• Category Archives Healthcare and Fighting the Medical Model
  • Featured ImageCross-Cultural Disability

    By: Kameron Bryn

    I grew up in the fourth biggest city in Norway, Stavanger, which has a population approximately twice that of Redlands, California. The entire country’s population is around the size of San Bernardino. Norway is associated with democratic socialism, free healthcare, winter sports, oil, and fish. This is where I spent the first decade and a half of my life. “Why would you move here?” is something I hear a lot. In theory, Norway is the better place for someone with my condition: free healthcare, excellent social security, liberal laws, etc. And, while that is all true, it’s only half of the picture.

    When I was 16, I moved to Redwood City, California—warm weather, excellent healthcare, diverse culture and population, friendly people, and a large LGBTQ+ population. The perfect escape from a cold and frigid Norway, and yet, it did little to ease my suffering.

    In May 2014, I started suffering from chronic headaches and fatigue and was diagnosed with anemia. However, being the smart cookie that I am, I decided to not take my iron supplements as they caused even worse headaches and nausea. This led to a complete iron depletion in October. My entire body stopped functioning, I was hot all the time, I couldn’t think, and I barely had enough energy to move. I was a mess. I started on the iron tablets again, and while it helped a lot with the fatigue, I started experiencing aches. First once or twice a day, then several times a day, and then non-stop. My sister recognized it as Fibromyalgia. I was diagnosed in the spring of 2016. It was a long and harrowing journey.

    Black and white photo. Young, Caucasian male standing against a wall

    Fibromyalgia is an old person’s disease. I’m chock-full of those. I got diagnosed with arthritis this summer at 19, and low tear production at nine. I was always too young. I often wondered if there were ways it could’ve been prevented. At my eighth birthday party, I was playing in a play-house and I suddenly I felt as though I couldn’t breathe. I was lying on my back, gasping for air. I had fits of nausea throughout my entire childhood. I got headaches frequently; it felt like tiny men doing construction inside my head. But these were things to ignore. That’s the Norwegian way—to ignore. Even when we went to the family physician, he seemed to have a hard time believing me. When my sister suspected fibromyalgia, it was dismissed. “I don’t want to diagnose you with that”. I was sent to psychiatry, and they confirmed it wasn’t psychosomatic, but he still refused to do more tests on me. There were reports of Norwegian teenagers who were put into induced comas due to paralyzing pain from over-exertion. Before my iron-depletion, I was in the rigorous International Baccalaureate (IB) Middle Years Program , choir, Model United Nations and fencing twice a week. Pain is something to be ignored.

    My (undiagnosed) fibromyalgia made it so I only barely graduated from Middle Years Programme (MYP ), and my mother took me to see specialists. As specialists aren’t covered in free healthcare, it cost a couple hundred dollars for each test they did. The treatments were just as limited as their knowledge. They agreed that even though it’s likely that I have fibromyalgia, the diagnosis wouldn’t help much as the treatment would be the same, either with specialists or be put on a waitlist for one to three years for treatment by public healthcare. Stavanger is one of the best places to have a heart attack. Chronic illness? Not so much. Fall 2015 I started treatment at the Pain Clinic at Stanford Medical Center. They still refused to give me a proper diagnosis, but I was being seen by a psychologist, physical therapist, psychiatrist and acupuncturist. The treatment helped, but school… was a nightmare. I was doing the same IB program at the American public high school I went to, but IB at that school was IB on top of regular school. I left the IB program within the month. I was still very ill, and the concept of doing six hours of homework every night on top of eight hours of school didn’t agree with my fibromyalgia. I asked for accommodations, but the only thing they could grant me was homework extensions and a permanent hall pass.

    That didn’t make much difference when I could barely get out of bed. After three months of brick and mortar, I unofficially dropped out. I transferred to an online school, but there was still a requirement of nine hours of schoolwork per day. No one had told me the American Dream translated to ‘grind until you die’.

    I unofficially dropped out of online school in the spring and then studied hard and tested out of high school in the fall. Just in time to move to Southern California as there was nothing left for me in the Bay Area. My sister was attending the University of Redlands and was my greatest support system at the time, and it was great to be with her again. I spent the next year in limbo, trying to figure out what I could possibly do in my current state in a country that didn’t seem to want me, from a country that didn’t seem to want to help me.

    I have since paved my own path and worked with people who did want me and did want to help me. I think a lot about my two cultures and how they’re ingrained in my DNA and psyche, as much as I try to withdraw from them. I take no pride in them, but I have great interest in them—in how they shaped me, and how they treated me, and people like me. How they helped me and how they hurt me; how my experiences are unique and how they are universal.



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  • Anxiety & Doctor Appointments

    By Kirsten V. B.

     

    Doctor appointments, blood tests, needles, MRI scans,.. If you have a chronic illness like me, you know the drill. Does your heart start pounding from the moment you enter the waiting room? Do you have sweaty palms? Do you try to minimize your symptoms to your doctor because you are afraid of their judgement? Do you freeze up when they question your health issues? Do you think of all the things you should have said on the way home? Does this sound familiar? It is all too familiar to me!

    You could say I have a lot of experience when it comes to doctor appointments. I have had chronic health issues ever since I was nine years old. It took me ten years and a good amount of doctors before I finally received my diagnosis.

    I still feel anxious every time I have to see a doctor for new symptoms. And let’s face it, no one ever came home saying they had a blast at the doctors. There is no “cure” for anxiety, but I thought I’d share my tips and tricks to make it more manageable with you.

    1) Prepare

    I think this one seems pretty obvious. However, I know that I always manage to forget to say at least one thing during an appointment. Whether it is asking for a prescription or explaining a new symptom I have been experiencing, something always slips my mind. When there is a lot to remember, make a list of things you need to talk about. At the end of the day, doctor appointments cost us money and time so it’s better to prevent ourselves from having to make another appointment. The last time I saw my General Practitioner (GP), I wanted to hear her opinion on a word I could not pronounce. Instead of worrying if I could say it the right way, I just wrote it down and showed it to her.

    2) Look For Support

    I’m lucky my mom has always come with me to doctor appointments. It’s a comforting feeling to know you don’t have to do this by yourself. I know this is not a possibility for everyone, but try to tell someone that you’re going. Explain what’s wrong to them and what answers you hope to get. It can be as simple as texting a friend. Sharing your experience with someone makes it less scary. I personally struggle with chronic fatigue and sometimes when I’m really unwell, it’s hard to explain everything properly and react when I don’t agree with something that the doctor is saying. When this happens, my mom will notice right away and stand up for me when I can’t.

    3) Reward

    Whenever I have to do something that scares me or is hard, I reward myself afterwards for my courage. When I was little and went to the hospital for tests, my mom and I stopped at McDonalds for a shake or ended the day on a good note by going shopping. Now that I have my diagnoses, I thankfully don’t have to go to as many appointments as back then, but I always like to have something to look forward to. Save that new episode of your favorite Netflix show until you get home after the appointment or take a long bubble bath.

    I hope this helped you in some way and that you’re doing okay.

    Lots of love,

    Kirsten xxx

    A young white woman in a white shirt smelling a flower that is hanging above her.

     

    Kirsten searched for ten years for a diagnosis for her rare symptoms. In November 2015 she was, finally, diagnosed with fibromyalgia and chronic fatigue syndrome/M.E. In October 2017 she started her own business, Graphic Organic. She’s a strong believer in fulfilling your dreams without pushing your limits. “Taking a different path doesn’t mean you’re lost.”

     

     

     

     

     

     

     

     

    Check out more articles at https://www.graphic-organic.com/blog

    By clicking on links to other websites you understand that the thoughts and opinions expressed of most websites are not that of CFILC or any of its partner programs.

     


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