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The Not-So-Positive Negative Blog Post

Now I know this is pretty dark, but if I had a magic wand I would like to give those that aren’t suffering from long covid or a similar chronic illness, an hour of symptoms. Just an hour, I promise! I know that sounds nasty and mean and I wouldn’t wish harm on anyone normally. Does that make me a bad person or just a desperate one? I’d make sure the symptoms weren’t lasting. Of course, my main priority, if I became in possession of a magic wand, would be to cure all chronic illnesses, end world hunger, the war in Ukraine, climate change… etc. I also understand that although people aren’t suffering from a chronic illness, it is more than likely that they are suffering from other struggles in their life. Chronic stress, trauma, mental ill-health, other health issues, relationship problems, and everything else, we all have our stories. So I am not saying that a chronic illness is the worst thing ever to possibly have and no one else will ever meet a stumbling block like it. I am just saying that sometimes it would be nice if people were able to feel what it’s like, live in my brain, and feel what my body feels. I know I can’t be the only one that’s had this thought pop into their heads when they’ve felt misunderstood and defeated by their illness. I am certain that others have said in their heads from time to time that “no one understands me”. I am also convinced that I am not alone when one of the first words that spring to mind when describing my chronic illness is ‘isolating’. I honestly believe that this aspect of long covid is the hardest thing that we have to deal with (besides all the relentless symptoms).


I know that many sufferers attempt to have an aggressively positive attitude when it comes to long covid, I certainly have done. I’ve used positivity as my greatest weapon against this illness and I’ve fired it any chance I get. Here are some semi-exaggerated go-to catch phrases I use during discussions I have about how I am feeling:


“Oh yes it sucks I have long covid, but at least I am learning lots about myself!”


“I feel unwell, but I know that others have it worse so I am so grateful!”.


“Times have been really tough recently, but I’ve made it through each day!”


This same positive mindset also transmits into my blog posts. Although this bright outlook can be a great support to people in their darkest of times, it does depend on where your emotions are pinpointed at the time of reading. That’s the nature of a chronic illness. Just like our symptoms change from hour to hour, our perspectives and thought processes shift from negative to positive like a pendulum at a similar rate. Sometimes, just like a weapon needs to reload, that positivity runs low and eventually runs out. All that positive nonsense I spouted so optimistically before makes me physically cringe. During these times, all there is to do is cry or yell (or cry and yell) and that’s okay. The ironic thing is that over the last few months, I’ve written a blog post, published it, really liked it, then read it back 2 weeks later with disgust. I would absolutely detest the cheerful thoughts and facts that I wrote so confidently not so long before. The upbeat nature of my posts would just agitate me and I wanted nothing more but to get angry at the girl that wrote them. How could you be so positive about this? How are you so happy and optimistic? And I must share this gloomy attitude with some of the readers of my blog too. I can imagine those that are in the depths of despair with their long covid find it far from helpful when I write about having a positive mindset and list all things I am grateful for as a result of getting unwell. Because how unrelatable is all that bubbly waffle when you are feeling so low? This occurrence also gives rise to comparisons, which we all know are extremely unhelpful. Why is this random girl on the internet feeling so hopeful despite everything we are all going through? I don’t feel as positive about my journey. She is doing so much better with her recovery journey than I am, why don’t I feel this way? Well, I am going to let you into a secret, I am not always as positive as the majority of my blog posts portray. I am sometimes very much the opposite. I feel cynical, negative, pessimistic and most of all, peed off!


So this blog post is going to be my not-so-positive negative blog post. It is my attempt at describing what having long covid is really like. I won’t just be using my experiences though, this is a collection of accounts from other sufferers that I have absorbed over the last few months. At the bottom, I have also reached out to members of the community to share their own experiences that they have so kindly and carefully squeezed into a sentence (which is like asking a cargo ship to fit through a hula hoop!).


I will break this post down into the 3 obvious parts:

  1. Physical Symptoms

  2. Cognitive Symptoms

  3. Mental Symptoms


Physical Symptoms


The physical symptoms of long covid can be an incredibly difficult thing to describe. Mainly because it’s unlike anything experienced prior and also because they can be so complex, yet so discreet.


Let’s start with the big one. Fatigue. Now I believe that fatigue and tiredness shouldn’t be used in the same conversation, let alone in the same sentence. They are often used interchangeably and this is why fatigue can be so often misunderstood. Everyone gets the sensation of being tired. Feeling weary or lacking energy, particularly after poor sleep or some sort of exertion is extremely normal. Fatigue, on the other hand, goes way beyond regular tiredness. It is an overwhelming feeling of profound exhaustion that impacts physical, mental, and emotional well-being. While feeling tired is a temporary state that can be relieved by sleep or rest, fatigue isn’t as simple. It can linger for long periods of time, arise with no rhyme or reason, and will not be alleviated from getting your 8 hours. It is so important that tiredness and fatigue are thought of as completely different states.


If you have seen Harry Potter (who hasn’t?!) you’ll know what Dementors are. If you haven’t seen them then google them (viewers discretion advised!). Dementors are basically dark creatures that consume human happiness and this is the best way I can describe what fatigue is. It drains everything from their victims. Fatigue saps the energy and strength from those experiencing it, the same way Dementors do. It leaves people feeling weak and exhausted. Another way I would describe fatigue is that it's as if your batteries have been taken out or you’ve been unplugged from the mains. The power fatigue has over your body is incomparable to anything else. It’s as if the muscles in your body have been weighted down with lead, cast in concrete and you are living on a planet with 10 times stronger gravity than we have on earth. I have had times when even moving my pupils away from a gaze is not possible because of how little energy I had. The same can be said with talking. There have been instances where I’ve known what I’ve wanted to say but the muscle fibers in my face do not have enough power to unclench my jaw to speak. I have had sensations that the mitochondria in my cells are not working as they should. This sounds silly since of course we aren’t able to feel things on such a microscopic level, but at times it genuinely feels like each individual part of my body is placed in slow motion. In addition to this, when you are experiencing good moments in the day without fatigue, you know that the Dementor is always in the corner of the room or nearby ready to swoop in and do what it does best. Drain and take and sap everything from you. Fatigue doesn’t just work throughout the body though, It’s able to wrap itself around the brain too. Like a fungus spreading microscopic spores, your mind can become invaded by this cloudiness and heaviness. Thoughts become disoriented, memory lapses, and mental clarity becomes scarce. At times it may feel like your brain has turned into a bowling ball. Fatigue severely interferes with a person’s ability to function normally, both physically and cognitively. Tiredness doesn’t even come close.


Moving onto more physical symptoms and starting at the top of the body, long covid generates some of the worst headaches I’ve experienced in all my 24 years. These headaches aren’t like the typical 'oh I am dehydrated' headaches, they vary in sensation, intensity, and location. Sufferers may experience some sort of pressure building up in their heads or perhaps a throbbing migraine that is accompanied by nausea. Other headaches may be described as ‘tension-type’ and sit right in the brow bone. The other one I have also experienced is a pain in the back of my head, where my head meets my neck. Other symptoms related to the head can be eye pain, eye dryness, blurred vision, facial numbness, and of course, the well-known unpleasant symptom of loss of smell and taste. Others get issues with speech, voice changes, sore throat, and ear problems, including tinnitus. All of these physical symptoms at the top of the body are individually distressing in their own right, but they usually inconveniently accompany each other. On top of these symptoms, there tends to be a greater sensitivity to sound and light. I experienced this when I have listened to two separate sounds playing at once. This mundane phenomenon can send me into a spiral of feeling physically sick and overwhelmed. Bright lights, including the sun, also affect me in the same way.


Moving down to the neck and below, I wanted to mention the symptoms of a stiff neck and muscle pains. Muscle pain is a nasty reminder of the body’s intricate composition of tissues and can penetrate any muscle to its core. It is as if your body is being molded and played with like putty by an evil giant. In the mornings it can feel like I’ve been in a tumble dryer all night. What’s more, the partnering muscle weakness makes it seem as though you are a puppet without your puppet master, which causes you to fixate on every tiny movement since it becomes such a conscious struggling effort. It creates a strained relationship between your mind and your body. Joint pain and stiffness are also added to the mix and can make you feel like a hundred-year-old that's attempting to climb Everest (except you’re 24 and you’re trying to climb the stairs).


The lungs are next and deserve their own blog post but for convenience, I will summarise it in a paragraph. A common symptom is breathlessness but this should not be compared to the typical ‘out of breath’ after a 5k. It is so much more than that. Air hunger is the best way to describe it and this feels like you are attempting to breathe in a vacuum or underwater. Not only does it feel like there’s no air outside, but it also feels as if your lungs are constructed and are unable to expand fully. This sensation is typically partnered with pressure on the chest and I can only imagine a large man wearing big boots standing on my torso when this occurs. It is like you are trapped between 2 panes of glass slowly getting closer to one another. This pain can wrap around your entire body and get into your upper back too. The chest can also feel as if it's on fire and at times it feels like my lungs could pop like a balloon at any second with one wrong move. It completely goes against our instincts to survive and can be compared to a constant state of extreme anxiety. It can create a clever loop too. The urgent and shallow breathing makes you anxious for your next breath and this anxiety causes more urgent breathing. Long haulers have also experienced all types of coughing too, from dry to chesty.

Keeping close to the chest, the heart is my next target. Heart palpitations can feel as though there’s a buzzing hummingbird confined in your chest and it’s desperate at attempting to break free. Tachycardia (high heart rate) and bradycardia (low heart rate) occur conversely. These feelings within the chest go hand in hand with the sensations of dizziness, lightheaded, vertigo, and possibly even fainting. Moving down to the gut, perhaps one of the most persistent and identity-destroying symptoms personally for me is the loss of appetite which is also consistently complemented by extreme nausea which exceeds common bouts of travel sickness. I used to passionately live to eat and now I can honestly say I reluctantly eat to live. Going to a restaurant was my favourite activity and my work days would be overshadowed by my excitement for a yummy dinner I had planned that evening. I loved all food, I didn’t discriminate, and don’t even get me started on cake and confectionary! Now, I am lucky if I have any cravings for food at all. The activity of eating has been placed on par with brushing my teeth (and that’s the worst chore of them all right?!). Constipation, diarrhoea, and abdominal pain are sporadically or frequently experienced with these symptoms too.


But there are over 200 (and counting) known symptoms of long Covid confirmed by researchers worldwide. From temperature regulation issues and menstrual cycle irregularities to pins and needles and hallucinations, long covid has it all. Not to mention the other conditions that are accelerated by long Covid, such as Ehlers-Danlos syndrome (EDS), postural tachycardia syndrome (POTS), rheumatoid arthritis, and other autoimmune illnesses.

Top all of these symptoms off with the inability to sleep (insomnia) and you have a perfect storm for an atrocious and hideous chronic illness. Perfect!


Cognitive Symptoms


Oh, you think it stops there? Well unfortunately the physical symptoms aren’t the only things creating havoc on an individual’s quality of life. The cognitive symptoms of long covid are just as mean and unforgiving. As I briefly aforementioned in the fatigue paragraph, long covid can cause huge problems with the functioning of the brain, causing defective thinking patterns, known as ‘brain fog’. We’ve all had lapses in judgment, found it difficult to make decisions, and been forgetful at times, but the cognitive issues long covid brings are much more than the typical ‘brain fart’ people experience on occasion. I can only describe brain fog as if the mind has regressed into a child-like state whilst also deteriorating at a rate comparable with dementia patients. I’ve heard from another suffer that they’ve gone to make a cake recipe they’ve been following for years and genuinely could not even identify the ingredients that they would need for it, let alone make and bake it.


Brain fog quite literally creates a sort of thick fog in your head and shrouds your thoughts in a haze of confusion. Attempting to focus on the simplest of tasks becomes a struggle and it is as if you’ve been dosed with strong drugs that make the mind feel sluggish and heavy. Concentration turns into a luxury that can only be attained with great struggle and consequential cost. If you are required to fixate on something, it is likely only possible with substantial time, effort, and minimal distraction. Even the radio playing quietly in the background can send you out of kilter. It’s almost as if our brains have become so much less tolerant of any kind of stimulation, background, or foreground. Don’t even get me started on multitasking, because that skill is out of the window and has fallen 15 storeys below onto the tarmac. In addition to all this, if before long covid my brain had the same processing speed as a brand new MacBook Pro, well imagine now my brain is the equivalent of a 15-year-old computer with deteriorated hardware and impaired software. Long covid causes far slower processing speed and this leads to symptoms such as confusion and delirium.


Decision-making is also compromised and it impacts every single choice you have to make, no matter how big or small. Everyday decisions that should be straightforward and uncomplicated to make, feel complex, and elaborate. I went into a supermarket recently to buy a sandwich for lunch and I must have been standing there for 10 minutes deciding on which one to buy. Anyone would think I was deciding on a resolution for climate change, not choosing between ham & cheese or egg & cress (and I still was not content with my final choice!).


Reading and writing demands an extreme amount of concentration and at times it may be impossible to do either. The same can be said for speaking and listening. Since becoming unwell I have found myself repeating back easy questions that others have asked me because I have been unable to understand, process and decide on an answer. Words become elusive and the act of articulation feels like an enormous burden. It can be difficult to find the right words to use and the ‘tip of the tongue’ sensation is experienced frequently. I honestly have no idea how I am able to write these blog posts. I have never been much of a writer and at school struggled in my English lessons. University essays and assignments never came naturally to me and I would take ages to get them completed. But with this, the words just flow and it feel as though it takes no effort at all. I typically write a blog post in a few hours and in one sitting, which is very unusual for me! But get me to write a grocery list or an email and that's a whole different story!


Memory is also significantly impacted. If I had a penny for every time I walked into a room to do something and completely forgot what it was I needed to do, I’d own a house with lots more rooms! Both short-term and long-term memory can be affected. I could be having a conversation with someone and prepare my response, take in a breath to reply, and have my entire thoughts wiped. At times, the entire nature of the conversation can leave my memory and I would have to figure out what’s been said using prompts from the other person. Before long covid, I would consider myself to be reliable, I’d never forget an appointment or be late for one. Over the last few months, I have got times to consultations wrong, turned up an hour late, or completely forgotten the appointment alltogether. I have felt embarrassed and disappointed with the current quality and condition of my brain functioning.


The cognitive symptoms of long covid certainly contend with the physical symptoms and some may argue that they are far worse. At least with solely the physical symptoms your brain is still intact so that thinking patterns, decision-making, and the overall ability of the mind is operating correctly. But with these devious cognition issues your entire identity is compromised and it can be incredibly challenging and frustrating.


Mental Symptoms


The mental symptoms of long covid will be the shortest section out of the three, but that by no means indicates that it is less impactful than the other two. In fact, I would even go as far as to say that it is the group of symptoms that possesses the most authority during the journey of long covid.


I’ll start with the two most-recognised mental health issues associated with long covid. Anxiety and Depression. Many people may not have experienced the full wrath of these issues in their lives before long covid. However, they can likely say they have now. I know I am very fortunate when I say that before and during my long covid journey I am yet to experience extreme anxiety or deep depression, but I have definitely experienced less severe cases of them. Even the ‘milder’ versions are still unbearable. The anxiety with long covid, as mentioned earlier, can be intensely physical, with heart palpitations and breathlessness. At times I have been physically able to feel the adrenaline enter the bloodstream via my shoulders. But the brain’s ability to overthink and over-worry is the primary source of this mental pain. Not only is the anxiety a literal symptom of long covid but it can also be caused by factors that have derived as a result of the long Covid. Such as financial stress, relationship strains, and concerns about health and the future. Ironic and pretty messed up hey! As for depression, you know I used the Dementors earlier as a way of describing fatigue? Well, I am going to use it again here for depression because that is exactly how it feels too. It manifests in a chorus of negative thinking patterns and makes it impossible to be positive or hopeful about anything. It is as if the world loses its colour and there is no warmth or light to be found. Emotions are numbed, leaving a void of emptiness where feelings used to be. It is an endless cycle of despair and one that can feel impossible to escape from.


Mood swings are also recognised symptoms of long covid, with just as many biological mechanisms as the brain fog. So if you have been feeling more irritable than usual since having long covid, then there’s your reason. The clinician at my long covid clinic told me that she has individually heard from many men (and probably women) with long covid that they just feel so much more aggressive and feel compelled to act on it. The irony is that there are physiological changes in the body causing these types of mental symptoms anyway, so add all the other physical and cognitive symptoms, take away someone’s ability to function normally, isolate them, and thus, of course, they’re going to be more irritable as a result!


Long covid impacts every single aspect of your life, in more ways than one, so it's no wonder that people have difficulties with coping with it all and experience emotional distress. As I have discussed in previous posts, the very nature of the symptoms results in an individual becoming isolated. The very thing making them lonely, causes them to be alone. There is a sizeable chance that long haulers feel isolated and disconnected from others due to feeling misunderstood, no matter how much support they receive from others. Which is perhaps the worst symptom of them all.


If that’s not enough, then add in the fact that a significant majority of these symptoms are invisible. Invisible

illnesses can be incredibly distressing since others aren’t able to relate or be aware of how that person is feeling. This causes chronic illnesses, such as long covid, to be very complex and damaging for the sufferer, yet seem so insignificant and mild to a well-intentioned onlooker. That’s the nature of the long covid beast and adds a whole new dimension to the condition. In addition to this, invisible illnesses tend to be subject to skepticism and many sufferers have their own stories of not being believed, even by medical professionals. Some have been accused of being lazy or are met with additional stigma from those that lack social awareness and education surrounding these issues. It’s bad enough going through all this, but to not be believed? Well isn't that just rubbing salt in the wounds? But this is perhaps a discussion for another blog post!


 

So there you have it, the not-so-positive negative blog post. A simplified and small insight into living with long covid. It is certainly an unpredictable and arduous journey filled with stumbling blocks and daily obstacles. So no wonder that it's hard to keep positive all of the time. I really hope this post serves as a means of decoding parts of what living with long covid is like and perhaps could shed light on some of the problems long haulers face every day. I can’t imagine I have even come close to describing the entirety of the condition, I imagine I have failed to mention some symptoms, but at least I have somewhat broken the surface. If you are struggling with long covid and are feeling misunderstood, maybe send this to a loved one that is struggling to understand. If you know of someone who deals with this, perhaps start a conversation about the things discussed in the post. Who knows who or what it can help.


Long covid and other chronic illnesses are very good at stripping away identities, isolating individuals from loved ones, and preventing people from leading a content and easy life. But on a positive note (I just couldn’t bloody help myself!), these chronic illnesses are also excellent architects behind building powerful and glorious communities amongst the darkness. They force us to uncover our true inner strength and shed light on what is truly, important. It has certainly made me a much better version of myself and I have become someone my past self would barely recognise (I am no longer addicted to stress for a start!). Long covid is a master at highlighting every single small thing that we should be eternally grateful for. An anonymous individual contributed to my request for a summary of ‘long covid in a sentence’ by simply saying:


“I have so much less, but I feel I have so much more”.


And if that doesn’t make you gasp from the instant warming of your heart, I really don’t know what will! That quote summarises long covid for me too and I am so beyond grateful for the person sharing it with me. But I know what you are thinking…but Jemma I thought this was supposed to be a negative post? Well yes, but I really believe light can be found in the darkest of places (cheesy I know!).


I will end this post using the words from others. These lovely people have shared their own thoughts on what long covid (or ME/CFS) is to them (you must agree that it’s getting a bit boring just hearing my perspective!). Thank you so much to those that contributed to this and I am sending my love to all those suffering. Let this be a reminder that for anyone suffering from long covid or something else, you aren’t alone and you never will be.

Ps. If you want to contribute your own sentence to this blog post, feel free to reach out and I can always add it in!


Here they are:

 

“A mixture of emotional and physical pain”

Anonymous

 

“Long covid can be isolating (especially as a young student) but it has also made me prioritise myself more and take the time I need to rest. “

Anonymous

 

“You are not guilty but got sentenced to prison anyway and nobody can tell you if or when you can get out.”

Anonymous

 

“Strong fatigue, nausea, light-headed, out of nowhere loud sound sensitivity, wake up at night several times, sleep apnea highly increased, body temp regulation issues, the body will sometimes shiver out of nowhere, heat/humid sensitive which will cause flare-ups. I also deal with on and off chest pressure and occasional spikes in blood pressure and pulse out of nowhere. Have to use the spoon method for things that I want to do each day so I don’t cause a bad flare-up. Things that help are as follows: Compression socks, cooling towels, low histamine diet with no sweets or high carbs, and drink 90 oz of water daily with salt/electrolytes.”

Anonymous

 

“Healing has been long and exhausting, although I have made significant progress over the last almost 16 months, so I am remaining hopeful. This experience has made me learn a lot about caring for oneself and listening to my body. I will never take life or my health for granted again.”

Mel (Instagram: @notsolinearrecovery)

 

“Everything and nothing all at once. It has taken over everything in my life, yet I am able to do so little due to exhaustion and other symptoms. On good days I need to remind myself that it is not all in my head and that I still need to take it easy. It is very lonely and very scary because you don't know if/how much you will recover.”

Charlotte

 

“Long covid took everything away from who I was, the mother, the partner, the teacher, the friend, daughter, sister, and my happiness.”

Inka (Instagram: @InkaBrds)

 

“I would say it’s like being on a rollercoaster but not a funny rollercoaster, a crazy rollercoaster that doesn't always make fun. It's a very scary rollercoaster sometimes. And sometimes it's a bit funny but u always a little scared of what might happen.”

Selin (Instagram: @selin_krg_)

 

“A devastating relentless tsunami of symptoms, challenges, and emotions. Like being asked to do the worse academic exam of your life all day every day after you’ve not slept for 4 days straight and been running back-to-back marathons all week.”

Alexis (Instagram: @alexis___me)

 

“While my friends make progress in their careers, in sports, get married or have babies, my life feels like it's been put on hold for almost a year now.”

Sophia

 

“18 years of losing my life despite still being alive.”

Roos (Instagram: @roosmvalk)

 

“This illness has destroyed the person I used to be. The amount of pain and suffering is unimaginable. Feeling trapped in my own body”

(Instagram: @k_aotic)

 

“It has taken everything from me and left me scrambling desperately to pick up the pieces of my old life whilst I watch everyone else live my dream.”

Katie

 

“Nothing prepares you for the heartbreak and devastation of transitioning from thriving to just surviving in the space of a few weeks.”

Lexi (Instagram: @positively_fatigued)

 

“It's like my body is allergic to living”

(Instagram: @softnoodles_doodles)

 

“Confusing, frustrating, and unpredictable”

Dana

 

“Life-changing, bad experience in ICU. 19yrs as a HCA working 60 hours per week till unable to work because of CFS amongst a list of other ailments”

Carla (Instagram: @Carlamcg_20_23)

 

“It's been a year of existing in the moment, planning ahead is just about getting to the next rest period, the next medical test, or the next appointment.”

Tina (Instagram: @crstn85)

 

“Life wrecking disease with an insecure future. Depressing, exhausting, f**king awful”

Deen (Instagram: @pocolocodiscoshow)

 

“I’m 15 and just got my diagnosis. I’ve had long covid for 2 years and I have dysautonomia and extreme fatigue. It’s hard being this sick in high school, especially because being sick has made my autism and social skills worse. I can’t even walk across the street to my school and I have to take a nap every day. I’ve had to give up singing and acting which are the things I love to do most. Most of the time I just want to be a normal 15-year-old girl.”

Mattie

 

“It‘s like a rollercoaster every day again, only without the fun but with constantly running out of breath (btw, I hate rollercoasters irl) :,)”

(Instagram: @__ki.ki.ki__)

 

“Long covid is the absolute annihilation of life source, it is a daily state of begging for mercy. If you had told me a year ago you could be this frighteningly sick and it not be terminal - I wouldn’t have believed you. This illness comes at you like a thief in the night,

stealing your health and your hope.”

Nadine (Instagram: @nadsfads)

 

“I have been living with LC for a little over a year (my first and only Covid infection was in June 2022). About 2 days into my infection I woke up and everything was spinning, I was abnormally sweating, and my heart was pounding. I feel lucky, because I was well-educated on POTS, and I knew immediately that this is what I was dealing with. I went to the doctor and told them what was happening, and that I think I’m dealing with post-viral POTS, and I immediately got shut down. They said I would feel better in two weeks, then it was three months, then it was 6 months. I never got better. I started doing my own research, and switched to a natural path doctor, they ran blood work and found a few abnormal levels, and also a blood clot. I had a DVT in my right leg, it had been there for at least three months (note: I had complained to doctors of weird vascular issues in my leg for a couple of months before this was found). The blood clot healed in a month, but the rest of my symptoms, like the POTS, and the fatigue… just would not go away. Eventually, I switched to a functional doctor, and immediately he tested me for Lyme disease, EBV, and a load of other things. It was then I found out I had Lyme disease, as well as candida overgrowth, extremely low ferritin, and other hormonal imbalances. My doctor suspects that I have had these issues for years, and COVID exacerbated all of them and knocked me off my feet. I am now on a strict supplement routine, as well as a super clean diet. I am using red light, sauna, Epson baths, sunbathing, and other natural remedies to heal. Slowly but surely I’m seeing progress. Long story short, if doctors had listened to me sooner, I could have gotten help faster. As women, we are highly disregarded and ignored in the medical system. If we look healthy on the outside, we must just have anxiety. I urge all medical professionals to listen, and fully investigate every aspect of someone’s health. Not only can you prevent prolonged suffering, but you could save lives. Myself, and so many others, have had to put their lives on standstill because of this horrible virus. Canceling plans, feeling left out, and watching everyone move on while we are still here. But… there is HOPE. I believe that we will get more answers and solutions to LC. Keep on going, and always stand up for yourself, you know your body better than anyone else. If doctors aren’t listening, find a doctor that will.”

Camille Slater

 

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Rated 5 out of 5 stars.

I found you as you came up in my feed on Instagram and I love how you describe your journey. I especially like the Dementor analogy, very fitting! Now, I don't suffer from Long Covid myself, but my husband does. We are nearing the one year "anniversary". I was dealing with depression myself, so I have a small inkling what it's like to have an invisible illness. I see what he is going through every day and I'm his biggest advocate when it comes to defend him against the trolls and about educating our environment about this horrible condition. So - thank you for putting the word out.

What really irks me sometimes is the comments I get: "Oh, it's…

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Chloe Frensley
Chloe Frensley
Sep 05, 2023
Rated 5 out of 5 stars.

I’ve never realized how much an affect can have on someone that has a chronic illness like this. To me Covid was just something that came and went. I feel like people just got used to it over time like the flu or strep. This makes me look deeper into how it can affect others. It makes me more thankful to know I’ve had COVID, but not like that. I can now see why COVID can be so hard for people. This has really reached me.

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Rated 5 out of 5 stars.

I have never read such a well articulated and honest description of what it's like to have a chronic illness. I don't have long covid but have POTS, chronic fatigue and an autoimmune disease so I relate to pretty much all of this. It can be very frustrating how people just don't get it. Thank you for shining light on this and I really hope you get relief from your symptoms.

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Rated 5 out of 5 stars.

Thank you so much for this. It’s horrible to hear that others are experiencing the same thing as me, but it also brings a comfort that I’m not alone.

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Chantal
Chantal
Aug 01, 2023
Rated 5 out of 5 stars.

It feels almost healing for my grief and worry to read the passages from other people in their own words. They give words to feelings I am still trying to comprehend 6 months down the road. Thank you all ❤️

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Jemma Bella
Jemma Bella
Aug 03, 2023
Replying to

Thank you Charlotte for this, I completely agree. Sending so much love ❤️

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