I’m not comfortable saying, “Hi there! No offense, but your perfume makes me gag! No, I can’t sit next to you!” If I were king, I’d lump perfume with cigarette smoke and ban it in public places! Sorry you perfume lovers– nothing personal. I am just trying to breathe and be healthy.
–Semi-silent sufferer, attending church on-line

Dear Semi-silent sufferer,

You are definitely not alone! Although many assume this is rare, unfortunately, approximately 14% of Americans (knowingly) have MCS.

I also live with Multiple Chemical Sensitivities (MCS). The term, “sensitivities” is not a good description of what these chemicals do to me. I get an instant, disabling migraine, vertigo, weakness or paralysis in my limbs, swelling of the brain, spasms in my spinal cord, nausea and horrific pain all over.

What’s more, anyone can develop MCS by way of every day use and exposure to chemical fragrances and/or a sudden large exposure. Continued exposures often lead to increased sensitivities.

In fact, a large portion of the population gets some sort of adverse health effects to perfumes or other synthetically fragranced products. Many do not make the connection to their headaches, fatigue and/or asthma type symptoms. By the time most people realize what is causing their symptoms, they are out of control and often debilitating and isolating.

It is good that we don’t tell others that their perfume makes us gag or sick, because such use of words often cause people to take it personally. However, we should be able to be honest and do what we have to do to not be exposed.

We can do so by simply saying, “I am so sorry, I would love to sit next to you, but I get bad headaches from perfume.” That way the symptom is from the perfume and not them and it is not tied to a visual of us turning our noses up at them.

Another way is to share resources with them. My husband is the Founder and President of a couple of great non-profit organizations that provide pamphlets and information that can be shared with friends, family, employers and churches.

• Why Go Perfume Free to Church? Where Is God Ministries
• Is Your Church Making People Sick? Where Is God Ministries
• Why Go Fragrance Free? Invisible Disabilities Association (IDA)
• Creating a Fragrance-Free Zone (Workplace). Invisible Disabilities Association (IDA)
• Interview with Dr. Anne Steineman (Audio). The Cleaner Indoor Air Campaign (Launched by IDA)
• Letter for Churches. The Cleaner Indoor Air Campaign (Launched by IDA)
• My Invisible Disabilities Community (social network for people living with illness, pain and injury – with an MCS Group)

I am so sorry you are living with this, as it can be extremely isolating. I hope you find these resources helpful!

Sherri Connell has used her personal tragedy of chronic illness and pain to bring awareness and to be a voice for people who are living with debilitating chronic illness through the Invisible Disabilities Association with her husband, Wayne.

Related articles

• What Do You Do About Co-Workers’ Strong Perfume? (bellasugar.com)
• More People Are Making Their Own Natural Perfume (bellasugar.com)

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.

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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• How To Share The Gospel In Your Daily Life – Share You Hope! (chronicillnesspaindevotionals.wordpress.com)

I have a friend who I’ve known for years.  We used to go out partying before my diagnosis, but now I’ve really become grounded in my faith, because God is the only thing that has gotten me through. She keeps saying she “knows the real me” and I cannot possibly be satisfied with this life I have now.  Whenever I share something I’ve learned while living with illness or about anything good in my life, she has something negative to say about how much I am missing out on in life because of my illness. I care about her, but I just don’t know if I can continue to be around her right now if she keeps this up. – Kelly

Hi, Kelly,
Do you know someone who is the same now as they were 30 or even 40 years ago? They love to complain and stir up trouble for everyone else. What they don’t realize. . . or maybe care about is the fact that most people change over the course of a lifetime.

It’s unfortunate because most of us try to improve our lives as we get older. We try to forgive and forget and move on with our lives but there’s always going to be that one who is so unhappy with their life that they can’t stand to see anyone else doing better than them or enjoying their life.

For instance, I drank until I was 34 and I am happy those days are over with. It has been almost 13 years since I’ve let anything or anyone control me but there are others who are still trapped in drugs and alcohol that want to drag you down to their level.

They want you to be as unhappy as they are and you know what? It’s not gonna happen. You see, I’m not proud of the way I behaved when I drank but there are others that were instigators and troublemakers who caused all kinds of problems and they still have that mindset even today. It’s very sad because they live in the past and they want you to stay there. . . buried in misery just like they are and that’s all they can think about.

If you have one of these people in your life–someone you don’t ever think about unless they come knocking (beating) at your front door threatening you and whining that you’ll never change–then just do what I do: give it to God.

There are always going to be those who will try to drag you down and make you feel bad because of something you said or did 20 years ago. Let them know you aren’t the same person since Jesus took control of your life. Don’t let them shake you because you are grounded in Jesus Christ.

When they say they know the real you tell them. . . “No,  you are so stuck in the past that you can’t see the change all around you” and that “No, I choose not to whine and cry and live in the past as you seem to have chosen to do.”

You are a new creation in Christ and if you had a past you aren’t proud of then give it to God. No matter what your past is, give it to God and learn to love yourself again. Once you’ve changed as I did so many years ago, don’t let anyone convince you that you are less than a beautiful and wonderful being created by the creator of the universe Himself. . . God Almighty.

Thank you Jesus for taking care of those who want to suppress us and threaten us and keep us wallowing in guilt and despair. Help those who still live this way and help us to keep our eyes planted squarely on you and your wonderful name.

God Bless, Dave

David Brown has been writing poetry and short stories for his own enjoyment for more than 40 years. Recently, he decided he had some things he would like to say to the rest of the world and has been writing non-stop ever since ~ thus the culmination of his three-book series Love Notes From Above. A husband, father and born-again, spirit-filled Christian he offers scripture-based advice and insight on some of life’s toughest topics based on his unique perspective gained through experience on this journey called life.

I have been married for four years and have multiple sclerosis. My husband and I have been trying to conceive for some time and it’s not happening. I think I am capable of being a mom, despite my illness, but it’s making me nervous to see the clock ticking–and for those of us with illness, it ticks a whole lot faster! I don’t want to grow bitter about not getting pregnant yet, but my friends are having kids, doing family events, and now, not only do I feel ousted because my illness slows me down, but I am just not at soccer games and Chuck E. Cheese. How do I cope with all these mixed up feelings?

Leslie

Leslie,
My heart aches for you. I remember my own similar journey for years back in the late nineties until the day our son was born and we adopted him in 2003. And yes, it really did feel like a long journey! Like you, I wasn’t sure if God was saying, “No” or “Wait.”

I was recently asked me to write about infertility and chronic illness and it took me awhile to be able to find my voice on this topic.

I had just come from a roller coaster ride of emotions:

• First, my husband and I did our research after seeing our son struggling and gained an official diagnosis for him of ADHD (a diagnosis we are glad we’ve discovered!)
• I had also talked with two women who’d poured their heart out about infertility issues and chronic llness;
• I had the most amazing family time with my son’s birth-grandparents and his little brother who lives with my son’s birth mom (Joshua’s birth mom was sick so couldn’t come.);
• My “story” about infertility and illness came out in Janet Thompson’s new book, “Dear God, Why Can’t I Have a Baby?: A Companion Guide for Women on the Infertility Journey” (An amazing book I strongly recommend if you are on this detour in life.)

What could I share? I was a mom who was looking at her own weaknesses, not even sure if I had dealt with infertility, if the infertility was due to my use of rheumatoid arthritis medications, or I had just “needed more time.”

As Mother’s Day approaches I see the many women who long to be a mother. And why does it seem the most kind and nurturing women are the ones who seemed to fill the quiet valleys of infertility? Everything can seem personal. . . from wondering why the teenage girl who lives next door is pregnant and miserable about her situation to the woman who is in a marriage she would like to abandon, but she’s staying because she is pregnant. Every abortion suddenly feels like the death of a dream that we have of our own child. How could they?

Women who feel God has given them a craving for motherhood wonder how and when it will ever be fulfilled. For those of us with chronic illness we wonder if we crossed signals with God, because we all know with each passing day our health is getting worse, and therefore, harder to care for an infant. We don’t have the time that others mom have because we are in a race to be mommy before we lose more abilities.

What would I have wanted to hear when I was on this infertility detour? It sure was not, “give it time” or “if you just relax it will happen.” I would have wanted to hear God’s voice somewhere in the middle of the opinions of people who told me I was silly to think I could be a mom. I would have wanted to know God was in control.

And I did. I remember praying, “Lord, I need a baby and if I can’t have a baby, I don’t want to get depressed or obsessed with it. But I need a purpose while I am waiting.” And what He gave me, through a calling and resources, is now Rest Ministries.

God is in control. I don’t ever wish to imply I can speak words for God, but below is, if I had tried to write out what God was telling me during this time, I would have written. I hope you can use it and adapt it as your own. I don’t presume to know the answers to your situation or what God has in store for you, but I do know He can make miracles out of whatever we may perceive as messy situations in our life.

Lisa

Dear one,

I know your heart. And I know how your heart hurts. You rise each day and put on a smile. But underneath that smile I know you imagine how your life would be different if your dream of being a mom was fulfilled. Would you awake at 5 AM, but with joy instead of anxiety? Would you go to mommy-and-me meetings, instead of talk of your illness on the computer?

In the deepest parts of your heart I understand that you’re beginning to wonder if you have done something wrong, made some mistake, or overlooked an opportunity, to cause your heart’s longing to not be fulfilled. You are wondering if you should have taken that medication, not taken the medication, drank that Diet Coke, had that treatment, and then I would have answered your prayers. You are looking for where you have messed up, so you can fix it and be with child. You have not made mistakes, child, where I was still not in control of the outcome. I have never left your side, and My will will come to pass.

You hear girlfriends complain about how their children are driving them nuts and you bite your tongue. You try to make plans with them, but they are always busy. They have entered into “Parentland” and you can only get a temporary pass for a few hours to babysit.

Child, I do know your longing. I hear your cries; I see you. I have not turned away or ignored your pleas. I see the pain that pierces you when another friend announces her pregnancy. I see you try to hold back the tears as you walk through baby departments to buy a gift for another baby shower. I see your faith when you buy a little baby gift for yourself to hide away and call it your “mustard seed.”

Do not stop talking to Me. I know you may be tempted to allow bitterness and frustration to seep in. Many people do. But this will only lead to a hardened heart and take you farther away from the person I am designing you to be.

Remember, your hope is different because you know me. Your hope should be in Me, not what I can give to you. The world hopes for things and situations. Put your hope in Me.

You can have peace in the midst of turmoil because of My presence. So don’t turn from Me, as I am the only one who can fill that hole.

Not a moment of your misery is being wasted. The closer you draw to me, even when your prayers are not being answered, the more opportunities I will provide for you to find this hope and refreshment, even in the middle of your pain.

I know it is hard to imagine, but I have great plans for you. Remember how when I told Abraham of his children I would bless him with? His wife Sarah laughed. Even in the most unlikely of situations I can make things happen that are beyond your wildest imagination. In fact, it is in the impossible, I most delight in making miracles happen, because then you can share your joy with the world about how you saw Me at work in the crevices of your life.

Hang on, dear child. Stick by my side, as I have promised to be by yours.

Your Loving Father,
God

I have read in some places online that many people who have a chronic illness were abused in their childhood. I know many were not, but I am one of the ones who was. I will never know for sure if the illness I have was “caused” by the stress of me trying to cope with my history, or the bitterness it caused in my heart eating away (literally!) at my body, but I know I need to figure out a way to let go of the bitterness. My father is no longer on this earth and my mom and I have a very weak relationship. I am not sure I want more. But where do I go from here?”
Belinda, who doesn’t want to be “Bitter Belinda”

Belinda,

It’s true that studies have shown that sometimes chronic illness can be more prevalent among adults who suffered abuse as a child. Yet, one does not need to have suffered this to have an illness. I am so sorry for the experiences you have had, endures, and how it has followed you into your adulthood.

My friend, Linda Newton, wrote about forgiveness in her book, “12 Ways to Turn Your Pain Into Praise: Biblical Steps to Wholeness in Christ” and I asked her if I could share her recent excerpt on “The Healing Power of Forgiveness.”

LINDA NEWTON Answers– Have you ever had to forgive someone who you felt didn’t deserve to be forgiven? As a pastoral counselor for the past twenty years, I have encountered many damaged people who struggle to forgive because they don’t feel like their offender deserves to be let off the hook? After experiencing chronic abuse at the hands my own mother, I can understand those feelings. I am grateful that Lord has strategically led me on a path to forgive. If you are struggling to let go of damaging offenses, perhaps these insights will help you as they have helped me.

Not long after I identified the bitterness that was holding me hostage, a gentle-hearted lady named Iris came to share with our small group at church. Iris opened up about the sexual abuse she sustained from her natural father and declared, “Forgiveness doesn’t make your offender right; it just makes you free.” While that profound statement started me on my path out of bitterness, forgiving my mother for all of her unfair abuse seemed like too much for God to ask of me. When it came to whole-hearted forgiveness, I was skeptical but seeking, so I opened up the Bible to see what God’s Word had to say.

In Matthew, I read the words of Jesus, “For if you forgive others their trespasses your Heavenly Father will also forgive you; but if you do not forgive others, neither will your Father forgive your trespasses” (Matthew 6:14-15). How harsh, I thought, until I read what Richard Foster had to say about this verse. In his book Prayer: Finding the Heart’s True Home Foster asks, “Why is this? It is not that God begrudges His forgiveness, nor is it so hard to get God to forgive that we must demonstrate good faith by showing how well we can first forgive others. No, not at all.”

“It is simply that by the very nature of the created order we must give in order to receive. I cannot, for instance, receive love if I do not give love. People may try to offer me love, but if resentment and vindictiveness fill my heart, their offers will roll off of me like water of a duck’s back. It my fists are clenched and my arms folded tightly around myself, I cannot hold anything.”

“But once I give love, I am a candidate for receiving love. Once I open my hands, I can receive. As Saint Augustine says, ‘God gives where He finds empty hands.’”

In their book, Mood Swings, the authors Arterburn, and Minierth offered even further understanding.

“Choosing not to forgive allows others to continue to abuse as we endlessly relive their offenses.” They were right. I was continuing the abuse as I ruminated about the resentment over and over again. I learned in recovery that “Resentment is me drinking poison and hoping you die.”

When I stopped drinking from the toxic well of bitterness and self-pity, I had room in my life for healing and peace.

On my journey to forgive, I recognized that I had to clear the air with God and forgive Him too. When I was honest, I recognized I was angry at Him for not giving me an easier life. My resentment with God was subtle. After all, He’s God. But it kept me from moving forward in my Christian walk. When I let Him off the hook, I stopped distancing from the only One who could truly help me. Only then was I ready to realize all my pain had taught me.

Learning to forgive taught me to recognize God’s restoration. That was illustrated for me as I sat in my office listening to a lady from church share her story. Sarah Ann’s life of abuse and neglect made my story sound like a picnic in the park by comparison. As we cried and prayed together, she looked up from her Kleenex(R) and made a remark that stabbed me awake. Sarah Ann said, “I’m so glad you’ve had pain in your life, Linda, because I know that you can understand what I’ve been through. I’ve never been able to share any of this with another Christian before, much less a pastor’s wife. But I can tell you all of this crazy stuff because I knew you’d get it.”

After she left, for the first time in my life, I got on my knees and thanked God for my pain. I thanked Him for the empathy I had for Sarah Ann and so many others because I did get it. And the blessing of helping people access the abundant life God has for them, fills my tank to overflowing. I wouldn’t trade my pain for easy street because of all it has taught me. Iris was right; finding forgiveness has set me free.

Adapted from 12 Ways to Turn Your Pain Into Praise: Biblical Steps to Wholeness in Christ, Linda Newton,

Linda Newton’s contagious enthusiasm and engaging storytelling brings God’s Word to life. With authentic transparency and down-home humor she shares how God transformed heartbreak in her life into hope from her book 12 Ways to Turn Your Pain Into Praise published by Warner Press. She has currently written 2 new devotional books, Better Than Jewels: 31 Days of Biblical Insight for a Woman Seeking God based on the book of Proverbs, and Sapphires From Psalms currently on sale now. For more encouragement read Linda’s blog, “Savvy Choices.”