Chronic Illness Articles

April 14, 2010

5 Priorities After a New Illness Diagnosis

by Lisa Copen

I remember the day my life shifted dramatically. I had had weeks of symptoms of swollen joints and inflammation beyond anything I’d ever experienced or even knew existed. My doctor called my place of work and said the rheumatoid factor was positive, which meant that at the age of 24, I most likely had an illness called rheumatoid arthritis. I bravely asked her “On a scale of 1 to 10, 10 being normal, what will my life be like?” She avoided the question, not wanting to give me a specific number. But I like to know what I’m up against and so when I asked her again she reluctantly responded “If you are lucky, perhaps a six.”

Now I knew: at the age of 24, my life would perhaps never return to where it was “before illness.” The word “normal” would be redefined. Simple activities like staying out late with friends, driving my car, sitting on the sand at the beach, or carrying a cup of coffee, would become an event and sometimes one I would be unable to complete. The carefree attitude and lifestyle that I had lived would always be overshadowed within the fog of chronic disease.

Recently, I received an e-mail from a woman who I went to small high school with of about 300 students–over 25 years ago. She had recently been diagnosed with rheumatoid arthritis, and while surfing the Internet to find information and encouragement, she stumbled upon Rest Ministries website and discovered that I was the founder.

We exchanged e-mails a few times and it is my hope that she found them encouraging. When I reflect on what I would’ve liked to have heard from someone who has lived with a chronic illness for years, upon my new diagnosis, these are the five things I find of most value to pass along.

[1] Contact the national organization or foundation that supports people who live with your chronic condition and explain to them that you have recently been diagnosed and would like their most basic information for someone with your illness. They may send you something in the mail, or direct you to your website. The important thing is to sign up for a membership to be on their mailing list.

Although you might feel as though you have not yet accepted the fact that this illness may be a long-term part of your life, it is important to go ahead and sign up for a membership to be on their mailing list. You can always toss the information or save it for later when you are ready to emotionally process it. But you will find that they will have the most current and objective information regarding scientific research and treatment options. As your doctor suggests medications for you to take, and you are reading the long list of side effects–and maybe questioning their judgment–these organizations will be your best source of information.

[2] Read about your disease, but know when to stop. Unless you have some rare disorder, you will find there is no shortage of information about your illness through millions of books, websites, podcasts, magazines, and more. It’s wise to glance over health and illness organization websites so that you have a good selection of credible resources to go to when you are reading for additional information.

You will want to know what some of the symptoms of your disease are so that if they do occur you will be aware that it is part of your chronic illness and not a separate chronic condition. However, don’t be tempted to try to read everything you can get your hands on, as it will simply depress you! Many of the symptoms that people describe may not actually be a part of your illness experience. You don’t want to get too depressed or discouraged over things you may not ever have to deal with!

[3] Don’t lose hope. As with my illness, rheumatoid arthritis, and most others, there are daily scientific discoveries that can change the of the disease. I have lived with rheumatoid arthritis for 16 years and just recently had four joints replaced in my left hand. My medical team, which includes a hand surgeon, rheumatologist, and physical therapist, all have commented that they rarely see these kinds of surgeries anymore due to the new family of drugs in the last 10 years that has slowed down the progressiveness and destruction of the disease.

Even if there is not an immediate cure, as we scientifically grow closer to being able to know our exact DNA, we will be able to pinpoint which medication will best treat our disease, without having to jump from one medication to another, losing months and years sometimes of our health, in order to find which one works best. Hope and a positive outlook will have a profound effect on your disease and your life. So don’t give up and assume that your illness will be disabling.

[4] Think about who you would like in your life to be able to talk to about what you are emotionally and spiritually experiencing due to the recent diagnosis. The person may be someone you meet in an online forum for your disease, it could be a pastor, mentor, counselor, or even a good friend who is able to listen without trying to fix it. The most important thing is that you have an oasis where you can share what you are experiencing without feeling like you may be judged or where you will receive ignorant comments such as “no pain, no gain.” Check out your local support groups for your illness, or other support environments such as HopeKeepers, which is a unique small group Christian support environment for those who live with illness or pain.

Also, consider your personality and how you are best encouraged. Would you feel most refreshed by sharing what you are going through with just a friend, one-on-one, at a coffeehouse? Or are you homebound, and signing onto a website every day to receive encouragement and prayer would be beneficial? Remember, whatever works best for you at this time, may not best meet your needs in six months, so do not feel like you are stuck with a particular group or mention. Be willing to try new forms of support to find which best works for you.

[5] Ask yourself “What foundation do I have in my life that will help me through the difficulties that I will be facing?” Even if your illness does not progress rapidly, the daily aches and pains, as well as the emotional roller coaster and spiritual “why?” questions you will have, will leave you searching for a deeper meaning in life than simply solving your problem with a cup of hot tea. As a Christian myself, I honestly do not know how people live each day with a chronic exasperating illness who do not know the Lord.

During those times this is what holds me together: knowing that my pain is never wasted; that God is ultimately in control and none of my circumstances surprise Him; and that He has a plan for my life despite the limitations I face and the goals I have that I may never meet. If you are not a spiritual person, when you are facing those middle-of-the-night-blues I encourage you to look up any Bible websites like Bible Gateway and read the Psalms. You may be pleasantly surprised to find that most people who live during biblical times face hardships, depression, doubts, and yes, illnesses.

Feeling overwhelmed and misunderstood? Don’t miss Lisa Copen’s book, Why Cant I Make People Understand? Order at WhyCantIMakePeopleUnderstand.com and learn why you feel the way you do and what you can do about it to make living with a chronic illness easier.

So to summarize, choose your information wisely, set personal boundaries for how much information you will read, keep hope, find a support system, and then search for that which will get you through the darkest of times when the information and people you have relied on disappoint you. You must discover a purpose in the pain that is greater than that which our world will tell you. Don’t ever put life on hold. As the late John Lennon once said, “Life is what happens to you while you’re busy making other plans.”

Feeling overwhelmed and misunderstood? Don’t miss Lisa Copen’s book, Why Cant I Make People Understand? Order at WhyCantIMakePeopleUnderstand.com and learn why you feel the way you do and what you can do about it to make living with a chronic illness easier.

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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.

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