Lisa Copen Interview on National Invisible Chronic Illness Awareness Week – Part 2

Let’s continue with Part 2 of our interview with Lisa Copen, founder of National Invisible Chronic Illness Awareness Week.

ArthriticJoints:  What illness do you live with, Lisa?

Lisa: Rheumatoid arthritis is my main disease I struggle with.  I was diagnosed in 1993 at the age of 24.  A few years after my diagnosis, I started having symptoms of fibromyalgia and was later diagnosed with that. Unfortunately, I’ve never experienced any kind of remission that all the doctors hoped for, so the last sixteen years have been a real challenge. I know I could be worse off now and in some ways I’ve been very blessed, but I’m also going through the emotions of my illness becoming more visible.

My illness isn’t just painful every day, it is now more difficult to do dishes or drive because my hands and feet are becoming more and more deformed. I take a lot of medications that have slowed the disease progression down, but still have many surgeries in the near future.

ArthriticJoints:  What is the one recommendation you would give to help people live with a chronic illness, such as rheumatoid arthritis?
 
Lisa:  Learn to trust your instincts and yet find balance in everything. Seek out friendships–even online–of people who understand some of what you are going through, but also allow your healthy friends to be there if they can and want to be. Don’t tune them out just because they don’t know what to say. Explain your illness to them, yet don’t talk about it all the time.

Do research about your illness, but don’t obsess over it. Be prepared for what your illness may bring, but don’t read everything you can get your hands on. Some of it will never happen to you. Be cautious about germs and infections, but not paranoid.

Learn to pace yourself. Know when to say no, but also know when to say yes, even when you feel like saying no. Give yourself some slack, but don’t allow your illness to control your life. Finding that balance will take a lifetime, but the sooner you start learning it, the easier life will become.
 
I give a lot of people, who are frustrated that no one understands what they are going through, a copy of my book “Why Can’t I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why.”  I tell them, “you may not want to read this now. You can throw it against the wall if you want or put it under your bed, but keep it, because some day you will be ready for it.”

ArthriticJoints:  Have you experienced any discrimination or ill will from others due to your illness and how did you handle it? 
 
Lisa:  Discrimination is a strong word, so I would have to say no. But I have had well-meaning people in positions of authority offer me advice and then act as though I was either ignorant or “didn’t really want to get well” just because I didn’t take their advice. I had a doctor approach my display table once and insist I should try drinking tea from ground up reindeer antlers. I had a woman follow me around all evening trying to convince me I should go off all of my medications and I’d be fine. It was at a dinner for a large international ministry I was ecstatic to get to attend and she kind of spoiled the mood with all of her dirty looks.

ArthriticJoints:  I heard that you type with just a few fingers.

Lisa:  Yes, it’s true. I use just three fingers and my two thumbs to type. One adapts. I think I still can type about 50 words a minute, but sometimes my fingers start to go numb. I have a voice program I can use, but I am a fast talker and tend to get impatient with its limitations.

ArthriticJoints:  How can people get involved with Invisible Illness Week and find out more information?

Lisa:  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 way 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 is “A Little Help Gives a Lot of Hope.”

You can join our cause on Facebook and share it with others, tell people about our video, our Twitter page, facts about illness, things like that.  You can also tell your doctor, counselor, pastor, or colleagues that we have brochures available too.

Some people call their local newspaper and share about Invisible Illness Week, their support group, or their illness experience. Since Invisible Illness Week is listed in Chase’s Calendar of Events, journalists can tie in the personal story with the annual event.

ArthriticJoints:  How has blogging, tweeting 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?

Lisa: Absolutely. Exponentially! For example we’ve done a series of tweets on “20 things not to say to a chronically ill person” and “20 things to say”. Our twitter hashtag is #iiwk09 to find Invisible Illness Week tweets easily. A lot of interesting conversations have been spurred by these tweets. Be sure to follow us @invisibleillwk on Twitter!

We have over 1,600 people who have joined our cause on Facebook.  We have some amazing prizes we are giving away to people involved in these different outreach areas too.

ArthriticJoints:  There are so many people who feel really alone, as if no one in the world can possibly understand how much they are suffering. What would you tell these people?

Lisa:  If I could I would just give them a long hug and sit there beside them to listen first. Listening is one of the hardest things to do! I struggle with it myself! But I know that is what people need.

Secondly, I would also validate that they are right–no one 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 several 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 Tweet 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 sound 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.

ArthriticJoints:  You have written a book that gives 505 ideas on how people can reach out to someone who is ill, right?

Lisa:  I do. It’s called “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.” It’s actually a very helpful book because even though I wrote it, I still refer to it frequently for fresh ideas on how to encourage someone who is hurting. Too often I get stuck in the rut of not being able to think of anything other than another meal. Food is a nice gesture, but there are so many more creative and memorable ways to show someone you care.

We also have cute little JOY gift certificate cards that you can give a friend when you are offering to do something for them.  JOY stands for “Just Offering You” and one can fill out what they are able to offer (errands, laundry, taking your child for a play date, etc.) and when the best time is for them to volunteer to help.

ArthriticJoints:  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.

Lisa:  Yes, that’s the idea. The cards are a perfect addition for a women’s ministry, a support group, or really anyone who wants a way to say, “I’d like to help. Here is what I am able to offer to do.”

ArthriticJoints:  Thank you again so much for joining us today, Lisa.  Thank you for starting National Invisible Chronic Illness Awareness Week. I know that you have your own health struggles and that you are also a wife and mother, so I know it can’t be easy to do it all.

Lisa:  Honestly, it’s not, but it has always kept me going too and I couldn’t do it without my husband’s support. Thank you for the interview!  I hope all of your readers will visit us at and let your friends know about our free 5-day virtual conference! We’re going to have a great time!

If you missed Part 1 of our interview with Lisa Copen, don’t worry you can read it now.  Lisa Copen Interview on National Invisible Chronic Illness Awareness Week – Part 1

Lisa Copen Interview on National Invisible Chronic Illness Awareness Week – Part 1

Lisa Copen  joins us today as the founder of National Invisible Chronic Illness Awareness Week.

This year it is September 14-20, 2009 and there are many ways to get involved, including a free 5-day virtual
conference. Lisa is on a blog tour to help people know about the event and how it can specifically encourage you.

Thanks so much for joining us today here at ArthriticJoints.com.

Lisa:  Thank you for the honor of being here. I read a lot of blogs, but recently I’ve visited more than ever before and I’m amazed at how the quality and quantity of blogs on health and illness matters have grown over the last couple of years.  Both the readers and writers of blogs have changed how people perceive different illnesses, because they reveal not just the symptoms of illness, but the daily lives of the people who live with them.

ArthriticJoints:  Tell us about National Invisible Chronic Illness Awareness Week. That’s quite a mouthful!

Lisa: It is. A lot of times we just call it Invisible Illness Week. Our mission is to have a designated time, worldwide, in which people who live with chronic illness, those who love them, and organizations are encouraged to educate the general public, churches, health care professionals and government officials about the effects of living with a disease that is not visually apparent. Through programs and resources, we seek to recognize the daily challenges of more than100 million adults and children who live with invisible illness, such as arthritis.

Its also a great chance for people with any illness to be involved in a national event to increase the understanding of their own particular disease. They can use our event to blog about the emotions of living with their illness, for example, how they often may look perfectly fine but are in deep pain.

ArthriticJoints: Explain to us what a virtual conference is.

Lisa: A wonderful opportunity to “attend a conference” without every having to get dressed! The main part of the Invisible Illness Week is our 5-day virtual conference–which is completely free–September 14-18. There are 20
speakers who are experts in their area and with chronic illness they will be giving a 40-minute presentation and then taking live calls. The seminars are M-F, 4 times a day on a variety of topics: going to college, marriage, applying
for disability assistance, cleaning, finding the right job, faith, preparing for surgery and many more. All are free, listened to live or later, and even downloaded from iTunes to your ipod or purchased on a CD.

ArthriticJoints:  That sounds amazing! So, do you have last year’s seminars available?

Lisa:They are available. Before 2008, we used a chat room for seminars so we had written transcripts, but now one can hear 2008’s workshops directly from a computer, at iTunes, or on a CD.

ArthriticJoints:  I know many of us would love the opportunity to go to a 5-day conference.  However for many of us with arthritis, it is just not possible.  Things like traveling, finances, sitting that long, etc., are just too difficult, so this is an ideal solution.

Lisa: Isn’t it?  We started our virtual conference years ago, but now with the economy more companies and organizations are making this a popular trend.

ArthriticJoints:  Tell us why you started Invisible Illness Week?

Lisa: For a few reasons. I began Rest Ministries in 1997, a Christian organization for people who live with any kind of chronic illness or pain, because I saw the need to connect with others who are going through a similar journey in their life. We are also the sponsors of Invisible Illness Week. I witnessed a lot of people who were very bitter and frustrated because they felt so alone and invalidated in their pain. Some people even had spouses who questioned whether the illness existed at all.

I also saw many family members, caregivers, doctors, churches, etc. who wanted to reach out to people with illness, but they said all the wrong things. Eventually they distanced themselves from their loved ones because they just
did not understand illness or how to respond to it.

The fact that illness and pain is invisible to see can make it hard for healthy people to understand.  Those with illness can easily become bitter when their loved ones believe it is being exaggerated. It makes for a sad situation all
the way around and I thought communication could be a helpful first step.

ArthriticJoints:  People suffering from various forms of arthritis are all too familiar with that situation.

Lisa: Even those of us who cope rather well with our illness on a day-to-day basis can still have moments of frustration. We may park legally in a disabled parking spot and we get the look from someone walking by. A friend may ask, “So are you all better now?”.  People do not always comprehend the difference between being sick and being chronically ill.

ArthriticJoints:  So this is what made you decide to start Invisible Illness Week?  To start some communication about these different issues and emotions?

Lisa: Yes, I wanted to bring people together to encourage one another.  It really does not matter what illness we have, where we live, what age we are, how long ago we were diagnosed, etc. The fact that most of our illnesses are invisible and not seen by people gives us a lot more in common than most of the physical symptoms our specific illnesses ever could.

Tune in tomorrow for Part 2 of our interview with Lisa Copen of National Invisible Chronic Illness Awareness Week.

Looking for a Summer Camp for Your Child?

If you have a child of school age, you are probably inundated with information about summer camps.  But what do you do if your child has arthritis?

Many camps have activities that are just too much for a child with arthritis.  Instead of having your child feel isolated from the “healthy” group of kids at camp, try sending your child to an arthritis camp.

Arthritis camps are for children with arthritis and they have arthritis-friendly activities.  With about 300,000 children in the U.S. diagnosed with juvenile arthritis, your child may not know any other children with the disease (or any chronic disease for that matter).

An arthritis camp is a great way for your child to meet and connect with other kids who have some form of arthritis.  They will know they are not alone and have the support of friends going through the same thing.

 Check out this video about Camp Milagros, an arthritis camp in California:

If you are not sure if there is an arthritis camp close to you or within driving distance, check with your local Arthritis Foundation chapter.  They should know if there are any arthritis camps in the area. 

If there aren’t any camps in your region yet, then this is an opportunity for your Arthritis Foundation chapter to know there is interest in it.  You might even consider volunteering to help get a camp organized.

Will You Be Walking for Arthritis in May?

It is just about mid-April which means May is just around the corner.  You know what that means…The Arthritis Foundation Arthritis Walk is soon approaching.

The Arthritis Walk is typically held in May, which is Arthritis Awareness month.  The event is held in various cities and is a way for people with arthritis to meet and know that they are not alone.  It is also a terrific way to get more information from the Arthritis Foundation and meet arthritis-related vendors. 

If you are physically not able to participate in the walk, that is okay.  There are still ways for you to show your support.  You can cheer for those that do walk or even run.  You can volunteer at the walk or even make a donation to the Arthritis Foundation in honor of yourself or someone with arthritis.

Don’t forget dogs are welcome too!  They also get arthritis and suffer just like we do.  If your pooch has arthritis and is not physically able to participate in the walk, consider pulling your dog in a wagon.  Children with arthritis are astonished to learn that dogs can get arthritis too.  Your pooch may just make several new friends.

If you will be attending the Arthritis Walk in Lexington, KY on May 9, 2009, consider joining Team ArthriticJoints.com.  I would love to walk with you and hear your stories.  As a bonus, for every ArthriticJoints.com team member that raises at least $25, you will receive your choice of a free Arthritis Awareness magnet or lapel pin. 

If you are already on a team, then just stop by the Advocacy tent to say hello.  I will be volunteering there until the walk starts and would love to talk to you.

Good luck to all!

Join Team ArthriticJoints.com at the Lexington, KY Arthritis Walk

Join Team ArthriticJoints.com at the 2009 Arthritis Walk in Lexington, Kentucky.

On May 9, 2009, Team ArthriticJoints.com will be participating in the Arthritis Foundation’s Annual Arthritis Walk. We are inviting anyone that wants to participate to join the team. Runners, walkers and pets are all welcome!

Each ArthriticJoints.com team member that raises or contributes $25 or more will receive your choice of a free Arthritis Awareness ribbon magnet (left) or lapel pin (bottom). 

If you would like to support the event, but are unable to attend, please consider supporting Team ArthriticJoints.com through a general team donation.  100% of the donation goes to the Arthritis Foundation.  Every little bit helps to fight this disease! 

Show your support for those who have arthritis!  Let’s walk or run together!

Get Those Walking Shoes Ready!

It’s that time of year again!  Yes, you heard right.  It’s time to start thinking about the Arthritis Foundation’s 2009 Arthritis Walk. 

Those of you that have participated in the Arthritis Walk know that it is a great time.   For those of you that have not participated in an Arthritis Walk before, take a look at the video below.  It shows what you will encounter at the walk and why the walk is so important.

I really enjoy going to the Arthritis Walk.  You meet other people, children and pets that have arthritis.  You meet their friends and families that are their to support them.  You also meet various vendors that can answer your questions.  In years past, I have seen rheumatologists, chiropractors, representatives from joint replacement companies, health-related companies, animal hospitals, etc.

On top of all that, the Arthritis Foundation has tents for Arthritis Advocacy, general information, a children’s area with fun things to do and educational materials.

The walk is usually held in May in numerous cities nationwide.  Find the location closest to you. 

It only takes a few minutes to register.  If you register now, you have time to start a team, raise some funds and start preparing your body for the walk.

Stay tuned for upcoming posts on preparing for the walk.

Arthritis Walk…Going to the Dogs?

originally published 5/10/08

The Arthritis Foundation’s Arthritis Walk was held today for the Lexington, KY area.  I look forward to it because it is a place where you can meet great people, learn something new from one of the sponsors and walk for a good cause. 

I must say I had a great time today!  The participants, sponsors and volunteers were a joy to talk with, as usual.  The kid’s tent had activities and face painting and the Arthritis Advocacy tent encouraged participants to support the Arthritis Prevention Control and Cure Act (APCCA).  With all of this, it was a great morning!  However, my daughter seemed to think the best part of the event was seeing all of the different dogs.  She had to go around to each dog to pet it, always asking the pet owner, of course. 

I am glad that we took the time to do this because we learned quite a bit by talking to the pet owners.  Some of the dogs in attendance had arthritis and their owners were walking for them.  Some of the other pet owners were walking for themselves or someone else.  We even met some therapy dogs!

It just goes to show that arthritis does not just affect us humans.  Dogs get arthritis too!  So, bring your dog when you attend your local Arthritis Walk.  They will have as much fun as you will!

Learn more about arthritis in canines from the Arthritis Foundation.