I understand it is not an easy decision to make. There are benefits to getting out and meeting new people, even when we don’t feel all that great. But that doesn’t mean we should sit around at the party and explain to people how hard it is to have some fun. Would we want to make the effort to have a night without worries and then hear ourselves talk on and on about our aches? Be honest. Not necessarily, right? Even I get tired of hearing about my own aches and pains sometimes!

Here is an example of what a conversation could sound like.

As the holiday parties start to happen for Thanksgiving, Christmas, and New Year’s Eve, so does the dilemma of deciding if you are going to be honest with other people, or just let go and do your best to have a good time. There is no right or wrong answer and it’s different for each person and situation. But let’s look at it from the perspective that your intent is to have fun.

Do you want to go to this party?
Illness is not any fun, right? The whole idea of having a good time is to put on some shoes that do not include fleece inside of them and get out of the house for a couple of hours. If your intent is to have a good time, make a conscious decision to make choices that reflect this. You are not attending a counseling session, a support group meeting, or a place to have all your fears validated. Keep perspective and avoid having expectations of other people.

Faking it is not betraying yourself
Someone asks, “So, how are you doing? You look so nice tonight.”
How do you reply? “Pretty good, thanks so much!” or. . . “Well, I am obviously pulling it off, because I feel absolutely terrible, but I did my best to hide it.”

Too many people with chronic illness feel a huge quandary that if they do not explain all about how badly they feel they are two-faced. Just because you get to the party and look decent does not mean that you are in not pain. You may actually experience pain twenty-four hours a day, seven days a week. I personally know that choosing to have fun when you are hurting is a choice, and not an easy one! By choosing to not discuss this with everyone at the party, however, does not mean you are not lying, betraying, deceiving, or being invalidated. You are putting the pain aside as much as possible and having conversation with people.

Are you looking for a thrill or a therapist?
When we have a chronic illness it can be a natural tendency to want to talk to someone about what we are experiencing. But your friend’s holiday party it not the place to do it. Everyone there has their own challenges in life too, yet they are attending to have a light-hearted night, not hear about your aches and pains. It is not that they don’t care–they just don’t know you! And if they did know you and care, a real conversation, one-on-one, in a quieter place would be much more ideal than trying to tell your story over the loud music.

Don’t explain yourself
You may need a chair to sit down in. You may avoid food filled with gluten. You may not be able to drink alcohol. The medications before you came may be making you drowsy. You may only be able to stay an hour so you can function tomorrow. That is all okay. So, just do it! Find a chair, grab a non-alcoholic drink, excuse yourself by 10 PM. You don’t have to explain why you do what you do. If you are afraid of offending your host, explain a few days before the party that you may slip out early since you are trying to pace yourself, but don’t worry about what others think. Honestly, most of them won’t even notice.

If you open that can of worms. . .
So you did it, you mentioned your illness. Maybe it just slipped out or perhaps you were trying to explain to someone why you aren’t training for the Ironman triathlon like everyone else seems to be. Before you know it someone is telling you she sells this special water that would make all your pain go away, or that his mother’s neighbor’s daughter tried this special extract and now she has been able to stop taking all of her medication. It’s painful to listen to. It hurts. It makes you want to throw a drink at someone and run screaming from the room. But you opened up this can of worms by revealing you have an illness. Be polite and walk away as soon as possible. Go hide in the bathroom and take a few deep breaths. There is little you can do to change someone’s opinion so don’t waste your energy.

Be real friends with . . . real friends
“But all of this is so fake!” you may say. “I feel like such a fraud! I can barely walk through the room without limping, my back is killing me, I don’t even know why I came if know one here knows the real me!” That’s understandable. The “real you” likely is someone who deals with a great deal of chronic pain, doctors appointments, and side effects of medications. It is a juggling act to keep up with friends, career, family, an illness, and still have a social life. No one there knows about the rash that is under your clothes or that you can’t eat most of the food presented. That is okay. Real friends know the real you. This is an outing where you can get to know people and see if there is anyone you “click” with who you may like to become better friends with in the future.

What now?
Illness is a very intimate thing. To those of us who live with it, it can be the underlying foundation of our choices, attitude, and moment-by-moment moods. As much as we try to not have it define us, the disease fights to control us. For those who do not live with illness, however, it is a very personal topic. It is a problem to be solved–and maybe solved within a few minutes if they give you the right advice. They do not see illness as a lifestyle or as a filter for your priorities, but rather as a weakness, a surrendering you are making to something that has power over you.

Parties are meant to be casual, fun, and light-hearted. They are meant to be places you discuss the weather, sports, current events, and the Kardashians–even if it’s about how you refuse to talk about the Kardashians any longer. They are not a place where chronic illnesses can be discussed in a way that will make you feel better. People do not come to parties to be informed about health issues. If you bring it up, you likely will only be frustrated, not validated, nor shown the understanding or compassion you crave.

So, do you want to just skip the party? You may! These kind of get togethers can be seen as superficial gatherings where no one talks about anything important. If you feel that way, you may find more comfort in just staying home and inviting a friend over to watch a DVD. But if you decide to go, remember to do your best to put aside your personal needs and just choose to mingle and get to know other people. Who knows what they may be going through that they aren’t sharing! And if you can smile and have a conversation with people, you may find out who you have something in common with and form that real friendship in time.

Lisa Copen is the founder of Rest Ministries and she lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? at the Rest Ministries shop.

I give him a hug. It’s been nearly 3 years since I’ve seen this man, my cousin, who is like a brother to me. He used to give me rides on his motorcycle, back when we were young and carefree. Nothing in the world could hurt us.

We were in our twenties. Long conversations. Time. Before spouses, kids, illness.

We were poor. Philosophical conversations were cheap. . . yet rich.

Now I stop by his family’s new clothing store while I am in Oregon.

I’ve not even arrived, and I am disappointed.

I have few expectations.

His life is busy now. He’s distracted. He is rushed. Always stressed.

No time for talk.

Oh, how I’d like to just go for a walk. Ask, “How are you really?” and have you answer honestly.

Regardless of your circumstances, you now just say, “I’m fine.” You aren’t fine. I know you too well for that. But confiding in me would reveal too much.

It’s no one’s fault. It just is. It won’t always be this way.

. . . Right?

It’s a season. I just don’t like seasons that have eggshells to step around. We never had an eggshell relationship.

Once I was diagnosed with rheumatoid arthritis at the age of 24, he seemed to not really know how to talk to me. He looked at my blog once. He said, “Nothing I say is going to be right, so I can’t win. Why bother trying?”

It’s true. I don’t always know what I want to hear.

More often than listening though–I just want to speak.

When you have the rare someone who loves you unconditionally, well, you want to be able to share without conditions.

He doesn’t know how to respond to my illness, so it’s usually ignored. That should make me feel good–he treats me “normal.” But he’s one of the few people I can be the real me with–the un-normal one.

Small talk while children run through clothing racks.

My son resembles his son. His son resembles him at 13 years old. His son is the age he was when he became one of my best friends.

Were we ever that young?

He offers me a tortilla chip. A chair behind the desk.

“No thanks.” I don’t want to be wimpy. I don’t want to sit and miss out on the little bit of conversation there is.

The visit is over. It’s time to go. He gives me a hug.

Pictures snapped record our time together. But it wasn’t time. . . just a missed opportunity.

And this is weird, but there is an odd sense of frustration that my scars didn’t even get a chance to show themselves.

Why? Because they have changed me.

I want to show my hand scar and say, “Here are my new silicone fingers.” I want to point to my ankle scars and say, “Here are the scars from the flesh eating bacteria. So much has changed since I saw you last.”

I want him to know I am lucky (or blessed?) to still be here. He could have been standing at my funeral.

Am I selfish to need to be needed. . . just a little bit?

If he doesn’t see my physical scars, how can he understand how those scars impacted my soul?

He’s the kind of man I could call at 2 AM and he’d make sure I was okay. He’s said, “Call any time. . .” and I know he would answer the phone.

But I don’t have 2 AM crises-call-him-right-now kind of moments. I just want to reconnect.

I miss him. My brother. My friend.

“There is a time for everything, and a season for every activity under heaven: A right time to embrace and another to part.” (Ecclesiastes 3:1,5b, NIV, The Message)

I look forward to the season when we can talk again.

Lisa Copen is the founder of Rest Ministries and she lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? at the Rest Ministries shop.

Founder Lisa Copen shares how to get involved in this video. If you are unable to view the video in an email or RSS feed see it here: About 2011 Invisible Illness Awareness Week.

After much thought and prayer, Lisa has decided to not have a virtual conference this year. “To be honest, the conference takes a lot of time, my energy and money. It is an exhausting 3 months of preparation, follow through, and recovery for me,” Lisa shares. “At this time, I’d love to focus more on better meeting the needs of those here at Rest Ministries, such as the Summer Study, finishing up some Bible studies, and spending some time with my family.”

Lisa’s son is 8 years old and likely won’t be that interested in hanging out with his mom all summer for many more years. Invisible Illness Week, September 12-18th also falls between her husband’s birthday (9/11) and her own (9/19). “Over the years it’s become a time of sacrifice of my whole family, including my mom who flies down from Oregon to help me with my son and more,” says Lisa. “Right now, I am trying to focus on improving my own health, cutting back the prednisone, losing weight to decrease other health issues, and getting my rheumatoid arthritis under control.”

Lisa began seeing a new rheumatologist in March 2011, after experiencing the most painful 3 months January – March of this year, out of her 18 years with rheumatoid arthritis. “Just when I thought it couldn’t get any worse, it got much worse,” says Lisa. “It’s not about puffy cheeks anymore, it’s about being here for my son in ten years.”

But we are still having Invisible Illness Week! There will be tons of articles and guest bloggers, loads of great informative posts and tweets to share with friends, and ways to help the world understand that invisible illness is a very serious and isolating experience. The Invisible Illness Week web site will also highlight programs from the conferences for the past couple of years.

Watch the Rest Ministries sister site at http://invisibleillnessweek.com in coming weeks for updates and also sign up to get the updates so you are on top of all the happenings!

Hi, Sandy, I can hear the pain in your words. I am going to assume since you wrote to me you are asking for some kind of advice, so here is my best 2-cents.

Ask yourself, “What would the perfect response to my post be?” When we say we want people to “listen” and yet we are typing our posts out online, there are 4 ways people can respond. It’s different than having a friend who is sitting there beside us holding the tissue box.

[1] They just read it, send up a prayer, and since you don’t want advice, they choose not to post anything. This can seem like no one is reading your post, or if they are, no one cares enough to comment and encourage you.

[2] They write something simple like, “I am sorry you are going through a difficult time. I will pray for you.” This can be interpreted, if one chooses, as being “blown off” and not being given enough of one’s effort or time to write a personal response. Since these are people who live in just as much pain as you do, I am sure you can understand how limited energy and physical time spent on a computer can be. They often feel it’s best to respond with something, then with nothing at all, even if it’s brief.

[3] Someone may respond with, “I understand what you are going through. Here is how our stories are unique . . .” and then they share their story. This can be interpreted as it being “all about them” and not you or your situation. But they are often trying to find a common thread and share how they made it through a tough time, in hopes that it will encourage you.

[4] They give advice. They want to help. They don’t really like options 1-3 above, so they’ve chosen to try to help you through this. This can be interpreted as them having it more together than you, or as if they are trying to fix it for you with a “quick fix.” They usually have the best of intentions.

As you can see from the 4 options above, all can come with the best of intentions, and yet they can all be misinterpreted as something else if we choose to see it that way.

Or, “I’m sometimes sensitive to people giving me advice, yet I am desperate enough that I am looking for suggestions on how you think I should handle this situation.”

Support groups are kind of like our families. No one is perfect, everyone is hurting. Even those we love the most will not always respond the way we’d like. I am sure I don’t always respond the way some people would like. But I do the best I can. That is all I can do.

Most of us are looking for a place where our needs can be met, rather than looking around to see who has a need where we may be able to help. I know that is can be exhausting to reach out to others when you are not feeling well, but I began Rest Ministries in 1997 and have reached out to others nearly every day since, even when my pain level was at its worst. I try to live by Proverbs 11:25 “He who refreshes others will himself be refreshed.” I can assure you that this really happens!

Next time you feel a bit frustrated over the lack of a response, reach out to another person just because. Do it for the Lord. You may not even get a response. It may surprise you that some of the newsletters Rest Ministries sends out are opened by just 25% of our subscribers. Hundreds of devotionals have ZERO comments. But eventually we hear from many, many people, that even when they were silent, God was encouraging them through Rest Ministries. I hope this encourages you!

Lisa Copen is the founder of Rest Ministries and lives with rheumatoid arthritis. To increse communication between churches and individuals, see her new “Beyond Casseroles” DVD.

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