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Life With Lupus

4 Lies We Believe About Life With Ilness


#1

Written by Lisa Copen, founder of Rest Ministries and Invisible Illness Awareness Week.

When it comes to making the daily decisions about our illness it's easy to rely on instinct. Occasionally, however, our instinctive decisions about dealing with our disease can lead us astray. What we once believed about our body and its limitations when we were healthy may no longer apply, and yet we can still have those same clichés running through our thoughts, trying to dictate how we live.

Here are four lies we can easily listen to that can cause us grief or even physical harm.

1. Your illness is a sign that you somehow messed up

There are great debates over how much control we have over our bodies. Those who are diligent about what food goes into their bodies and how much they exercise will often claim they have prevented disease. Unfortunately, although we can lessen disease by eating healthy, avoiding smoking, and other good health habits, these choices do not guarantee that we are exempt from a chronic illness.

Some people who have made wise health choices for decades, have had their bodies eventually betray them, succumbing to cancers or other health conditions. And although one can delay a disease they may be genetically predisposed it, it cannot always be avoided.

Don't beat yourself up trying to figure out what you did wrong to cause your illness. Guilt, blame and shame are not going to help you. Instead, spend your time understanding more about your unique illness and how it affects your body.

What is the common treatment? What symptoms can you expect? How have people responded to treatment? Are there controversies about treatments? Then choose to become the healthiest person you can be -- with your disease.

2. If you rest you are letting the illness win

In the United States, the afternoon nap gets little respect. Many countries have rest times built into their work days, from Latin siestas to afternoon naps in Japan's workforce, with"nap salon" popping up in major cities. But in our culture the shift in attitude has been slow, despite the fact that Google offers employees "napping pods" to take a quick rest. Rest has traditionally been considered a sign that you are lazy and unmotivated.

Those who are chronically ill are not exempt from this attitude and we constantly fight the desire to be horizontal, even if just for a few minutes during the day. Despite our illness we still worship busyness and full calendars, even if it includes doctor appointments and physical therapy. We want to feel like we have accomplished something.

In truth, pacing one's self, learning when to take a nap, or just scheduling some "down time" is essential in coping successfully with an illness. Disabling fatigue is a common symptom of most diseases, and if ignored your body will respond with more fatigue, possible infection and exasperation of the disease.

Research has found that afternoon naps have a positive impact for those who do not even have an illness. Effects include lowering the risk of heart disease and restoring the sensitivity of sight, hearing, taste and improving memory.

3. You should always push through the pain

U.S. Marines have a slogan, "Pain is weakness leaving the body." While pain for a Marine who is going through boot camp may make him stronger in six weeks, pain can be a signal that does not represent growing strength and endurance for one who is ill.

When one is ill, pain can be a way the body sends out a signal that something isn't working the way it was meant to. Before illness, many of us worked out and we recognized pain as a sign we were stretching what our body can tolerate. Pain could easily mean we were hitting the zone of: "Now you are accomplishing something. Go, go, go!"

For those with illness, however, pain is not something to ignore. Pain that occurs over and over can cause permanent physical damage. You don't want to make it worse. Talk with your physician about what different pains mean so you know when you should push through them and when you should pull back or give your doctor a call.

4. You can have your life back after you go into remission

It is not uncommon for those of us who are ill to constantly tell ourselves, "I will do that as soon as I feel better." Sadly, there will be a long list of things that we may never do if we are waiting for better days. While it may be smart to put off the goal of running a marathon until you can do it without damaging your body, many events in life can still happen -- even if they must be altered a bit.

Chronic illness has a way of happening parallel to life's events -- getting married and having a family, going to college and thriving in a career, taking a trip or meeting a personal goal. Although these events may not occur exactly as you had imagined or they may happen on a different timetable, they can still happen. Don't believe the lie that you need to wait until you feel better.

Chronic illness creates major changes in our body. We can still live healthy and blessed lives, despite being ill, but we need to adjust our outlook on the topics of health, illness, and pain in order to live fully. Relying on our instinct and listening to what we were taught when we were healthy, may only cause further damage in both our body and our social lives.

Understanding the challenges you face with your illness, and then planning a life despite them, may be one of the healthiest decisions you will ever make.


#2

This post is really general and non specific to lupus. I know I did not cause this illness and I am not disillusioned about remission. I tend to read passages that are more focused on positivity and less on general scientific facts not relevant to me.


#3

this is well written and very good,


#4

I thought it was a very good read, I often when joking about my illness will tell people, I must've been really bad in another life to deserve the life I have now. I could relate to all of it, I used to think a lot like that, keep going no matter what, at the end of the day I've taken literally years off of my life, have massive organ damage, that can not be fixed because I didn't take better care of myself, now its too late for me. Remission is something that I will never have again. The piece is relevant to everyone that struggles every hour of everyday with chronic illness, it reminds us acceptance is paramount to living, it might not be the way you envisioned your life would be, its ok we accept our limitations and move on. I wouldn't accept that, now I wish someone had told me it's ok to be sick and take care of yourself first, its not selfish, I put everyone and everything ahead of me. Thank you for posting it it was great!


#5

Hopeful,

I had in-laws who constantly demanded that I push past my limits, and believed all these lies about my illness and had me mostly believing them too. . My own family was in another country. So I did the same as you, Hopeful, I pushed so hard that now I have multiple organ damage. I was devastated when hubby left us, but years later I could see that it was God's protection, because right at that time, I was getting much sicker and they would have been so cruel and pushed me so hard, I would have died. I also wish someone would have told me to take care of myself. There is a saying "If your body falls apart, where are you going to live?" We end up living ---no--- barely surviving in a body that doesn't allow us to fully live. So I was thrilled to read this article, and I will pass it on to many people.



#6

THANK YOU ALL for your kind comments. Lisa Copen, the author, is an amazing, insightful lady who knows just the right things to say. I enjoy all of her writing. I used to believe these lies, until I made myself so ill that I was too sick to push myself anymore. I'm glad it struck a chord with you as much as it did with me.


#7

Thank so much for posting this!!!


#8

Thank you for posting this insightful and helpful information!

Ann thank you for sharing the websites, as well. I am definitely going to check out the rest ministries site.


#9

Sheila, This was a great article and I sent it on to many of my "non Lupan" friends. Thank you so much for posting it!

LupanCatwoman


#10

Your posts are always so helpful. THANK YOU


#11

Thanks Kelly!!

Kelly said:

Your posts are always so helpful. THANK YOU