Is Living With Illness Choosing to Give In?

Lisa Copen

Nearly one in two people live with an illness, and most chronic illnesses are invisible. Conditions such as chronic fatigue syndrome to diabetes rarely have visual side effects that people can see. It creates a challenge for those who live with invisible daily chronic pain, symptoms, and side effects.

For example, though I look fine on the outside, I have lived with rheumatoid arthritis for 18 years. It has been degenerative, despite the best of medical treatments. Recent tests have revealed that I have shoulders that are so disintegrated it’s amazing they still work, knees full of pieces of bone and old blood clots, and osteoporosis.

I have started seeing a new rheumatologist who I hope will more aggressively treat my disease and slow down its progression. I am 42. I told my physician, “My son is 8. I need at least 10 more good years. What can I do to make this happen?”

Despite the detours, I have had the opportunity to build a nonprofit organization of nearly 15 years, to serve those who live with chronic illness, through a Christian foundation of faith. Although I believe God still heals today, He rarely does it according to our schedule. In the meantime, there is a strong need for friendship and support.

Between my family and ministry, I have ample reason to get up out of bed each day and not allow my illness to define me.

I have never given in and allowed it to consume me.

But because I do not enter marathons, audition for reality TV show contests on deserted islands, or sign up for karate class, some people assume I have.

“You’ve just given in to your illness,” I have heard from both strangers and friends. “You need to fight it more.” This is often followed by their specific advice on what I need to do to “fight it.”

What defines “giving in” to your illness? There are a variety of ways that people who do not have an illness define the actions of those who are ill.

1. We are not using the alternative treatment of product that they sell that will make it all go away.

My husband was recently berated by a friend’s wife, “We are so mad at you guys!”
“Why?” he asked.
“Because you won’t try the water!” she replied.
Honestly, I’ve done my research and if I am going to go with a marketing scheme that promotes health benefits for just $200+ a month, it will be the chocolate one. I mean, who doesn’t like chocolate?

2. We are seeking health assistance from doctors or medical specialists.

A friend on recently posted on a social network that he cured himself of a disease by ignoring the “mumbo jumbo of doctors” and asking his dad for advice. He claims he “never gave in.” In his eyes, because I am seeing a rheumatologist with “MD” behind his name, I have chosen to give in. No one cares that my rheumatologist happens to have his own clinic about specialized medicine, and that has written books on the alternative treatments he uses with patients, in addition to Western medicine.

3. We are pacing ourselves.

Chronic illness uses up a great deal of energy and only the one who lives within the body knows what they can and cannot do on particular days. Sometimes we have to give it our best guess and make a choice, not positive if an event will cause us to be tired for twelve hours or four days. When we choose to not attend an outing we’d planned on because we are in deep pain, we frequently hear, “Oh, you are just giving in to your illness. You are letting it control you.” No, we had to make a choice and we did. Healthy people will understand this when they reach about age 80.

4. We are not where someone wants us to be spiritually.

We all grieve, we question, and we sometimes get depressed, regardless of our faith. But if these emotions are noticed by others they are quick to offer the spiritual version of “Don’t worry, be happy.” We are told that we are allowing the sin in our lives to get the better of us and it’s causing our illness. We are not praying consistently, or hard enough, or in the right way. One man recently told me that I needed to try a particular alternative treatment (that he happened to sell) and if I did not, then it was obvious I was just giving in to my illness and really did not want to get well … and that God knew that!

5. We are not doing physical activities that we are expected to do.

If you watch well known magazines written specifically for those with certain illnesses, even they are guilty of featuring people who have the disease but are still able to do extreme physical activities. A person with rheumatoid arthritis may run a 25-mile marathon and are quoted saying, “I chose to never give up.” I have chosen to never give up either, but I am blessed to get my feet into extra-wide diabetic shoes and walk around the grocery store. My own limitations, or those of one who uses a wheelchair each day, is not something that is a measurement of determination or stubbornness about our disease.

Each person who live with a chronic illness knows the daily difficulties in finding a balance between living his life in the fullest way possible, and managing his disease effectively at the same time. There will be many times that our choices do not make sense to people around us. When we hold back from a new treatment or a fun outing, we will be told we are “giving in” and letting our illness define us. And when we take a chance and stretch ourselves, we will be told we are not thinking things through or considering the consequences or risks involved in our choice.

If you live with a chronic illness, only you are capable of making the wisest choice possible based on many factors. If you love someone with an illness, be cautious in sharing your opinion about his or her decisions. If you are genuinely concerned, instead of offering advice, ask questions, such as, “I know you must have given a lot of thought to your decision to (fill in your blank here.) What was it that persuaded you?”

About the Author: Lisa Copen is the author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend”, founder of National Invisible Chronic Illness Awareness Week and Rest Ministries. She is a sought-after speaker who brings joy, humor, and hope, to those who live with chronic illness, from her own 18-year journey with rheumatoid arthritis. This article was formerly featured at the Huffington Post where you can read 40 comments.

Popularity: 15% [?]

My Illness No Longer Controls Me

By: Carolyn Matheson, Master Certified Coach

Last Saturday a special friend was having a party and I really wanted to be fit enough to attend. To be able to enjoy good food and company and be able to laugh my head off.

I have lost count of the number of times I have said yes to friends and needed to cancel at the last minute. I recognize today that I have very limited energy and I must use it wisely. I rested the week before and was relieved to feel good the day of the party.

I have become very talented at putting concealing make up so I don’t look unwell. That of course has its downsides but on this day it was important for me to just feel ‘normal’. I had a wonderful time and treasured every minute I spent at the party.

As I look back over the last six years I can see that my life has followed the path it has meant to follow. I have a rare neurological condition for which there is no cure. Any medication I take just alleviates symptoms; today I don’t think of having this illness for a lifetime one day they may find a cure. I spend a week in hospital every 12 weeks but I don’t think about that until the day arrives. I do try and take each day as it comes.

It is taking time for me to heal, not just dealing with a physical illness, it is the emotional toll that is taking the time to acknowledge and work through in my own way. I have had to get used to a whole new way of living.

When I got sick I felt all my power had been stripped away from me. There are times when I have felt very lost. Doctors continue to provide me with all the medical care I need. I couldn’t ask for better doctors than I have right now.

What I found I needed was to make huge adjustments to all parts of my life. Has it been hard? Yes of course it has. I have struggled with my headspace; struggled to make changes. I have found it difficult to cope with everyday life.

I have had to make some different choices. They are just different. I am not grateful I got sick but I am now grateful for the different opportunities that have opened up in my life. My illness no longer controls me.
It is true that my illness has stripped me bare of everything I know today. I can now look back and truthfully say I have come through with so much more. I am still Carolyn but my whole approach to life is now different. I have integrated what I have learnt on the way as a coach with the emotional high and lows of a chronic illness.

Carolyn a Master Certified Coach and founder of People Work Best Ltd, has worked for 30 years with executives and their teams across the world. She now combines her extensive coaching experiences with writing about her own insights in how to deal with a long term and very disabling illness. It is her mission to empower one patient at a time to take charge of their health. As well as offering one to one coaching, Carolyn is also a professional speaker. Contact: carolyn@peopleworkbest.com; twitter @capcoach; blog www.carolynsmatheson.com

Related articles by Zemanta

• When Co-Workers are Chronically Ill Or Have Cancer: How To Support Them (invisibleillnessweek.com)
• Can You Still Be Friends If They Think You Are Faking Your Illness? (invisibleillnessweek.com)

Popularity: 6% [?]

Savoring the Privilege of Walking

By Ann Pietrangelo

Do you recognize disability when you see it?

Last week’s post [at Care2] about an able-bodied woman using a handicapped parking space, then suing over the ticket she received, resulted in spirited conversation in the comments section.

It’s an emotional topic for a lot of people, not the least of whom are those who have the legal right to use the specially marked spaces, but who have an invisible disability. Judgments are often made based on nothing more than appearance.

When a person with an invisible disability pulls into a handicapped parking space, even with the appropriate legal tags, they are apt to get stares, glares, and outright anger.

We can try to educate others to understand invisible illness, should the inspiration strike, but we should never apologize for needing or using a handicapped parking placard. We owe no explanations. It stings, but not everyone will get it or care. Such is life.

If you’ve ever observed a seemingly healthy person pull into a handicapped parking space and felt anger toward them, you might want to consider there might be more to the story… and thank your lucky stars for your good fortune.

It could be a heart condition, a neurological condition, or any of a long list of chronic illnesses that affect mobility. Appearances can be mighty deceiving. Not all disabilities require a wheelchair.

Rather than give up and lock themselves away, these folks choose to go out into the world. Bravo! The little extra help from a more convenient parking space makes that less daunting.

While you observe them walk from the parking space, you are not privy to the advance planning that allowed them to get this far on this day. You don’t see added burden when they find that a business has stairs, but no elevator; or a door too heavy to pull; or the long line at the register that will severely test their strength and stamina.

If you don’t need special parking, please don’t resent or judge those who do. It is called a privilege, but no one really wishes for health problems in order to get this privilege. No, people who need it would rather not. Trust me on that.

Daily life is can be a hassle, and wouldn’t it be great if we could all just pull up in the first spot in the lot and get to our business?

That we have the ability to walk and take care of our own errands… that we can climb the stairs and pull the door open and even hold it for the next person… that we do not need the handicapped parking spot… that is the true privilege.

I have relapsing/remitting multiple sclerosis, and with that comes constant change. Sometimes I can’t walk more than a few feet at a time, sometimes not at all; much of the time I can walk, and it is a glorious privilege, one I shall not squander or take for granted.

If you can walk without too much difficulty, if you do not require a handicapped parking placard, you are fortunate indeed.

Savor the privilege of walking.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a multiple sclerosis patient, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes.

This was originally posted on Care2.com and has been reprinted with the author’s permission. Follow Ann on and has been reprinted with the author’s permission. Follow Ann on Twitter @AnnPietrangelo

Related articles

• Ever Considered Leaving a NICE Note for Some Parking in the Handicapped Spot? (invisibleillnessweek.com)
• Parking officers blasted for using disabled spot (thestar.com)
• Just Imagine. . . Trying to Explain Daily Life to a Healthy Person (invisibleillnessweek.com)

Popularity: 4% [?]

Invisible Illness Week Joins American Pain Foundation to Endorse the Virtual March on Washington

September is Pain Awareness Month. Pain affects more Americans than diabetes, heart disease and cancer combined, and is a leading cause of disability in the United States. Yet, it remains woefully undertreated and misunderstood, resulting in needless suffering .

This September, the National Invisible Chronic Illness Awareness Week campaign is joining with the American Pain Foundation to endorse the Virtual March on Washington to raise awareness about the barriers to accessing appropriate and effective pain management and the desperate need to improve pain care for all Americans.

Go to www.painfoundation.org/virtualmarch to participate in the march.

Opportunities to engage include:  writing your legislator, watching condition specific videos, chatting with others affected by pain and adding your voice to the 10,000 Voices campaign. You can also use resources in the PAM Advocacy Toolkit to host an event in your local community or get tips and templates for writing a letter to the editor. Go to www.APFActionNetwork.org to see how. Tell YOUR story. Join us to create change!

Related articles by Zemanta

• Creating Pain Awareness Through Photography (invisibleillnessweek.com)
• Canada proudly hosts international pain experts at the World Congress on Pain (newswire.ca)
• Rest Ministries Sponsors Invisible Illness Week (chronicillnesspaindevotionals.wordpress.com)

Popularity: 5% [?]

Our Favorite Resources! Associations, Foundations, and More!

This is a list we put together with some of our favorite organizations. If you have one you would like added, leave a comment below and we will update the list soon.

(This collection of links is copyrighted. Please don’t copy and paste it to your web site.)

• Advocacy for Neuroacanthocytosis Patients http://www.naadvocacy.org/
• Advocacy for Patients with Chronic Illness, Inc http://www.advocacyforpatients.org/
• Agency for Healthcare Research and Quality www.ahrq.gov
• Alliance of State Pain Initiatives http://www.aspi.wisc.edu
• American Academy of Hospice and Palliative Medicine http://www.aahpm.org
• American Academy of Orthopaedic Surgeons http://www.aaos.org
• American Academy of Pain Management http://www.aapainmanage.org
• American Academy of Pain Medicine http://www.painmed.org
• American Arthritis Society http://www.americanarthritis.org
• American Autoimmune Related Diseases Association http://AARDA.org
• American Behcet’s Disease Association http://behcets.com
• American Cancer Society http://www.cancer.org/docroot/home/index.asp
• American Celiac Society http://www.williamshaffer.org/acs/about.htm
• American Chronic Pain Association http://www.theacpa.org
• American College of Physicians http://www.acofp.org
• American College of Rheumatology http://www.rheumatology.org
• American Diabetes Association http://www.diabetes.org
• American Fibromyalgia Syndrome Association http://www.afsafund.org
• American Geriatrics Society http://www.americangeriatricssociety.org
• American Headache Society http://americanheadachesociety.org
• American Lyme Disease Foundation http://www.aldf.com
• American Medical Association http://www.ama-assn.org
• American Osteopathic Association http://www.do-online.org
• American Pain Foundation http://www.painfoundation.org
• American Pain Society http://www.ampainsoc.org
• American Porphyria Foundation www.porphyriafoundation.com
• American Society of Anesthesiologists http://www.asahq.org
• American Society of Interventional Pain Physicians http://www.asipp.org
• American Society of Law, Medicine and Ethics http://www.aslme.org
• American Society of Physical Medicine and Rehabilitation http://www.aapmr.org
• American Society of Regional Pain Management http://www.asra.com
• Amputee Coalition of America http://www.amputee-coalition.org
• APS Foundation of America, Inc. http://www.apsfa.org
• Arthritis Foundation http://www.arthritis.org
• Association of Gastrointestinal Motility Disorders, Inc.http://www.agmd-gimotility.org/
• Association of Oncology Social Work http://www.aosw.org
• Autoimmune Information Network http://www.aininc.org
• BAMS http://www.bandagainstms.org
• Band Against MS-Clay Walker http://www.bandagainstms.org
• Band-Aids and Blackboards http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/
• Beyond Chronic Pain http://www.beyondchronicpain.com
• Board Certified.com directory of those board certified physicians who wish to present an elevated Internet presence to the patient community http://Board Certified.com
• Bridge Medical http://mederrors.com
• But You Don’t Look Sick http://butyoudontlooksick.com
• Caring Bridge http://caringbridge.org
• C-Cange (cancer focus) http://www.c-changetogether.org
• CFIDs Association of American http://www.cfids.org/
• Celiac Sprue Association http://csaceliacs.org
• Centers for Disease Control and Preventionhttp://www.cdc.gov
• Center for Medical Consumers www.medicalconsumers.org
• Crohn’s and Colitis Foundation www.ccfa.org
• Chron’s Adventure http://CrohnsAdventures.org
• ChronicBabe http://chronicababe.com
• Citizens for Patient Safety http://citizensforpatientsafety.org/
• Compassionate Friends – coping with death of child http://compassionatefriends.org
• Conquering Chiari http://www.conquerchiari.org
• ConsumerLab http://ConsumerLab.com
• Consumer Health Information Corporationwww.consumer-health.com
• Consumers Advancing Patient Safety (CAPS) www.patientsafety.org
• Empowered Patient Coalition http://empoweredpatientcoalition.org
• Diabetic Mommy http://www.diabeticmommy.com
• DiagKNOWsis http://www.diagknowsis.org/
• Digestive Disease National Coalition http://www.ddnc.org
• Disabled American Veterans http://www.dav.org
• Dysautonomia Foundation http://www.familialdysautonomia.org
• Dysautonomia Information Network http://www.dinet.org
• Dystonia Medical Research Foundation http://www.dystonia-foundation.org
  
• Ehler-Danlos National Foundation (connective tissue disorder) http://www.ednf.org
• Ehlers Danlos/Hypermobility Syndrome http://teens.hypermobility.org
• Every Patient’s Advocate – Trisha Torrey http://healthcarespeaker.org/
• Facial Pain Association http://fpa-support.org
• Fibromyalgia http://www.fmaware.org
• For Grace http://www.forgrace.org – Reflex Sympathetic Dystrophy
• Healing Well http://healingwell.com
• Health & Disability Advocates http://hdadvocates.org
• Health Grades http://www.healthgrades.com
• Hereditary Neuropathy with liability to Pressure Palsies http://www.hnpp.org
• Hospice Patients Alliancehttp://hospicepatients.org
• Hospice Foundation of America http://www.hospicefoundation.org
• IDEAS Kids – Intestinal Diseases http://ideaskids.com
• IDF: Immune Deficiency Foundation, www.primaryimmune.org
• IG Living Magazine – Immune Gobulin http://www.igliving.com
• Institute for Safe Medication Practices http://www.ismp.org/
• Intracranial Hypertension Research Foundation http://www.ihrfoundation.org
• Intercultural Cancer Council http://www.iccnetowork.org
• International Association for Hospice and Palliative Care http://www.hospicecare.com
• International Association for the Study of Pain http://www.iasp-pain.org
• International Foundation for Functional Gastrointestinal Disorders (IBS) http://www.aboutibs.org
• International Stills Disease Foundation http://stillsdisease.org
• InvisABLE Illness http://www.invisableillness.com/
• Invisible Disabilities Association http://ida.org
• Joni and Friends http://joniandfriends.org
• Lance Armstrong Foundation http://www.livestrong.org
• Life Without Limbs http://lifewithoutlimbs.org
• Lung Cancer Alliance http://www.lungcanceralliance.org
• Lung Transplant Foundation http://lungtransplantfoundation.org
• Lupus Foundation of America, Inc. http://www.lupus.org
• Magic Foundation www.magicfoundation.org
• Maryland Pain Initiative http://www.marylandpaininitiative.org
• Mayo Clinoic http://www.mayoclinic.com
• Mastocytosis Society http://www.tmsforacure.org/
• Medically Induced Trauma Support Services (MITSS) www.mitss.org
• Medicarehttp://www.medicare.gov/
• Medline Plus Health Informationhttp://medlineplus.gov/
• Medscape http://www.medscape.com/home
• Medwatch – the FDA Safety Information and Adverse Event Reporting Program http://www.fda.gov/medwatch/index.html
• Mental Health Ministries www.MentalHealthMinistries.net.
• Myasthenia Gravis Foundation of America http://www.myasthenia.org
• Mastocytosis Society www.tmsforacure.org
• National Alliance for Mental Illness http://nami.org
• National Coalition for Cancer Survivorship http://www.canceradvocacy.org
• National Comprehensive Cancer Network http://www.nccn.org
• National Family Caregivers Association http://www.nfcacares.org
• National Fibromyalgia Association http://www.fmaware.org
• National Headache Association http://www.headaches.org
• National Hospice and Palliative Care Organization http://www.nhpco.org
• National Institutes of Allergy and Infectious Diseases (NIAID) http://www3.niaid.nih.gov/topics/lymeDisease
• National Institute of Arthritis and Metabolic Diseases (NIAMD) http://www.niams.nih.gov
• National Institutes of Health (NIH)http://health.nih.gov/
• National Invisible Chronic Illness Awareness Week http://InvisibleIllnessWeek.com
• National Kidney Foundation http://www.kidney.org
• National Multiple Sclerosis Society http://www.nationalmssociety.org
• National Necrotizing Fasciitis Foundation http://www.nnff.org
• National Organization for Rare Disorders http://www.rarediseases.org
• National Ovarian Cancer Coalition http://www.ovarian.org
• National Pain Foundation http://www.nationalpainfoundation.org
• National Patient Advocate Foundation http://www.npaf.org
• National Prostate Cancer Coalition http://www.fightprostatecancer.org
• National Stroke Association http://www.stroke.org
• National Vulvodynia Association http://www.nva.org
• National Women’s Health Resource Center http://www.healthywomen.org
• Pain.com-for professionals and patients http://www.pain.com
• PainPathways.org http://www.painpathways.org
• Pain Relief Network http://painreliefnetwork.org
• PAINWeek http://www.painweek.org/
• Pancreatic Cancer Action Network http://www.pancan.org
• Partners Against Pain http://www.partnersagainstpain.com
• Patient Advocate Foundation http://www.patientadvocate.org
• Patients Like Me http://patientslikeme.com
• Pharmacy Checker http://PharmacyChecker.com
• Power of Pain Foundation http://www.powerofpain.org
• Power Over Your Pain http://www.poweroveryourpain.com
• Prevent Cancer Council http://www.preventcancer.org
• PSC Partners Seeking a Cure http://www.pscpartners.org/
• QuackWatch http://www.quackwatch.org
• Race Against Pain http://www.RaceAgainstPain.com
• Reflex Sympathetic Dystrophy Syndrome Association http://www.rsds.org
• Rest Ministries Chronic Illness Pain Support http://restministries.com
• Saracoma Foundation of America http://www.curesarcoma.org
• Sceptor Pain Foundation http://www.sceptor.org
• Scleroderma Foundation http://www.scleroderma.org/
• Sickel Cell Disease http://www.sicklecelldisease.org
• Spondylitis Association of America http://www.spondylitis.org/
• Susan G. Komen for the Cure http://www.komen.org
• Texas Pain Society http://texaspain.org
• The Leukemia & Lymphoma Society http://www.leukemia-lymphoma.org
• The National Foundation for the Treatment of Pain http://www.paincare.org
• The National Migraine Association http://www.migranes.org
• The National Pain Foundation http://www.nationalpainfoundation.org
• The Prostate Net http://www.prostate-online.org
• United Spinal Association http://www.unitedspinal.org/
• United States Bone and Joint Decade http://www.usbjd.org
• Voice 4 Patients information and resources for those who have been victimized by healthcare error http://www.voice4patients.com/
• WEGO Health Activists http://community.wegohealth.com/
• Wilson’s Disease Association http://www.wilsonsdisease.org/
• World Institute of Pain http://www.worldinstituteofpain.org

INTERNATIONAL________________

• Asociacion Argentina para el Estudio del Dolor http://www.aaedolor.org.ar
• Associazione Italiana per lo Studio del Dolore http://www.aisd.it
• Australian Pain Society http://www.apsoc.org.au/interest.html
• British Pain Society http://www.britishpainsociety.org/
• Canadian Pain Society http://www.canadianpaincoalition.ca
• Egyptian Pain Society http://www.egyptianpainsociety.org
• European Federation of IASP Chapters http://www.efic.org
• Turkish Society of Algology http://www.algoloji.org.tr

Related articles

• What Exactly Is A Chronic Illness And Who Defines It? (invisibleillnessweek.com)
• Creating Pain Awareness Through Photography (invisibleillnessweek.com)