Through my chronic illness, I have come to realize how crucial it is to have faith.  When most people think of the word “faith” they think religion, but there are so many other aspects to keeping faith alive in your life through dark and difficult times.  In fact, the word “faith” is merely defined as “confidence or trust in a person or thing.”

I have been blessed with always having a tremendous faith in myself.  Faith that I have the ability to get through anything no matter what life rolls my way.  But oddly enough, I believe my faith in myself stemmed from my childhood traumas.  As a child I was forced into the role of the third parent in my house.  As painful as it was it gave me an inner strength — a knowledge that I was capable of getting through anything if I just believed in myself.

This inner strength and faith in myself was strengthened as I battled depression.  Living for three years with intrusive thoughts on hurting myself or ending my life and yet not acting on them, save three minor occasions, gave me the faith in myself that I could get through anything if I was determined enough.

So when my illness struck, I’ve always had the faith that I can get through this as well.  Though it isn’t always easy… in fact it hardly ever is, I have kept the faith in myself that I am a strong enough person to deal with whatever I find in front of me.  And that faith has gotten me through the endless doctors appointments and tests, the six and half years of searching for a diagnosis, the prolonged hospitalizations, adjusting to life in a wheelchair, and the daily struggle to keep a positive attitude despite my pain and other limitations.

I have also learned how important it is to keep faith that things will get better, that I will get better.  I have to have faith that I will find a treatment or even a cure that will allow me to live a more normal life again in the future.  This faith that things will be more than okay — faith that things will get better sustains me during my darkest hours.

And then there’s faith that I have in others.  I don’t keep my illness private.  Through this blog, through the people I meet and share my story with, I share my journey with the world.  And I have to have faith in people.  That they will understand.  That they will be there for me.  And though I sometimes find myself disappointed, overall I find that when I put my faith in others they rise to the occasion.  It’s as if they were waiting for me to put my faith in them.  Waiting for me to put my blind trust and confidence in them, and they respond by being there for me in more ways than I can count.  And I am so blessed and grateful for this.

Finally there is the ultimate faith.  The kind you have despite the lack of evidence or proof.  Faith in God.  Though I try to keep this blog secular, I feel I would be amiss if I didn’t share this part of my journey.  Though I was raised Reform Jewish, it never really resonated with me.  It is a beautiful religion, but through it was hadn’t found the close connection to God I’ve so desperately craved especially in the last few years as I’ve struggled with my illness.  I’ve tried out several different churches over the years.  I was going to a Universalist Unitarian church for a while, and though I loved the people and how open they were, I still didn’t find what I was looking for in terms of a close and personal relationship with God.  Finally, two Sundays ago I went to a Church of Jesus Christ of Latter Day Saints or Mormon church with a friend.  There I finally found what I had been searching for.  I have found the faith in God that I had been seeking.  I realized I had it all along.  I’ve prayed for a long time to find this closeness to God that I now finally feel, but I never expected to find it through Christ, and yet there it is.  And as surprising as it is to my friends, family, and even myself, I am getting baptized in a month.    And so I am really excited to embark on this new journey of faith.

Faith is so important no matter what form it takes.  When you are suffering physical pain all the time what else do you have to turn to but some sort of faith that things will be okay.  Whether it comes from within or from others or from God, faith is what has sustained me through my battle with chronic illness.

Freedom is something that is often taken for granted. Freedom comes in a lot of different varieties and all are often taken lightly until you don’t have that freedom anymore.  Until I got sick I took so many very personal freedoms for granted.  I especially took for granted the freedom to move around  where I want unassisted by a wheelchair and the freedom to drive to any place I wanted.

Now that I can’t walk and I can’t drive, those are things that are no longer taken for granted.  And now I am constantly searching for ways to increase my freedoms once more.

Soon I will be getting a specially designed wheelchair that will allow me to be up out of bed in it without being in pain like I am in my current wheelchair.  However, this new wheelchair can only be transported by a wheelchair accessible vehicle, something I cannot afford.

So today my sister Danielle started what we are calling my Freedom Drive – a fundraiser to help me buy a wheelchair accessible vehicle (as well as help with my other medical expenses).

Please consider donating, and, if that isn’t an option, please share this link with as many people as you can.  Please post it to Twitter, Facebook, and MySpace,  email it to your friends and family, or even blog about it!  Thank you so much for all your help and support!!!

http://www.giveforward.org/freedomdrive/

Join the Facebook Freedom Drive Fan Page!

Lisa Copen joins us today for an interview as the founder of National Invisible Chronic Illness Awareness Week. This year it is September 14-20, 2009 and there are lots of 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 Lisa here at my blog, Novel Patient.

LC: 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.

What makes you a “novel” (or unique) patient?

Actually, I don’t think I am unique at all. I see people every day who have experienced more disabilities, surgeries and medical complications than I have. Ironically, until last year I’d never spent an evening in the hospital, and then I ended up with the flesh eating virus in an ankle wound and my first stay was 7 days! It was quite an experience and even though it was not fun, the months afterward dealing with the IV antibiotics and home health care, etc., it certainly provided some new insight and an appreciation for people who go through this months and sometimes even years of that, like your self.

If anything, I guess I would say that I tend to become obsessed with new projects rather than getting depressed. My personality just won’t let me sit still long, so even when I am feeling terrible, I’m trying to figure out what I can do that is constructive. Even in the hospital I was taking notes for future articles and writing down things the medical staff did or said that I wanted to remember. I stay busy as a coping skill so when I really can’t “do” but just have to “be”, it can be hard to not feel my sense of purpose slipping away.

Speaking of staying busy, tell us about National Invisible Chronic Illness Awareness Week. That’s quite a mouthful!

LC: 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 affects of living with a disease that is not visually apparent. Through programs and resources, we seek to recognize the daily challenges of more than 100 million adults and children who live with invisible illness.

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.

Explain to me what a virtual conference is.

LC: 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.

That sounds amazing. So, do you have last year’s seminars available?

LC: 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 tunes, or on a CD.

I know many of us would love to opportunity to go to a 5-day conference but ironically, because of our illness, things like traveling, finances, sitting that long, etc. it’s just not possible, so this is an ideal solution.

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

Tell us why you started Invisible Illness Week? What made you see this as necessary?

LC: For a few reasons. I began Fest 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 lots of 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 didn’t 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. And 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.

I have experienced this kind of thing before, and I know many of my readers will find it sounds very familiar.

LC: It does, doesn’t it? 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 don;t always comprehend the difference between being sick and being chronically ill.

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

LC: Yes, I wanted to bring people together to encourage one another. I saw people bursting with joy when they had every reason not to and I knew they could encourage others.

It really doesn’t 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 that most of the physical symptoms of our specific illnesses ever could.

What illness do you live with, Lisa?

LC: Rheumatoid arthritis is my main disease I struggle with. I was diagnosed in 1993 at the age of 24. A few years after my diagnoses 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 that 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 now, but it’s hard 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 I’ve been in a new season this last year and have many surgeries in the near future.

I heard that you type with just a few fingers.

LC: 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.

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 her 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.

Some people call their local newspaper and share about the week, their support group, or their illness experience. Since it’s listed in Chase’s Annual Events journalists can tie in the personal story with the annual event.

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: 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 1600 people who have joined our cause on Facebook. And we have some amazing prizes we are giving away to people involved in these different outreach areas.

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?

LC: 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 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.

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

LC: 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 stand 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.

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: 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.”

Thank you again so much for joining us today, Lisa. And 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.

LC: 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 hosting me at your blog today! I hope all of your readers will visit us at National Invisible Chronic Illness Awareness Week and let your friends know about our free 5-day virtual conference! We’re going to have a great time!

My dad and I REALLY don’t see eye to eye when it comes to my choices of treatment.  He has a very hard time accepting that as a 25 year old woman they are in fact my choices and not his.  My dad is a staunch believer in some pretty radical (and some not so radical) alternative medicine treatments.  He believes that all my doctors are wrong because they are from a western medicine perspective.  He doesn’t even believe in my diagnosis.  So he sees my choice to follow conventional treatments in effect killing myself.  His words not mine.

This makes it VERY difficult to have a relationship with him since right now my health is such a big part of my life.  And he won’t agree to disagree.  I feel at such a loss at what to do.  I don’t want to cut him out of my life, but I don’t need his constant negativity about my choices.  I’m the one who is sick.  I shouldn’t have to take care of him and his anxieties as well.  But that’s basically been my role in my family my entire life.

As much as I wish my dad will change, I don’t believe he ever will.  I don’t know what that will mean for our relationship going forward, but it makes me sad that my illness is driving another wedge between a person I love and myself.  It happened with so many friends who just didn’t want to or couldn’t or didn’t know how to deal with someone their age being chronically ill.

People have such strong and personal reactions to someone else’s chronic illness that I think they easily forget what that person is going through.  My dad is afraid of some horrible side effect occurring from a medication I’m on, but he never acknowledges MY fears.  He tells me how he is sooo worried about me every day, but what am I supposed to DO with that?  Does he really expect me to be the one to comfort HIM?!

Just because I put on a brave face and do very best to be optimistic and make a life for myself despite my illness doesn’t mean I don’t have needs too.  It doesn’t make the intense lonliness and isolation or the fears for my future or the daily physical pain of my illness any less.

Buy my dad doesn’t see it this way.  So he continues to drive the wedge in deeper.  And it hurts.

Sometimes people just don’t get it no matter how much you try to explain.  And as frustrating as it is, there is absolutely nothing you can do to change them and how they think about you.  The thing you can change is how you deal with the situation.

I have a family member who was over for dinner the other night.  She is getting older and is no longer really able to grasp a lot of what is going on.  And no matter how many times someone explains my health situation to her she doesn’t seem to get it.  So the other night when she was over, she made some comments that really upset me.  One hangs in my mind even now, like an itch you just can’t scratch.

“So get up and walk.”

I’m currently in a wheelchair.  It’s a relatively recent thing.  My arthritis has gotten to the point where its just too painful to stand.  I’m hoping that this new medication I started will reverse the situation, but for now I’m stuck rolling along.  I’m not really okay with it yet.  It’s a sensitive subject anyway.  I already feel like the world is judging me, even though for the most part I think it is really just me passing unfair judgment on myself.

And then my family member comes over for dinner and makes several comments like that.  It took all my self control to not respond.  In the past, I would have tried to explain the situation to her again.  But I know that she’s just not capable of understanding.  It still hurts, but it would have been worse to get into it with her and still not get her to understand.  Again.

So this time I bit my tongue and said nothing.  It still hurt.  Made my eyes burn with tears I cannot cry.  (One of my autoimmune illnesses reduces my ability to make tears.)  But it was a small triumph to refrain from trying to justify myself to the world.  I intellectually know that I shouldn’t have to justify my situation to anyone.  Easier said than done.  But I started by not doing it even though I wanted to so badly it made my chest ache.  Maybe someday I will get used to not rationalizing my life to people who no matter what I do just won’t ever get it.  And hopefully that habit will translate to my emotional needs and I won’t feel the impulse to do it anymore at all.

After all some people just won’t ever get me and my situation and that is their problem, not mine.  I’m the one who has to learn to live with these obstacles, not them.  But that is a whole other story…