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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  thea wrote @

Agree with Jenni Saake above, also as someone who careens back and forth across that invisible/visible divide. I’ve found that a visible issue or assistance device can act to ‘prove’ to others that I am having more difficulty than they would otherwise realise – I don’t say that’s ‘right’ but it has made a difference on more than one occasion.

The flipside is NOT having others be distracted by my health issues when I don’t think it is relevant and has meant more options how I chose to navigate the situation when they are invisible problems.

NB the invisible aspects of my illnesses have helped me recognise I need to be more tolerant and patient of others than I used to thoughtlessly be – and that’s no bad thing too.

Thanks for your post.

  heidi wrote @

I too agree with her ihave major heart trouble most of thyroid out, fibromyalgia,myofasikcal pain nad multiple chemical senstivities, sjogerns which are invisible then my most visible is myNeurofibromatosis #1 covering evey inch of my body i alsohave them inside too which si invisiblenad causing pumonaryhypertension. all ofmineare invisible except for myNF.
My hubby of 35 yers has hada neck fusion walks with alimpand holds his lef thand like heh ad a stroke all due toa bad wreck back in 1966 so hisare all visiblenad people still lok at me including uor 30 yer old twin sons and thnk I am a, liar and even called me that to my face saying I am making ti all up cause they canot see it .IT does hurt.I use a cane some days nd some days ot now loking nto a walker with a seat toob ut Ihave both invisiblenad visible too. why me I donot question why but where can it lead.I wish we also wuld do a scond edition fothe mosaic moments mine is writen in highlited in too. bravo for Lisa so saying what is on all ur minds. heidi

  perpetualspiral wrote @

Thanks for this thought-provoking article. There are pros and cons to both visibility and invisibility in illness/disability, and I don’t think it’s really helpful to judge which is ‘better’. However I do agree that it is a great idea to recognize the good things about having invisible illness as well as create awareness of the bad.

Personally I have ME/CFS, Fibromyalgia and Myofascial Pain Syndrome and have struggled with Mental Illness all my life. I find that if I’m going to be in certain situations where I think it may be helpful, I take my cane. It is a lot easier to ask for a seat on public transporation when people have evidence of your fatigue/injury.

I have also learned from my experience not to so quickly judge others who may look fine. We have no idea what is going on inside of someone.

Growing up I struggled to hide my depression and anxiety so fiercely, but also despaired that no one could see how much I was hurting. It is the same now with my pain and fatigue. Even family seem to forget that I’m not able to do very much, and I have to patiently remind them, and then see them embarrassed because they don’t know how to face my suffering. It is a difficult, complex issue and we manage it the best we can šŸ™‚

  Bonnie the Web Designer wrote @

My husband is on dialysis after going into renal failure from a childhood kidney disease. He actually is challenged in the world of dialysis because he appears perfectly healthy. His kidneys did not shut down from diabetes, high blood pressure or a host of other illnesses where kidney failure is secondary, and often the person is very ill. While he loves that his illness is hidden, it’s also a struggle for him because the doctors say he looks so healthy he doesn’t need some of the meds that make him feel better from the low blood levels caused by kidney failure. But truly I think it’s more important for him to be as “normal” as possible, so being able to forget sometimes that he has a serious health condition really is a treat.

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