This article is free to be reprinted, but it must be left “as is” including the footer at the end. Thank you for sharing it!
You’re Too Young to Be That Sick!
By Lisa Copen
I was twenty-four years old, enthusiastically living in new city, finding my independence, careers, and following my heart when I became disabled in a period days and was eventually diagnosed with rheumatoid arthritis. It only took about four weeks, but with two visits to doctors a week, explaining my significant pain, it felt much longer. Eventually I found a wonderful doctor of internal medicine who asked me about fifty questions. In about two days I had a diagnosis.
As with many people, having specific terms like “chronic” and “forever” attached to a painful condition can simultaneously create emotions of fear and relief. At least something describes the chronic pain. There were not many friends, however, that understood or participated in my enthusiasm for a diagnosis. And the office managers at my place of work were not concerned about my pain level, but rather about when I would be able to get back into some heels to keep the office looking 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.
A diagnosis in your twenties throws off all the typical decisions one is making. Your twenties should be about deciding on an education, a career, relationships, and where you will live. Suddenly, most of these choices are put on hold. Instead decisions are about how you accept (or do not) accept the diagnosis, what medications to take, what the risk of side effects are worth it, and how to locate the right doctor. We learn how to decipher lab results, what alternative treatments to try and when to have a good cry versus when to just bite your lip.
As I tried to make each decision based on careful research, instinct, and “worse case scenario” situation, hearing someone flippantly say, “You’re too young to have that illness” felt like a slap in the face. Though a simple comment, my heart felt it deep, as if they assumed I was too ignorant or accepting of the doctor’s diagnosis. They implied that I needed to be more assertive and get a the “real” diagnosis of an illness that could be cured in a few weeks with a pill. After all, I couldn’t really be that sick, because 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 saturation of advertisements on television and in magazine for prescription medications has helped legitimize some illness, such as rheumatoid arthritis and fibromyalgia. There are downsides, however. For example, everyone considers her self an expert on the, plus they make their assumptions about how well the drugs work based on the ads. The advertisements show people with debilitating illnesses (healthy models, actually) who are astonishingly now able to water ski or join their kids on 300-foot water slides. While a certain percentage of people may experience remission, the majority of us are happy to be able to get up out of bed without assistance, get dressed, and drive to the grocery store. Ads and commercials fail to alert people that though an illness may be temporarily controlled, they are usually associated with immense daily chronic pain.
With any chronic illness, most of which are invisible illnesses, there will be people who will be skeptical about how much your life is impacted by your condition. When you cope with an illness while in your twenties or thirties, and you “look healthy” they will have even more hurdles to jump over to get the fact that for you to feel better requires more than an attitude adjustment or a daily walking regimen.
Get an instant download of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen when you subscribe to HopeNotes invisible illness ezine at Rest Ministries. Lisa is the coordinator of National Invisible Chronic Illness Awareness Week held annually in September.Read Full Post | Make a Comment ( 10 so far )
Everyone I have ever met with chronic illness has a desperate need to be understood, believed, cared for and cared about. This is especially true when the illness is invisible to everyone else, except for those moments when some physical evidence shows up, like a rash.
Since it is not possible to show everyone the rashes, which have a nasty way of waiting until no one else is around anyway, the only thing left to do is to become your own best friend. I am serious about this.
First, have a list of things you would love for someone to do for you. For example, I wish someone would make me a pot of tea, play some music I love and listen to me, really listen to me. Well, today I am going to be that friend for myself. The tea is ready, Beethoven is pouring out of the speakers, and I am prepared to listen to myself – as a true friend would do. That means I have to be critical in a surgical way, a nurse to myself.
Since listening would give me the giggles, and interrupt Beethoven, I will write my comments to myself and then step in as a friend. For example, I feel that nothing nice has been done for me or has happened to me for a long time. My friend side responds, it is a quote I love but cannot recall who said it, “Really, think of all the things you did NOT want that did not happen to you!
Take a moment to be grateful for that. Then think of all you do have, besides the tea and music. And, if you were honest instead of feeling sorry for yourself, you would think of [someone else - do you have a name of someone YOU know?] who is suffering right this minute and needs tea, music and friendship more than you do. Why don’t you go and see to that person?”
Somehow, the minute you are able to put your mind and heart on the needs of someone else, even if their pain or problem is less than yours, your own pain is reduced. It is as though there is only so much hurt that can enter and you displace some of your own when you feel another’s.
Please try this; it is so simple but it has never failed me. Yes, first see to you: Do what you can to bring yourself a smile, a moment of pleasure, and then invite in that critical friend to remind you that while you may be in hell, you do not have to stay there – that story of the starving people whose hands were secured in front of them so they were unable to reach the food they had been served, the whole table of people described as hell; then one person reaches across and puts food in another’s mouth and the table is now heaven.
National Invisible Chronic Illness Awareness Week is a moment of hope for the ill to better learn how to live with chronic illness.
Leslie Royce is a 72-year-old retired Philadelphian who lives in the center of Philadelphia in spite of MCS. She does this in order to be part of her children’s lives, and in order to be available to those who need help and encouragement. She knows how lucky she is to be alive and therefore the theme of her life is celebrate. Read, write, celebrate, and share is how she survives.Read Full Post | Make a Comment ( 4 so far )
SAN DIEGO- SEPT 2008- One of the most challenging parts of living with a chronic illness is that it’s just so daily! This week is National Invisible Chronic Illness Awareness Week, September 8-14, and they are offering twenty free online seminars hosted by some of the leading illness experts that can help you cope better with life issues. People of all faiths are welcome to attend; a few of the “coping” workshops, however, have Christian authors who turn to the Bible as their foundation for truly understanding how to best cope with daily pain and illness. These include:
· Stress-Busters that Work: Faithful and Fun Ways to Lessen Stress and Encourage Hope and Health will be presented by Maureen Pratt, well-known author of Peace in the Storm: Meditations of Chronic Pain and Illness. For more than ten years, Maureen has written and spoken about health, prayer, faith, and living with chronic illness and pain. She has also lived most of her life “in the trenches” as a patient who has a number of illnesses. (Monday, 3 p.m. pacific)
· Dealing with Hurt Feelings and Mixed Up Emotions will be discussed with Leslie Vernick, a counselor who focuses on improving one’s relationships with others, God and self, teaching people how to address conflict, speak the truth in love, handle adversity in a God-centered way and negotiate through difficult and destructive relationships with biblical principles. Her most recent book is The Emotionally Destructive Relationship. (Monday, 12 p.m., pacific)
· Medications, Illness, Fertility and the Desire for Motherhood will be presented by Jennifer Saake, author of Hannah’s Hope. Jennifer has lived 18 years of illness, with infertility for 10 of those years. Balancing both conditions includes: medication side effects (illness meds on fertility and fertility meds on illness), questioning sanity of wanting desperately to have children yet fearing how she would care for them when she can hardly care for herself, facing the frustration of attempting adoption when her health makes her less “marketable.” (Tuesday, 12 p.m. pacific)
All seminars will be featured live via Blog Talk Radio for forty-five minutes, with questions from callers taken the last fifteen minutes. See dates and times for additional seminars at www.invisibleillness.com, which will be recorded and archived.
Many guests have donated free items or services, which will be given away in prize drawings. Bloggers are invited to participate by blogging on invisible illness topics September 8-12, 2008 and to download the “I’m blogging for Invisible Illness Awareness” badge from http://www.invisbleillnessblog.com .
National Invisible Chronic Illness Awareness Week was launched in 2002 by Lisa Copen, author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.” It is held annually in September and is sponsored by Rest Ministries, Inc., the largest Christian organization that serve the chronically ill.
###Read Full Post | Make a Comment ( None so far )
This past June our daughter got married. It was a beautiful wedding and of course I cried. Now imagine planning a wedding for 200 guests that is predominantly gluten-free. What’s gluten-free you ask?
Three years ago our daughter was diagnosed with an invisible illness called Celiac Disease. One year later another 4 of us were also diagnosed. Today there are 7 of us in our family that have Celiac Disease. This plunged all of us into an unknown world of new foods and diets. We got a crash course in all things gluten-free.
Celiac is an auto-immune illness that prevents the absorption of wheat, rye, barley and sometimes oats. I had no idea that these offending grains could have such an impact and that they were in just about everything!
Imagine having to giving up your favorite bread, pasta, cookies, pastries, processed meats, salad dressings, ice-cream cones, cereal, soy sauce – well you get the point.
I used to wonder why people stood and read labels at the grocery store. “Just buy it already!” was the thought that popped into my head. Well… guess what? I’m now a label reader myself. Who knew that even bacon could have hidden glutens or soup in a can or even salad dressings of all things. But it’s true – we all read labels now.
Some people in our family get sicker than others if they’ve accidentally ingested gluten. Take for instance my oldest daughter; she gets violently sick for days. My brother on the other hand doesn’t really experience any symptoms so it’s much harder for him to stick to a regimented diet. Me, I just really gassy, bloated and the odd time have diarrhea – kind of like a flu.
So back to the wedding, what did we serve?
We managed to have an amazing stuffed chicken dinner complete with gravy and steamed veggies. The buns of course were not gluten-free but we managed to score some really great pavlova for dessert for our gluten-free members. Once the dance began we brought out a huge 32″ tower of fruit, some gluten-free and regular desserts. For a really cool alternative to serving all you can drink alcohol we served all you can drink espressos, lattes and cappuccinos.
It’s not easy eating gluten-free, especially when you travel. I have to bring a suit-case full of my own food just so I can be sure I have something to eat when we get to our destination. Airports can also be tricky. But like I have told my kids who are all celiac’s you can either manage your disease or let the disease manage you.
National Invisible Chronic Illness Awareness Week is fabulous! Someone you know, maybe even your best friend may have an invisible disease.
Betsy Hiebert lives in Winnipeg, Manitoba. She is married to Bruce and has three kids and a dog. Her oldest two are married while the third just graduated grade 12. Her passions include: family, the cottage, traveling, gardening, golfing and volunteering.
Medical trauma, conditions and illnesses have had a way of creeping into Betsy’s life in various forms over the years. Her own health concerns taught her quickly how to talk to doctors and get the answers she needed. She has acted as a patient advocate on behalf of her father and more recently for one of her girls. Numerous trips to specialists and Toronto Western Hospital have created a good basis of medical knowledge and understanding.
Author of the Personal Healthcare Journal, available at www.mycarenecessities.comRead Full Post | Make a Comment ( 3 so far )
I was at a red light for over 2 minutes last night, and I looked at the license plate on the in front of me. It just had the car dealership’s name. This must be one of the BEST forms of free advertising taken advantage of out there, right? Because how many of us take the 2.2 minutes (I nearly timed myself last week) to put a new license plate frame on our car?
I was so excited to think about all the people stuck behind me yesterday who saw my new license plate frame!
One of the new lines in commercials these days is “What’s in your wallet?” We ask you… “What’s on your car?”
Here are some of our favorite items for our cars to increase awareness!
These license plates turned out GREAT! They are white with printed colors in black and then a thick glossy plastic – type coating. They should last a long time!
If you’re the bumper sticker kind of person, these are simple and too the point. And a nice touch for when someone wonders why you are parking in a disabled spot but “look just fine.”
Also a nice bumper sticker from one of our past years, but it doesn’t have a date so is still just dandy!
Would you rather have a static cling on the back of your car? This one is cute enough with a roller coaster logo to get your viewpoint (“help a friend hold on”) about living with invisible illness across.
Just in case you want a bit of inspiration as you’re driving down the road, check out these scripture cards you stick in your dashboard and they reflect up onto the window. We love them!Read Full Post | Make a Comment ( 2 so far )
- Change your signature file for the next month in your email program
- Post well-written press releases [here is an example] about your story on some of the free press release web sites and send them to your local paper too! Some freebie sites include: Express Press Release; PR Log; EWorld Wire; PR Insider; or for $10 Press Release 1-888 is a good one
- Contact the communities you’re involved in online about invisible illness week
- Pass out brochures at your local doctors office waiting room, therapy office, support group, pool, church, everywhere!
- Put up your “I’m blogging for invisible this week” badge on your web site
- Set up a resource table with your brochures, bracelets, etc. at your local support group meeting, church ministry fair etc.
If you’re interested in being a guest blogger, submit your blog, bio, photo (optional) and answer the question, “Why I think National Invisible Chronic Illness Awareness Week is (worth celebrating)(important)(necessary)(helpful), etc.”
We also request that you include the words “invisible illness” and “chronic illness” at least once in your article so that we can reach more people with the search engines.
Thank you to all our guest bloggers! We hope you will visit their sites and learn from their shared experience.Read Full Post | Make a Comment ( None so far )