Chronic Illness Articles

March 27, 2009

Invisible Illness and Friends Who Don’t Get It: What to Do

by Lisa Copen

friends-women1If you live with an invisible illness, you may find the emotions of coping with people’s doubts about it can be harder to manage than the disease itself. Most of us with a chronic illness must eventually accept our condition. In order to live our best life, we need to educate ourselves about the disease and make well-researched decisions about treatment.

But we have no control over our loved ones when they choose not to accept our illness, or sometimes even acknowledge it. Their skepticism can last a lifetime and damage our self-worth and many relationships.

So, how do you cope with someone you love and care about won’t acknowledge the significance of your disease or even your illness at all? Here are four steps:

1. Go with it. Your life feels very serious right now, but don’t take your situation too seriously when around your friend. Unfortunately there is not a magical talk you can have that will make him instantly change his mind about your health situation. Most likely, the only way for him to rethink his perception of your illness is for him to observe you and your typical activities. Though your illness may be invisible, he may start to witness some visible symptoms. Perhaps you may have some new limitations, like being unable to walk a long distance; and rather than explaining what you can and cannot do, he might just see it.

2. Grow with it. Use this as a time to reflect on your own perceptions of people. When you are standing in line at the store and become irritated because “Surely no one here knows how hard it is just for me to stand!” think twice. Nearly 1 in 2 people in the USA have a chronic illness and about 96% of it is invisible, so the odds are that someone in line likely is experiencing the same chronic pain and fatigue. Also, what situations are your friends experiencing that you don’t understand? A child with a disability, the affair of a spouse, the loss of a job-all are life-altering and the odds are that your friends could use your empathy and support during this time.

3. Get over it. It is easy to obsess over the fact that no one understands what your daily chronic pain is like. Save yourself a lot of grief and don’t do it. We would all like a loved one to be able to slip inside are skin for twenty-four hours, but this level of understanding of our disease will never occur. If you began to resent people who don’t understand, soon all your friendships will be tainted. Do not take a friend’s lack of empathy personally, even though it feels personal. You cannot change someone’s mind; you can only control your own behavior, so make certain you have conversations that you won’t regret.

4. Get on with it. No material things in this world can replace relationships you have. If a loved one doesn’t acknowledge your illness, it’s true that the depth of your friendship will never be what it could be. But if the relationship is healthy in other ways, and one worth saving, you can keep it.

The odds are, at some point in your friend’s life, a health issue will occur and suddenly he will have a glimpse into what your life is like. Allow him to feel comfortable coming to you for support and encouragement and don’t use the opportunity to say, “I told you so.”

Go with it. Grow with it. Get over it. Get on with it.

Relationships with those who don’t understand the seriousness of your illness can exist. Be positive, accepting him for what he’s able to give to the relationship, and have reasonable expectations. Someday, this may prove to be one of your most special friendships.

This article is by Lisa Copen and can be reprinted at no cost, if you leave everything exactly “as is” including this footer. Get a free download of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen when you sign up to receive HopeNotes, Rest Ministries weekly ezine. Also be sure to check out Hope Endures, Rest Ministries weekly radio program every Tues and National Invisible Chronic Illness Awareness Week.

If you Twitter, be sure to check out Illness Twitters.

March 20, 2009

Minister to the Chronically Ill: 20 Ways in 20 Minutes

by Lisa Copen

girl-hug-bearRest Ministries, the largest Christian organization that serves the chronically ill, recently did a poll, asking “List some of the programs or resources a church could offer to make it more inviting comfortable” Below is a sampling of the 800+ responses.

1. Send out encouraging emails.

2. Make sure the handicapped stalls in the restroom are functioning and clean.

3. Add padded chairs or cushions to make church easier to sit through. Room for wheelchairs is always a need and don’t forget to include extra places for family members.

4. An open attitude for a support group like HopeKeepers. It would make me feel very special that there was an understanding of needs that are not always visible.

5. More disabled parking, even if they are temporary spots.

6. Educate the ushers that people arriving late may have difficulty walking or getting out of cars and will need some assistance.

7. Have a couple of people who could call chronically ill folks and check on them when they can’t make it to church.

8. When suppers are given, I need help getting my meal or at least understanding from others that I won’t be able to wait in a long line.

9. Be cautious when hugging. It may topple over or hurt a person.

10. Video tape of the service for DVD, don’t just do a live web cast. My computer doesn’t work that well.

11. Make sure that the church doors aren’t too difficult to open or at least have mechanical assistance if they’re unusually heavy.

12. Please don’t tell me that if I really believed and had faith I would be healed by now. And don’t insist how wonderful I look, because I know for a fact that I look terrible and miserable that day.

13. Offer me ways to serve within the church that can be performed regularly, but not on a set schedule. I still want to contribute, but I need some flexibility so that I can do a job when I feel well enough to do so.

14. Provide sermon notes in case I can’t make it to the worship service and want to listen/take notes later.

15. Acknowledge National Invisible Chronic Illness Awareness Week. Rest Ministries has a book list of top 100 Christian books for the chronically ill. Having some of those books in our church bookstore as a display would be a great outreach.

16. Just talk about chronic illness! Mention it in sermons as one of the challenges many people face just like unemployment.

17. Have Christian volunteers from church that will clean house for small fee.  Some have offered to clean my house, but I cannot accept charity yet, but neither can I afford to pay a regular house cleaning service.

18. Help with some of the small costs of providing encouraging books and resources for the church library the chronically ill can check out.

19. Remember there are lots of caregivers in the church–not just caregivers of parents, but spouses and ill children too.

20. Have copies for free of the sermon on CD.

This article is by Lisa Copen and can be reprinted at no cost, if you leave everything exactly “as is” including this footer. Get a free download of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen when you sign up to receive HopeNotes, Rest Ministries weekly ezine. Also be sure to check out Hope Endures, Rest Ministries weekly radio program every Tues and Thurs and National Invisible Chronic Illness Awareness Week.

March 4, 2009

10 Situations When You Should Ignore Your Doctor’s Advice

by Lisa Copen

doctor-clipboardWe 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.

We all need doctors, however, despite their mistakes and when you have a chronic health condition, it is is especially vital that you have a doctor who you feel is a partner with you in your medical care for both the short and long term.

Are there some distinct signals that you should actually not listen to your doctor’s advice, and that you should seek another opinion, or perhaps even switch physicians? Yes!

1. Your doctor is quick to speak and slow to listen, rarely hearing all of your symptoms or asking questions about them. He quickly records his interpretation of what you are saying before you have begun to explain your symptoms or the situation.

2. Your doctor is persistent about prescribing medicines that are recently available. He does not explain what the medication is, why you need it, how will help your situation, long-term effects, or if there is a plan to get you off of it. You can see the promotional items for the medication around his office.

3. Your doctor seems to know much less about your condition that you do. Your appointments consist of you informing him about your condition’s progression or treatment ideas and him taking 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. When you ask for copies of medical records, he goes out of his way to not get them directly into your hands, preferring to send them only to other physicians. It is important to know what is in your medical records in case you apply for disability assistance at some time and social security disability review doctors want to review your files.

8. Your doctor is rarely available when you need his expertise the most. When you need to make an appointment at the last minute for a special reason, he is not available. He is late in approving refills for prescription medications. His office does not return calls and if you page him after hours for an emergency he doesn’t call back for a long time.

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 seems to appear threatened or annoyed when you wish to get a second opinion or see a different kind of specialist. He does not comply when you ask him to fax his notes to another physician who should be in the loop of your treatment. He seems to think he is the only one who can meet your medical needs.

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 doctor, and it may take a while to find someone who is a good match for both our medical condition and our personality. But don’t allow your health to be risked just because you are too afraid to speak out and be assertive about your health care needs.
This article is by Lisa Copen and can be reprinted at no cost, if you leave everything exactly “as is” including this footer. Read Lisa’s newest book, Why Cant I Make People Understand? Order at WhyCantIMakePeopleUnderstand.com Subscribe to a great weekly ezine HopeNotes and get a free download of 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!

February 22, 2009

6 Tools for the Chronically Ill to Making Sensible Resolutions

arthealthywinterby Lisa Copen

Did you make resolutions for the New Year, positive that this would be the year that they would really happen?

– I’m going to lose that extra weight – I’ll really save some money this year – I’ll give people more grace – I will exercise on a regular schedule – I will start some good habits

We all start out with the best of intentions but as March 23rd rolls around we reflect on all the ways we’ve already let our goals slide. It’s easy to feel like we are letting ourselves and those we love down.

For most people, setting goals for the New Year is a regular part of life. Chronic pain sufferers, however, can find resolutions can be exasperating and nerve-racking. Our bodies and health, therefore our lives, are beyond our control the majority of the time. The idea of walking just a few blocks a day may seem reasonable at first, but the smallest change in our illness may quickly prevent us from even walking to the mailbox. Suddenly even the simplest of goals are out of the question.

The list of why we may “fail” at our resolutions even seems justified.

–> I’m going to exercise more . . . And then I have surgery and my illness is exasperated. Even my doctor said to take it easy and not overdo right now.

–> I’m going to get rid of those extra pounds . . . It seems every chronic pain medication I get has a list of side effects that say, “May cause weight gain.” May? They all do!

–> I’m going to start making wiser choices about money . . . Money? What money? I’m barely surviving on what I have!

So how do we move forward when everything seems stacked against us?

First, if you didn’t set any goals in January, give yourself a pat on the back. No universal rule has been broken that said you must start your New Year’s goals in January. The month of January is a time for recovery. You’re likely exhausted from the holidays, the travel, or visiting relatives. And most people with illness pack December’s calendar full of doctor’s appointments too, before their health insurance deductibles all start over in the new years. If you’ve managed to survive January without any colds or infections, you’re in the minority. And in most parts of the country the weather alone can make you feel disabled.

Secondly, make some changes without labeling anything a “resolution.” When you go to grab snacks at the store, get items with high fiber, soy, sugar-free, organic, or even those that have immune boosts. Check with a dietician about what some healthy choices would be, taking your illness into consideration. Little changes will eventually add up, and you can have the pleasure of knowing you are working towards your objective.

Thirdly, make a list of some of the things you value and want to strive for. Don’t just say you are going to “save some money” but instead, think about what you really want to save it for. Have you longed to visit a relative but you’ve not been able to afford an airline ticket to go visit? Though saving money to repair your car may not seem like a fun use of that saved money, surely you value your freedom to have your own transportation. Put your list on the refrigerator or your bathroom mirror so you can frequently recall just why it is you are sacrificing those large white chocolate mochas.

Fourthly, partner up with someone else who has a chronic illness where you can share your goals and how your illness impacts them. Illness adds a great deal of stress to our lives all the time. Any changes are intensified because our disease is so uncontrollable. It’s not helpful to have your healthy best-friend say, “Let’s just walk a half a mile today! A little pain means it is working those muscles!” A friend who can say, “I totally understand how hard it is when you’ve lost five pounds and then steroids put it back on in three days,” is a gift. You will be able to keep perspective on the situation. Chronic pain patients who join support groups often report a better quality of life.

Fifth, give yourself a break. Depression and chronic pain go together way too often. When you make a decision that is less than ideal, don’t sweat it! Don’t think of it as a failure, but rather just a less than perfect choice you made for that moment. You will have another sixty-something times in the next month to make the correct decision. Start out by just aiming for making the correct one more than half the time. Skipping that shopping spree or avoiding the drive-thru burger place is a step in the right direction.

Lastly, assign yourself a goal that is fun! We forget that not everything in our lives needs fixed. Sometimes we just need more joy. Mark your calendar for lunch with a friend every two weeks as a new habit. Surround yourself with people who are inspirational and who overcome the odds in their lives with enthusiasm. And don’t forget to reward yourself too. If you clean out your closet, working towards an ambition to get more organized, go buy a new chic hat that isn’t typically you.

If you have supportive friends and down-to-earth expectations, by the end of the year you will find that you are one of the few people who actually met some of those “resolutions.” And everyone has some of their goals that are left for next year’s calendar! So celebrate the fact that you have found some joy along the journey of reaching towards some new habits, despite living with illness.

This article is by Lisa Copen and can be reprinted at no cost, if you leave everything exactly “as is” including this footer. Get a free download of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen when you sign up to receive HopeNotes, Rest Ministries weekly ezine. Also be sure to check out Hope Endures, Rest Ministries weekly radio program every Tues and Thurs and National Invisible Chronic Illness Awareness Week.

Chronic Illness Articles

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