My HSD diagnosis made me feel more hopeful than ever

Posted September 4, 2019

It all started in my last year of high school. I had suffered from headaches and migraines my whole life, but when I was 17 I got a headache that wouldn’t disappear.

I went to doctors, physiotherapists and dentists: they treated my with acupunture and tried to pull my teeth out. The first tooth split and the root stuck in the gum so they had to remove the next one with surgery. I got braces, but the day before my graduation I just couldn’t hold my head up. My body felt as if it was being filled with lead: I constantly gravitated towards the ground. I started university in the Fall but it didn’t work out as my dizziness escalated. My whole body felt unstable.

My physiotherapist mentioned that I was probably hypermobile. She DID NOT tell me that my hypermobility could actually be the reason behind my symptoms, which no doctor could explain. I went to numerous specialists, including a neurologist who took and EEG and CT.

I struggled for years before finally leaving home when I was 22 years old. Somedays I felt fine, others I was bedridden. Every afternoon it was like my body shut down. I noticed that my friends didn’t seem to experience this.

I developed anxiety issues because I had to hide my symptoms from my friends and teachers, and from trying to keep up with the busy life others seemed to handle totally fine. Sitting up during long days of lectures I found almost impossible; my spine and neck would gravitate towards the floor. At home I always sat in distorted positions but in the classroom or theatre I couldn’t sit like that. I couldn’t study in bed because it was too soft and my body didn’t get any support.

I had headaches, and as my life was so busy, my muscles weakened due to lack of exercise. I had always been active my whole life up until then, and as my muscles weakened, my symptoms worsened. Stiffness, restlessness in my body, inability to sit or stand for too long. After each day it felt like I had run a marathon; my body was tired but I suffered from insomnia. Then the gastrointestinal issues started and eventually, I stopped eating before leaving the house because after each meal I was sick, sometimes for hours.

My social life diminished, and friends disappeared because I could not bring myself to tell them about my condition.

My boyfriend got mad because I couldn’t keep up with his schedule. His family told me it was my own fault I was sick or that I made it all up.

The doctor I went to wouldn’t look at me; he just refered me to a psychologist. I never went because I couldn’t leave home due to my gastroissues.

I was always exhausted or in pain. If I ate I got sick, if I didn’t, I was fatigued.

My boyfriend started physically abusing me because I was unable to work and go out having dinner with him. I worked nights for a period. I started at 5 pm. The whole day, everyday, I was sick and couldn’t eat. Then I went to work and at 10 pm when I came back home, I ate a meal. I finally left him and moved to another town where I started working as a preschool teacher. Everyday I focused on just standing up, as it felt like my body wanted to fall apart and faint. I was a zombie, brain fogged and by 1 pm my body had shut down. If I sat on a chair my torso would tilt to the side. Every afternoon was a living hell. After work I had a 9 minute walk to the bus and everyday I just hoped I wouldn’t faint. At the bus stop I always fell asleep. I came home, ate dinner, and the rest of the day was occupied by abdominal pain.

Every weekend I tried to take a walk in the morning, and every afternoon I was fatigued and had to lie on the couch unable to talk or move. I eventually was diagnosed with IBS. My doctor couldn’t explain or understand the fatigue, instability, stiffness, the feeling of lead in my body. I couldn’t eat large meals, I was always hungry but when I ate after two bites I felt full, and after two hours I was hungry again.
When I worked my immune system seemed low as I had a terrible cold at least once a month. I thought this was part of the job, but my collegues didn’t seem to catch every cold that circulated among the children.

I tried to explain my situation to my boss and my collegues, but was mocked. Everybody is tired these days, they would say.  I had just got back to work from four days of immobility in bed; it wasn’t that I wanted to be in bed, I actually hate to chill. Everyday I got up, ate breakfast, took a shower and put nice clothes on. I often went out too. After lunch my body just shut down, and I couldn’t tolerate daylight or noises; every noise was like a knife in my body. I felt like I was trapped in my own body; not able to express my personality. My boss said it’s probably psycological and then she fired me.

When I read about EDS and HSD it was like reading about my adult life. I feel like I’ve been robbed of my entire youth, struggled alone and misunderstood.  I always keep people at a distance nowadays, out of fear of being rejected or forced to push my body’s boundaries and worsen my symptoms. I manage my gastro issues quite well nowadays but I never know what the day is going to be like when I wake up. If I work out I usually feel better, but sometimes it leaves me immobile for up to five days.

My calender has these black holes where days disappeared, and when I feel fine again I always have tons of things to take care of; I’m always a bit behind. My major concern is how I will manage to support myself financially. To keep my dignity I broke contact with several people who didn’t support me. I can’t stand one more persons disbelief in me, not on top of all my symptoms.

My twenties was hell, but now that I have finally found a reason for my symptoms I feel hopeful and stronger than ever.  Life didn’t turn out the way I wanted, but my will to live has never been stronger. I find that no network at all is better than one that is judging and disbelieving you. I recently found out that there is a community for zebras online, and that I may be a zebra myself. This makes me stronger everyday. I also, for the first time in my life, have some sort of evidence. When I watch all the zebras online it feels like I have finally come home after being lost in limbo, and now I have found my people.

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