You are Too Young to Be That Sick! Chronic Illness & Young Adults

by Lisa Copen

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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54 Ways You Say You Respond to “You look so good!”

“You look so good!”  Over 1200 of you took our survey last year (you can still take it here if you want) and you shared how you respond to this compliment that pulls at the heartstrings.

Sometimes you just have to respond… a smile doesn’t say all that you want to say, but one of the temptations is to use sarcasm in our response.

Most of us can say that it depends on who says it. We may be more likely to smile and say, “If only it were true!” to a friend who doesn’t really get it. To the person behind at us the grocery store who commented about our groceries, we are more likely to say something sarcastic since we don’t have to deal with repercussions of  a stressed relationship.

Just remember that our seemingly justifed bitter comments back at them can only alienate people more and it does nothing to create an awareness of invisible illness. But who of us doesn’t relate with wanting to say a few of these things on the list below?

The most telling comment I read was from a woman who simply said, “I wonder why they can’t see my pain in my eyes?” It’s a good reminder that though we sometimes think the world should accommodate our emotional needs, who around us is hurting for other reasons (divorce, loss of job, loss of loved one, etc.) and they are wondering about us, “Why can’t she see the pain in my eyes?”

Be sure to add your own at the bottom in the comments section!

1. I am hangin’ in there…
2. I am so blessed. God is so good.
3. Drugs are a wonderful thing
4. I have my good days and I have my bad days.
5. I clean up well.
6. I have my ‘good’ days….but this isn’t one of them!
7. Thanks, I wish I felt better.
8. That’s a perfect example of how you can never judge a book by it’s cover.
9. Thanks, but there are many aspects of MS which you don’t see … would you like to know more about it?
10. That’s what most people think since pain can’t be seen most of the time. Have you heard about Invisible Illness Week? It’s really helpful to let people now that most illness is invisible.
11. I’m trying to appreciate that fact. I know the day may come when I have to use a wheelchair or a cane, and my illness will be more visible.
12. You should be on the inside.
13. Thanks. I have more to be grateful for than I have to complain about – which means I have a LOT to be grateful for!
14. Well I guess I did good job on my makeup, because I am having a hard time to tell the truth.
15. …And that’s all that really matters, isn’t it?
16. Powder and paint, make you what you ain’t!
17. It took a lot of work to look like this.
18. It’s God shinning through me
19. It’s nice of you to think so, but you’re missing the pain and agony that I really am in.
20. And you look so wise. Looks can be deceiving though, huh?
21. I’m having a “good face” day.
22. Yeah. My kid thinks it’s cool I’m an ill person working under-cover!
23. I do a great job hiding how I really feel.My life is still very challenging and probably will always be, but I am hanging in there, keeping a positive faith, and gratitude as THE attitude. Thanks for their concern.
24. I’m trying my best to do well OVER my circumstances instead of being under them!
25. It’s up and down.
26. I’m still struggling, but it IS nice to have a day when I am able to pull myself together and make it out of the house!
27. I’m not complaining about my looks.
28. I’m very good at pretending.
29. Good, because if I looked like I feel it would scare you to death.
30. Actually, I still am really hurting…
31. I am 36 years old outside but 85 inside
32. Thank you. I’m on my way to the Oscars.
33. Thanks, I’m grateful for this good day.
34. Things aren’t always what they seem.
35. Praise God, I’m glad that he enables me to look so much better than I feel.
36. Thanks, that’s God’s joy shining through!
37. Have you ever heard of the spoon theory?
38. I am upright which is better the alternative
39. Thanks, want to swap bodies for a few days?
40. Thanks, I guess I am fortunate that I have an illness that can’t be seen.
41. Thanks. I like good days.
42. Want to step inside my skin?
43. It’s amazing what a shower can do. I guess I am all cried out for now
44. Thanks…I wish I felt it!
45. I’m not complaining about my looks.
46. I’m very good at pretending.
47. Looks can be deceiving (and smile)
48. Thank God for makeup!
49. Thank you for caring. I try to act like I feel better than I really do.
50. Thanks, I am trying to even though it will never go away. i just try to remember things could be worse.
51. I’d be great if it wasn’t for the pain.
52. I’d complain but who wants to listen.
53. If I can’t feel good, at least I am determined to look good!
54. I’m in good shape for the shape I am in!

What do you say? Or what would you say if you could say anything (keep it clean!)

* This list can be reprinted. Please add the following at the end:
This list is compliments of National Invisible Chronic Illness Awareness Week at www.invisbleillness.com, based on a survey of over 1200 respondents. Get involved in Invisible Illness Week each year during September, including our 5-day virtual conference online.

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Invisible Illness Week Comics

You may feel like crying, but instead, let’s laugh together! We have more in common than we know. You can make your own comic strip at Bit Strips. Be sure to email us a copy and we just may share it here!

You are free to copy and paste these to your own blog, site, etc. just be sure to link it back to www.invisibleillnessweek.com – Thanks!

More coming soon!

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Missed Opportunities to Serve Ill with Exercise Options

We just got home from my son’s karate graduation and there was a table display and representative from the new womens local health club. It opened maybe 6 months ago and they completely rebuilt the building (meaning, they have invested a lot of money, especially for these times.) Last week they put up a banner that said “Reduced rates: $49 a month.” I’m sure they owners are hurting financially.

I had actually looked up their web site about 3 months ago to see if they had any kind of classes like Tai Chi. I keep hearing about how this can be a good strength building form of exercise and it’s something anyone can do –even people in who are confined to a wheelchair. My rheumatologist has recommended it and I am desperate for some form of exercise. It’s this or the pool and let’s just say I am not buying a swimming suit right now.

I haven’t done my research on it yet–spiritually–so if anyone has some experience I’d love your comments below.

But anyway, I asked her this morning if they had anything like this that someone with very limited mobility could participate in.

No… they have a form of Tai Chi mixed with yoga, mixed with Pilates and if I couldn’t get down on the floor (which I cannot) then I wouldn’t be able to participate in 90% of the class.

“What a missed opportunity for them!” I told my husband later at breakfast. “If they had a stretching type of class for women with chronic fatigue syndrome, fibromyalgia, rheumatoid arthritis, etc. they could advertise that as a specialty. Women would come from 15 or 20 miles away. If they had an instructor with credentials, they could send out flyers to all the rheumatologists, the Arthritis Foundation, and likely get a lot of referrals.”

I think I will drop by their office later with some Invisible Illness Week brochures and give them my two-cents. I know it may be worth about two-cents, but it financial times like this it’s important to think beyond the box of how we do business, and for those of us with illness, we should remind them just how many people out here really do have chronic conditions.

The woman I spoke with tried to grasp what I was saying and she kindly gave me a 2-week freebie pass and said, “Well, when you are feeling better than come try us out.” I smiled and said, “I haven’t been able to sit down on the floor for over ten years, so I probably won’t be able to participate any time soon.”

But we can do more than just say, “No, thanks,” and turn our back and grumble about how people don’t get it right? We can show them our challenges, our numbers (how many of us there are!) and how by recognizing this fact they may even be able to corner the market on our business before anyone else!

Lisa

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“You Don’t Look Sick” Can Sting

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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Is “Dear Abby” Confused About Invisible Illness? Why Not Give People the Benefit of the Doubt Sometimes?

Oh, Abby! We need to talk. Two posts in one week that have to do with illness… and your responses were less than, well, I hate to say it, but educated. We don’t know if these women are really ill, but give them a little bit of the benefit of the doubt, could you?

Lisa
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My assistant recently brought these 2 “Dear Abby” letters to my attention — and Abby’s response. Needless to say, it made me a bit sad. We thought we would post our own comments and get some feedback from you!

Sometimes we wonder why our friends and family don’t understand. Is there any doubt when this is the kind of thing they read in their daily paper? They hear people spout off using words like, “psychosomatic quirks,” “textbook hypochondriac (who denies it, of course,”) “her hypochondria is so irritating,” “she lives to be sick. She is always in the emergency room for something.”

Abby’s responses aren’t much better: “she may have a complex emotional disorder rather than a physical illness,” “stop enabling her,” “every time you see her, tell her she looks TERRIBLE; you’ve never seen her look worse. It’s what she’s ‘dying’ to hear, and she’ll love you for it!”

ARGH!

Read my comments below the articles… and then WRITE DEAR ABBY about what it’s like to daily live with hearing “but you look so good” or “the stares you get from parking in a handicapped spot.”

And do me a favor? Mention National Invisible Chronic Illness Awareness Week… because everyone just needs to be a bit more AWARE… even Abby.

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