugs if I ask about a specific treatment? What if they think I’m just hypersensitive to everything going on in my body and dismiss it? What if this list is too long and they think I’m making it up? What if, what if, what if… The stress of effectively communicating can be crushing when you know it isn’t what you’re best at but you also know that your care is in the hands of this person who is reliant on what you tell them. The embarrassment of mental slip-ups has become rather common as well. While there are people in my orbit who understand what I mean when I say it’s a muddy brain day and won’t think twice when I don’t talk much or take an abnormally long time to speak one sentence, there are so many others who have no idea. There are texts that I might proofread three times before sending because I see a new typo each time I read it. There are times when I just feel plain stupid because I can’t remember if the correct number is 40 or 400. Times when I kick myself because I realize what I just said may have come across in a completely different way than I intended. For example, I was once shopping with my mom and she was looking at some skirts but complaining she couldn’t find one she liked. In my mind I thought about how I’ve watched so many episodes of the show “What Not to Wear” and learned about what shapes looked best on my body type, and how it’s helped me find clothes I actually like. However, what came out of my mouth was, “You should watch ‘What Not To Wear.’ You might learn something.” I felt horrible! Thankfully, it was my mom who has an unshakable self-confidence and knows me well enough to know I didn’t mean what I said, but that didn’t change the fact that to this day, that may be the meanest thing I’ve ever said to someone. We still joke about that particular exchange, but I was genuinely mortified that I could sound so cruel and petty when it wasn’t my intention in the slightest. Brain fog isn’t just having trouble with calculations or not being quite as quick-witted as usual. It affects so many aspects of life in many different ways and has consequences that may reach beyond just a simple forgetful moment. There are lots of objects that become “thingy” and sentences that trail off into oblivion, but there are also miscommunications with loved ones and friends or nights of worrying and list-making as I try to minimize the impact of not being as functional cognitively. So when someone is having a “foggy” day, grant a little extra grace and patience. Try not to take their muddy brain personally – they’re just trying to think at a snail’s pace! We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Creatas Images.

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How Chronic Illness and Grief Are Connected

I remember attending my first counseling session after my stoma surgery and being told they couldn’t provide the right form of counseling via the NHS because I needed a form of grief counseling. I never considered I was experiencing a form of grief. I had always linked that to losing a loved one, but if you really think about it, it makes perfect sense. At the time I had lost the health I once had and parts of my body I thought we had to live with (my colon had been removed due to acute severe ulcerative colitis). And I’m still grieving today. I regularly feel guilty for not being able to do the things I used to (even simple tasks around the house) and this makes me feel like a burden to those around me. People have always taken health for granted until it’s gone and it’s not in our control to change. Grieving is something that becomes regular for someone living with a chronic illness/disability. As much as we try not to think about life in the past, it’s only natural to do this. Especially when you’ve lost so much freedom. I also try my hardest not to compare my life to others because everyone’s journey is different. It’s one of the reasons I don’t scroll posts on social media because as much as I try, it’s impossible not to. I love that people are living a better life after their surgeries/challenges they’ve faced, but it makes me question why my outcome was different. Why my story can’t have a positive ending. For me personally, I’ve always been extremely ambitious, which is probably why I now run Making the Invisible Visible and take part in pageants. It gives me a sense of purpose to give back to others. I miss working and find it hard seeing others moan about going to work when I don’t have that privilege anymore. I regularly feel trapped in my own home. I lost everything I had worked hard for. At the age of 19 my banking career began. I moved into a rented house with my ex-partner and knew my two part-time jobs wouldn’t be enough to cover our bills. So I decided to start my full-time career early whilst completing the final seven months of my college course. It was time and energy consuming but I didn’t want to give up. After finishing my full-time course all with distinctions, I started to focus on career progression and took on whatever overtime was available to save for a house deposit. I worked a whole month straight at one point (I don’t know how). It all paid off, and at the age of 22 (three years later), I became a manager in my department and bought my first home (achieving two of my dreams in life). My old relationship fell apart for a bunch of reasons, but he definitely struggled to accept my success. I’m now with the love of my life who has stood by my side through the toughest challenges in my life. Just before my 25th birthday, my health started to take a turn for the worst and I was fighting for my life a few months later. We were in the process of buying our forever family home and planning our wedding day. I had to sign our solicitor paperwork from my hospital bed as we were about to lose the house. But we achieved those dreams of ours. We moved in a month after my second emergency surgery and our wedding went ahead the following year. My third most invasive surgery was even held off for this. One dream we’ve had to accept may not ever happen is our plans for children. It’s possible my surgeries could have impacted my fertility. I’ve had friends offer to be surrogates and talk about adoption, but that’s not even our biggest hurdle right now. Realistically we are unable to try for children. I can’t get out of bed most days or when I can, I struggle to do basic stuff.My husband and mom have become my carers. So I have to accept that I wouldn’t be able to raise a child whilst my husband provides for us. Our children would be neglected (not intentionally), which hurts to say but it’s true. I held onto hope that I’d return to better health after my recovery, but we’re coming up to five years and in all honestly it’s hard to stay hopeful because you have to be realistic too. You have to come to terms with your life being different to what it once was/everything you envisioned it would be. You have to accept that this is out of your control and no matter how much you try, it won’t change the outcome. You have to learn that working harder can actually have a further impact on your health which really isn’t worth it. Some of us also have to comes to terms with drastic changes to our bodies whilst society doesn’t deem us as beautiful. You have to fight past feeling alone or unworthy due to the lack of representation in media. I would like to say this grief ends but I’m unsure if it does (come back to me in the future on this one). What I do know is that this grief is perfectly normal.