LIFE --1 Hour At A Time!

"If any of you lack wisdom, let him ask of God,
who gives to all men liberally,
and does not hold back; and it shall be given him."

I believe people with physical limitations have no choice but to spend more time "Being still, knowing that He is real." That is one benefit of being slowed down, to be able to learn to listen to the answers (There are actually many blessings and benefits that come from hardships.)

I can't find the scripture I want, but one says we will be shown the mysteries of the universe if we are willing to ask and to learn to listen and recognize the voice of the Holy Spirit and the Savior and the Father.
It is a great feeling to know that even though we are limited physically, we can still be useful, we can still feel needed, by helping others online. We contineu to learn as we help others. Before the days of internet, I can't imagine how people surivived emotionally or physically for very long through serious illnesses that would make them shut-ins. How isolated and lonely they would be! I am so grateful to live in the age of Internet so the Lord can send me wise and loving friends from all over the world, and they are available at my fingertips. Now, to introduce you to a great influence in my life (and hundreds of thousands of others),

Lisa Copen.

Copen joins us today as the founder of http://www.invisibleillnessweek.com/ .

Sheila: What illness do you have, Lisa?
LC: I was diagnosed with rheumatoid arthritis in 1993, at the age of 24. A few years after that, fibromyalgia. I've never been in remission, so I have had a difficult time of it, though I know it could have been worse. Each day is a challenge and I am on multiple medications to just try to have some quality of life and keep walking. My hands and feet are pretty deformed now and I have many surgeries in my near future. My illness has gone from being completely invisible to much more visible and it's not just the pain that bothers me now but the loss of being able to do things, or do them with ease. Driving or unloading the dishwasher is an event because of my hands. Suddenly stepping off a curb is a challenge.

Sheila: How can people get involved with Invisible Illness Week and find out more information?
LC: Thank you for asking because just by helping us spread the word, for example,
sharing about this blog post or by linking to it or posting it on Facebook, is the perfect ways to help our grassroots cause. I probably don't have to tell you that we don't have a marketing budget! When people introduce their friends or family to our virtual conference or tweet out our twitters or articles, they are making a significant difference. We also have some fun items to help spread the word like buttons, and tote bags, silicon bracelets that say "Invisible Illness, Visible Hope," awareness pins, and of course bumper stickers.

Our theme this year it is "A Little Help Gives a Lot of Hope." We are also accepting blogs from people to be featured on our site as a guest blogger. And we have a place to sign up to commit to blog on the topic of invisible illness on one's own blog. You can join our cause on Facebook and share it with others, tell people about our video, our twitter facts about illness, things like that. Tell your doctor, counselor, pastor, colleagues; we have brochures available too.

Sheila: How has blogging and twittering and other forms of social media made a difference? Has it helped in how you've been able to let people know about Invisible Illness Week?
LC: Yes! So much, it's unbelievable. It's given every person who is interested in letting people know about what is important to them (like increased awareness about an illness) a forum. We've sent out some series of tweets in the forms of lists, like 20 things to say to a chronically ill person, illness facts, 20 things not to say, etc. with the twitter hashtag #iiwk09. There have been some really deep conversations at places like Facebook, spurred on from our posts. Be sure to follow us @invisibleillwk on Twitter!

We have over 1600 people who have joined our cause on Facebook. And we are giving away prizes to people involved in these different areas of outreach.

Sheila: I know there are a lot of people who feel so utterly alone, as if no one understands what they are going through. What do you tell these people?
LC: Honestly, if I could just sit beside them and give them a long gentle hug, I would do that first. I struggle with just listening myself; I always want to start solving the problem! But I know someone to listen to them is what most people really need. Secondly, I would also validate that they are right--no one can really can understand what they are going through. Illness is a unique and lonely experience. That said, there are a lot of ways to connect with people who understand more than they may expect; they just have to find them. There are lots of ways online to connect when you can't drive to a support group. Our social network is Rest Ministries Sunroom and I recently began Illness Twitters to connect people who Twitter about illness or health issues.

And lastly, since my faith is in the Lord, I couldn't let them walk away without sharing how knowing God has a plan for my life, despite my illness, has kept me going. I would want to tell them that despite any bad experiences they may have had at churches or with other Christians, God still has a "Plan A" for their life. The illness hasn't bumped them down to
"Plan B." That all may sounds cliche. I know that. But every day I hear people who say their faith in God is the only thing that gets them through it.

Sheila: You have a book out that gives people ideas about how to help a chronically ill friend, don't you?
LC: Yes, its called "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend." It's a helpful book that I refer to for ideas, even though I wrote it, because when someone I care about is hurting it is hard to think beyond bringing them food. We also have cute little JOY cards that stand for "Just Offering You..." that look like a gift certificate. A person can fill it out with what he or she is able to do like running an errand or doing laundry.

Sheila: That's a terrific idea! I would imagine that it would be easier to accept help from someone if it looked like a gift certificate.
LC: I think so. The cards are great for a support group, a womens ministry, or really anyone who wants a light-hearted way of saying, "I'd love to help. Here is what I am able to do."

Sheila: As a person who suffers from an invisible illness, what is the best way to react when people around me comment that I look fine, (therefore, in their mind I must be faking my illness)?
LC: That is a hot topic isn’t it? We have a few posts on our web page where people have addressed this question too. I think that it depends on your relationship with the person. Is this someone close to you who you feel comfortable being a bit vulnerable? If so, consider sharing, “I know it may sound silly, but for some reason when you say that, even though I know you mean it as a compliment, it FEELS like no one understands the actual pain I am in. Rather than saying that, if you said [fill in the blank] I would feel a sense of relief that you are one of the few people who actually ‘get it.’
If it’s someone who is an acquaintance, it’s not really necessary to explain. Or if you want to, though it’s natural to want to throw out a sarcastic remark, I think the gentler we are in our response, the more likely people will try to understand. Even though you may not be close to the person, she may have a relative who is very ill. Your response may open her eyes to what her loved one is going through. So laugh with your ill friends about what you could say, but offer grace when it comes to the words you actually do say.