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

Reblog this post [with Zemanta]

June 2, 2009

5 Steps to Use Twitter as a Pain Log Tool

This article is free to reprint on your blog, ezine, web site, etc. Just leave everything “as is” including the resource box at the bottom. Thank you!

If chronic illness or pain is a part of your life, the odds are that at one point you have been requested by a physician to keep a log about your activities and pain levels, especially what led up to your pain being most intense. He may have suggested that you write down specific activities, your diet and exercise behaviors, and even your patterns of sleep.

If you have attempted to take this on and do it thoroughly, you know that it can be an overwhelming feeling to keep track of all of your activities and still maintain a sense of normal life. He can be extremely helpful, however, to you and your medical team, to have a written record of your activities, diet, etc. to help discover what is it is causing you the greatest pain. Was that extreme flare caused by a minor food allergy, the weather conditions, or that you were up all night with friends?

It is somewhat ironic that while we may find it a burdensome task to record what we are eating, who we are with, how much we slept, and how we are feeling, millions of people are doing this daily on Twitter. They write what they ate for lunch, if they have a migraine, and if they are up at 2 a.m. working. . . and they call it fun!

If you have a chronic illness, Twitter can be an amazing tool to use as a pain diary. This social networking tool has been successfully used to help people maintain logs on their diet, exercise, and even the commitment to stop smoking. Why should we not use it to keep accurate records of our chronic illness and pain levels?

Here are 5 steps to put this into place:

[1] Create an account at Twitter just for your chronic pain logs. If you already have a Twitter account, make a new one, and let it remain private. If you look under “settings” you will see the option to make your account private, meaning that you will have to approve any followers before anyone can see your Twitter account. Since this is private medical information, we recommend not approving anyone. If you are already Twittering this can seem a bit strange because you typically want to increase the number of followers.

[2] You are now ready to start writing your posts. You cannot write more than 140 characters, however, this keeps it a simple task and not too overwhelming. Feel free to use it in any way necessary, for example, submitting more than one post to describe a special circumstance. You can send posts from your cell phone, not just from the computer, so set up this option in your account to make the most of it.

[3] If you don’t know where to start, begin by posting about any major events or behaviors that are not part of your typical day, and how your body responded to them. For example, if you awake feeling horrible, ask yourself has the weather change significantly? Twitter the weather. Are you taking the same amount of medication as you typically do? Were you active or solitary yesterday? Post whatever information may be valuable to you and your medical team at any right in your treatment.

[4] Before you go to a doctor’s appointment, log on to your Twitter account and print out the posts if your doctor would like acopy. Highlight any major changes in your patterns of pain.

[5] If you already use twitter for personal or business reasons, consider using a service that will post to more than one account at a time so that you are regular tweets that share where you are and what you are doing can also post to your twitter chronic pain log without any additional effort.

The market for Twitter applications will continue to grow and there is no doubt that’s those considering medical Web 2.0 tools will come up with some fancy (and complicated) ways to record your pain levels. But for now you can have a thorough log of your chronic illness and pain levels in just minutes at no cost. You can’t beat that!

Lisa Copen is the founder of Invisible Illness Awareness Week held annually in Sept and featuring a free 5-day virtual conference w/ 20 seminars w/ 20 speakers. Follow II Week on Twitter for 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!

Reblog this post [with Zemanta]

Create a free website or blog at WordPress.com.