Chronic Illness Articles

July 16, 2009

You are Too Young to Be That Sick!

Typisches Röntgenbild einer Rheumatoiden Arthr...
Image via Wikipedia

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.

They quickly threw comments about such as “You’re too young to feel this bad!” Most people were confused about the difference between rheumatoid arthritis and typical degenerative arthritis that our grandparents may suffer from. They ignorantly said things like, “There is no way that you can have arthritis yet.” Those that did try to offer sympathy compared my fatigued and pain to their sports injuries. “Yeah, I have some arthritis in my knee from football. You just have to keep pushing through the pain.” It wasn’t unusual to see their comments accompanied by the wave of their hand or their 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 did my best to make well thought out decisions, each of them based on thorough research, some instinct, and of course, “worse case scenario” situations. So when I heard someone flippantly tell me, “You’re too young to be diagnosed with that illness” it felt like a slap to my intelligence. I recognized it as a passing ignorant comment, but it it my heart deep anyway. Did they assume that I was ignorant or that I too easily accepted the doctor’s diagnosis? They comments implied that I wasn’t being assertive enough and that I needed to go back to the doctor to get the “real” diagnosis (of an illness that could be cured in a few weeks with just a pill.) I couldn’t really be that sick, after all, because I “looked so good.”

Laurie Edwards, a woman who grew up with a chronic illness as a child is the author of ‘Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties,’ In her book she explains, “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 – fear, ignorance, intolerance, to name some.”

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.

Instant download of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen when you signup for HopeNotes invisible illness ezine at Rest Ministries. Lisa is the coordinator of Invisible Illness Awareness

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July 13, 2009

10 Reasons When it Makes Good Sense to Fire Your Doctor

Police Clipboard showing several compartments ...
Image via Wikipedia

by Lisa Copen

We will never find the perfect doctor, as they are all human and none of them are perfect. It comes as no surprise to most of us that they call their profession “the practice of medicine.” One of the leading causes of death and injury in the United States is medical mistakes.

The Institute of Medicine calculates that, due to medical mistakes, anywhere from 44,000 to 98,000 people actually die in hospitals in the U.S. each year. This is more than from motor vehicle accidents or breast cancer.

Regardless of whether you are generally healthy, or live with a chronic illness, you still need a physician you can trust. Though an occasional small mistake may occur, it is especially important that you have a doctor who is eager to be part of your medical team for both short-term and long-term treatment.

Are there some sure signs you shouldn’t listen to your doctor and you should seek a second opinion, or maybe even shop around for a new physician? Definitely!

1. Your doctor does not listen to all of your symptoms or ask questions about them. He is quick to write down his interpretation when you have not fully been able to explain yourself.

2. Your doctor is determined to prescribe medications that have just been approved by the F.D.A., even though you are hesitant about trying something new. He doesn’t explain what the medication will treat, and why it’s important for your condition. He doesn’t explain short or long term side effects or any plan to get you off of it. Promotional items for these medications are visible around the office, from notepads to clocks.

3. Your doctor seems to know a lesser amount of information about your condition that you do. You often feel like your appointments are just times when you show up and inform him of your well-being and what is new about your condition, and he takes notes.

4. Your doctor appears to lack confidence about his ability to care for you effectively, seldom giving you medical advice or directions. Instead, he seems to tell you to do whatever you believe is best or asks, “Well, what do you think we should do in this case?”

5. Your doctor is quick to order tests or procedures that could impact your current health or your chronic illness in a negative way. He forgets that intrusive procedures that may be minor for some people could cause set backs in your illness. The best physician always keeps your whole body and condition in mind, not just the part he specializes in.

6. Your doctor seems to give you that look like he is humoring you. When you describe something you read, or ask a question about a new treatment you have heard about, he looks at you with skepticism and a smile and then writes some notes. It feels condescending.

7. Your doctor isn’t open with you about the medical records he has kept about you. When you request copies of your records, he may be willing to fax them to another physician but seems to try to avoid you getting them into your hands. One reason it’s vital to be aware of what is in your medical records is in case you submit an application for disability aid at some time and social security disability review doctors wish to examine your records.

8. Your doctor is never available when you need him. When you have an emergency he cannot get you in for an appointment immediately. Your prescriptions aren’t refilled on time. He doesn’t call you back when you have an urgent situation and must page him.

9. Your doctor is doubtful that you are having the severity of pain that you describe to him. He is hesitant about prescribing you pain medication, even though your pain level justifies it and you have proven to be a responsible patient with your medications.

10. Your doctor is never open to consulting other medical professionals or faxing his notes over to your other physicians. He thinks he can solve all of your medical needs and feels threatened when you want to consult with another source, specialist, or someone else on your medical team.

A good doctor will listen to you as much as possible, take good notes, explain medications, and make you feel like you are part of your medical team in treating any conditions or symptoms you may have.

We may never find the perfect physician, and we may visit a few doctors who have been referred to us before we find the best fit for our medical needs and a good personality fit. But don’t sacrifice your well-being simply because you are afraid of hurting the feelings of a doctor by leaving him and seeking your care somewhere else.

Read Lisa’s newest book, Why Cant I Make People Understand? Order at Subscribe to a great weekly ezine HopeNotes and download free 200 Ways to Encourage a Chronically Ill Friend. And tune in to Lisa’s weekly podcast at Hope Endures Radio at the web site. Lots of support is available.

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July 10, 2009

7 Outdoor BBQ Planning Ideas When You Are Ill or Tired

The grill saga
Image by kristiewells via Flickr

Whether you plan to serve steaks or hot dogs, having friends over for an evening of fun in your backyard doesn’t have to be overwhelming. Just because you may have a chronic illness doesn’t mean you have to stop entertaining. Here are seven quick tips to entertaining outside without the fuss.

It’s fun to look at magazines that have perfect patios all prepared to entertain guests, but go easy on your self! Here are 7 quick ways to have a fun backyard BBQ bash.

[1] Invite your guests with an emailed invitation service online. It’s fast, you can send it out to everyone in minutes and they can respond immediately. They can leave a comment or see who else is coming. Another perk is that you can list any item that would be helpful for other people to bring and when they RSVP they can choose one or more. It doesn’t have to be just food either; it can be yard games (remember lawn darts?); extra chairs, special music on an ipod, or even paper plates.

[2] To clean up, focus on the outside. You can avoid people trekking through the front door if you put up solar-powered tiki torches and some twinkle lights, making a festive path along side the house. Toss any of your junk piles in the house to the back bedroom, spiffy up the kitchen and wipe down everything in the bathroom. Put out room fragrances that scent your house to smell like the beach, dim the lights and turn on a bunch of battery-powered tea lights. They are festive, but you don’t have to worry about flames anywhere.

[3] Bring the inside out. Pull out blankets, pillows, lamps with extension cords, and table cloths to make your deck or patio comforting. If you can do it easily, choose a theme.

[4] For food, decide what foods you could buy pre-made and then make them personalized. For example you can buy bulk potato salad or baked beans. Add chopped up celery, boiled eggs, and then sprinkle paprika on your potato salad. Add big pieces of bacon to your baked beans. For your meat, choose something simple where everyone doesn’t have to have it cooked their way. Ask a spouse or friend to grill, or grill in advance and warm it up on the grill at the end. You can also have an item like salmon. Wrap it in foil with herbs and oils and steam on the grill. Use some smoke-flavored wood chips to keep everyone drooling from the scent.

[5] Use paper plates and utensils. There are lots of bright colors at the dollar stores that will match your theme.

[6] Locate a teenager who wants to make $10 and let her be in charge of all the childrens entertainment. Set up the kids table and let them do some of their own activities, like making home-made ice cream and then having a toppings bar to choose from. Turn on the sprinkler or let them make a simple craft like sand art. If someone is feeling adventurous a treasure hunt prepared in advance is sure to be a hit with all ages.

[7] Skip fancy drinks, and provide a variety of sodas (don’t forget root beer and orange cream soda) and sparkling water. Have juice boxes for the kids. Throw a plastic table cloth over a wheel barrow or other bucket, dump in ice and arrange. Sit out a large self-serve container of unsweetened ice tea with some ice cubes pre-made with black berries and mint leaves inside for a fancy effect.

Lastly, don’t forget to sit and have a bit of conversation. Have fun! Don’t attempt to be the perfect hostess that no one sees. Relax and leave the clean up until the next day.

Lisa Copen is the founder of Invisible Chronic Illness Awareness Week held each year in Sept and featuring a 5-day virtual conference online. Follow II Week on Twitter for cool prizes and info. Blog about invisible illness on your site, be a featured guest blogger, meet others, read articles and lots more. Make a difference!

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