When life as you knew it is turned upside down…
For as long as I can remember, there has always been something wrong within my body, or something making me uncomfortable, whether it was some sort of pain, fatigue, extreme difficulty to deal with hot weather, etc. This was especially the case from Year 11 to 13, and I was the girl who had always something wrong with her, I remember joking with a friend about how many medical appointments I had. Little did I know what my life was about to become…
I started deteriorating during the summer in 2018, the summer I turned 20, but I didn’t know it at the time, I was extremely tired and was massively losing my hair. The fatigue wasn’t debilitating yet, and I had had a difficult year at Uni and thought these symptoms could also be coming from the pill I was taking at the time. I was still able to stick to my very busy schedule of travelling and doing many things during the holidays, so I wasn’t alarmed. In October 2018, I woke up one morning with extreme neck pain, a pain that, to this day, hasn’t left me for one second. I had been dealing with neck pain on and off for years so, again, I wasn’t really alarmed and thought a few appointments with my osteopath would be enough to get me back on track, it wasn’t. This pain was (and is) at the same time local and a shooting nerve pain, giving me terrible migraines, making my face hot and red, and the fatigue that came along progressively started to be debilitating. Around the same time, I started having severe issues with my vision. I started not waking up for my morning classes, cancelling plans, having to stop any type of physical activity as it was making it so much worse. No one knew what I was going through, and just thought that I was tired and could push harder to make it to a night out or anything else. I felt extremely alone in this situation, I started panicking as I felt I was losing control and didn’t know what to do, but at the same time, I was in the middle of my school year and I convinced myself I didn’t have time to deal with it, and that I could just push through, and it would somehow magically stop.
A few weeks later, I started having many appointments, going back and forth between Geneva where I was studying and living in France near the border, and where my parents lived, in the Parisian region. I remember at some point, I had to go to Paris for a weekend for an appointment because France near the Swiss border with Geneva is a “medical desert” and it takes months to get certain appointments. This was the start of my diagnostic wandering, most certainly the worst thing I have ever experienced, after the disease itself. Going from doctor to doctor, GPs, urgent care, specialised urgent eye care, rheumatologist, ophthalmologists, endocrinologist, dermatologist, osteopaths, acupuncturists etc, without ever getting a real diagnosis or a real solution to help me. It was the beginning of many appointments, hospital trips, and seeing many specialists. Regardless of what I was living and the physical state I was in, I was still convinced that the situation was temporary, that I would eventually be diagnosed with something and that a few days or weeks of treatment would get me ‘perfectly’ healthy again.
In December 2018, I went to visit a friend in Finland for a week, I remember struggling terribly, I was in a lot of pain and having trouble to get through each day (though the state I was in was nothing compared to today) without really daring to say anything as I myself did not know what was happening (the friend I was with knew I was in pain etc, but a few other symptoms were piling up that I wasn’t talking to anyone about, as I couldn’t make sense of them). (This happened again in February 2019 when I went to London and July 2019 when I went to Bruxelles, that was, devastatingly, the end of me being able to travel or do anything for fun.) In January 2019, one way or another, I managed to go to my exams and only fail one, I lived alone for those few weeks and managed to go to the library a few hours a day. During the break that followed, I went back to Paris to try, once more, to get answers. It goes without saying, but one month holiday wasn’t merely enough to do so. In February 2019, I was back in Geneva to start the new semester, in the same physical state.
On the 21st of February 2019, on my way to Uni, I started feeling extremely sick, dizzy, and hearing noise, which I later figured were tinnitus, all of a sudden. I had to get off the bus, take some fresh air, try to take the bus again, before deciding I had to take the bus the other way and go back home. I thought I just had a stomach bug or that the pain medicine I had been taking for a few months (to control the neck pain and the neuralgia) was not tolerated by my body anymore. I didn’t go to Uni, cancelled plans I had for lunch time and for that evening and stayed in bed all day. I remember calling my mum telling her the tramadol I had taken the night before had made me sick again, we also discussed how the anti-inflammatories I had been on for months might have been becoming toxic, but we thought this would all pass, I did not mention the tinnitus either, I was naïve enough to believe it wouldn’t last forever...
During the following months, I first tried to continue Uni normally, which was awfully difficult, I remember learning which seat in the bus made me the less sick and received the freshest air at each stop so that I wouldn’t vomit or faint, each day was pure torture. Then, I continued Uni remotely as I was mainly staying with my parents, I just went back and forth a few times for group projects or because I wanted to try to live normally again. My parents even had to come down to Geneva urgently, twice, once in the middle of the night because I was in excruciating pain because of my back and couldn’t breathe anymore, and I also felt super sick, and once during the day because I called saying I had an exam at 6pm but I was absolutely unable to drive or take the bus, taking the exam itself was pure excruciation. My dad stayed for 2 weeks after that so that I could finish my exams. Surely, I could have asked someone closer for help, but I already knew deep down all of this was more than temporary episodes. At this point, I still wasn’t telling anyone what was really going on, I was barely surviving and still did not comprehend it myself. I was only able to attend a few exams and had to be medically exempted from the rest.
During the summer (summer 2019), I tried working to earn a bit of money, like a normal student, but had to quit about a week and a half in. I would throw up every morning before going or when arriving, making sure no one would know (I had and have a leaky gut and many intolerances that I had no clue about, as well as issues with digestive enzymes produced by the pancreas and issues with my liver (which was full of toxins due to the infections)) and be in terrible pain and discomfort all day. The rest of the summer, and until October 2019, I went to a day clinic, 4 to 5 days a week for rehabilitation. I felt safe there as I was surrounded by people in pain and the medical staff was great. However, it got me moving a tiny bit again, but it wasn’t helping my pain at all, if not making it worse. That summer, my parents also had to take me to Geneva to pass the exams I had been unable to attend in May and June. Fun fact: during that summer, one of my many appointments was with a neurologist, on my 21st birthday, who completely dismissed my pain and all my symptoms, it was my first birthday as someone ill and suffering, and I dread this day every year since.
My diagnostic wandering lasted for over a year, the detail of it all is a story in itself and I can’t begin to express the trauma that stems from it. During that year, I have seen over 40 doctors and other specialists, I was called depressed, told I just had severe anxiety and having my depression and anxiety under control would solve it all (if only…), told that I was just finding excuses to come back to live with my parents and so many hurtful comments. After discussing with other Lyme sufferers and associations, I rapidly understood this was typical with patients who suffer from many symptoms and when doctors don’t have answers and are too egocentric to admit that they’re the ones with no answers instead of us being the crazy ones. Though, to this day, these questions make me very upset, I rapidly got the hang of how to answer and how to deal with those doctors and getting out of there as quickly as possible as they’re not trustworthy doctors. I was given countless medication, some such as corticosteroids that even made my real condition (Lyme) worse, anxiolytics, antiepileptic, antidepressants, anti-migraine medication and so on. I even had hearing aids specially made to help with my tinnitus at some point, but because of my dizziness I was never able to tolerate them well enough. I also endured countless exams, some which were terribly painful, and 3 months going to the rehabilitation clinic daily, and so much more. By this time, I had been diagnosed with occipital neuralgia and Meniere’s disease, which explained certain symptoms, but not all of them. In November 2019, I met a new acupuncturist, who saved my life. At this point, I had lost all hope, but with my parents we decided we were going to put in place our own pain management system, as I categorically refused to go to a pain centre I was being referred to (centre “anti-douleur”) in a Parisian hospital. I had been to one before and things had gone extremely wrong, the delay to get a first appointment was also of about a year. So I end up going to this appointment with the acupuncturist, absolutely hopeless, but to my biggest surprise, she listens to me, believes me and instantly tells me that, at this stage, my pain can’t be purely physical and there has to be a biological explanation (I had already done so many tests that had all come back normal, and was told that it was impossible for me to have any type of infection anywhere in my body). She pins some needles on my stomach and the reactions coincide with what she had been describing. On the 28th of November, I receive the results of the blood test I had done following this appointment: I am highly positive to Babesia (parasite). But here comes yet another disappointment: the infectious disease specialist that had prescribed this exam, just tells me I am a false positive (keeping in mind I had ALL the symptoms) and that even if I was a real positive, there was nothing to do, that it’s not serious and it will just leave on its own. My mum starts getting really upset with her, but I knew the conversation was pointless, so I stopped the conversation in order to leave as rapidly as possible. As my mum insisted, she said she was going to talk about it with one of her colleagues, head of the department dealing with Lyme and co-infections (Babesia being a co-infection of Lyme) (side note: the fact that they are called co infections is dismissive in itself because it refers to them as being less important and difficult to deal with than the “main” infection, which is totally wrong) in a Parisian hospital to get his opinion. Of course, we never heard from her again, and thankfully so, this department is well-known amongst Lyme patients to dismiss what patients are going through and refusing the (chronic) Lyme diagnosis. At this stage, my mum had been convinced for a while that I had Lyme disease, but we never really spoke about it, I had no idea what the disease really was and was just looking for answers.
At the beginning of December 2019, after having been in contact with a French Lyme association explaining my situation and my symptoms, I meet a new doctor (again) and after a two-hour discussion, the Lyme diagnosis was finally given. She explained that I do in fact have Babesiosis and that it’s nearly impossible that I have it without Borreliosis (the Lyme community usually refers to Lyme as Borreliosis and other co-infections but Lyme itself is actually only Borreliosis). My mum is with me during this appointment, my dad had driven me (at that point I had been unable to drive or take public transports for more than a few stops for a long time already) as my mum met me after work, the doctor asks my dad to come in as well to explain the diagnosis. I start to understand the importance of what I am dealing with, but I am so relieved to finally be able to put a name on what is killing me from the inside. I was entirely unaware of what I had just gotten into. The doctor is reassuring and says I am a “typical” case and that even if the treatment might be long, we should be able to get me out of this situation. After the appointment, I go the laboratory for further testing, when my blood samples and prescription get to the back, and when I am about to leave, the biologist asks to speak to me. He is very kind, and I am inexplicably happy to finally be understood, but during the conversation I start to grasp the complexity of the disease and the situation surrounding it in France.
I am treated by this doctor for many months, both naturally and with antibiotics, I also start different detoxing protocols, and everything that comes with treating Lyme, that all the patients go through and know about. However, French doctors are not allowed to treat chronic Lyme and doctors known to treat Lyme are scrutinised by medical insurance and therefore can’t prescribe long-term antibiotics without being suspected, so my options are limited. Even some of the plants that are well known for having an effect on such infections have to be bought in another country such as Belgium as their sale is not allowed in France. I am starting to become very inpatient and anxious as I don’t see or feel any change with the treatments. There are times (and this still happens now) when I feel so unwell, I feel like I’m about to die, it’s like all your body is shutting down, you’re in pain, you don’t control anything and you can’t move your body because of the fatigue, and all the symptoms kick in super hard. There were times when my mum had to sleep with me because I was so tired that breathing normally wasn’t automatic anymore and I wasn’t inhaling automatically so I was afraid my heart would stop (of course, when you finally end up falling asleep, your body takes control back and you breath normally), but it gets really scary. At that moment, I’d say I am dealing with roughly 40 symptoms.
During these months, I don’t talk to anyone about the diagnosis for a few weeks, and then only tell very few people, moving back in with my parents far from where I was studying, I was entirely isolated, and after a while, it is typical that with diagnostic wandering, friends and relatives stop reaching out to see how you’re doing or what you might have been diagnosed with. I became very isolated. The only family I have (as in, the only family that has ever really been part of my life) is my parents and my grand-parents (with my grand-parents being far way), so the only support I have and the only people I talk to daily, comes from these 4 people, and as grateful as I am, when you only have 4 people to rely on, support you, and they’re the only 4 people you see and talk to daily, it gets lonely very often. I created an Instagram account only for my health issues, to be able to share and exchange with the Lyme community and people struggling with illness in general. I’m also doing a lot of personal research. Covid hits France and the first lockdown begins in March 2020, it’s relatively strict, but I see no impact on my daily life as I’m already stuck at home suffering 24/7. I am loving the irony of everyone discovering what it’s like to be at home with nothing to do all day for weeks, though they’re not in pain and ill. I am also annoyed at everyone complaining to me about it, especially of people with houses or big flats, when I‘ve been stuck in a 70m2 flat for months, and of people who are healthy and are still able to do many things at home, that I can’t (of course I am setting aside all extreme situations of issues at home, such as domestic violence, that led many to find themselves in horrendous situations during lockdown). At the same time of this lockdown, I start researching treatment options, it promptly and almost briskly becomes evident that the best and only solution I have is to go to Germany. My parents and I start researching a specific clinic and decide that I will go there during the summer, for about 3 weeks. With further research and through an acquittance of my mother, we finally decide on another clinic as it is nearer and there are also options of remote treatments. The clinic is changing its premises, so a real hospital stay is not possible during the summer. We decide we will start this treatment during the summer anyway. During the year, I also had to go back to Geneva twice, to attend my Uni exams again, luckily for me, they were online in May and June. Online studying and online exams were difficult for everyone, and I hate it as much as anyone else, but it was a great opportunity for me as I would have been unable to attend the exams physically as I was so unwell. I had been forced to adapt to this mode of study way before anyone else, on my own, and before anything was put into place to make it easier for everyone, and I had to do it when everyone was still physically going to Uni and nothing was in place to help people in my situation either, so I had to juggle it on my own, so I was a step ahead of everyone organisation-wise.
In July 2020 we headed to Germany twice in two weeks for the first appointments. We start thinking remote treatment is the best solution for us at this time in any case because my parents are moving to Geneva as it is the only option, I have of finishing my bachelor’s degree, there is no possibility offered by the university for me to continue remote studying and I can’t live by myself, at 20-21 I have become dependent, it’s very humiliating and distressing. It’s like being a toddler all over again, only whilst being conscious of how physically impaired you are and with the fear of never being able to take care of yourself or provide for yourself. This is not a life I would wish on anyone (apart from the doctors and people who have ignored or minimised my pain, symptoms, and the loss of my life, because they deserve to know what it feels like, if they’re not able to educate themselves). I often reminisce about what I call my previous life, one where I could study, work, party, do sports, go on holidays, go out for diner or a drink and so much more. Having to accept that life as you knew it, and your body’s abilities, will most certainly never exist again, is probably the hardest part, hence the nostalgia. During the summer, we have to move my parents’ stuff from Paris to Geneva and my stuff from my flat in France near the border, to Geneva. This was also super hard on me as I had been picturing myself going back to Geneva, on my own, when I would be ‘perfectly’ healthy again, so the fact that my parents had to take the decision to move there with me was a huge failure for me and I was heartbroken about it for many months.
The reality with chronic Lyme disease is that in France, and in most countries, you’re sick with an illness that is not officially recognised as such, you have no access to treatments, you can’t be on disability or receive any sort of financial aid. Doctors who know how to treat chronic Lyme disease are rare and are often stuck and can’t prescribe adequate treatment. This is mentally draining as seeking treatment elsewhere is extremely expensive, everything is expensive, the appointments, transport, and housing to attend appointments in person, the blood tests, the supplements, the different specialists you see and tools you buy for pain management, etc, we’re talking 10s of thousands of euros. It is also difficult as in person appointments require a lot of organisation and energy as they are far away and when you’re dependent, it also involves needing someone to accompany you. Also, being treated in Germany still means you need a GP to prescribe certain medicines in France if you want them covered by insurance, as well as some of the medical exams, this is extremely difficult to deal with on a daily basis. At times, the anger and sadness of not being able to be recognised as ill and allowed treatment in your own country is heart-wrenching. This breaks you and your relatives as much as the illness itself does. I’d have a lot to say about the disease not being recognised in France, but it’s not really the subject here. What I do want to emphasise though, is that life with a chronic illness that is dismissed and not recognise is so difficult, because it adds so much trouble and difficulty to already being sick and unable to live.
The reality with chronic Lyme disease is that in France, and in most countries, you’re sick with an illness that is not officially recognised as such, you have no access to treatments, you can’t be on disability or receive any sort of financial aid. Doctors who know how to treat chronic Lyme disease are rare and are often stuck and can’t prescribe adequate treatment. This is mentally draining
So anyway, in July 2020, we go to Germany for the two first appointments (on the 3rd and the 17th; they’re the sort of dates you can’t erase from your memory no matter what). The doctor I meet is just great, competent, and human, all of my symptoms finally make perfect sense, and I ticked (horrible joke) almost every symptom of the 13-page checklist. The Lyme diagnosis is confirmed, but I was far from realising I had much more than Borreliosis. In addition to Borreliosis, I am diagnosed with 6 co-infections (co-infections refer to other bacteria or parasites that are often transmitted at the same time as Borreliosis). There is a moment of shock when I receive the results and I am disgusted by everything that’s living inside of my body and my body itself. During the appointment, the doctor explains that we will not be able to treat everything at the same time as it would be too much, and that it’s going to be a long journey, but she is optimistic. I am given the option to treat holistically or take the route of antibiotics. I decide I want the quick and easy way out (or what I thought would be) despite the possible effects on my body, so I go for antibiotics, of course I will also be taking many many supplements and plants to help with the treatment and to support what my body goes through with both the infections and the treatment. I am also told that, in addition to having had to cut every foods I am intolerant to (gluten, milk proteins, eggs, certain nuts, certain vegetables, certain fruits), I have to cut sugar out of my diet because the bacteria feeds off of it, and in order to avoid developing Candida from the important intake of antibiotics. At this stage, I have a better idea of where I’m going, but I can’t erase the gut feeling I have that I won’t get better rapidly, as much as I’d love to, I refuse to have hope because I’ve had hope so many times and been destroyed when the outcome wasn’t positive.
In April 2021, because Lyme disease wasn’t enough, apparently, I am diagnosed with endometriosis after 10 years of suffering and aggravation in the past years. An MRI confirms the diagnosis for endometriosis and adenomyosis in June 2021. Again, I am relieved to be able to explain my pain, but the anxiety of being diagnosed with yet another chronic illness, that has no cure, and no real treatment to deal with the symptoms, hits hard. That’s a whole other story of pain and not being believed and listened to during 10 years, but it does accumulate with the difficulties related to Lyme and life with chronic illness, chronic pain, and exhaustion.
For a year, until July 2021, I continued to suffer in the same ways, with small to no change, treatment is difficult, some antibiotics make me sick on top of the rest. I take 3 antibiotics, an anti-viral treatment (as exams show I have a virus, but we are unable to identify it), an anti-malaria drug, some herbs, and many supplements. I am emotionally over with it all, but I keep pushing because there is no other choice. However, my doctor shares my concern as we see fluctuations on my blood work across time, which had no repercussions on my symptoms. Though the body needs time to “heal”, nerves need time to regenerate, etc, I should be doing at least slightly better. It’s not the case, I am immensely panicked, we discuss my medical history again, something stands out and we decide to do further testing. The result shows high IgG for Toxoplasma (usually, IgG levels prove the patient is immune to the infection (parasite in the case of Toxo) but in some cases like these, where the levels are high and the symptoms also coincide, it demonstrates the parasite is still hiding inside the body). I had declared Toxoplasmosis in 2014, with levels that were so high that the doctor had never seen such levels. There is nothing done to treat Toxoplasmosis in France (apart for pregnant women) and you are just told that it will eventually pass (which is the reality in most cases, thankfully) I was exhausted for months, even though I eventually got better, I was never the same old me ever again. My immune system started failing me and I was stuck in bed with Chickenpox only a few months later. I was clueless. Anyway, the German doctor is shocked about this, and we immediately start treating for Toxoplasmosis, on top of the rest (and we take out other antibiotics at this time, replacing some of them by herbs).
My body is getting more and more tired each day, and the symptoms remain. At this stage, I have just finished my bachelor’s degree, after struggling for 4 years, and I still don’t know how I did it. The illness made it so difficult, because of the pain, the brain fog, the appointments, the fatigue, everything, but I did it. Surprisingly though, the day I receive my final results, I cried, not because I was happy I had done it or that I was over with it, but because I was disappointed that I hadn’t gotten better grades, because of not feeling myself, ever, and needing so much more time to understand and do things. At the same time, I must decide what I will be doing with my life in September now that I finished this degree. I wanted to do a master’s degree in criminology, but that would have required me leaving my parents or travelling back and forth every day, which was obvious was more than my body could deal with. Because chronic illness is always about anticipating the disasters you’ll be facing, I had a backup plan, which was studying International Relations at Queen Mary University of London, fully remotely, so I decided to go with that option. My degree is great and is perfectly organised, and I am happy I still have something that gets me out of bed every morning despite how terrible I feel and how difficult studying with a chronic illness is, rather than doing nothing else aside from suffering, but to this day, I am still heartbroken that chronic illness has taken yet another thing away from me, not because I wasn’t good enough, not because I hadn’t worked hard enough, but because my body is too sick, still and again. I am happy that I decided to continue studying though, it maybe wasn’t the wisest decision and I do regret it sometimes, because I refused some appointments, treatments etc because I knew it’d make me worse or make me lose too much energy, and I couldn’t afford that if I wanted to keep studying despite my terrible physical state. Sometimes I wonder where I’d be today if I had done things differently. It maybe wasn’t the best decision, but it was mine. It’s also super difficult because I find my classes very interesting, but I can never fully research or take the time to study as much as I’d want, I always do the bare minimum to pass because of fatigue, pain, concentration issues, memory issues, needing 3 times as much time to do one thing, and all the symptoms in my eyes, ears, my dizziness, and brain fog etc. It’s very frustrating: I just try to survive and get through it.
That summer of 2021 was probably the worst so far. Not feeling better after so many treatments, having been ill for several years, seeing everyone do many things during that summer and still being stuck in bed most of the time… it was all just too much, and I was struggling mentally as well as physically.
Fast froward to January 2022, the past months have been horrible. On top of how terrible I was feeling, I was being destroyed by the thought that I would never get better, and that would come a time when my doctor would let me down and I would fall back out of the medical system. I decided it was time to really tell my doctor how I felt about the entire situation and what symptoms I was still and continuously suffering from, rather than constantly saying “the usual” (even if she has them down anyway). I spend a long hour with my great interpreter writing a very detailed list of every symptom (the list is long). The doctor asks me to do a few complementary exams and we decide that it’s time that we see each other in person again to discuss everything. So, my parents and I went to Germany in March 2022.
The appointment is very draining, we start right back from the beginning, and go through the treatments that I have had since the beginning. She also thoroughly examines me and proceeds with neurological exams. The conclusion is that I still have traces of neurological damage, I developed Candidiasis despite having cut ALL sugars (except fruit), and my issues are coming from Borreliosis and Toxoplasmosis (hopefully, we are done dealing with the 6 co-infections I had, even though this did not make me feel any better physically). We discuss Toxoplasmosis further and she thinks that the choroidal osteoma in my left eye (which has brought my vision down to 2/10 and can’t be corrected with lenses), which I was diagnosed with in 2010, was probably caused by Toxoplasma, meaning it’s been in my system for a very long time. Toxoplasma can hide in the body and the brain in the same way as Borrelia and also create biofilms. We decided to continue the current treatment I am on (2 antibiotics, the plants, and the supplements) and add medication to treat the Candida and prevent it in the future, as well as increase the antiviral plants I am taking as there are still traces of a virus as well. I am also on a certain pain medication and use anti-inflammatories and CBD to help a little bit.
Life with a complex and chronic illness is a full time job: tracking your symptoms, going to appointments, going to the pharmacy, checking you still have enough meds, ordering herbs and supplements and checking you have enough of them and when to buy them, preparing your meds for the week, resting, being in pain, being stuck in bed because of certain symptoms, managing your pain with massages, baths, meds and many other ways, paying for everything, preparing a budget for certain appointments to be sure you can pay, verifying you’re being paid back by your insurance when that’s involved, messaging insurance, calling to make appointments, emailing doctors, saving everything in properly classified files in your computer and in binders, and so much more. It’s also very draining because you’re always dealing with all your symptoms, Herx reactions (for those who aren’t familiar with these types of infections, a Jarisch-Herxheimer reaction is when the antibiotics attack the bacteria/parasites/viruses and they are killed and release toxins, this is why detoxing and opening detox pathways is very important: we need to eliminate these toxins, the dead bacteria/parasites/viruses and the toxins released by the antibiotics), flares etc. I know some people are good at differentiating between their usual symptoms, a Herx or a flare, but I’ve been terrible at this, I never know whether my pain is just higher than usual, if I’m Herxing and if so from what (I now know I usual Herx for a few days after a chiropractic appointment but it’s the only ones I’ve been able to figure out), if I’m just having a more difficult day and I’m having more trouble tolerating my pain and symptoms even though they’re the same as usual, if I’m sick with something else (this has been very difficult with Covid-19 as well, because I very often have a few days where I feel like a have the flu, feeling feverish, having my nose blocked, feeling of sinus infection, itchy throat, more muscle pain than usual etc. This happens to me a few times a month, on top of everything else, and it’s always the same question and struggle of figuring out what caused it or if I caught something else over and over.
Life with a complex and chronic illness is a full time job: tracking your symptoms, going to appointments, going to the pharmacy, checking you still have enough meds, ordering herbs and supplements and checking you have enough of them and when to buy them, preparing your meds for the week, resting, being in pain, being stuck in bed because of certain symptoms, managing your pain with massages, baths, meds and many other ways, paying for everything, preparing a budget for certain appointments to be sure you can pay, verifying you’re being paid back by your insurance when that’s involved, messaging insurance, calling to make appointments, emailing doctors, saving everything in properly classified files in your computer and in binders, and so much more.
Today, I am 23 years and 8 months old, I think aside from the chronically ill, no one can understand dreading your birthday and becoming a year older and still being sick and dependent, with so many doubts about the life you will be able to have. I have so many concerns, healthy people don’t understand them or have “solutions” that are just wrong, heart-breaking, or highly insensitive, it’s difficult staying calm towards these comments. I have no idea what the future holds, and I am not sure I can take this any longer, whether it be physically or mentally, but I am still hoping to reach remission. I am fortunate enough to be believed by the relatives who help me and take care of me (my parents). I am also extremely lucky to be believed and supported by my German doctor, even though I keep reminding myself there are no guarantees as far as the outcome is concerned, as to not be too disappointed. Sadly, I know for a fact this is far from being the case of every Lymie, and I am in the best hands possible at this stage. Financial difficulties that come with such illnesses are never really spoken of, not being able to be treated in your own country under the insurance (that you pay for), not being able to go on disability, and all the other costs that come with it are super hard to deal with. I am lucky that my parents have been able to pay for them until now (even though they have sacrificed everything else to do so), but it won’t last forever, and I am particularly scared of what will happen when this time comes. I’m also terrified of what would happen if anything were to happen to my parents, losing your parents is a horrible thing whichever the context may be, but when you have no one else that would be able to help you physically and financially, no one to rely on, you wouldn’t be able to live, work, ANYTHING, that fear is just multiplied by 100.
I’ve become a young adult who is immensely afraid of nature, of all insects and of how the outdoor world can kill me.
I’ve become a young adult who is immensely afraid of nature, of all insects and of how the outdoor world can kill me. I screamed and cried a few weeks back when I thought a fly had gotten in my nose. I know that if I ever do get better, this is something I will have to work on, as I have always loved nature and spending so much time outside, but for now I see the risks as being just too high. I have also lost many many friends along the way, for different reasons, because people get used to you being sick and stop worrying, because they tend to take a step back from a chronically ill person because they don’t know how to react, because I’ve been more distant and haven’t really explained things and what I am going through, because people think that sending a message every 5 months saying they think about you but they’re just really busy is enough (of course, this applies differently to different people, I know for a fact some have huge problems in their lives that they are dealing with. I am also aware that in general many people have a few issues they deal with behind the scenes but as long as it doesn’t stop them from living a “normal” life and when you see them going on holidays, going out, doing sports, being in Uni full time, working, and many other things, it just means they haven’t taken the time (someone who is healthy enough to do that many things has 3 minutes to send a message if they really want to), and the difference between not taking the time and not having the time is tremendous. Also, everyone has different priorities and that’s totally fine, but it’s good to figure out where everyone’s priorities stand and take these people out of your life for the future. Others think asking you to go out for a drink once a year and you refusing because you’re too unwell is the proof that they’ve done as much as they could to be a good friend and you’re just the one not available, this is wrong in so many ways.), etc. Humans in general also tend to have this awfully bad habit of considering they know, understand, or can imagine what your life resembles, when they don’t see you at your worst, or anything near that state, that is something that drives me insane. This even happens with the people closest to you who understand the most, I often get told off because I don’t speak loud enough, that happens because of exhaustion, speaking from your mouth takes way less energy than taking in extra air to speak louder, and despite how much time I’ve explained that, I always get criticised for it. It’s already difficult to make yourself understand that you’re not lazy you’re just inexplicably low on energy and you’re using it all to survive. No one ever really knew or knows how unwell I am, and I’ve had friends at the beginning of my diagnosis being upset that I wasn’t talking to them anymore, instead of wondering why I wasn’t and considering how physically unable I was (am) to do anything. I tend to feel like I don’t have friends anymore, because no one knows what day to day life really looks like and what happens behind the scenes, no one is present on a daily basis. I’ve also had MANY people (some of which I still consider as friends) tell me I was looking well or nice, and that they felt like I felt better or was doing better (like, what?!), it’s always the “but you look good” and this is so difficult to hear as it really discredits how bad you’re feeling. I know I do have a few friends that are great though, and I appreciate them and them trying, a lot. I just think all of this trauma is going to need to be delt with if I ever get better, because coming back into the outside world is something I am terribly fearful of, my life has become so different, and I have this anger against life in general and the people who have gone on with their lives. I don’t feel I would be capable of seeing the same friends as before and start where I left off, I view things so differently now that it would be so difficult, and also pretending like they haven’t lived whilst I was dying in my bedroom for all these years just seems impossible. This is a horrific thing to say, but I know that there are some people who still consider me as their friend, and would probably consider hanging out with me again when I get better, but to me these people just haven’t been present through my life with these illnesses (whatever the reason may be, even if their intentions weren’t wrong or bad, the reality is that they were not part of it, and I do not see myself pretending and acting like they were or like it doesn’t matter that they weren’t). Hopefully, I will be able to travel and do many things and meet new people, which will also help me heal and go forward with my life. At least, this is what I am hoping for if I ever do get better…
The dream of every chronically ill person is to get better one day, but how do you pick up the pieces of your life when it’s been shattered? How do you get back up mentally even if you get better physically?
You can support Silène here: https://www.leetchi.com/c/pour-aider-silene-dans-son-combat-contre-la-maladie