Updated: Nov 15, 2021
First of all, thank you so much for over 4000 views! This means so much to me and I truly appreciate each one of you, and I am so happy that there are new people joining this wonderful community. I am sorry about the messages not working, it is not in my control and I can only hope that this time there will be better luck.
As I mentioned in my previous article, I have so many things to write about because it’s time to share my experiences. In today’s article I will talk about my physical pain and I am certainly nervous to talk about it openly. I wrote this article at 1 am so there is a bit sarcasm here and there, but I am stressed about packing and I have an assignment due in five days.
Let’s talk about medical gaslighting!
I am sure I mentioned last year that I’ve had a chronic illness that has been affecting my knees for 15 years now, however my pain has started long before that. Do I know what it is exactly? No. The doctors still can’t tell…
I will start from the beginning. I think when I was 3-4 years old I’ve started having certain symptoms associated with rheumatism, I used to wake up crying in so much pain because my tibias were either extremely cold or hot, it felt like something was pulling them out of my body. My mom had to wake up to massage my legs and put a hot compress to help with the pain. By the time I was 6, I have started to manage it by myself. Crying silently, I was massaging my legs until I could fall asleep again, I did not want to wake up my mom all the time when she was working two jobs. At the age of 7, I’ve started showing the first symptoms of what I would experience for the next 15 years…
I was standing and my right knee cap almost dislocated, I would describe the pain as if someone just hit me with a hammer. Shortly after that episode, I have started experiencing this constantly. The frequency of these episodes increased rapidly and the pain was long lasting. I remember the amount of times when I was just standing or walking and I would end up on the ground unable to stand up unaided. My knee would be swollen for one or even two weeks, it was impossible to straighten it and I went to school limping far too many times. Once it happen so sudden and my school bag was heavy, I fell and a sharp stone cut my palm and got stuck there, I can still see the sign.
I was in pain every day but I wanted to feel like the rest of the kids, the difference is that I had to push myself harder to be able to perform even basic things. I wanted to feel strong so I never gave up on sports and I always gave my best.
I was training almost daily, balancing handball and karate for 5 years, at school I was forced to run and do sprints despite repeatedly telling the teacher that running hurts so much.
At the time I lived in the countryside and I had to take of the animals and do a lot of physical work because I was always alone, my mom was at work and my grandma was bedridden.
I’ve started using painkillers when the pain was unbearable, however they didn’t do much (and nowadays my tolerance is so high that I just gave up on the idea of taking anything).
Eventually, my mom took me to the hospital because I was limping too often and the doctor told me that I am making things up because such symptoms can’t be experienced by a child and this is probably the pain of growing up (sorry, don’t know how to translate it properly), he was also very rude and screamed at me. Few years passed and I kept putting up with the pain that kept increasing, but without giving up on sports.
In high school I went to a private hospital, the amount of useless X-rays that lead to nothing is absurd. After some time, I was told that I need an MRI but I am too young and I should wait. My mom paid considerably for this and eventually got my first MRI done at 16.
I went another private doctor, she told me that what I have is pathological because I am too young for this or it might have been an injury, because my meniscus was torn but already healing. I asked her if she had a diagnosis and she said most probably gonarthrosis (knee arthrosis).
I was fit and strong and one messed up recommendation was to lose weight (this is also the time when my eating disorder was getting out of hand and I was already starving myself, therefore hearing this made me feel devastated), I was annoyed by this comment and I decided to flex and told her to check how strong I am. The next thing she said: “you should stop exercising so much; you are a girl and you don’t need to have such muscle mass.”
Months later I started having problems with my left knee as well, same symptoms…
More money wasted on another MRI, my mom ended up having no salary for more than a month to cover for my hyaluronic acid knee injections and medication. This doctor contradicted herself several times by telling me that I need to keep exercising to stay in shape but at the same time decrease my muscle mass by exercising less. Where I am from, the solution for every bloody problem is weight loss! My home country has such messed up beauty standards that only skinny means healthy and attractive for them. Oh, and girls need to be short, while I am taller than most men. I can’t describe how inadequate I feel in that country, people make sure to always make comments about my weight and height. Eventually the pain became unbearable and I had to stop practicing even karate, my legs were constantly shaking. Giving up on your passion is extremely difficult but I’m used to this now…
The medication did absolutely nothing, the injections were supposed to last for a year but they lasted less than six months. I tried a second time and again, more MRIs and of course the doctor decided to body shame me and then asked if I am still a student. I told her that I was a flight attendant and she changed her attitude completely towards me, finally treating me decently. She even called another doctor to keep ice on my knees during the injections.
This time, unfortunately, the effect lasted around two months. These injections are extremely painful, it takes quite some time for the procedure, and my knees react in a different way. The right one burns and the left one feels like it’s freezing, my knees were swollen for a week and I could barely stand or walk. I decided that it’s a waste of time and money to keep seeing this doctor and seek treatment in my home country; plus I basically paid to be treated poorly and body shamed.
Despite all the pain, I managed to work as a flight attendant for two years where I had to wear heels every shift, even for 16 hours a day. I had too many flights, too much work…
My knees were always swollen and hurting but I hid it from everyone.
In February 2020, I had an accident, my left knee cap almost dislocated when I was in the house (this was my healthier knee). My first reaction was to grab my knee as I was in excruciating pain and tell myself that I am okay…
I wanted to scream but I stayed silent. I fell on the floor, however I managed to stand up and get some ice, I kept it on my knee for hours and took a few strong painkillers hoping to make it at least less painful. That night I had a night shift but I already asked for sick leave before, so I forced myself to go to work hoping that I won’t get into trouble. I lived quite close to the airport but I still had to walk for forty minutes, the crew decided to take me even though I could barely stand. I had awesome colleagues that didn’t even bothered to help me with my crew trolley on the stairs, but I managed, like I always do. The flight was pretty much dead so I had time to sit down more. When the shift was over, I had to walk back home again but it took me over an hour limping.
I saw a doctor after sleeping for a bit and I was sent to the hospital on suspicion that I might have torn my ligament. They did some scans and everything was ‘fine’. They didn’t tell me what happened exactly, only that I should rest for six weeks to recover.
Since my airline was amazing, I couldn’t take six weeks of sick leave because I wouldn’t have had money for rent so I only took two. I had to stay in bed and I wasn’t supposed to move much, I still had to walk to the store and buy food and then cook, up and down the stairs…
I was supposed to be seen by a specialist to start physiotherapy but they never called me. Afterwards, the virus happened and I lost my job, got stuck in the U.K., delightful…
I was referred to the hospital after I asked the doctor for knee injections. It’s been a year and a half! Two hospitals later and three more MRIs and I am just as confused as before. Nobody can tell me anything, nobody takes my pain seriously because I’m ’too young’, rude condescending doctors too but hey, no body shaming here…
Being in London made my knees so bad that they were getting stuck in a certain position and I was unable to straighten them for days. They wanted me to continue with physiotherapy for two years and then they will see what can be done. Honestly, what the hell? I had to beg my physiotherapist to ask for the steroid injections and I was limping too much; I asked for an earlier appointment with the specialist and I was basically screamed at because I had the nerve to come earlier than initially planned. That doctor try to force me with his hands to straighten my knee and I couldn’t, I almost started crying because of the pain. I was told I need to wait few months to get new MRIs and then wait for the injections.
Fast forward May 2021, I finally got the magical injections!
I wasn’t living in London anymore so I had to travel, I spent over an hour on that bed crying in pain and shaking. They were worse than I remembered but they were also four injections, and they had drain my right knee. I was told they will use a local anaesthetic but I could feel all the pain.
I limped back to the train station and then it took me one week to start being able to walk better.
The injections helped a bit and I was able to walk more easily but when the effect started to wear off, the pain became worse. I was struggling to turn around in bed, leave my bed, and walk.
My knees started to become swollen more often, again struggling to straighten then.
Nowadays, I need to support myself when walking alone, always hold onto a rail when going up and down the stairs and I have limited all physical activity because I can barely bend down to tie my shoe laces sometimes…
I am only 22! I am not really living my life because every day I am in pain.
I didn’t get any medication prescribed in the U.K., I was just being told repeatedly to continue with physiotherapy. How am I supposed to do those exercises if I can barely stand and my knees are swollen and locked? I still forced myself to go to the gym, dance and go for long walks.
I also hate that every time the doctor sees me he is so surprised that I am so strong, like he is expecting my legs to be soft because they probably look like that now. However, I know I am still very strong, my body and muscles are hanging on for dear life.
Again, I asked for a diagnosis and he just shrugged his shoulders. This is supposed to be a good hospital in London but I feel like I am back home. Nobody takes me seriously, people just stall because apparently I am too young to have my pain taken seriously. Are 15 years not enough? Am I supposed to wait until I am in my 40s to get a bloody surgery? Do I need to start walking with a stick from now on?
Regardless, my physical pain is also heighten by stress and anxiety. Right now I am feeling calmer and less stressed, and I can manage my pain better.
At this point, even if the doctor says that he wants to perform surgery on my knees I will say no. I have trust issues and honestly, I doubt their competency. I can’t trust a doctor that shrugs his shoulders when I ask about a diagnosis, it’s not okay…
I am too tired for this, nobody has an answer, nobody wants to find the real cause of my illness and why it’s just getting worse and also spreading.
Sometimes I just feel so alone and isolated, I am even walking much slower to prevent further pain.
I am just a shadow of the person that I used to be and I feel like I am missing out on so many things. I would never take for granted the ability to move freely and pain free…
I will keep doing my best to take care of myself as much as I can.
I guess I am ready to start again with new doctors, I hope I will have better luck, I am getting older and it’s getting harder and harder to hide my pain. This is a disability but until now I refused to accept the truth…
If you are going through a similar situation, I want you to know that you are not alone, this is a safe place and I am always here to listen. I see you and I feel your pain!
I will stay positive because I know there is still hope and things will get better soon! I am learning to trust my journey and learn from each experience. I trust the Universe!
Today's song: https://youtu.be/RBhetSJkf4I