Is Living With Illness Choosing to Give In?

Lisa Copen

Nearly one in two people live with an illness, and most chronic illnesses are invisible. Conditions such as chronic fatigue syndrome to diabetes rarely have visual side effects that people can see. It creates a challenge for those who live with invisible daily chronic pain, symptoms, and side effects.

For example, though I look fine on the outside, I have lived with rheumatoid arthritis for 18 years. It has been degenerative, despite the best of medical treatments. Recent tests have revealed that I have shoulders that are so disintegrated it’s amazing they still work, knees full of pieces of bone and old blood clots, and osteoporosis.

I have started seeing a new rheumatologist who I hope will more aggressively treat my disease and slow down its progression. I am 42. I told my physician, “My son is 8. I need at least 10 more good years. What can I do to make this happen?”

Despite the detours, I have had the opportunity to build a nonprofit organization of nearly 15 years, to serve those who live with chronic illness, through a Christian foundation of faith. Although I believe God still heals today, He rarely does it according to our schedule. In the meantime, there is a strong need for friendship and support.

Between my family and ministry, I have ample reason to get up out of bed each day and not allow my illness to define me.

I have never given in and allowed it to consume me.

But because I do not enter marathons, audition for reality TV show contests on deserted islands, or sign up for karate class, some people assume I have.

“You’ve just given in to your illness,” I have heard from both strangers and friends. “You need to fight it more.” This is often followed by their specific advice on what I need to do to “fight it.”

What defines “giving in” to your illness? There are a variety of ways that people who do not have an illness define the actions of those who are ill.

1. We are not using the alternative treatment of product that they sell that will make it all go away.

My husband was recently berated by a friend’s wife, “We are so mad at you guys!”
“Why?” he asked.
“Because you won’t try the water!” she replied.
Honestly, I’ve done my research and if I am going to go with a marketing scheme that promotes health benefits for just $200+ a month, it will be the chocolate one. I mean, who doesn’t like chocolate?

2. We are seeking health assistance from doctors or medical specialists.

A friend on recently posted on a social network that he cured himself of a disease by ignoring the “mumbo jumbo of doctors” and asking his dad for advice. He claims he “never gave in.” In his eyes, because I am seeing a rheumatologist with “MD” behind his name, I have chosen to give in. No one cares that my rheumatologist happens to have his own clinic about specialized medicine, and that has written books on the alternative treatments he uses with patients, in addition to Western medicine.

3. We are pacing ourselves.

Chronic illness uses up a great deal of energy and only the one who lives within the body knows what they can and cannot do on particular days. Sometimes we have to give it our best guess and make a choice, not positive if an event will cause us to be tired for twelve hours or four days. When we choose to not attend an outing we’d planned on because we are in deep pain, we frequently hear, “Oh, you are just giving in to your illness. You are letting it control you.” No, we had to make a choice and we did. Healthy people will understand this when they reach about age 80.

4. We are not where someone wants us to be spiritually.

We all grieve, we question, and we sometimes get depressed, regardless of our faith. But if these emotions are noticed by others they are quick to offer the spiritual version of “Don’t worry, be happy.” We are told that we are allowing the sin in our lives to get the better of us and it’s causing our illness. We are not praying consistently, or hard enough, or in the right way. One man recently told me that I needed to try a particular alternative treatment (that he happened to sell) and if I did not, then it was obvious I was just giving in to my illness and really did not want to get well … and that God knew that!

5. We are not doing physical activities that we are expected to do.

If you watch well known magazines written specifically for those with certain illnesses, even they are guilty of featuring people who have the disease but are still able to do extreme physical activities. A person with rheumatoid arthritis may run a 25-mile marathon and are quoted saying, “I chose to never give up.” I have chosen to never give up either, but I am blessed to get my feet into extra-wide diabetic shoes and walk around the grocery store. My own limitations, or those of one who uses a wheelchair each day, is not something that is a measurement of determination or stubbornness about our disease.

Each person who live with a chronic illness knows the daily difficulties in finding a balance between living his life in the fullest way possible, and managing his disease effectively at the same time. There will be many times that our choices do not make sense to people around us. When we hold back from a new treatment or a fun outing, we will be told we are “giving in” and letting our illness define us. And when we take a chance and stretch ourselves, we will be told we are not thinking things through or considering the consequences or risks involved in our choice.

If you live with a chronic illness, only you are capable of making the wisest choice possible based on many factors. If you love someone with an illness, be cautious in sharing your opinion about his or her decisions. If you are genuinely concerned, instead of offering advice, ask questions, such as, “I know you must have given a lot of thought to your decision to (fill in your blank here.) What was it that persuaded you?”

About the Author: Lisa Copen is the author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend”, founder of National Invisible Chronic Illness Awareness Week and Rest Ministries. She is a sought-after speaker who brings joy, humor, and hope, to those who live with chronic illness, from her own 18-year journey with rheumatoid arthritis. This article was formerly featured at the Huffington Post where you can read 40 comments.

Popularity: 15% [?]

What Does it Mean to Accept Your Chronic Illness Diagnosis

Lana Barhum

Acceptance is one the toughest things that anyone of us has to do. Whether we are accepting the loss of loved one, moving to new town because of a job transfer, getting divorced, or accepting that we have to live with sickness and pain, acceptance isn’t easy. With chronic illness, the sooner you accept your diagnosis, the sooner you can work on being healthy.

I know that this really does make much sense but from experience, I know that it is a process and it takes time and trial and error to learn to how to best live with chronic illness.

 

My diagnosis

When I received my rheumatoid arthritis (RA) diagnosis, I promised myself that RA would not win and I remember the feelings of fear, denial, numbness and skepticism. My emotions changed from day to day and even several times a day. Feeling hopeful or optimistic were a long ways down the road and acceptance–well, that was something I never thought would happen.

In the beginning, I promised myself that RA wouldn’t win but all that happened was that I became depressed even though I insisted to everyone in my life that I wasn’t. The only thing that kept me going was that I knew that my children needed me to be their mother and chronic illness didn’t change that. My new RA diagnosis felt like a death sentence and the information on the internet make me feel that the disease would disable and disfigure me in five years’ time and end my life in ten years. A few months after my rheumatoid arthritis diagnosis, I was also diagnosed with fibromyalgia syndrome (FMS) and the blurry reality of what was my life started to become clearer.

I had spent ten years trying to find answers and one day I had them. What I realized at that point was that I had the power to heal because I had already started to find out how by searching for and finding answers.

As a result, I started to educate myself and arm myself with information about rheumatoid arthritis and fibromyalgia that made sense. I sought support from others who were living with the disease and I knew that if I wanted to get better, I had to accept that a handful of pills weren’t enough.

Looking beyond the physical symptoms

I also looked at my life as lesson after lesson of patience, strength and survival. Having RA and FMS were the same as any other struggle that I faced in my life and they would probably be easier than some of those struggles. When I looked at my diagnoses as just another thing that made me who I was, I learned to accept that I had no control of what happened but I had control of the response as I had when other obstacles impeded my life.

The person that I was at that point in time was already prepared for RA and FMS and while it wasn’t easy or clear at first, I accepted RA and FMS in my life not because I wanted but because I had to.

Of course, it wasn’t easy to get to that point because living with an invisible condition (or two or three or more) isn’t that simple. And steroids, a lack of energy, physical pain, and weight gain can take a toll on you and blur your perceptive.

You lose a lot of friends and there are a lot of people who don’t understand but what the illness doesn’t control is how we respond, how we fight back and how we go on the defense against the war waging inside our bodies. The disease doesn’t get easy but we start to realize how exceptional we are to be able to overcome so much.

Why you should accept your chronic illness diagnosis

One you are diagnosed with any disease, invisible condition, and/or chronic illness, it will always be a part of your life and the sooner that you accept your diagnosis, the sooner you can learn how to live with your disease. It is also how you will cope and how you will learn to understand that your diagnosis isn’t a death sentence. The only thing that your diagnosis has to be is something you have to live with and once you accept it, you can learn how exactly you will do that.

Chronic illness is kind of like life with its all ups and downs but living with an invisible chronic disease is like life multiplied and so very complicated. It is never ending roller coaster of pain and emotions.

There is also about a lack of understanding amongst your family, your friends, your coworkers, and even complete strangers. It is about living life without knowing what tomorrow will bring and it is an emotional battle on a daily basis. Moreover, it is a bitter pill to swallow and unless you accept all these things, you will never be able to get past your diagnosis.

How you accept chronic illness in your life

In order to accept chronic illness, take a look at the advice you have received–pace yourself, manage your condition well, educate yourself, advocate for yourself, surround yourself with emotional support and don’t let the disease define you. This advice is your guide through the roller coaster of symptoms and emotional setbacks. The only thing that can prepare you for that next flare-up is experience.

There will be days where your pain and fatigue are under control. There will be days when you feel productive and that you are in control of your life and your body again. It will not feel like a death sentence forever. On the other hand, there will be days that it will feel like the disease is in control when you are in pain, you are tired and you can’t focus or get anything done. The disease doesn’t get easier but getting through those really bad days does get easier.

Make conscious decisions

As a long time sufferer, I have learned that there can be more good days by making good choices. You have to do all the right things like eating right, taking your medications, being active on good days, and resting on bad ones. It is a learning process like anything else in your life and the setbacks–they are part of life too. You can’t control the setbacks regardless of how well you plan and a flare-up can come on at the worst possible time.

All you can do is wait to feel better and you can’t always predict how many good days you will have so try not to overwork yourself because you don’t know when your next good day will be.

Accept that it’s not all in your control

Understand and remind yourself that a chronic illness is unpredictable. There is not much that you can do except to realize you have to adjust and adapt to the moments that the disease brings havoc to your life. While it doesn’t define you as a person, it can still define your life.

The best thing you can do for yourself is to accept that you have to be flexible to live successfully with your chronic invisible disease. The disease might be your new reality but learning to be flexible means that you accept chronic illness in your life not that you give up. Your life will never go back to “before your diagnosis,” but it can get close to it if you open your mind to what you need to do to get to that point where you can accept diagnosis in a way that means you don’t give up.

About the Author: Lana Barhum is an advocate for two online support groups, one for arthritis and the other for fibromyalgia. She was diagnosed three years ago with rheumatoid arthritis and fibromyalgia. She also works in the legal field and is a mother two very active boys. She has a blog titled: “Living Life As I See Fit” where she writes about living life with chronic illness.

Popularity: 13% [?]

How to Decide Your Career Future When Chronically Ill

By Jennie Krogulski

Most of us with a debilitating chronic illness, if asked, would admit that as we traveled along the journey of life, we never saw this train called “Limitations” coming and if we had, we certainly would moved heaven and earth to get out of the way. As children we dreamed of what our lives would hold and who we would be, encouraged by those who loved us to dream big and wide. But what do you do when the life you have so carefully been creating and carving out begins to fall apart around you because of your illness?

What happens when you are no longer able to hold down a job five days a week, so you go to four, then three, and then even two becomes too much.

I was there four years ago and it was the scariest and loneliest time of my life. After twelve years of being sick, I could no longer manage many of the simplest tasks of daily living, which included holding down a steady job. Eventually, my disease, which was undiagnosed at the time, progressed to the point that I was unable to hold my arms above my head for five seconds at a time or walk more than a few hundred feet.

However, mounting medical bills and household bills still had to be paid. After pushing my body to it’s limits—I finally conceded that I had no choice but to recreate my lifestyle and find a way to work from home.

While some may see this as a luxury, for many with chronic illness it is the only way we can survive. What and how recreating your lifestyle looks like will be dependent on many factors:

• Your current field of work: Is it suitable for a work-at-home environment?
• Your relationship with your employer: Are they flexible?
• The way your home is set up: Do you have room to work from home?
• Your financial situation: Do you have funds set back to start up a small business if needed?
• Access to equipment: Do you have a dependable computer/laptop, printer, phone, etc.?
• Your abilities: What are your talents, gifts, and skills that you could use to start a small business from home that would work with your physical limitations?

Once you have carefully taken all these factors into consideration, you can begin putting a plan into place that works for you and your family. As you recreate your lifestyle, the challenges you live with on a daily basis won’t go away—but they will become more bearable. When your body is wracked with pain, you can work in your pajamas propped up in a cushiony bed. Instead of sitting at a desk in an office chair all day, you can create a “desk” space around a sofa that is more comfortable with a laptop and a laptop stand.

I started transitioning into this change in 2005, and made the permanent lifestyle change in 2007 when I opened my business, Hilton Head Nannies. Having a chronic illness and living with daily challenges, pain, and limitations certainly isn’t the life I signed up for when I dreamed about my future as a child long ago. However, I am a firm believer that there is a purpose in every serious/chronic illness and a story to be told as God’s plan unfolds. I am still learning to embrace God’s plan for my life. Each day as I turn to Him and ask for His help in recreating my lifestyle, I am finding joy, peace, and hope that break through the disease and pain and make me dream like a child again.

God bless you as you pray about what He has in store for you! Jeremiah 29:11 says “For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’”

Jennie Krogulski resides in beautiful Bluffton SC, just off the coast of Hilton Head Island. She lives with Dermatomyositis, Fibromyalgia, Toxoplasmosis, Hypothyroidism, and an iron absorption disorder. Jennie owns Hilton Head Nannies, a national placement agency, and most recently started a social services agency—Lowcountry Family Connections. Jennie delights in spending time with family & friends, and being “Jen Jen” to the many children in her life.

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Who is Blogging About Invisible Illness Week? Here are Some Sites We Found!

Who is blogging about Invisible Illness issues and our special week? Here are a few sites we’ve found!

Invisible Illness Week 2010
By James
Invisible Illness Week is almost here again! Scheduled for the 13th-19th of September 2010, this is the 9th year – and it’s less than a month away! This year, there will still be online seminars, though not as many as in past years. … Headache and Migraine News – http://headacheandmigrainenews.com/

SocialWrkr24/7 : Eyes Opened Wider: Invisible Illness Awarness Week
By SocialWrkr24/7
I don’t think I talk a lot about my “invisible illness” here on the blog – but I know I’ve mentioned it a handful of times. It is easy sometimes for me to brush it aside because I like to consider myself in “remission”. … SocialWrkr24/7 : Eyes Opened Wider – http://eyesopenedwider.blogspot.com/

Watching The Waters: National Invisible Chronic Illness Awareness …
By Corey
National Invisible Chronic Illness Awareness Week: Migraine. September 13-19 is National Invisible Chronic Illness Awareness Week. I learned about this on another blog, and will be participating several times in the coming weeks. … Watching The Waters – http://www.watchingthewaters.com/

Oh My Aches and Pains!: Good Reads for the Weekend: Lots of Linky …
By SelenaIt’s that time of year again, time to celebrate National Invisible Chronic Illness Awareness Week. This will be my second year participating in this virtual event which is happening September 13 through the 19th. … Oh My Aches and Pains! – http://www.ohmyachesandpains.info/

Sheryl Aronson: Invisible Illness Week
By noreply@blogger.com (Sheryl Aronson)
September 13-19 2010 has been designated ‘National Invisible Chronic Illness Awareness Week’. They have a simple and fun way of getting the word out about this awareness week, and make people feel good at the same time. … Sheryl Aronson – http://sherylaronson.blogspot.com/

CHRONICLYsILLy: Laws of A Lupie- CHRONICLYsILLy Rules to Live by
By CHRONICLYsILLy
Fact #1: Lupus is an autoimmune disease and is commonly referred to as an “Invisible Illness.” An invisible illness means that you cannot necessarily tell that the person is sick simply by looking at them, thus their illness seems to be … CHRONICLYsILLy – http://chroniclysilly.blogspot.com/

Journey with Chronic Illness BLOG » Invisible Illness Week Team …
By journeywithchronicillness
“Chronic Illness Tips: 263 Ways To Do More Than Just Get By” is by Invisible Illness Week founder, Lisa Copen and friends. Friends include chronic illness career specialist Rosalind Joffe, relationship expert and best-selling author Pam … Journey with Chronic Illness BLOG – http://journeywithchronicillness.podbean.com/

Invisible Illness Week — Post Its & How YOU Can Spread Cheer …
This is too good not to share, watch the video about how you can participate in a post-it note campaign on spreading encouragement and good cheer!
chronicbabeclub.ning.com/xn/detail/2082969:Topic:30192?…

Random (Mostly) Chronic Illness Stuff « A Young Wife’s Tale
Click on Invisible Illness Week to find out. This year’s Invisible Illness Week theme is “Each One Can Reach One.” It’s September 13-19 and I will of course …
youngwifestale.com/blog/chronicillness/…/comment-page-

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You are Too Young to Be That Sick! Chronic Illness & Young Adults

by Lisa Copen

At the age of twenty-four, a thousand miles away from my family, living in a new city, I was diagnosed with rheumatoid arthritis. Over a period of four weeks and about eight doctor’s visits, I finally found a physician who listened to me explain my symptoms and in less than two days I had a diagnosis.

Despite the terms “chronic” and “forever” I felt relieved to know the label that described my chronic pain. Few of my friends, however, shared my enthusiasm for a diagnosis. The managers at my office were more concerned about the fact that I wasn’t wearing heels to work anymore, making me look less professional.

“Encouragement” was quickly tossed around, like “You’re too young to feel so badly!” Rheumatoid arthritis was only something that could be related to the aches and pains their grandparents suffered from and a hot water bottle made it go away. They’d laugh and say, “You can’t have arthritis yet!” Those who attempted to sympathize, compared my weary body to a sports injury they had. “I have a touch of arthritis on my knee cap from football in college. It’s not fun when the rain comes, but you just have to keep pushing and not think about it.” Even well-intentioned words were enhanced by the brush off of a hand or even rolling eyes.

When you are faced with a chronic illness in your twenties, all of the typical decisions you should be making are quickly put on hold. Up until now, you were considering what kind of education to pursue, your career aspirations, relationships, and even where you will live. All these are put aside, however, as you are forced to make immediate decisions that impact the rest of your life.

Things like how well you accept (or do not) accept the diagnosis of your condition, which medications to try, when side effects are worth the risk and when they are not, and how to find the right physician. While friends are deciding which party to go to we’re at home trying to make sense out of our latest lab test results, weighing our options for alternative treatments, and deciding to have a good cry or just go to bed and hold back the tears one more night.

I tried to make each decision based on thorough research, a bit of instinct, and “worse case scenario” situations. So when I heard someone facetiously say, “You’re too young to have that illness” it felt like a slap in the face; as if they assumed I was too gullible to fight the doctor’s diagnosis and get “right one” that could be cured with a simple pill. I had to be incorrectly diagnosed, they assumed, because, after all, I “looked so good.”

Laurie Edwards, author of ‘Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties,’ says, “However infuriating and irrational such comments are, they only have the power to define or validate our conditions if we allow that to happen. There are all sorts of reasons why people find it easy to scorn or deny illness, especially in younger people who ‘should’ look and act healthy.”

The ambush of advertising for prescription medicines has given the general public a small education on the fact that illnesses like rheumatoid arthritis and fibromyalgia are legitimate diseases. However, with this education, comes the feeling that everyone is an expert and their assumptions about various diseases are now based on what one sees in those same commercials. For example, people with disabling illnesses can somehow be miraculously playing tennis or doing a marathon. While it’s true that a very small percentage of people may go into remission, or those just diagnosed may have favorable results, most of us are happy if we can get out of bed, get dressed and drive a car. These commercials neglect to inform people that though an illness can be controlled somewhat, the person may still be in significant daily pain.

With each chronic illness, most of which are invisible, people will doubt that your illnesses impacts your life as significantly as it does. If you are in your twenties or thirties, they will be even less likely to understand that feeling better requires much more than a good attitude or a little bit of exercise.

Lisa Copen is the founder of Rest Ministries and National Invisible Chronic illness Awareness Week, as well as the author of Why Can’t I Make People Understand? Chronic illness doesn’t have to be depressing! Subscribe to receive daily emailed encouragement from the largest Christian outreach for people with illness. Don’t miss Rest Ministries great books and gifts we’ve selected for people coping with illness.

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Let Your Local Illness Organization Know

Do you have a local association or organization that you know about or attend a support group meeting? For example, the Arthritis Foundation or the Multiple Sclerosis Society are wonderful organizations.

There are literally thousands of them that serve even the rarest diseases. If you can take just a few minutes today or tomorrow and pick up the phone and call a few of them (even just one!) it would help us spread the word.

Wondering what to say? Here is a sample script:

Hi, my name is _____. Is there someone there I could speak with about events or programs?

Hi, my name is _____. I have (name of illness) and I just wanted to let the staff of your organization know about something I am involved with, It’s called Invisible Illness Awareness Week. It’s a national event to increase awareness that about 1 in 2 people in the U.S. live with a chronic illness and about 96% of the conditions are invisible.

[Oh, when is this?]

It is September 13-19, so very soon, but I wanted to make sure that you knew about it. It’s been around since 2002 and during the entire week there is an online virtual conference.

[That sounds interesting. And how you involved?]

Actually, I am just helping out the volunteers in spreading the word. The virtual conference is free and there are other things they are doing as well, such as having hundreds of bloggers blog about invisible illness, that kind of thing.

[I see. And how can I get more information?]

Everything is at the web site invisibleillnessweek.com – There are press releases, a video about the week, media information, etc. If you have any kind of emailed newsletter or place for events to list it, we just want to make sure people know about the free conference.

There are some short blurbs on the web site that can be copy and pasted directly into your email newsletter if you’d like to keep it simple too.

Thank you so much for your time. I know you are very busy and I appreciate that fact that you care.

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Talking To Your Spouse About Your Illness: How Much is Too Much?

by Lisa Copen

“It’s as if there are thumb tacks in our bed,” I lament to my husband as he crawls in on the other side of our bed. “Logically I know nothing is there, but my body would argue otherwise.”

“I’m sorry,” he says as sympathetically as he can, but what else can he do?

“I feel a little nauseous tonight too,” I respond. “I wonder if I should eat some crackers or something. . . or if that would just upset my stomach more. It has to be the medications. It will probably pass soon.”

Before I can finish my sentence he is already asleep.

Most of us have a spouse who we would call our dearest friend. If our relationship is a good one, it is natural to want to share what we are experiencing with them. If our relationship is on the bumpy side, we may think that if he could just understand the daily pain we live with a bit better, maybe it would explain our moodiness, and in fact, bring us closer together emotionally.

We don’t want to be a burden and share about every ache and pain we experience. What a boring one-sided conversation that would be! But when we are hurting, we have a desire for those who are closest to us to validate our pain. By talking about what invisible pain feels like, it somehow has the ability to make it real . It’s not just “in our head.”

“Carry each others burdens, and in this way you will fulfill the law of Christ,” says Galatians 6:2. But at some point we need to carry these burdens to the Lord, and even a close friend, rather than just our spouse.

Although your spouse may not be suffering from a physical ailment, there are still many losses that he is grieving. For example, it is an emotional thing to watch someone you love be in pain and not be able to fix it. He may be suffering as he watches you lose the ability to do things you love. He likely misses the couple outings you once took together when you could do physically active events, whether it was skiing, or just taking long walks together on the beach. He may be frustrated that even his hugs can cause you to wince. Counselors have found that there are three major areas where marriages suffer: money, time and physical intimacy.

Your marriage may be having difficulties in all three, specifically because of the role chronic illness has taken on within your marriage. Is it possible to “share our burdens” with our spouse without overburdening him and making him want to run the other way every time we open our mouth to share another symptom of our ailments?

Consider your spouse your partner and the illness the third party

Remember that the “team” is you and your spouse up against the illness. The illness is the third party, not your spouse. Yes, you will often feel that your spouse is the spectator in your life as you go through the ups and downs of your illness, but make him a part of fighting this battle with you in a way that he is most comfortable.

It is okay (and wise) to gently educate your spouse on your illness. Allow him to come to your doctor’s appointments if he wishes, and ask his own questions about your illness, especially when you are first diagnosed. Don’t overwhelm him, expecting him to read all the books you are reading, especially if he never reads. Instead, give him a brochure with the basics or see if there is a podcast he can listen to. Talk opening about some of the responsibilities or roles may change within your marriage due to the illness. Be open about what you think you can and cannot do, for example, maybe you can no longer scrub that tub. Be forthright about them so you can decide as a team how they can still be completed.

Connie Kennemer lives with multiple sclerosis and she shares, “I am not as mobile as I used to be and often ask more of my husband. I may ask him ‘Can you work at home this afternoon?’ Or I have asked, ‘Why do you have to go to another meeting?’ How much should he accommodate me because my body is changing? He doesn’t always know when to stop and encourage me to try things myself. This is a constant challenge.”

Reasonable expectations are a must

It’s not uncommon for us to marry someone who has the opposite personality style as we do. You may feel the need to read everything you can get your hands on about your illness and attend all the support group meetings, but your spouse doesn’t respond to your diagnosis in the same way. It’s not because he doesn’t care, he is just responding in a way that is different from your own.

On the other hand, maybe you take things as they come and don’t want to get on the internet and read every detail about the symptoms you may have. Your spouse may wonder why you aren’t more interested in finding out how to best treat (and even cure) this disease. He may go as far as to accuse you of being in denial about your illness. He may want to see you be more passionate about being healed than you are. A wonderful book that will help you smooth out some of your communication is “Men are Like Waffles, Women are Like Spaghetti” by Bill and Pam Farrell.

Have information about your illness available for when he is ready

Sometimes we can just talk in circles about our pain and illness, never really getting to anything specific or a topic that can help our marriage grow. Perhaps one of the most effective tools to share something is to place sticky notes on pages of a books you’d like him to review with comments about topics you’d like to discuss. You can hand it to him and say, “There is a great example in this book about what we are experiencing right now. Would you be willing to read it and then maybe we can talk about it later?” Shares Connie, “After ten years of living with MS, I am past the whiney stage, but Rex sometimes holds back; that’s when I need to ask him more questions about his feelings.”

Creatively keep him informed about the embarrassing parts of the illness

Let’s get real. There are some illnesses that may cause you to spend a good portion of an event you attend together, not at the event, but in the bathroom. Let your spouse know this is part of the disease. Health organizations have brochures that list some of the symptoms of the illness, including these kinds of facts. You can say, “I’m dealing with some of the more embarrassing symptoms of this illness right now. I don’t really want to sit around and talk about them, but they are in this brochure in case you are interested in understanding what I am going through.” You don’t have t share details to keep him informed.

Look for other ways to vent besides always dumping on your spouse

“I realized that I held in all of my frustrations of pain throughout the day and then when my husband walked through the door I verbally ‘threw’ them him.” shares Cheryl, who lives with chronic fatigue syndrome. “My actions set the tone for the rest of the evening. I may have felt better because I got it off of my chest, but he felt worse and it lasted the whole evening. I could tell he was starting to dread walking through the door.”

Thankfully Cheryl realized the damage she was inflicting on her marriage, so she decided to take the last couple of hours each day to write in her journal, spend some time in prayer and do another activity that was relaxing. She shares about the result: “Writing in my journal gave me the chance to express my frustrations, and then prayer really began to minimize the negativity too. My husband quickly noticed a difference and it’s made our relationship so much stronger.”

Develop interests and hobbies

Too often we talk about our illness because it’s the only thing going on in our lives. Volunteer to be on a prayer chain, write that book you’ve been meaning to write, or get involved in a scrapbook club and start putting together albums for your grandchildren. You’ll find even you aren’t as interested in talking about your illness when you have more interesting things to share.

Conclusion

So. . . How much is too much? It’s different for each person and each marriage relationship. Learn to look at your situation objectively. How many times are you bringing up your illness? How are you benefiting from talking about it more than necessary? Do you need understanding? Validation? Perhaps you need actual physical help with tasks. Ask yourself if talking about your illness could be a way of getting your spouse’s attention, and this seems to be the only thing he responds to? Regardless of whether it is attention, acknowledgment or understanding, how can you get this from God instead? How is it negatively affecting your life or those around you?

And then take a moment to really ask yourself “Is there a better, more creative way that I can create intimacy with my spouse, other than just complaining about each ache and pain? What activities can I still share that could help us grow closer together?”

When you want to share about your illness, say a little prayer first: “Lord, I bring to you my pain and my emotional needs because of it. You know that I don’t want to burden anyone else with something they can’t fix, but I also want a friendship where I can just be myself and really share what I am experiencing. I really need a hug from you right now. I know how much my spouse cares about me; please give me the wisdom to know when to ask for help and comfort from him/her and when to come only to You and ask you to fulfill all of my emotional needs.”

Don’t miss other articles and important support while living with chronic illness or pain visit Rest Ministries so you don’t miss our fresh content and be entered for our monthly giveaway. Lisa Copen is the director of Rest Ministries, author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend” and founder of National Invisible Chronic illness Awareness Week.

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Those with Invisible Illness Are A Hidden Minority Group – Among Us But Invisible

Imagine a minority group in the United States that has it really rough.

How rough? They have a hard time getting employment, and a large percentage have been unemployed for years and are dependent on the State or the generosity of friends and relatives. Those who do work often work only part-time or low-profile jobs. They live in relative poverty and sometimes have trouble affording housing or clothes.

Some members of this minority are not able to drive. Many do not own their own homes.

Moreover, the society at large frowns upon members of this minority talking about any aspects of their lives that are different from the lives of non-minorities.

These minorities are encouraged to pretend that they are not part of their minority group, and they are rewarded for passing as members of another group. Indeed, their career success depends on their ability to pretend that they are not part of the minority group.

Media portrays the members of this group as lazy, deceptive, self-indulgent, mentally ill, and taking advantage of others.

In the dating arena, being this type of minority appears to decrease a person’s desirability, all other things equal, and thus these minorities often seek to date other members of their group.

Very few members of this minority group are represented in the top levels of business, entertainment, or policymaking. A lower percentage complete college or postgraduate education compared to the general public.

All in all, these minorities tend to have less money, less education, smaller social circles, lower-paying jobs, less disposable income. Their rates of depression, anxiety and other mental disorders are much higher than in the general public.

Which is to say, members of this minority group have it rough.

Who are these minorities? Those with chronic, debilitating illness.

They are there all around us. People have varying degrees of disability from chronic illness, but the U.S. Department of Commerce estimated in 1997 that 20.6 percent of the population had some degree of disability from illness, but only 6 percent of these illnesses were “visible” in the form of a cane or assistive device.

It’s like a hidden world existing among the normal world but largely invisible to it, since only a small percentage of illness can be seen with the naked eye. But simply develop a health condition yourself and start frequenting the health forums and web sites, and you will get a sense of the vast populations of very sick people with correspondingly marginal lives.

Besides the suffering associated with their actual illnesses, members of the “sick” minority also frequently deal with:

- Lower standard of living.
- Poverty.
- Divorce.
- Marital and family strains.
- Not obtaining desired education.
- Social isolation.
- Losing friends and connections.
- Missing out on certain social activities, hobbies, traveling or other enjoyments.
- Quitting or scaling back on jobs or careers.
- Down-scaling career goals or choosing an easier career.
- Discrimination.
- Having to hide the fact that they are sick.
- Taboos against talking about their lives, as though their situations are a shameful secret.
- Restrictive diets for health reasons.
- Not being able to eat out at restaurants.
- Anxiety about whether they can meet their needs while in public.
- Belittling by doctors, being told it’s “all in their head.”
- Being doubted or accused of malingering.
- Being discounted.

Most notably, I have noticed that healthy people (and some doctors) sometimes seem to write ill people off as though they are in some other, lesser category, not real people. The subtext seems to be: “You’re just a sick person, so you have to be satisfied with the life you have. You can’t expect the sort of things a well person enjoys. Just be grateful fo any bit of relief or help you get.”

From the outside, it might seem like people in wheelchairs shouldn’t expect to use every building or every form of public transportation; or people with unverifiable chronic pain shouldn’t expect disability pay; or people with chronic Lyme disease should not expect to be cured. But when the illness is your own, putting up with suffering and a limited life becomes more than hypothetical, and one starts to take issue with any limitations or extra suffering that are not unavoidable due to the condition itself.

We all deal with the breakdown of the body at some point. Sick people are not “other”; they are “us.” If things had gone slightly differently, any healthy person could be sick, too. Indeed, when the time comes and you are no longer healthy, you will wish that sick people were valued and treated well.

What would it look like if sick people were not a “minority” group?

- Social Security disability funding would be a high priority, and those unable to work would have help applying for disability, receiving fair evaluations, and paying for their living expenses and treatments.
- Universal health care, with no penalties for pre-existing conditions and available even if a person is not working, would be a godsend for many chronically ill people.
- Sick allies would work on connecting sick people with the rest of the world. Healthy people would learn to be comfortable around, listen to, and to be friends with sick people.
- Instead of stigma, sickness would be afforded the same kind of respect we give to marathon runners or Ph.D.s or others who endure long and challenging hardships, since dealing with long-term illness takes strength and perseverance.
- We would aim for a high quality of life for the hospitalized and the elderly sick, including social contact, choices about their lives, changes of scenery, time outside, creative outlets, and contact with family and friends.
- We would respect contributions that sick people can make.

-There would be affirmative action for sick people, such as understanding in employment interviews, college admissions, medical school admissions, or hiring practices. Sick and formerly sick people have something special to offer, and their presence brings diversity.

Andrea Runyan is a writer in Boston, Massachusetts. She studied math and biology at Stanford University, graduating with a Bachelor of Science in Mathematics and at Stanford, she wrote an opinion column for four editions of The Stanford Daily. She is currently writing a book about communicating with friends and family about chronic or invisible illness. See her blog at Andrea Runyan

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Reevaluate Your Methods of Getting What You Want

The following is an excerpt from the book Despite Lupus. This blog post was submitted by the author and is used with her permission.

Since the day of your diagnosis, you’ve wanted one thing only: a life free of lupus. You’ve prayed and begged for your chronic illness to go away, knowing that would be the easiest way to regain your familiar way of life.

You may even have made a few bargains along the way, saying “If my disease would miraculously go away, I promise I’ll never [blank] again.” But frustration has set in because your wishes haven’t been granted. In fact, it may seem like your pleas are being ignored. You wonder what part of “Heal Me” God doesn’t understand. Perhaps this is a better question to ask: what part of the puzzle don’t you understand?

Right now, you see a complete physical healing as the only assurance of regaining a life worth living. But what if a perfectly-functioning body isn’t yours to have at the present time? More importantly, what if it doesn’t solve the larger issue that looms over you – the long-term emotional effects of being diagnosed with a chronic illness?

You’re a different person than you were before lupus arrived; denying that is ignoring the essence of who you have become. The remedy for the hopelessness you feel due to your physical ailments may lie in an emotional contentment you haven’t yet considered.

I found the same to be true in my struggles with lupus. Every day for years, I prayed that God would heal my broken down body. I wasn’t expecting a miracle, but I had come to believe that, if I were patient enough, I would get the physical healing I wanted.

As the disease worsened, I grew more discouraged. Why wasn’t God listening to me? Maybe I wasn’t being clear enough. Or maybe it wasn’t a healing I needed, but an understanding of what was realistically in my future. By changing my focus, my frustrations caused by having made such little physical progress went away, replaced with an appreciation for the emotional acceptance I instantly was capable of achieving.

“Prayer is not asking for what you think you want, but asking to be changed in ways you can’t imagine.”

Instead of perpetuating the short-sighted, limited notions of how you can physically mend your broken body, start working toward that which can be realized immediately – a healthy acceptance of where you are in your life today. You’ll no longer be chasing a hopeless, unreachable goal of living well without lupus. Your objective will become living well, despite lupus.

***

Excerpt taken from Sara Gorman’s book, Despite Lupus: How to Live Well with a Chronic Illness. Log on to www.despitelupus.com to find out more.

Quote taken from Anne LaMott’s book, Grace (Eventually): Thoughts on Faith, as reprinted in the “The Up Side” feature of the May 2007 issue of Guideposts magazine.

Sara Gorman was diagnosed in January of 2001 with systemic lupus at the age of 26. Determined not to let a chronic illness dictate her plans for the future, she refused to admit that her busy lifestyle and indomitable attitude were hindering her chances for a long, productive life. After four years of running her body into the ground, she realized she was fighting life, instead of living it. Thus, she made it her top priority to start living well, despite lupus.

The steps she took to regain the health and wellness she’d lost are outlined in her book, “Despite Lupus: How to Live Well with a Chronic Illness.” Quitting her job, postponing plans for pregnancy, and cutting off her hair (or what she had left) are just a few of the monumental, courageous steps she took to reach her goal of living well, despite lupus. www.despitelupus.com

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What is an Invisible Illness?

Invisible illness comes in all shapes and sizes… and ages!

The purpose of National Invisible Chronic Illness Awareness Week is to provide people with the feeling of validation that their pain is real and that they can feel a sense of inclusion for a change, rather than exclusion. We also seek to bring about awareness of countless diseases, conditions, and chronic pain.

With this as a part of our purpose, our definition of “invisible illness” could be considered rather “loose.” Most illnesses are invisible at some point in the disease progression. One with rheumatoid arthritis, for example, may have the disease completely unseen in the first years of the diagnosis, yet it can become more visible as degnerations of the joints occur.

One with multiple sclerosis may go from looking perfectly healthy to being bedridden and then go into remission and have their illness be “invisible” to anyone looking for signs of sickness. Remission may last for months or even years. Or the visual signs may not show, but the illness may still be progressing.

We invite anyone or any organization that represents an illness to be involve with Invisible Illness Week. It is an opportunity to bring increased awareness to a cause you are passionate about while also educating the general public that those with illness may “look so good” but are still experiencing considerable pain.

It is no secret that those with invisible illness may be seen as exagerating their diseases or pain, or even making it up entirely. “The volunteers of National Invisible Chronic Illness Awareness Week hope to call attention to situations such as parking in the blue spots (with a logo that has a photo of the wheelchair) to responding to “advice” by Dear Abby that could be considered irresponsible.

Not just illnesses are invisible. We hope to bring awareness to conditions such as chronic migraines, autism, cancer, to bi-polar disorder. While many of us with an invisible illness have heard “you look so good” moms of children with autism are often told, “If you just disciplined him more…”

If you have to ask, “Do I qualify?” the answer is “Yes!” We’d love to have you join us to bring about more awareness to whatever health or illness cause you feel passionate about that impacts you or someone you love.

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