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ICI (invisible chronic illness) can be debilitating pain, fatigue, weakness, cognitive impairments,
and/or other symptoms that are not visible to others -- they are usually lifetime illnesses that have no cure, difficult
to diagnose and to treat, unpredictable, and very hard for us to explain or for those around us to understand.
(Some examples can be fibromyalgia, multiple sclerosis, chronic fatigue immune deficiency syndrome, irritable bowel sydrome, bipolar
disorder, lupus, rheumatoid arthritis, and numerous autoimmune diseases.)
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When You Have to Stay Behind Pat Gates It is painful to be homebound or bedbound and miss many or all worship services
and Bible classes. Many mothers with young children have chronic illnesses who can't meet with the saints and they have the
added concern of not being able to take their children to the worship service and to Bible classes. Or they may have
a husband who is faithful in attendance but they may still be concerned that they are being a bad example to their children,
who may not understand their illness. If this is the case with you, make sure you go to services when you can, if you have
an illness that waxes and wanes; for your children's spiritual sake, as well as your own, do your best with meeting with the
saints. However, there are mothers who desperately want to go and can not, even for their children's sake. If you are a homebound mother
with young children don't despair, there are ways to help your child spiritually and for them to grow up in the nurture and
admonition for the Lord. Your children will see your love for the Lord and for Truth and you can teach them the necessity
and love of meeting with the saints. When you can not meet with the church to worship
God or if you are homebound: - Make sure your children attend
Bible classes and each and every service, if possible. If you don't have a spouse who is faithful in attendance or if you
are single, ask Christians to pick up your children when you are unable to attend. Also, if there is a family the children
are more familiar with, you can ask if they'll watch out for your children during worship service and have them sit with
them. Don't allow embarrassment to keep you from asking for help for your children.
- Always
be positive when the children leave and when they come home. If tears come because you're sad you have to stay home, it's
OK for your children to see them now and then but not every week or they may feel guilt for being able to go and you can't.
While it's good for your children to know you miss not going, too many tears, too often could be harmful. If you feel like
crying every week, wait until they leave, then cry and pray.
- Be happy when the
children come home and ask them if they'd like to share what they learned.
- If
they are old enough, ask them if they announced anyone that was sick or have problems and need help. During the week you can
pray for them with your children and send them cards, along with your younger child coloring or drawing a picture for them.
- Have a daily Bible class with them during the week.
- Pray
with them.
- Be a good example.
- Allow
their friends from Christian homes to come over when possible.
- Invite Christian
families over when possible.
- Ask Christians to include your children in social
activities and ask for rides for them to these events.
- Be ready to answer your
child's questions. Study the lessons they are studying.
- Listen to your services
online if they are recorded live, if not, listen to another congregation's worship service. Embry Hills church has all their
classes and worship services live online: http://www.embryhills.com/ THIS DOES NOT TAKE THE PLACE OF WORSHIPPING WITH THE SAINTS IF YOU OR YOUR CHILDREN ARE ABLE TO GO, however,
if you must stay home or if you live in an area where you can not find a ride for your children if you are homebound, listen
to the services online and make sure you teach your children respect for this time in worship to God. Sing and pray together
as well.
- Make sure your child does their Bible class lessons and be ready to help
them.
If you have some more advice
for homebound mothers, please fill out the form below and be sure to click SUBMIT.
 THE STRESS OF PARENT'S ILLNESS ON THEIR CHILDREN WARNING SIGNS OF STRESS Changes in appetite Dropping
grades in school Wildness and irresponsibility Fears and phobias, often relating to school Changes in behavior that are negative and nonproductive Difficulty functioning with people Eating and sleeping problems Low self-esteem
HIDDEN FEARS "BAD" EMOTIONS HOW WE PARENTS CAN HELP Keep in mind the strain chronic illness has on mature, responsible adults and recognize the strain it
could have on a child who lacks understanding. Periodically take the emotional temperature of each child. Maintain open communication. Be open and honest with your child. You can avoid some of the messier details of the illness, especially if they
are small, but over-protection may cause more suffering due to imagined fears and may make your child feel alienated. Educate your family about the illness. Involve your children in the caretaking. Maximize your support system. Get together with family and friends. Ask for help for the children when you need it. Inform the school so teachers will be sympathetic. Keep the family laughing. Try to do family things that the ill parent can be involved in. Don't direct your anger at the child. Remember, the added responsibilities your child has acquired will have positive effects, creating a
more caring, responsible adult.
-From FOR BETTER OR WORSE, A Couple's Guide to Dealing with Chronic Illness, Beverly Kievman
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“The
single most important factor is the parent’s attitude,” emphasizes Manuel D. Reich, D.O., director
of the Center for Pediatric Psychiatry and Medicine at the University of Pittsburgh Medical Center. “If the parent is
depressed, complains a lot, and acts needy, the child is at risk for having more problems—or may even develop his own
disability, such as headaches, stomachaches, or a breathing difficulty. But if the parent is taking care of herself and leading
as normal a life as possible, the child will be secure in the fact that Mom is doing the best she can do to accommodate his
needs. In fact,” he continues, “many of these children become responsible and well organized early on. They may
have a somewhat less idyllic sense of childhood, but the trade-off is that they may also be more mature. Many go to work in
one of the helping professions, such as medicine or advocacy law.” But to help a child grow from this experience, it’s not necessary for an ill parent to be strong as a rock,
adds Dr. Rosen. “It’s important for kids to know that their parents are human,” he points out. And a parent
who readily admits that she can’t do it all—and reaches out for help from others in her community—sets a
great example for her child.
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Check out this section on the FMS
& M.E. (CFS) page.
WHAT WE WISH EVERYONE KNEW ABOUT CHRONIC ILLNESS
- When I was homebound and missed several/
many worship services Christians helped me by...sending cards. When in a flare up I'm too tired to even talk on the
phone. Also when I hear that I was mentioned during announcements, that gives me cheer and hope.
- I would like to comment to the person who had a hysterectomy in
her early 30's. I too had a hysterectomy at 27 but had 2 kids who were 4 and almost 2. It hurt to know that there
would be no more children, but I already had children. Why not look into adoption - there are lots of children who need
parents, if not adoption then do volunteer work as a Big Sister or work with children in need of a friend. Lots of children
just need a friend to talk to cause parents or parent is busy trying to earn a living and other problems - just be there for
a child. You can love that child like they were your own and do for them as they need. Maybe even foster parenting would
be your answer - there is lots of possibilities you can do to help your mother instinct.
- Thank God, God sees the heart and the truth within there. At least another recognizes the difficulties
besides the one feeling it. Unfortunately we live in a world where the 'visible' is the 'judging line', but fortunately we
follow a God who does not see as man sees. God bless you daily and rememeber James 1:17 applies to you too even when you are
so very tired. James 1:17: "Every good gift and every perfect gift is fro above, and comes down from the Father of
lights, with whom there is no variation or shadow of turning."
- When you have ulcerative colitis, diverticulosis, and IBS you must always know where the bathrooms
are! When I am having a flare up and miss services, I am told, "There's a bathroom at the building, you can be
there just as well as be at home!" Don't you think I know there is a bathroom at the building? Do you know
how embarrassing it is to have to get up over and over again during services. Even if no one knows what's happening,
your mind has you convinced they do. And how humiliating when someone else comes in the bathroom while you are there!
I'd rather stay at home and use my own bathroom, thank you, and ask others to please, PLEASE, understand.
- It is so depressing to be feeling sickly all the time, but people
think if you look OK then you are. Little do most people understand about illness. Getting dressed is a big deal
and exhausting also. Going out shopping is a really big deal and very tiring. Most of the time I only leave home
for just doctor appointments, trips to the pharmacy, or short quick to take care of errands.
- Just because your outward appearance looks ok, most people assume you are ok. Little do they
know that the time it takes to get dressed for Church services, you are so tired out you need to rest. Do not miss because
I want to - just do not have the strength to get ready and go. I have osteoarthritis, missing discs in my spine, aching
and hurting most of the time, plus I have
had almost constant urinary infections for almost 2 years. The constant
antibiotics drags you down plus the infection takes your strength and energy.
Do not think just because I look OK that
I am.
Makeup can hide a lot of things. Most of my days are spent in gown and robe or muumuus. Too much energy
to get completely dress. Thank goodness I have a husband who understands and is a very good cook or brings in meals.
Also we can afford to have someone come in occasionally to clean house.
In between I try to keep things as clean
as I can.
A trip to shop at Wal-Mart is a huge outing for me, but tires me out so it is 3 or so days of resting after
going. - I had to have a hysterectomy in my
early 30's so I will never be a mother and won't be a grandmother. Ever. But hey, everyone says, "Here, take mine,"
THAT'S SO NOT HELPFUL!
- I missed out
on a whole lot of mothering because my Mom had early Alzheimer's. I search for mothering where I can find good sources (usually
my sisters in Christ).
- I
would wish that people would understand that with fibromyalgia....we
may look well and some days have alot of energy and the
next day be in much discomfort. It is so hard to plan ahead.
Some days those hugs that we really need hurt our body
but lift our spirits...be gentle!
I have fibromyalgia and arthritis. When it's cold or damp, I am stiff and obviously in more pain.
But I wish people could understand that when I'm not in a lot of pain, Fibromyalgia doesn't just go away. I
still ache all over - ALL THE TIME - and I still feel like most people feel when they have the flu, except I don't have
a fever. I'm so tired that it takes great effort just to go anywhere. But I don't "look" sick.
Even those who know I have Fibromyalgia don't seem to understand that just because my face isn't twisted in pain,
my body is still struggling to be at worship or to do things that I'm supposed to be doing. I'm not bitter about
this. I just feel like others think I'm making excuses when I say I cannot be at a gathering, or go shopping with
them, or go walking with them because if I do that I won't be able to do what I must do tomorrow morning. I loved
the spoon theory. It's a perfect illustration. I don't think well folks will ever be able to fully understand
how many ways an invisible illness changes everything in one's life. I wish people would know how embarrassing
ulcerative colitis is. The urgency of having bowel movements comes as quick as a hiccup. If you are brave enough to
step outside of your house--your first concern is where are the bathrooms. I try to keep extra clothes with me--just
in case of an accident --Then of course there's the fear and depression that sets in when you see the blood--which
is common with this disease. I'm always on edge--what if?? I used to invite people home from church on Sundays, and often had covered dish dinners
at my house. It was fun and I enjoyed it. Because of my chronic illness, I can no longer plan
such things unless I do it on a tentative basis. First I have to find the energy and have a day with
less pain than usual so that I can vacuum and clean my house, including the bathroom and kitchen. The problem is that
if I manage all that, I'm usually not able to do any entertaining for several days. Meanwhile the house becomes
a mess again. And I'm so embarrassed when people stop by now, without calling first. I hate for people
to see my carpet, kitchen and bathroom dirty. I feel like they think I'm a slob. And I'm not.
I'm a clean person. I just can't keep up with cleaning and laundry and cooking for my family without doing
it, a little at a time. I HATE being like this. We can't afford to hire someone to help. A couple of sisters
at church have offered to help, but it's so embarrassing to have them see my house when it's so messy.
And I feel so guilty not helping the one who volunteers to help, when I don't LOOK sick. I feel a lot of guilt.
That's probably more my problem than others making me feel guilty. And it IS worse when company shows
up from out of town, who may not know much about my illness. I cringe if they come when I've had a rough
week or two and the house looks like I am a lazy housekeeper. I see their eyes darting around at everything.
Not much can be done about it. I just hate feeling like others see me as lazy or uncaring about my home and family.
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. WHAT WE WISH EVERYONE KNEW ABOUT HAVING AN ILL CHILD
- It is okay to ask how the child is doing. It is okay to
cry. It is okay to get frustrated, feel like giving up, but you can't. Everyone gets tired and wishes it would
go away. But it does not. It is okay to tell your child you love them.
- I recently saw a show on television regarding autism. They were talking about when anyone is diagnosed with
cancer, how everyone is kind and sympathetic and offering all the help in the world. However, if your child is diagnosed
with autism, people tend to run the other way as quickly as they can. This is so hurtful and harmful to the family.
I wish people would try and understand more about the many facets of autism. The guests on the show (parents of
autistic children) suggested that if you know someone with an autistic child, you offer to babysit for them. If you
do not have a child with autism yourself, you do not understand why this is so important to the parents/caregivers. They
are so correct in their suggestion. Babysit for an hour or two, maybe overnight sometime. Give the parents a chance
for some well deserved respite. You will ALL benefit from this experience. For those of you who do not have to
deal with this problem, you do not know how luc!
ky you are.
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ARCHIVES
SERIES ARCHIVES:
- When husband doubt their wives
- How
the ill feels about missing
- What the ill wishes others would
do
2006
- Tips for Coping with Chronic Illness
- Thoughts From a Chronic
Fatiguer
- Missing Services...Again,
Being Misjudged as Unfaithful
- Missing
Services...Again, The Feeling of Separation
- Keeping
an Eye on the "I" in Isolation
- Beware
of Self-Imposed Isolation
- 4
reasons why your family won't help clean
- Why
is She Looking at Me Like That?
- What
Next?
- The Spoon Theory
- Explaining Fatigue to Your Doctor
- A Gorilla in Your House
- Fatigue Facts
- Today I
Will Cry
- Couple of short stories
- Is This Suffering Wasted?
- How Important is a Chronically Ill Woman to a Congregation?
- Living with Handicaps or Loss of Health
- Are You a Productive Member of Society?
- Helping the Sick
- Weariness
- "6"
- She Married a Tomato
- Poem: A Christian Life
- "She smiles entirely too much..."
- Which Mask Shall We Wear Today?
- Nobody Understands!
- Understand When We Forget
- The Letter to "Normals"
- Braille Bible for those who can't afford it
- Others Need Your Prayers
- MS is a family disease
- Ha Ha, We're Sick and You're Not
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2008
- Don't Coddle Illness
- Living with Interstitial Cystits & FMS - one approach
- Seeing with spiritual eyes
- Damaged Goods, Broken Cookies, & Thumbs
- How to Handle People Who Do Not Care to Understand
- You can't go home when home is no longer there...
- What's Your Fatigue Level?
- Touched by Kindness
- Life
with Celiac Disease
- Blending Illness & Life
- Some thoughts from Philippians
- Spiritual Guard Duty
- "We'd
Like to Come Pray with You"
- Even when forgetful,
reading the Bible does us good
- I can sleep when
the wind blows.
- Where There is a Will, There's
a Way (poem)
2009
- When Chronic Illness Strikes at a Young
Age
- Holding on to hope when
your health takes a downward turn
- A Prayer
- My Heart Gets there First
- Thoughts about fatigue
- A
Weary Soul
- Why more christians
do not know how to support someone dealing with chronic illness/pain.
- A Gorilla in Your House
- Why
Suffering
- 5 Mistakes Women Make at the Doctor's
Office
- About MCI
- Should I Allow God to Heal Me of Diabetes and Not Doctors?
- Medicine in the Bible
- Physicians
in the Bible
- The Compassion of our Lord
- When I was first diagnosed with cancer
- A Friend (poem)
- Laying
on of Hands
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- Wrestle
Until Day Break
- Pathway of Pain (poem)
- Reader's comment and response about FMS
Becoming weary in well doing while contending with chronic pain. Finding Positive Friendships That Nurture Our Health A Forever Friend My
Coffee Shop You - My Friend Psalm 107 "Wonders" Springtime Thoughts
and Emotions After the Last Cancer Treatment Thoughts
from Those After Their Last Treatment Quotes of Encouragement
Note from a Breast Cancer Post-Op Specialist Breast cancer websites Robert Wayne LaCoste Living
with Infirmity
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