At the age of twenty-four, a thousand miles away from my family, living in a new city, I was diagnosed with rheumatoid arthritis. Over a period of four weeks and about eight doctor’s visits, I finally found a physician who listened to me explain my symptoms and in less than two days I had a diagnosis.
Despite the terms “chronic” and “forever” I felt relieved to know the label that described my chronic pain. Few of my friends, however, shared my enthusiasm for a diagnosis. The managers at my office were more concerned about the fact that I wasn’t wearing heels to work anymore, making me look less professional.
“Encouragement” was quickly tossed around, like “You’re too young to feel so badly!” Rheumatoid arthritis was only something that could be related to the aches and pains their grandparents suffered from and a hot water bottle made it go away. They’d laugh and say, “You can’t have arthritis yet!” Those who attempted to sympathize, compared my weary body to a sports injury they had. “I have a touch of arthritis on my knee cap from football in college. It’s not fun when the rain comes, but you just have to keep pushing and not think about it.” Even well-intentioned words were enhanced by the brush off of a hand or even rolling eyes.
When you are faced with a chronic illness in your twenties, all of the typical decisions you should be making are quickly put on hold. Up until now, you were considering what kind of education to pursue, your career aspirations, relationships, and even where you will live. All these are put aside, however, as you are forced to make immediate decisions that impact the rest of your life.
Things like how well you accept (or do not) accept the diagnosis of your condition, which medications to try, when side effects are worth the risk and when they are not, and how to find the right physician. While friends are deciding which party to go to we’re at home trying to make sense out of our latest lab test results, weighing our options for alternative treatments, and deciding to have a good cry or just go to bed and hold back the tears one more night.
I tried to make each decision based on thorough research, a bit of instinct, and “worse case scenario” situations. So when I heard someone facetiously say, “You’re too young to have that illness” it felt like a slap in the face; as if they assumed I was too gullible to fight the doctor’s diagnosis and get “right one” that could be cured with a simple pill. I had to be incorrectly diagnosed, they assumed, because, after all, I “looked so good.”
Laurie Edwards, author of ‘Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties,’ says, “However infuriating and irrational such comments are, they only have the power to define or validate our conditions if we allow that to happen. There are all sorts of reasons why people find it easy to scorn or deny illness, especially in younger people who ‘should’ look and act healthy.”
The ambush of advertising for prescription medicines has given the general public a small education on the fact that illnesses like rheumatoid arthritis and fibromyalgia are legitimate diseases. However, with this education, comes the feeling that everyone is an expert and their assumptions about various diseases are now based on what one sees in those same commercials. For example, people with disabling illnesses can somehow be miraculously playing tennis or doing a marathon. While it’s true that a very small percentage of people may go into remission, or those just diagnosed may have favorable results, most of us are happy if we can get out of bed, get dressed and drive a car. These commercials neglect to inform people that though an illness can be controlled somewhat, the person may still be in significant daily pain.
With each chronic illness, most of which are invisible, people will doubt that your illnesses impacts your life as significantly as it does. If you are in your twenties or thirties, they will be even less likely to understand that feeling better requires much more than a good attitude or a little bit of exercise.
Lisa Copen is the founder of Rest Ministries and National Invisible Chronic illness Awareness Week, as well as the author of Why Can’t I Make People Understand? Chronic illness doesn’t have to be depressing! Subscribe to receive daily emailed encouragement from the largest Christian outreach for people with illness. Don’t miss Rest Ministries great books and gifts we’ve selected for people coping with illness.
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- Where Do I ‘Belong’ When I Live With Chronic Illness? (chronicillnesspaindevotionals.wordpress.com)
- Rest Ministries Sponsors Invisible Illness Week (chronicillnesspaindevotionals.wordpress.com)
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We’re Tweeting these for 20 days!
Thank you for tweeting any of them any time! Oftentimes people are told what not to say. This is a great help in giving them an idea of what to say! Feel free to add your own ideas in the comments below. We’d love to hear them!
http://ow.ly/h2tL Things TO SAY to an ill person #1 I don’t know what to say, but I care about you #iiwk10
http://ow.ly/h2tL Things TO SAY to an ill person #2 I’m going to the grocery, what can I get you? #iiwk10
http://ow.ly/h2tL Things TO SAY to an ill person #3 Do you just need to vent? I’m all ears! #iiwk10
http://ow.ly/h2tL Things TO SAY to an ill person #4 If you need a good cry, I’ve got plenty of tissues and a shoulder #iiwk10
http://ow.ly/h2tL Things TO SAY to an ill person #5 I really admire how you are handling this. I know its difficult. #iiwk10
http://ow.ly/h2tL Things TO SAY to an ill person #6 I’m bringing dinner Thursday. Do you want lasagna or chicken? #iiwk10
http://ow.ly/h2tL Things TO SAY to an ill person #7 Can I get your kids 4 a playdate? My kids R bored. #iiwk10
http://ow.ly/h2tL Things TO SAY to an ill person #8 I cant sit still. Got any laundry I can fold? #iiwk10
http://ow.ly/h2tL -Things TO SAY to an ill person #9 What can I pray 4 you about that no one else is praying 4? #iiwk10
http://ow.ly/h2tL Things TO SAY to an ill person #10 Can I bring a few friends over 2 clean your house fast? #iiwk10
http://ow.ly/h2tL Things TO SAY to an ill person #11 I don’t have any idea what U R feeling, but I will always listen #iiwk10
http://ow.ly/h2tL Things TO SAY to an ill person #12 I saw these flowers & thought they’d cheer you 2day #iiwk10
http://ow.ly/h2tL Things TO SAY to an ill person #13 How can our church encourage those with chronic illness? #iiwk10
http://ow.ly/h2tL Things TO SAY to an ill person #14 Tell me what it is really like to be you for a day #iiwk10
http://ow.ly/h2tL Things TO SAY to an ill person #15 I made too much dinner for our family. Can I bring U some? #iiwk10
http://ow.ly/h2tL Things TO SAY to an ill person #16 U R amazing. How has your illness given you appreciation 4 life? #iiwk10
http://ow.ly/h2tL Things TO SAY to an ill person #17 Do U want me 2 come over while U wait 4 test results? #iiwk10
http://ow.ly/h2tL Things TO SAY to an ill person #18 U listen 2 me better than any other friend. Thanks #iiwk10
http://ow.ly/h2tL Things TO SAY to an ill person #19 I have Monday free if you need me 2 run some errands or take you #iiwk10
http://ow.ly/h2tL Things TO SAY to an ill person #20 – Tell me about this God who gets U thru 1 more day? #iiwk10
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It is a general rule of polite society to inquire how another person is feeling. Sometimes this is a formality, asked but not wanting an answer. Lately, I find myself selectively answering some people, “I’m just fine.” When I know I am bothered by the muscular and bone aches. Those who I know best get the more accurate, truthful version.
I know God doesn’t want us to lie about something as vital as our chronic illnesses. Also, I don’t want anyone’s pity or be thought as one wanting attention I felt guilty when I realized I was telling fibs to half the people I see.
Several years ago, I went through a prolonged time of emotional stress. I couldn’t share with my friends because it was very personal. I found myself saying, “Thank you” to those who inquired about how I was.
The phrase caught a lot of people off guard. For those who would ask, “What does that mean?” I told those people. The two words were verbal shorthand usually conveying three options for them to decide which applied.
1.) Thank you, but I can’t talk about it.
2.) Thank you, but we don’t have enough time to go into it.
3.) Thank you for asking. I need your prayers.
As we learn to cope with these unseen ailments, we can become either better or bitter. As for me, I want to be thought of for my good habits and nice deeds I have been able to do and not for the grumbling.
I found a scripture that tells me how I can answer King David wrote a poem to God. “Let the words of my mouth and the meditation of my heart be pleasing in your sight, O, Lord, my Rock and, my King]” (Psalm 19:4)
Sometimes, I can honestly say I am doing better. Other times, I answer with doing okay. But then, I am still not being honest with the other person or with myself. I might, for a while, revert to replying to those who inquire about my well-being with those two small words, “Thank you.”
National Invisible Chronic Illness Awareness Week is… necessary, very necessary.
Cecelia first experienced arthritis-like symptoms when she was 22. That next winter, she took a nasty fall on ice and injured her lower spine. Her most recent round of invisible illness caused her to retire earlier than she intended. It was only in Sept. 2008 that she was diagnosed. Visit her web site here.
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The first story (snippet) is an excerpt from a story I am working on (indefinitely- LOL) and although you may not understand why I’m starting off with this… um- it’ll come to you pretty soon. [wink]
“Wilson! For the last time- will you be quiet?” Harmon was simply at his wits end. If that dog didn’t stop barking and yelping he would possibly kill that animal. Well, he wouldn’t kill him. He loved Wilson and enjoyed his company- especially during the last few years. But can’t a man get some sleep around here? Harmon’s thought were interrupted when once again the night was filled with angry barks and growls and was that dog actually howling?
Please! Thought Wilson, as he whined and paced back and forth in the Kitchen. Not knowing what else to do, the small black terrier-mix ran to his owner and stood up on his hind legs and whined louder- more intently while pressing his front paws against his Master’s legs, begging Harmon to pay attention to what he was trying to tell him.
“Stop, Wilson. Get down” was his only response. It’s not that his owner, Harmon was a bad man or unloving towards Wilson. Since the day he arrived, Harmon has always been loving and playful with him.
Even after the Misses went away, Harmon seemed to need and want Wilson around even more. But tonight when Wilson heard, no- felt- sensed that there was urgency… danger outside, Harmon was not happy that he’d been awaken and did not understand the seriousness of the situation.
“Wilson-” Harmon’s voice became gentler, calming “I’ve looked outside, I’ve checked every window- heck, I’ve been in every room in the house. There is nothing going on. No one is outside.” Harmon bent over and picked up his little friend, despite the pups protests and started for the upstairs bedroom.
“Now come on, Boy. You can sleep with me and we’ll have a nice breakfast in the morning.” Wilson enjoyed sharing Harmon’s breakfast with him and hoped that breakfast really would take place in the morning. But as his owner stroked his head and ears, continuing toward the bedroom… away from the outside presence- Wilson knew he was right and that his owner probably should have listened to him.
Sitting in the small, white and confining room Joy felt as if every hope, every longing to be well hinged on this one visit. You’re being foolish, she thought to herself. This isn’t the first time and it most likely won’t be the last. True- she had been to several physicians prior to this one, but maybe- just maybe he’s the one.
Just sitting there, waiting was causing so much pain. Joy shifted her weight on the chair, trying to find a more comfortable position. Why, she thought, do doctors who treat patients in pain have the most uncomfortable waiting chairs in the world? As the door opened, she jumped- feeling a little guilty about the chair thought and then was simply thankful that mental observations and complaints were silent!
“Well, how are we doing today?” Such a simple and rhetorical question. Every doctor she had ever visited started the visit out the same way: how are we doing today? How do you answer that? Fine? Okay? Not good?
Is this question part of the visit or a social formality to be quickly gotten out of the way? If she said good or okay- wouldn’t that just be a lie? Do you really get lie-bumps on your tongue when you, uh- lie? Joy opted for an escapism. “Well…” was all she said, hoping he would take it from there and solve all of her problems.
Flipping the medical chart open and thumbing through the thick stack of paperwork, it seemed as if the doctor were reading it for the first time. “So,” he began, sitting down on the little stool with wheels and scooting closer, “What can we do for you today?”
Good grief, Joy thought and answered slowly, tentatively. “You had me go for a full work-up of tests and scans and I’m here for the follow-up.” Holding her breath she waited for the answer- or answers- or at least something to validate or explain the pains and problems and issues she’d been dealing with for so long now. What will he say, she thought to herself. Please, please let him say he knows what’s wrong with me.
“Well, the good news is we didn’t find anything abnormal with any of the images and your blood work was fine. What’s your main complaint?”
Joy screamed- loud inwardly. Why, why won’t anyone believe me- there is something wrong. I was fine- healthy for years and active and now can hardly move!
Just staring at him and holding back the tears that threatened to expose how hurt and frustrated she was was all she could do. Not waiting for a response, the doctor opened the folder again and said, “We could try changing your Anti-depressant or we have room to increase your Vicodin some more. Is there anything else I can do for you?”
The second story is really a compilation of several visits- one just as horrifying as the previous but it occurred to me last night that the part of the story I’m working on was the perfect analogy of what so many people (including me) go through when what they are suffering with or experiencing can’t be seen on an x-ray or under a microscope.
I’m not going to tell you what happens in the story with Harmon and Wilson. [LOL] Don’t ask me. I will say they are only a small part of the novel I’m writing and ‘hope’ it will be finished, um- never mind; I don’t know when!
But Wilson’s dilemma in trying to make Harmon understand that there really is something wrong- whether or not he sees, hears or knows it- it’s real.
My dilemma, along with many other men and women is that we know- know that something is not right, something is wrong within our physical body… but no one can see it yet; no one can find what it is yet; no one has been able to help us yet. What is the purpose of this entry? Perhaps it’s to create an awareness for the term Invisible Illness.
Maybe it’s to spark some interest in more research to finding answers for what is causing the symptoms; and not just label the mystery health issues as chronic pain. Or it simply could be a way for me to vent, release and heal myself of the day-to-day abuse of living with severe pain and health problems.
Maybe it’s just me hoping that someone, somewhere will listen and believe me and not just pat me on the head, up the dose and send me to bed and promise me breakfast… like the dog.
Invisible Illness Awareness Week is September 14-20, 2009. What can you and I do to help make more people more informed and understand the issues, problems and uncertainties surrounding it?
National Invisible Chronic Illness Awareness Week is probably the single most important issue in my life currently. It is important of raising the level of information and understanding of the problems when living with an unseen adversary and its effects. If it sounds like I am making this matter seem as if it is life and death- it is because for me… it just may be.
Joy lives in a small town in the Midwest, USA. She and her husband have three adopted children whom they home school. Prior to becoming ill, Joy was the System Admin for the local library full-time and part-time worked and volunteered at the local Homeless Shelter/Food Pantry.
When not teaching the children, Joy spends her time blogging about her continued journey to wellness and writing fiction, painting and enjoying the world of The Sims 3. On days she is not physically able to participate in hobbies- she is comforted and encouraged by God’s Word, her family and her fur-babies: a pack of Bichon Frise.
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Each day I receive a list of people who have blogged about their invisible illnesses and I’m still surprised at the number of people who hear the words “You don’t look sick” and write about how it feels to hear this well-meaning, but still stinging words.
Here are some people who, like you, “don’t look sick.”
You ask me if I’m sick?! Where do you get that from? I’m not sick. I have never been sick. And I will never be sick. Not in the way you ment it. All that happened, is that I have got an issue with my balance, a balance disorder. Or no, not really. I have got no issues whatsoever with whatsoever. Actually balance has got an issue with me. JudyDonnelly.com
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I have an invisible illness. For years I was told that it was “all in my head” and quite honestly, I was beginning to believe them! Family members, friends and medical professionals would hear my symptoms and tell me I was just stressed, or maybe I was making things up for attention, the tests even said that “nothing” was wrong. Of course, that was because they were testing for the wrong thing.
While my husband is an absolutely wonderful man, he does not get sick, or at least not in the way I do. His cure for a headache would be to go outside and be in the sun or work out. That works for him. It doesn’t for me.
At various points over the last eight years I have thought I was going nuts. I had been diagnosed with a slew of varying things, yet the medication I was given never really took care of everything I was feeling. I had been told maybe I have breast cancer or heart disease – let me tell you it was a thrill to take and pay for the tests… Yuck. “Just put her on Prozac!” Not!
I tried medication the doctors told me I should have – some that the side effects were worse than you could imagine. I tried Chiropractic, Mechanical Link, exercises, self-hypnosis, you name it. Then, when it would not work, the professionals would say “It’s all in your head!” If I heard one more person tell me that my aches and pains were “just stress” I think I would SCREAM!
Dizzy, leg cramps, migraines, joint pain, mood swings, heart palpitations, sleep apnea, fatigue, occasional loss of vision, chronic back pain, distraction, easy bruising, nausea, short term memory loss, and symptoms that are too personal to mention on a public blog are all a part of my life. But really, does anyone want to hear that stuff when they ask you how you are? To make it worse, weight gain of over 65 pounds. “Come on Stephanie – don’t you think you could just cut out the sweets?” I guess I figured that when I gained 10 pounds over night, it probably was not the sweets I ate!
This past December I was taken to the ER because they thought I was having a stroke. I was dizzy, had a migraine and could not see at all out of my right eye. We were there all night, my husband, my 6-year-old and me. Cat Scans and then a couple MRIs of my head (and a few tests I don’t even remember what they were) later, the ER doc came in and nonchalantly told me that I was not having a stroke, but they did have an “accidental significant find.”
An “accidental significant find?” What the heck is that? “Oh, you have a tumor,” and then out the door he went. Like it was no big deal! The nurse came back in and gave me some pain medicine and sent me on my way telling me that I would need to see a neurosurgeon later.
What I later learned is that I have a pituitary tumor. 1 in 5 people in the world have this kind of tumor and many live with a similar story to mine. In fact, 25% of tumors are found during an autopsy!
You see, the pituitary is a really tiny gland – the size of a pea – that is at the base of your brain. This teeny-tiny gland is the controller of the body. Just like the thermostat in your home will sometimes tell the air conditioner to kick on and sometimes will tell the furnace turn on. The pituitary controls the other parts of the body that create hormones. A tumor in this location can cause a rather wide range of weird reactions.
I’m sometimes scared about what comes next, but at least I know that it IS in my head quite literally and I am NOT crazy. Knowing that gives me the power to figure out next steps. I know what I am battling now.
When people look at me, they don’t know any of what I have just shared. In fact, this is the first time I have ever shared in this way, but I think it is important for others to know.
I work with so many clients that struggle with invisible chronic illness. Attention Deficit, Migraines, Depression, Fibromyalgia, and more. These clients are not lazy. They are living life with challenges that most can’t or don’t see. Many times, they are brilliant people that have to make compensations in order to function in daily life.
National Invisible Chronic Illness Awareness Week is important because there are so many people that struggle every day and with even a little support and understanding they could have a renewal of their spirit.
Stephanie LH Calahan is a dynamic entrepreneur, nationally known speaker, media personality, author, publisher; productivity/organization consultant, and business start-up coach. As the founder and CEO of Calahan Solutions, Inc., she and her consultants focus on conducting presentations, personal coaching, assessments and organizing services for people that want help with time, space and information.
Stephanie, as a productivity and organization consultant, is giving donating about 15 free 30 minute telephone consultation about issues you are experiencing around time, space and information. Check our prizes page for details.
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