Ask a Nurse: Invisible Illnesses

Pamela is an RN, MSN/Ed.

Pamela is a mother of 6 amazing children ages 11 to 24. She is a nurse educator and loves to travel overseas to work in medical clinics and teach health-related topics to schools and communities. She has been married to her best friend, Steve, for 29 years. She has many different interests including reading, writing (NOT arithmetic!), baking, teaching, and spending time with her family. She lives in central Pennsylvania with her husband and two youngest daughters.

 

Invisible Illnesses

(Dedicated to Dawn)

Have you ever seen someone park in a handicapped parking place and you didn’t think they looked handicapped? Did you judge them, thinking they were using their Grandmother’s car and were too lazy to park further, so they left the handicap tag up?
Some diseases and illnesses are not always apparent by just looking at someone. Here is a short list of some of them:

  • Arthritis
  • Fibromyalgia
  • Chronic Fatigue Syndrome
  • Multiple Sclerosis
  • Cancer
  • Migraines
  • Diabetes
  • Cardiomyopathy
  • Asthma
  • COPD

That person who looks pretty good to you may have trouble walking from their car to the store. They may be in terrible pain, be severely short of breath or have balance problems. I have a dear friend who has MS. She uses a cane (at least some of the time) and has learned to be creative in finding ways to overcome the limits her disability has thrown at her. She has found that using a fold-up stool to get in and out of bed, in the car or on her husband’s motorcycle has helped her to be able to function. If you or a loved one have an invisible illness, what do you do to make things easier?  

Many illnesses that are not visible require the person afflicted with it to take rest periods throughout the day. I, myself, have fibromyalgia. I have learned that I need to put my feet up and rest several times during the day or I will pay for it. As a Mom, I struggle with feeling guilty resting before I feel the need to. I have had days where I was on my feet all day and then as soon as I lay down; I got company. By that time I have to rest. Fibromyalgia, arthritis, and other illnesses like those will flare up without frequent rest periods. Your loved one may overdo it one day and have to take it easy for 3 days due to severe pain! They have to make hard decisions daily. Do I vacuum or sit on the floor for an hour playing with my child? Do I clean the house or save my energy for a date with my husband?

People who have invisible illnesses deal with people scoffing that they have anything wrong with them. Sometimes, even Doctors think they are “hysterical,” “emotional,” “faking it,” or a “wimp.”

It can take so much energy just dealing with an illness, to have to convince family, friends or doctors that there is something truly wrong can be overwhelming and depressing.

Did you know that 1 in 2 Americans have a chronic illness? (Bureau of the Census, Statistical Brief: Americans with Disabilities. (Publication SB/94-1).U.S. Department of Commerce (1997).)

Approximately 96% of people who live with an illness have an illness that is invisible. These people do not use a cane or any assistive device and may look perfectly healthy. (2002 US Census Bureau) Approximately 9 million Americans are cancer survivors (American cancer society) and may feel as though they have a chronic illness due to side effects of treatment or loss of function from the cancer.

Is having a chronic illness such a big deal? You may be surprised to know that the divorce rate among the chronically ill is over 75 percent (National Health Interview Survey). Depression is 15-20% higher for the chronically ill than for the average person (Rifkin, A. “Depression in Physically Ill Patients,” Postgraduate Medicine (9-92) 147-154), and various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides ( Mackenzie TB, Popkin MK: “Suicide in the medical patient.”. Intl J Psych in Med 17:3-22, 1987). More than 50% of these suicidal patients were under 35 years of age.

I really wanted to make you aware of invisible illnesses for a few reasons:


  • I hope you will remember this article the next time you see someone park in a handicapped who does not appear to have a disability. Remember that they may have a disease you cannot see.
  • I hope you will be more patient, kind and helpful to friends and family who have one of these diseases and you never thought they really had a problem.
  • Maybe this will encourage you to look for ways you can help someone you know with an invisible illness.

As one of my friends said,” I am not crazy, lazy, seeking medication or sympathy-I just HURT…almost every day, sometimes all day long. I just want people to see me as a person of worth who just happens to also have chronic pain and stiffness. I will be honest and tell you when I can’t do things. I want people to not get offended and know that I can’t control when I will have a bad pain day. I have to cancel plans a lot; please don’t cancel me as your friend.”

If you have any helpful tips for making life easier with a disability, write me at [email protected] I will post them in a future article. I’ll see you next week!


(Gentle) Hugs,

Nurse Pam

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Amee

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