Sick and Tired of Being Sick and Tired

Strategies and alternatives for coping with fibromyalgia, bipolar disorder and other chronic illnesses

Give Your Pain a V.O.I.C.E. (Verification of Illness, Coping & Experience)

Posted by wendyburnett on April 19, 2010

The University of North Florida is doing a new study, researching personal experiences with chronic illness, including those without a diagnosis yet. According to their website:

“Our goal is to document and share the collective voices of those who endure the challenges of living with chronic physical symptoms. We seek honest and candid responses in an online survey from patients who personally know about the impacts of living with symptoms of illness. Your voice is vital to providing awareness and understanding, and to help establish issues that we need to address in medicine. This research taps into information that lab work and other technologies cannot reveal, relying on input from you for the advancement of science and understanding.

Physicians and other people in your life may not always see or understand your illness the way that you do. We hope to improve understanding by gathering firsthand information from people, like you, who are dealing with ongoing illness for which there is no known cure. We hope this information will help improve the lives and support of individuals who are affected by such illnesses.”

The study consists of four individual surveys, each or which takes about 15 to 20 minutes to complete, and covers an exhaustive list of illnesses (see the list at the end of the post for the choices), with an option to enter another illness if yours is not included. The format is multiple choice, with at least 4 options per question, and the ability to add or clarify information in text boxes at the end of each section.

This is a wonderful opportunity for all of us to help “normals” understand what life is like for us, and is set up so that we can easily complete it. The division into four individual surveys allows us to break it up, completing only as much as we can handle, and returning later to do another short survey if necessary.

I hope that everyone will participate in the VOICE study and spread the word, since the more participants there are the more useful the data will be.

The list of illnesses to choose from include (since the list doesn’t include every possible option, they’ve also included a choice of “Other” with a text box to fill out if your primary diagnosis is not on the list):

  • Adrenal Fatigue
  • Adrenal Insufficiency or Addison’s Disease
  • Allergic Rhinitis
  • ALS or Lou Gehrig’s Disease
  • Alzheimer’s Disease
  • Angina
  • Ankylosing Spondylitis
  • Arthritis
  • Asthma
  • Atypical Facial Pain
  • Atypical or Non-cardiac Chest Pain
  • Bell’s Palsy
  • Bronchiectasis
  • Bursitis
  • Cancer
  • Candidiasis
  • Cardiomyopathy
  • Carpal Tunnel Syndrome
  • Celiac Disease
  • Central Sensitivity Syndrome
  • Chronic Bronchitis
  • Chronic Brucellosis
  • Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)
  • Chronic Fatigue Syndrome (CFS)
  • Chronic Hepatitis
  • Chronic Low Back Pain
  • Chronic Lung Disease
  • Chronic Obstructive Airways Disease
  • Chronic Obstructive Pulmonary Disease (COPD)
  • Chronic Pain Syndrome
  • Chronic Pancreatitis
  • Chronic Pelvic Pain
  • Chronic Renal Failure
  • Chronic Sinusitis
  • Chronic Tonsilitis
  • Chronic Urinary Tract Infection
  • Chronic Whiplash Syndrome
  • Circulation Problems
  • Complex Regional Pain Syndrome (CRPS)
  • Coronary Artery Disease
  • Coronary Heart Disease
  • Crohn’s Disease
  • Cryoglobinaemia
  • Cumulative Trauma Disorder
  • Cyclic Vomiting Syndrome
  • Cystic Fibrosis
  • Da Costa’s Syndrome/ Soldier’s Heart
  • Dementia, including Alzheimer’s Disease
  • Dermatomyositis
  • Diabetes Mellitus
  • Diverticulitis
  • Dystonia
  • Eczema/Dermatitis
  • Ehlers Danlos Syndrome
  • Emphysema
  • Endometriosis
  • Environmental Illness or Electromagnetic Hypersensitivity
  • Epilepsy
  • Erythematosus
  • Fibroids
  • Fibromyalgia
  • Food allergies
  • Food sensitivities
  • Gastroenteritis
  • General Hypermobility Syndrome
  • Gerstmann Syndrome
  • Glaucoma
  • Globus Syndrome
  • Gout
  • Gulf War Syndrome
  • Haemophilia
  • Heartburn/Gastroesophageal Reflux Disease (GERD)
  • Hemorrhoids
  • Henoch-Schonlein
  • Hernia
  • Hypersensitivity Syndrome
  • Hypertension
  • Hyperthyroidism
  • Hyperventilation Syndrome
  • Hypoglycaemia
  • Hypothyroidism
  • Impotence
  • Inflammatory Bowel Disease
  • Insomnia
  • Interstitial Cystitis
  • Irritable Bowel Syndrome (IBS)
  • Kidney Disease
  • Liver Problems
  • Lupus
  • Lyme Disease
  • Macular Degenerative
  • Meniere’s Disease
  • Menopause
  • Mitral Valve Prolapse
  • Morgellons Disease
  • Motor Neuron Disease
  • Multiple Chemical Sensitivity
  • Multiple Sclerosis
  • Myasthenia Gravis
  • Myofascial Pain Syndrome
  • Myotonic Muscular Dystrophy
  • Narcolepsy
  • Neurasthenia
  • Noncardiac/Nonspecific Chest Pain
  • Nonulcer Dyspepsia
  • Osteoarthritis
  • Pancreatic Disease
  • Parkinson’s Disease
  • Pemiphigus
  • Peptic Ulcer
  • Peripheral Vascular Disease
  • Polio (myelitis)
  • Postpolio Syndrome
  • Post-Viral Fatigue Syndrome (PVFS)
  • Premenstrual Syndrome (PMS)
  • Prostate Enlargement
  • Pseudoseizures
  • Psoriasis
  • Purpura
  • Railway Spine
  • Repetition Stress/Strain Injury
  • Restless Leg Syndrome
  • Retinal Degenerative Diseases
  • Rheumatoid Arthritis
  • Rosacea
  • Scleroderma
  • Seizures
  • Shingles
  • Sick Building Syndrome
  • Silicone Breast Implant Effects
  • Sjorgren’s Disease
  • Sleep Apnea
  • Spondylitis
  • Stiff Person Syndrome
  • Systemic Lupus
  • Temporomandibular Dysfunction (TMJ)
  • Tension Headache
  • Tension Myositis Syndrome
  • Thrombocytopaenia
  • Upper Airway Resistance Syndrome
  • Urinary Tract Infections
  • Vasculitis
  • Vulvodynia
  • Wilson’s Thyroid Syndrome

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4 Responses to “Give Your Pain a V.O.I.C.E. (Verification of Illness, Coping & Experience)”

  1. […] This post was mentioned on Twitter by CronFitSyn. CronFitSyn said: Give Your Pain a V.O.I.C.E. (Verification of Illness, Coping … http://bit.ly/9RGzRN […]

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  3. Cynthia H said

    I checked out the site and responded to one of the surveys. I plan on responding to the others as well.
    I think it will be interesting to see the results of the study – and definitely hope that it will help others understand how life encompassing and transforming our challenges are.
    Thanks for sharing this!

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