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

To see all Ask a Nurse articles click here.

 




Comments

  1. Crystal says

    I love this post! I myself have Fibromyalgia and I think a lot of people should read this. They just don’t get that even if you look ok and are not that old there are still a lot of things you can’t do, even when you want to! Every week I see lots of great deals and freebies I can get with my coupons, but often I miss out on them from over doing it. When you over do it one day it can take a WEEK to come back.
    The best tips that I have for those of us with these illnesses is, know your LIMITS! Making that extra shopping trip to grab free soap will cost more in the long run. You also have to learn to let others do or help when they offer. I have always been a do it myself person so this is one that is hard for me, but it does help.

  2. Vanessa Man says

    Than, you for your article. I have had fibromialgya formthe last 10 years, and people always think I’m faking it when I can’t take the pain anymore. I don’t take anything for it, because I think I am so used to live with the pain that sometimes I can’t even remember what it feels to live without pain. I do not have a handicapped, but when I had foot surgery I had it for a few months. When I got out of the house, for the first time after they took the cast out, I was insulted by some woman, told how horrible I was for taking thenparking for somebody who needed it and using a tag that somebody else deserved it. I was not able to walk for more than a couple of minutes, before I had to go back to the car, butmyes, people do judge a lot without jnowing. Right now we are taking the kids to Disney World and we will probably endure a few looks and even comments because of the Guest Assistance Card. If only they had to deal with an autistic child every day they will not tslk or stare. But unfortunately people inly judge for what they live and see, not for the reality of everybody else’s life. Again, thank you for giving a,little information.

    • pamela jablonski says

      Thanks, Vanessa. You can get a handicapped tag for fibro, just ask your doctor. Mine offered during one of my bad flares. I have not used it in a long time, I will only use it when I really have to…but i am sure i got looks when I did. Have fun in Disney and hold your head high! :) Blessings to you!

  3. pamela jablonski says

    Crystal, thanks for commenting! It really is hard to stay to what you KNOW are your limits, but it sure helps, doesn’t it!? I have lost the chance at many a sale for the same reason! Blessings to you!

  4. Billie says

    A very good post, a great reminder not to judge people. Also, remember mental illnesses as invisible illnesses. I have OCD and anxiety, both of which no one could tell just by looking at me.

    • pamela jablonski says

      Billie, I totally forgot to add mental illnesses! Darn! I honestly meant to! I have depression which is common with other chronic illnesses, and I am very aware of issues relating to that! Look up my article under “ask a nurse” tab above, I wrote one called, “A Mother’s Secret Shame” which is about clinical depression. Blessings to you!

  5. Kayla says

    I suffer from chronic Lyme Disease and I have to say this post seriously made me cry! It feels so good being recognized and having this issue brought to light because I can’t tell you how many time I’ve gotten, “But you look fine,” or “Really? YOU’RE sick?”

    We DO have to become creative with the things we do on a daily basis. I can’t tell you how many times I’ve overdone it, just to set myself back for days or even weeks at a time!

    I can’t make plans in advance at all anymore because I don’t know how I’m going to be doing hour to hour let alone day to day.

    Thank you so very much for writing this article. It really means a lot and I hope it helps to educate people!

    • pamela jablonski says

      Thank you for your comment, Kayla. I didn’t mean to make you cry, but I understand sooo much, as I am living it, too. Sometimes I write out of my own anguish, and it feels good to hear when others understand your pain and suffering! Blessings to you!

  6. Roshina Loving says

    Thank you so much for this article. I suffer from herniated discs and degenerative discs as well as being manic…dealing with depression because of my back pain. My back hurts constantly and this nerve damage and sciatic is horrible. I was told to quit my job and have pain mgt. Quitting is not an option and pain pills is not an option with my line of work. You do learn your limitations, helpful tricks but some days none of this helps. I have seen some people laugh and point when I am bent over a basket just barely holding on to walk to do my shopping. I know they think it is because I am overweight but it is not. On my good days I can out do my children in walking through a store…lol! Sometimes I do go overboard when there is a good sale…and I do pay for it. I am just thankful for the good days and the days ahead. God bless you all!

    • pamela jablonski says

      Thanks for your comment, Roshina. I have done my grocery shopping bending over like that, too! I gained over 40 pounds after my diagnosis due to pain and depression. So, I hear ya! Many blessings to you, praying for more of those “better days” for all of us!

  7. Marie says

    Excellent Post! I have Lupus and Fibromyalgia, to most people I always look pretty healthy, but living day in and day out in constant,non stop pain takes it’s toll, without smart aleck remarks from people telling me I don’t LOOK sick. lol Thank you for the post!

    • pamela jablonski says

      You are welcome, Marie! There are a lot of us out there! This post has certainly struck a nerve with people! Blessings to you!

  8. Kimberly Conover Dickerson says

    Fabulous post! I am a Multiple Sclerosis, Fibro, and Arthritis fighter. I park in disabled parking spots, with my legal permit of course, and I get many nasty looks. It used to bother me but after awhile, I became immune. I am in constant pain and feel fatigued all of the time. When I mention this, a frequent response is “but you look so good” as if my appearance should somehow correlate to what I’m feeling inside?! Thank you for helping to spread awareness. It is much appreciated.

  9. Dawn says

    Nice article, Pam! Thank you. I just started taking a new med for auto immune disorders. Its supposed to have good results, is cheap $40 a month and has no side affects. I wanted to share with your readers as hoping to help someone else with an “imvisible illness”. It is called LDN, low dose naltrexone. I’ve been on this pill for three days and feel better already!

    • pamela jablonski says

      Thanks, Dawn! I hope that new med will help many others, too!Many blessings to you, my friend! :)

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