Living with Chronic Fatigue Syndrome at 16

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I am 16 years old and I have a condition called Chronic Fatigue Syndrome. It is a life-long condition, with no known cause or cure. I am one of thousands of people in the UK alone who is affected by the condition. It can affect my life in many ways. I try and not let it, but sometimes that can be like fighting a dragon blind-folded with one leg.

Some people don’t take this condition seriously. I don’t entirely blame them. If I were in their position, there is a likelihood that I may not believe them. My mum for example didn’t believe me when I told her something was wrong. “You’re being a teenager” she said; always belittling my thoughts and feelings about what I had. My friends are somewhat more understanding, but don’t always understand what I have and how I’m dealing with it. I’ve had this condition for 2 years (which in comparison to other’s amount of time they’ve had their illness is short, I know) but I’ve experienced enough pain, sorrow, and fatigue to understand what I can now call my condition.

I want to start with the day I got diagnosed; it was only recently so I can remember it pretty well. I had been to many doctors appointments over the years and most of my time was waiting for appointments to come through. I had been referred several times to other hospitals and specialist places but they came up with nothing. I’ve had so many blood tests, I’ve lost count. I would also like to point out that I have terrible memory, like seriously bad.

The last 5/6 years of my life can be blurry most of the time, but they day I got diagnosed is a day I will never forget. I had to go to a specialist hospital 50 miles away (a whole day off college which I just started and a whole day travelling… great). I arrived over an hour early and the receptionist said that the doctor may see me earlier so that I am not left waiting. He was still 5 minutes late but that’s the NHS for you (I’m joking since they do so much good for so many people, but damn the waiting times suck so hard). When I sat in his office, he had a lot of paper on his desk with big words and boxes and I started to feel overwhelmed. He was super kind and nice about it. He wasn’t dismissive of what I thought. He was calm with his words; not too fast or expect me to understand things that a normal person like me wouldn’t. He was a good doctor – probably the best one I’ve had. He started off by asking me questions about my home life and family and illnesses, things like that. Then talked about school and how I’m coping.

After that, he talked about my symptoms and before I knew it, a whole hour had passed. He asked me some questions from a form that they use to diagnose people with CFS. I needed 3 main symptoms and 5 minor symptoms; I had 4 main symptoms and 9 minor ones. Needless to say he said I definitely had Chronic Fatigue Syndrome. I wanted to cry. Honestly. After so many years of suffering and nobody believing me, somebody did and basically told me I’m not crazy and these things I’m feeling are not normal. Although I was diagnosed, you’d think my life would magically get better, right? It didn’t. Everything stayed the same, except this time I had a valid reason as to why I felt like crap all the time which kinda helped me.

School life can be hell. I have a friend who also has CFS – we actually became friends through our mutual illness. She also agreed that school is terrible for someone with our condition. All the tests, waking up early, having to do so much movement. At my college, there are so many stairs and different buildings. It’s kinda ridiculous. The endless amount of work, which yes I know is to be expected, can just be so draining. After you’ve spend several hours at school, you then have to go home and spend another several hours doing more work even though you’re so fatigued. Then, once you’ve done all your work and you’re free to socialise or relax, you don’t have the energy to do so, which then has an effect on your friendships and your confidence, and it’s just a downward spiral from there. School. Is. Terrible. I am looking forward to when I leave, even though I have no idea what I’m going to do. I’ll deal with that when I get there.

As I mentioned, CFS can take a toll on your relationships with people. My friends don’t entirely understand my condition so when I say,

“I can’t come out. I’m too tired. Maybe next time.” They usually think I stayed up late and that’s why I’m tired. They don’t question it a lot, but I know they are unsure of it. Even if they did understand, it wouldn’t matter because I wouldn’t have the energy to hang out with them. When I do decide to go out, I get serious pay back the next day. This is again mainly due to stress of school and moving too much that I use all my energy up in one go. So, most of my friendships are online since they’re easy to manage.

I hope this gave you a small insight to what somebody at 16 living with a life-long, chronic illness goes through. I’m trying new methods so I will write so more on my experiences and how I cope. Thanks for reading this.

Succeeding at school with fibromyalgia

When you’re living with fibromyalgia as a teen or young adult, focusing on school can be challenge. Follow these tips for rewarding educational experience.

Just getting through the day can often be hard for teens, and so can the transition from high school to college. Add in the challenges of living with fibromyalgia, and coping with school seem like one giant hurdle.

Even getting to class was incredibly difficult on many days, Tobi-Dawne Smith, now 34 and living in Saskatoon, Saskatchewan, Canada, remembers about her freshman year in college. There were some times that I couldn’t make it up the stairs from my basement suite, forget walking the 25 minutes to campus and my first class of the day. And there were times when I did make it there that I was in too much pain to sit through a lecture.

Though fibromyalgia is most common in middle aged women, it certainly can strike at younger ages. Studies estimate that up to 6 percent of school-age children may have pediatric fibromyalgia, and as in adults, it’s more in girls than boys. While exact number of people with fibromyalgia in their late teens and early twenties are hard to come by, Daniel Kantor, MD, president of the Florida society of neurology and the medical director of Neurologique, an organization dedicated to patient care, research, education, estimates it is well over 200,000 Americans.

Challenges in attending school

Living with fibromyalgia can bring a host of difficulties when it comes to success in school. Symptoms may include aches, pains, headaches, fatigue and sleep disturbances as well as anxiety, depression and difficulty concentrating Fatigue leads to general reduction in school performance, says Dr Kantor. Concentration issues may cause a drop in grades, and catching up on school work can be difficult when class time is missed because of symptoms. Fibromyalgia pain may prevent kids from playing sports during physical education classes or in school or independent leagues. Navigating crowded hallways, carrying heavy backpacks and staring at computer screens can also exacerbate physical discomforts.

Depression can also contribute to concentration problems and feeling of exhaustion and some research suggests that adolescents with fibromyalgia are more likely to feel isolated and less popular at school.

Tips for school success

There are steps that young people living with fibromyalgia can take to find success at school: try these strategies

Consider your schedule

Try to schedule your classes for your best times of the day and look into talking online courses when possible

Ask for help

Don’t be afraid to request assistance, whether it’s getting to class or taking notes once you’re there. See if your school has a union for students with disabilities that might be able to help.

Test the waters

In the online fibromyalgia patient forum Fibrotalk, participants suggest starting with just one class and seeing how it goes. You can always sign up for more classes’ next semester.

Get the word out

Educate friends and classmates about the challenges of fibromyalgia. Also, consider joining the support group for more information and camaraderie.

Take care of yourself

Eat right, try to get enough sleep and use stress-relief techniques

Don’t let fibromyalgia define you

When you’re in so much physical discomfort, it’s easy to focus only on your health, but try to help others by volunteering for a cause that’s meaningful to you or working on an outside project that you find fulfilling.

Evaluate your doctor

Make sure that you see a physician who has sufficient experience and knowledge in diagnosing and treating fibromyalgia. Specialists include pain management specialists, physicist, psychiatrist, psychologists, physical therapists, and rheumatologists.

Don’t give up hope

A wide range of treatments are available. If one option isn’t working, don’t suffer in silence. Reach out to your treatment team and ask to try a different route.

Exercise

My best would be physical activity, at least 200 minutes a week to distract the mind and help the patient feel better. As someone who’s lived with fibromyalgia in her teens, Smith has some sage advice for her younger peers. Take time out every day to find something that gives you joy, even if it’s something seemingly insignificant, she says. Hold on to the joy whenever you can find it.

And remember, she says, it will get easier.

For support and Discussion join the group “Living with Fibromyalgia and Chronic Illness”

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