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This session is part of a series of FM & ME/CFS Researchers and Expert Clinicians kindly donating their time to answer questions from patients and health practitioners. In this case, the expert is a patient, Sarah.
As with all of our experts, due to law and good medical practice, Sarah won't answer specific questions about a particular medical case.
Online with Sarah, any Questions about youth and CFS?
Tap into Sarah's personal knowledge of CFS.
Her bio:
"Sarah was diagnosed with Chronic Fatigue Syndrome at the age of 12. Now 18, she has overcome severe depression and the many other challenges facing young people with CFS to become a confident happy young woman who just happens to have a chronic illness."
Click for Sarah and her family's story in the St. Catharines Standard.
Your Question:
How can I explain CFS to my friends and peers?
Sarah's answer:
It can be very hard for friends and classmates to understand what CFS is, because it's a concept that is quite hard to grasp unless you've been through it. Let them know that they can ask questions and that you'd be happy to answer them, so they don't feel uncomfortable bringing it up. They might be afraid of offending you or be embarrassed that they don't know anything. Tell them your basic symptoms - the fatigue, pain, brain fog, dizziness etc.
The fatigue is one of the hardest for people to comprehend. I like to tell people its like having been on your feet all day, really busy, doing a million things and it's the end of the day and you just want to roll into bed and sleep and never move again because your brain also seems to have turned into mush, except its 9am and you have the rest of the day to get through. Another description is like running on a battery that's only ever half charged. They will probably never understand exactly what it's like to experience, but as long as they have a general idea and understand the seriousness of the condition, then you're doing well.
Also make sure they understand that your symptoms can vary from hour to hour, even minute to minute, so if you have to cancel plans last minute, or suddenly you look like you're about to pass out, they understand.
If you don't like having to repeat yourself every time somebody asks, you could always type out a quick description of your symptoms and make copies to give to people, which saves time and energy and lets you word everything perfectly.
Your Question:
Sarah,
Given you have what the insurance industry calls a pre-existing condition
which I believe will disqualify you from health insurance unless you're part
of a group plan, and as you haven't paid into the tax system to earn the
right to get the Canada Pension Plan's Disability Insurance, is there any
funding you know of that would allow you to live independently?
Your situation is like so many of us with CFS, but worse because you're so
young. I have to hope Canada gets interested in medical research and
improved treatments so that you and the rest of us have a brighter future.
Fortunately, some of the other countries like the US and UK are making
advances. Let's keep our hopes up.
Sarah's answer:
Sadly, I have, as of yet, not discovered any kind of financial assistance for people in my situation. There is, of course, a disability tax credit for my parents, as my carers, but there is nothing that would enable me to live on my own. There is some financial assistance for those with disabilities to attend university, so if you're searching for a financial bursary in that direction, there are options. However, it is usually assumed that if it is impossible for you to work, then it is impossible for you to live on your own, and therefore, there is no financial assistance available.
As for health insurance, if you're part of a group plan, then I would guess that it's through work, which means you are well enough and able to work and you may be having less of a problem. As a youth, I believe that most would be under their parents' plan, but that can only last for so long. Once you're an adult, there does not seem to be a lot of options out there.
As youth with chronic illnesses, we are fairly rare, nor are we something that society wants to think about. Children becoming chronically ill and being sick for years is not a thought that most people even want to entertain. Sadly, instead, we are an under the radar group whose needs can get ignored.
Fortunately, most youth with CFS do recover, and with more research being done all the time and more awareness being gained, with any luck, a few years down the road, we may have more help and perhaps even a cure.
Links: ME/CFS & Youth:
A Pediatric Case Definition for Myalgic Encephalomyelitis
and Chronic Fatigue Syndrome.
The Accuracy of Parents' empathy for CFS adolescents (October 2006)
Several Pediatric articles - Journal of Chronic Fatigue Syndrome (September 2006)
Karnofsky Scale for measuring Energy Levels in CFS patients
Dr. David Bell, a CFS expert with youth. His Q & A on CFS.
Dr. David Bell, 13 year old with CFS - Does PT help?
Pediatric Network
- the only site to address strictly pediatric issues dealing with CFS, FM and Orthostatic Intolerance
Dr. David Bell, Tough Love: Helping an Adolescent Misdiagnosed With CFS
Dr. David Bell, Summary of 13-Year Follow-Up Study in Adolescent CFS
Dr. David Bell, How to Work With Your Doctor
Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for Psychiatrists
ME/CFS Clinical Guidelines for Medical Practitioners (24 pages)
A Guidebook By and For Young People with CFIDS (YPWCs)
Treating Pediatric CFS, by David S. Bell, MD, FAAP, for School Nurses
Young Writers' Club
Ten Points on Organizing Care for Children with ME
Helping Hands: A Researcher and a Mother Help Others Learn to Help YPWCs
What are the differences between adult and pediatric CFIDS?
Chronic Child Fatigue Likely To Be Genetic
What is CFIDS in Youth?
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