Your New Chronic Illness Small Group: Who Is Invited?

by Lisa Copen

As you begin to decide on the logistics of your support group, one of the first things to consider is who you would prefer to actually attend.

For example:

- Will this group before men, women, adults, and/or teenagers?

- Can you see your group being helpful for those who have just been diagnosed as well as people who have lived with an illness for decades?

- Will the group help seniors who live at home independently as well as seniors who live in assisted living facilities?

- Don’t forget about the many people who live by themselves, plus, those who have large families.

- Will your group be an encouragement for those who depend on an employed caregiver, as well as those who have volunteer caregivers such as family members?

- Will the group serve people who have very limited abilities and are bedridden a great deal of time, as well as those who are able to work full-time outside the home? People’s abilities will vary to the extreme and perhaps change frequently.

- Will you try to offer encouragement to parents who have young children at home, as well as those with adult children?

- Will you support groups seek to encourage those who are financially blessed and those who are trying to survive on disability assistance?

- Do you feel comfortable serving those who live with a chronic illness themselves but are also a caregiver for someone such as for an aging parent or an autistic child?

- When considering if your small group will have a Christian foundation, are people of any religious background welcome to check it out?

- Would you prefer your group to have open membership, where people can join at any time, or would you rather have just certain times of the year new people can become members?

As you can see from the list above, there is no such thing as “typical” when it comes to describing the lifestyle of those with illness.

You may encounter a woman who has had multiple sclerosis for twenty years, but who has just recently began to use a wheelchair. She is grieving the loss of her mobility and the frustration of feeling like people don’t treat her the same. She feels as though she has coped well with this disease for many years, but the recent loss of more of her abilities that defined her independence are causing her to go through a great deal of depression.

And sitting across the room you may find a woman in her seventies who has only recently discovered that she has a chronic illness and it is quickly changing her lifestyle! She is not one bit happy about going from being an active gal who felt 50 to nearly being home-bound. She is grieving the loss of abilities, especially her independence, especially since up until recently she was still able to drive safely.

Another point worth noting: As the facilitator, you have the ability to decide who you feel most comfortable inviting to your support group, and setting some healthy boundaries. Do not ever put yourself into the position where you feel you are outside of your comfort zone in an unwholesome way. For example, many women tend to lead within only groups since the subject matter can sometimes lead to conversations filled with vulnerabilities and intimacy, and it may not be the place to expose one’s emotions in a group where the divorce rate is already skyrocketing.

As you are leading your group you don’t worry about specifically addressing every situation that has been mentioned above, however, it is vital to keep in mind the variety of backgrounds and experiences that those who are attending your group bring with them when they enter the room.

By understanding not only their history, but also their personality, and how they best hope with their disease, you will have an improved capability to encourage them and find where their strength lay so that they in turn can encourage others.

Lisa Copen is the founder of Rest Ministries and National Invisible Chronic illness Awareness Week, as well as the author of Why Can’t I Make People Understand? If you are a small group leader or thinking of starting a group, don’t miss Lisa Copen’s new book, “How to Start a Chronic Illness Small Group Ministry.” Over 300 pages with step-by-step instructions on how to write a vision statement, promotion and attendance tips to what to do when everyone just vents your whole meeting. Discover hundreds of resources at Rest Ministries .

Popularity: 1% [?]

Living With Invisible Illness: 5 Ways To Get Over Aggravations

by Lisa Copen

“You look so good! You can’t be as bad as you say. You look perfectly healthy.” “You think you have fatigue? Try working full-time plus having four children! Then you’ll know what chronic fatigue is.” “I think you’re spending too much time thinking about how you feel. You need to just get out more.” “If you really wanted to get well, you’d at least try that juice drink I gave you last week. It won’t hurt to try it.”

And the remarks go on. . . and on.

And our heart aches.

You may be surprised to hear that nearly 1 in 2 Americans has a chronic illness or physical condition that affects their daily life. The range of diseases and included everything from back pain to fibromyalgia, arthritis to cancer, and migraines to diabetes. Oftentimes, one of the largest emotional stumbling blocks for people who suffer from illness is the invisibility of the pain. About 96% of illness is invisible. This means that the person who suffers from the chronic condition show no outward signs of physical pain or disability, nor does he or she use an assistive device like a walker or wheelchair. But the incredible pain each day can be disabling within the confines of the home.

If you have an invisible illness here are 5 tools to help let go of some of the frustrations:

[1] Let go of expectations. This may be a life-long process, but you will consistently find that people will always disappoint you, as no one is perfect-including you! Remember, you don’t understand the difficulties that your friends are going through, whether it’s a divorce, the death of a loved one, a loss job, an ill child, etc. Your illness is significant in your life. Even when people care, they still will have significant things going on in their own lives.

[2] Find supportive friends. Is there someone in your circle of friendships who is constantly belittling you or suspicious about your illness? Is he is beyond listening and instead spreading gossip about how he saw you at the grocery last week and you looked perfectly fine? This should be a relationship to let go of or, if it’s a relative, distance your self as much as possible. Illness can help us easily prioritize our friendships and that way we can spend our limited energies with those that mean the most to us.

[3] Search for the joy in your blessings. Instead of dwelling on thinking about how badly you feel, find ways to bring more joy into your life, even if it’s just appreciating the small things. Explore what makes you happy and what you are doing when a natural adrenaline takes over and you have extra energy. That’s likely where your passions are! Focus on bringing more of this into your life. And don’t let your limitations stop you. For example, maybe you once loved to garden. Now you could grow a few potted flowers or hire a neighborhood teenager to plant some vegetables and set up an automatic sprinkler system for them. You could even start a garden consulting business.

[4] Use your talents and skills for things you care about. If you’re no longer able to work because of your illness, you may feel like your skills are going to waste. Maybe you’ve always wanted to write children’s books or be a business consultant. Find a place to plug in and do some volunteer or part-time work for to be able to use these skills in an area where you feel passionate. Instead of focusing on what others aren’t providing you with that you want so much, follow your dreams and give that gift to yourself.

[5] Encourage someone else. You personally know how hard it is to live with illness and to feel like no one understands. So take time to be vulnerable with someone else who is going through this. Whether you meet someone through an online group such as National Invisible Chronic Illness Awareness Week’s message boards, or through your local support group, volunteer your time and expertise (yes, you’re an expert on living with invisible illness!) and use it to make someone elses journey easier and you’ll find your own is more enjoyable too. Are you frustrated that no one at your church thinks your invisible illness is real? Rather than stop going to church, find ways to educate them, such as a column in the church newsletter or brochures about National Invisible Chronic Illness Awareness Week. These say what to say/not to say to a chronically ill person.

None of us can change another person or make someone care-but we can educate them and give gentle advice. We must also continue to work on ourselves. You’ll find that even when you want to change it can be a real challenge, requiring discipline and motivation for a better life. You owe it to yourself to find joy despite your illness, and by focusing on how you can change your circumstances, instead of change other people, you’ll be much more personally rewarded.

Lisa Copen is the founder of Rest Ministries and National Invisible Chronic illness Awareness Week, as well as the author of Why Can’t I Make People Understand? Chronic illness doesn’t have to be depressing! Subscribe to receive daily emailed encouragement from the largest Christian outreach for people with illness. Don’t miss Rest Ministries great books and gifts we’ve selected for people coping with illness.

Related articles by Zemanta

• Can One Person Make A Difference? The Story Behind The Notes (invisibleillnessweek.com)
• Press Release – Invisible Illness Week Seeks To Encourage Through Anonymous Notes of Kindness (invisibleillnessweek.com)

Popularity: 1% [?]

When Your Children Are Ill

Although I do have an invisible illness, hypothyroidism, my story is about being a mom to kids with chronic illness. I have three children and all of them struggle daily to function in a world that judges by appearance.

My older daughter and my son both have postural orthostatic tachycardia syndrome, a form of dystautonomia. My younger daughter has not yet been diagnosed but has suffered from painful joints and low blood platelet counts for over four years. Could be lupus, could be arthritis but we don’t know yet.

All three are bright, articulate, nice looking teens or young adults. All have faced isolation and misconceptions from peers and adults.

When we choose to have children, we know that it is our job to care for those children, to make their environment safe, to kiss the boo-boos and make things right.

When those same children begin to have unexplained health issues it is a huge burden on a mother. She’s used to fixing it and this is something that she has no power to fix. The only thing she can do is become her children’s health advocate.

When doctor after doctor diagnoses a somatic condition because it doesn’t fit into his or her little box of symptoms, mom continues to research and make phone calls in search of that one doctor who can help her children. I was blessed to be able to find the right doctor for my kids with POTS. I’m hoping we’ve found the right doctor for my other daughter.

Family and friends don’t understand illness that doesn’t fit the norm. What they don’t understand, they question. After enough questions, you begin to doubt yourself. This is true of both the child with the invisible illness and the caregiver.

I want people to know that the best thing they can do for those with chronic illness and the family members who care for them is to pray and to offer encouragement without offering advice or judgment. I also want to say that I am so proud of my children.

They are strong and they will overcome the obstacles they face. I thank God for each one of them and I pray that he will continue to guide and direct them.

National Invisible Chronic Illness Awareness Week is important because it helps people to remember to not judge based on outward appearance.

Deana Tritch is a wife, mother and homemaker. She is also a miniaturist and you can see her work on her blog, www.delightfulminis.blogspot.com. She is currently trying to single handedly educate her community about dystautonomia, the condition that two of her children have. She lives in rural Indiana with her husband, son and a few furry family members. Her daughters are currently in college and the oldest one is planning her wedding.

Related articles by Zemanta

• The Hardest Part is that People Just Forget Our Illness (invisibleillnessweek.com)
• When Your Children Are Ill (invisibleillnessweek.com)

Popularity: 4% [?]