The Ministry of Lisa Copen

Lisa Copen, Founder of Rest Ministries which serves the chronically ill, shares about mothering, illness, ministry and more.

I Don’t Feel Lucky That My Illness is Invisible, But Am I?

handOftentimes we only see the negative side of living with an illness that invisible to most people. But as time progresses, so does my own illness, rheumatoid arthritis. I can now see that there are advantages to having an illness that can be hidden or revealed, based on one’s own desires or certain circumstances.

I rarely see the changes in my own body, such as my hands or feet deformities, unless I see a reflection in the mirror, for example when I am trying to clothes in a dressing room at a store.

I’ve heard children ask their mom, “What is wrong with her feet?” as they’ve looked under the divider from a nearby dressing room. I can’t help but wonder how people don’t realize I have some sort of illness when they see my hands and fingers.

In the documentary about Farrah Fawcett’s journey with cancer, her son made a comment like, “I know she will be okay. She just looks so good.”

Those of us with invisible illnesses were likely yelling at the television because we too have heard, “But you don’t look sick.” But it was true. There were days when she did look like the blond bombshell we all remember from the posters. But there were many other days when she looked like someone fighting for her life.

There is no doubt it can be frustrating to look healthy when you are feeling like you have the flu times ten. And yet, if we were to really be honest, do we want to look as bad as we actually feel?

There truly are some benefits to having a disease that isn’t immediately noticed by everyone you come into contact with. Lets take a second look at a few of those perks.

[1] You get to choose who to reveal your illness to and who not to. Some people you may immediately confide in; others you may wait and see if they feel “safe.” Some people you may never tell about your illness.

[2] You can avoid unwanted advice. When your illness is visible, even the person in line at the grocery store feels the burden to share the latest cure for your condition or tell you what you should be eating. With an invisible illness, no one knows and offers comments unless you choose to mention it. And then you chose to open up that whole can of worms.

[3] You can do you job without preconceived ideas about what you can and cannot do. At some point you decide who to reveal your disease to, but if you are doing your job successful, you may be able to keep it personal for years.

[4] You aren’t on the receiving end of pity or sympathy stares. People who use assistive devices like a cane or wheelchair, or who have a visible illness, must learn to not care what other people (both friends and strangers) may think when they see them shaking, or struggling to walk.

[5] You can fake it! If you want to just forget your illness and go out for a night with friends, no one has to know how much medication you took just to be able to go out. You don’t have to explain why you aren’t dancing. It can seem like your life is constantly controlled by your illness, but ultimately, you still can choose to put on some fun clothes pretend to be healthy and carefree for a few hours.

Living with an invisible illness, or what some call a hidden or invisible disability, can have plenty of negative aspects and this article does not attempt to belittle them. However, to truly live life to the fullest, we must count our blessings.

Some days the simple miracle of being able to look healthy despite feeling terrible is worth acknowledging and accepting it for what it is.

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  Debbie wrote @

Most of the time I am thankful that I don’t look anything like I feel. I think I would rather look healthy and have an illness to deal with, than to look like there is something wrong with me on top of having to deal with my illness. It would be something extra to have to deal with. Although I suppose there are moments when people don’t have any understanding about my illness and when looking sick might help, on the whole I am very grateful that I look “ok”.

  Dee Russell wrote @

Lisa, My ex-husband, Fred Russell, whom I still
loved very much passed away June 17th, (last month).
He was only 57 years young but was diagnosed just
6 months ago with MDS (a type of leukemia). He
went into U.A.B. Hospital for a bone marrrow transplant. He was in there for well over 6 weeks.
The last time I spoke with him on Friday, 6/12, he told
me he would probably be comnig home in about 3 wks. On Sunday, 6/14, his body went crazy and his
organs started shutting down. Within three days, he
met Jesus. Our daughter, Rachel Elizabeth, just
turned 19 on July 8. She had lived with her Dad since
he divorced me when she was 12. Shorty following
the divorce, I was diagnosed with Avascular Necroses, Fibromyalgia, Neuropathy, and Osteo-
arthritis so I couldn’t physically nor financially take
care of her. Therefore she has had nothing to do with
me for over 3 years. She said her Grandma, (Fred’s
Mother), told herthat she did not need to be over her around a “drug addict”!!! Everytime I talk to Fred’s Mother, she “always” brings up the fact that i : “NEED TO GETOFF OF ALL THOSE DRUGS!” Even some of MY ownfamily tells me the same thing almost everytiime I seethem. Has anyone else encountered this problem?
In Jesus, Dee

  Patients for a Moment #3 « DUNCAN CROSS wrote @

[…] Lisa at the Chronic Illness Support Blog has been a leader in the online patient community, organizing the annual “National Invisible Chronic Illness Awareness Week”. She posts, “I don’t feel lucky that my illness is invisible – but am I?” […]

  Aviva wrote @

You’ve given me something to think about. Thank you!!

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