A blog about TRAPS (Tumor Necrosis Factor Receptor-Associated Periodic Syndrome), living life with an incurable illness and learning to live well.
Saturday, February 25, 2012
The 'What I Really Do Meme' for Chronic Illness
I thought it was quite clever and feel it's quite true. So please share onwards!
I had the misfortune of introducing myself to a web-forum for people planning events and was told that it wasn't going to be ok for me to talk about 1) body size and issues with and 2) my illness, as it wasn't part of planning and it might make people feel bad.
I couldn't quite believe my eyes.
I honestly had to reread it about 5 times and catch my breath to reply properly.
People living with disability have a hard enough time coping with the reality of their 'new' lives without having to insulate the rest of society from some uncomfortable feelings.
Part of living and accepting life with disability is being able to talk about it. Like any other healing process, talking about it is vital. My illness isn't who I am, but it makes up a huge proportion of my life, so I talk about it. It's not pleasant for me either. But, it's not my job to make sure people don't have uncomfortable reactions to it.
That's part of being a mature and empathetic person. I live my life with concern and respect for others, and people with a disability expect you to do so in return. I didn't whack people with my crutch while using it, so don't whack me with your complete and utter disregard for my being.
Both my knees are sore today and I'm in a severe and grumpy mood. We have 4 days left of summer (a very wet and cold summer) and I am not excited about the prospect of 9 months of gloom heading my way. This email I received just topped off my approaching gloom.
*** Obviously we need more disability awareness. When did it become MY job to protect YOU from YOUR feelings about MY illness? ***
About Me
- Jen
- I'm Jen and this is my blog. I'll take you through my diagnosis and life with an incurable illness. In 2008 I was diagnosed with Familial Mediterranean Fever but in July 2010 I was diagnosed with Tumour Necrosis Factor alpha Receptor Associated Periodic Syndrome. (google Familial Hibernian Fever) I'd really like to work as a fertility educator or an arthritis educator. I enjoy baking, trying to find 'good' Mexican food in NZ and my dream is to vacation in Tahiti. I'd trade money for Sleep, cats and warm weather.
Tumor necrosis factor receptor-associated periodic syndrome (TRAPS) is a rare multisystem genetic disorder characterized by unexplained periodic episodes or "attacks" of fever associated with additional symptoms including muscle pain (myalgia), abdominal pain, headaches and skin rashes. The specific symptoms can vary greatly from one person to another. The duration of the characteristic episodes can also vary, lasting anywhere from a couple days to one week to more than one month. Onset is usually during infancy or childhood. TRAPS is caused by mutations of the tumor necrosis factor receptor-1 (TNFR1) gene that encodes the 55-kDa receptor for TNF.
Labels
- ankylosing spondylitis (1)
- Answers (1)
- anxiety (2)
- Aserger's Syndrome (1)
- asperger's syndrome (3)
- attachment parenting (2)
- Autism (4)
- Baby Loss (3)
- Badger (1)
- Beluga (1)
- Blame (1)
- boobs (3)
- bottle feeding (1)
- carry on (1)
- cats (2)
- chemicals (1)
- Christmas (1)
- Chronic Illness (8)
- Chronic Illness Cat (2)
- chronic pain (4)
- cleaning (1)
- Co-Dependence (1)
- Colchicine (3)
- cooking (2)
- Depression (1)
- disability awareness (1)
- Doctors (4)
- dogs (1)
- domestic violence (1)
- drugs (5)
- dyslexia (1)
- eco (1)
- Eczema (1)
- Eeyore (1)
- FAIL (1)
- Failure (2)
- fall (1)
- Flare (2)
- gentle parenting (3)
- Grief (3)
- Guilt (3)
- halloween (1)
- Hedgehog (1)
- hip (2)
- Invisible Illness (11)
- Jen (3)
- Journey to Diagnosis (9)
- keep calm (1)
- Kidney (1)
- life (1)
- Loss (5)
- Mediband (1)
- medication (2)
- melatonin (1)
- memes (1)
- miscarriage (5)
- Miss S (4)
- MTX (1)
- neglect (1)
- Negotiating Pain (1)
- Notes to Doctors (5)
- October 15 (2)
- Optimism (1)
- Pain (10)
- parenting (1)
- Passing On (1)
- Pessimism (1)
- pills (1)
- Prednisone (5)
- pregnancy (1)
- public health system (3)
- Questions (2)
- Recovery (1)
- school (1)
- seroquel (1)
- song (1)
- Steroid (1)
- sticks (2)
- Survival Guide (1)
- tips (1)
- tired (1)
- transitions (1)
- TRAPS (3)
- twin loss (1)
- visible illness (2)
- wankers (1)
- weaning (1)
- xray (1)
- Yeti (1)
Start Here.
The Spoon Theory
* An Open Letter To Those Without Invisible Disability Or Chronic Illness
* You're Not Lazy, You're Sick
Lab Tests
* Autoimmune Disease Tests
* Autoimmune Labs 101
* Lab Tests Online (AU)
* University of Washington
* Pediatric Rheumatology
* ANA Test
* Autoimmune Lab Tests
* Laboratory Diagnosis
* Wrong Diagnosis
* Lab Tests Online
* Immco Diagnostics
Familial Hibernian Fever
* Wikipedia
* Traps
* In Children
* Patient Experiences
* NCBI
* The Cleveland Clinic
* Gene Dx
* Healthy Parent
* Q J Medical Journal
* British Medical Journal
* Anaesthetist.com
* NIAMS
* Wrong Diagnosis
* Cigna
* John Hopkins
* Arthritis Research
* TRAPS PDF
Familial Mediterranean Fever
* A good FMF Resource
* FMF -- Definitions
* Children's Health
* FMF from State University
Autoinflammatory Diseases
* British Medical Journal PDF
* Medscape
* NIH News
* Cell.com
* Autoinflammatory vs Autoimmune
Lupus
* Lupus UK
* Medicine Net
* Kid's Health
* Web MD
* UK Lupus
* Mayo Clinic
* Wikipedia
* Lupus Foundation of America
* Lupus Lab Results
Lyme Disease
* Igenex Lab -- Start Here
* Under Our Skin
* Diagnosis & Testing
* How to find a LLMD
* Finding a Doctor
* eHow.com Find a LLMD
* Lyme Disease Resource
* Linda's Lyme Disease Journal
Rheumatoid Arthritis
* Wikipedia
* Medicine Net
* Arthritis Foundation
* Mayo Clinic
* National Rheumatoid Arthritis Society
* WebMD
Still's Disease
* Still's Disease PDF
* International Still's Disease Foundation
* Medicine Net
* Wikipedia
* Mayo Clinic
* Medline Plus
* Arthritis Insight
* Arthritis Foundation
* About.com
Genetic Diseases
* Medicine Net
* Wikepedia
* Genomics
* Genetic Disease Foundation
* Medline Plus
Chronic Illness & Emotions
* Coping with Persistent Pain PDF
* Chronic Pain & Depression
* Managing Pain
* Chronic Illness Coach
* Cognition, Emotion & Chronic Illness
* Rest Ministries
* Living with Chronic Illness
* Understanding Emotions & Chronic Illness
* The Many Emotions of Chronic Arthritis
* Coping with Chronic Illness
* Illness & Anger
* Emotions of Chronic Fatigue
* Dealing with a Health Condition
* Emotions of Chronic Pain Management
* Experiencing & Expressing Emotions
* Self-Esteem for People with Disabilities
* Understanding & Treating Depression
* When is Anger a Problem?
* Expressing Anger?
* Overcoming Anger & Aggression
* Relaxaction
* Relaxation Audio Files
* How Counseling Helps
* Affirmations for Building Self-Esteem
* Understanding Emotional Responses
* Grief & Grieving
* Dr. Bob's Online Pamphlet Collection
Nutritional Support
* Anti-Inflammatory Herbs
Safety of Commonly Prescribed Drugs
* NSAIDs & Stomach Pain
Other Reads
* What is Heartbreak?
* Twin Loss NZ
* International Baby Lost Mother's Day
* The Pregnant Chicken
Memes
* Infertile Panda
* Chronic Illness Cat
Categories
- ankylosing spondylitis (1)
- Answers (1)
- anxiety (2)
- Aserger's Syndrome (1)
- asperger's syndrome (3)
- attachment parenting (2)
- Autism (4)
- Baby Loss (3)
- Badger (1)
- Beluga (1)
- Blame (1)
- boobs (3)
- bottle feeding (1)
- carry on (1)
- cats (2)
- chemicals (1)
- Christmas (1)
- Chronic Illness (8)
- Chronic Illness Cat (2)
- chronic pain (4)
- cleaning (1)
- Co-Dependence (1)
- Colchicine (3)
- cooking (2)
- Depression (1)
- disability awareness (1)
- Doctors (4)
- dogs (1)
- domestic violence (1)
- drugs (5)
- dyslexia (1)
- eco (1)
- Eczema (1)
- Eeyore (1)
- FAIL (1)
- Failure (2)
- fall (1)
- Flare (2)
- gentle parenting (3)
- Grief (3)
- Guilt (3)
- halloween (1)
- Hedgehog (1)
- hip (2)
- Invisible Illness (11)
- Jen (3)
- Journey to Diagnosis (9)
- keep calm (1)
- Kidney (1)
- life (1)
- Loss (5)
- Mediband (1)
- medication (2)
- melatonin (1)
- memes (1)
- miscarriage (5)
- Miss S (4)
- MTX (1)
- neglect (1)
- Negotiating Pain (1)
- Notes to Doctors (5)
- October 15 (2)
- Optimism (1)
- Pain (10)
- parenting (1)
- Passing On (1)
- Pessimism (1)
- pills (1)
- Prednisone (5)
- pregnancy (1)
- public health system (3)
- Questions (2)
- Recovery (1)
- school (1)
- seroquel (1)
- song (1)
- Steroid (1)
- sticks (2)
- Survival Guide (1)
- tips (1)
- tired (1)
- transitions (1)
- TRAPS (3)
- twin loss (1)
- visible illness (2)
- wankers (1)
- weaning (1)
- xray (1)
- Yeti (1)
Blog Archive
Blog Roll
- Be Careful What You Pray For
- Built in Birth Control
- Holy Pee Stick, Batman!
- Leaps of Faith
- Lupus Ranting
- Not Standing Stills Disease
- Recurrent Miscarriage
- Rheumatoid Arthritis Guy
- The Healing Plate
- The Post Divorce Chronicles
- the Stirrup Queen's Completely Anal List of Blogs That Proves That She Really Missed Her Calling as a Personal Organizer
- Understanding Invisible Illness
1 comments:
LOVE your honesty in this post. It should be so logical, 'it is not my responsibility to protect you from feeling uncomfortable about my illness'...and yet it's "impolite" for us to bring it up. Thanks for being frank, and withstanding the ignorance of certain people. Oh, and thanks for the picture & permission to share :)
Post a Comment