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23 May 2012

52 Ways to Encourage a Chronically Ill Friend

The post linked to above is an excerpt from Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend by Lisa Copen. As described in the post, Beyond Casseroles is "a popular little book to help people understand the needs of the chronically ill–and then get into action." In reading the 52 ways listed, a few jump out at me.

"7. Ask, “Would you be willing to talk to a friend of mine who has recently been diagnosed with a chronic illness and offer her some encouragement?” It makes one feel good to know that her experience can offer someone else hope and that God still has a purpose for her life."
I cannot speak for others, but I know that I am almost ALWAYS willing to speak to someone newly diagnosed. Although some people feel that I am too openly honest about the disease issues that are far from encouraging, I am the type that no matter how discouraging something is, I'd rather know about it to be able to expect it, be prepared for it, and know how to fight it. Or possibly prevent it. Prevention is impossible if you do not know what to expect. The only thing I can think of that would have me saying no to speaking to someone is if we couldn't find a good time for us to be able to sit down and have a decent amount of time for a chat, and I mainly would prefer a scheduled time so that the person who is newly diagnosed has time to think of some questions they may have, and I have time to gather some information. I am not the type who likes to just rattle off a bunch of things, without the resources to back them up. If I say to someone "People with RA tend to have a shortened life expectancy" then I want to be able to show where that information comes from. And asking the person to think of some questions they may have, let them have time to think what may be bothering them, or what is concerning to them. At the very least it gets them thinking.

"15. Don’t make her feel guilty about things that she cannot do."
I cannot stress how important this is!  If you are continually making your friend feel guilty over not being able to do things, you're not a very good friend. Friends don't make friends feel guilty. It's likely your friend is already feeling guilty without any help from you. Anytime a person with chronic illness(es) has to say no to an activity because of their illness(es), there are so many things they feel. They feel saddened at missing out on something fun, they feel as if they've let their friend down, there is guilt with the decision especially if the person is also second-guessing themselves. They may feel that they could manage doing something if only they don't do something else and then that adds to the guilt.

"23. Ask her to do spontaneous things, like go to a concert in the park, or just for a picnic. She may be more likely to participate since she knows if it’s a good day or a bad day."
It is so much easier to decide to do things on a more spontaneous basis. And declining a spontaneous activity is less stressful at times if it is a bad day. 

"24. Don’t say, 'So, why aren’t you healed yet?' or 'I wonder what God is trying to teach you that you just aren’t learning!'"
I cannot even begin to explain how insulting the last half of this one is to hear. The first one is just one of those questions that would make me look at the person asking it and wonder if they were seriously asking me that. The second half I hope I'd respond graciously and kindly. But then again, I might just tell them how rude that is and how it basically is questioning my faith. I could write a whole post on the subject of people who feel if we just pray hard enough and have enough faith, God will heal us. The only issue I have with that, is most of those same people expect an immediate healing. And while I certainly believe that type of healing is fully possible, I honestly believe that God does not immediately heal everyone. Those who do not receive immediate healing aren't guilty of not having enough faith or not praying hard enough or with the "right" words. It may just not be God's plan to heal them right away for some reason. Most likely that reason is NOT so that they learn some sort of lesson that they have failed to learn. It is altogether possible that God's plan is NOT to heal them because He has a purpose for their chronic illness(es). It may have nothing to do with THEM except that at some point He will use their illness(es) to help another person. In the Bible, not everyone who prayed for healing received it. The example that comes to mind without even doing any looking is in 2 Cor. 12:7-10 (NKJV). Paul is being plagued with a thorn in the flesh.
7 And lest I should be exalted above measure by the abundance of the revelations, a thorn in the flesh was given to me, a messenger of Satan to buffet me, lest I be exalted above measure. 8 Concerning this thing I pleaded with the Lord three times that it might depart from me. 9 And He said to me, "My grace is sufficient for you, for My strength is made perfect in weakness." Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. 10 Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ's sake. For when I am weak, then I am strong. 
In verse 9, God says no to removing the thorn in the flesh. His reason? So that Paul relies on the grace of God. God and His strength and grace are able to allow a person to do wonderfully mighty things in spite of, or sometimes because of, our chronic illness(es). Paul used his weakness to show how God can strengthen us when we have infirmities, needs, are being reproached, persecuted or are in distress. I will refrain from going into too much more detail here on Paul's ordeal and what various commentaries say. Some say it was a physical illness, others feel it was a demonic person or persons who were trying to bring division to the church and ruin Paul's witness.

Suffice it to say, others did not get immediate healing either. Yes, the miracles of Christ show numerous immediate or nearly immediate instances of healing, but Christ's use of miracles was to show his divine nature and how He: is the source of life; is master over distance; is master over time; is the bread of life; is master over nature; is the light of the world; has power over death; and is master over the animal world. Even the ability of His apostles to heal was given to them in order to prove that they were truly messengers of God. The ONLY place in the Bible where healing at a certain time is guaranteed to us is in Rev. 21:4 (NKJV), which says,
"And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away."
The note for this verse in The MacArthur Study Bible by John MacArthur says,
"Since there will never be a tear in heaven, nothing will be sad, disappointing, deficient, or wrong."
Before I go too deeply into this issue, I will stop here. I will end with reiterating my feelings on this. I fully believe God could heal me, or anyone else with chronic illness(es) at any moment. But I also believe He has a greater purpose in not doing so at times. That purpose will be unique for each person. Just because God doesn't do something, it doesn't mean He can't or won't later on. There are three answers to prayer: Yes, No, and Wait. Many people tend to think if they do not immediately get the answer of yes, that they have received no answer. Well, last I checked, the words no and wait are still valid answers to a request.

"31. Don’t tell her about your brother’s niece’s cousin’s best friend who tried a cure for the same illness and. . . (you know the rest)."
This is one of those things that, to many who have chronic illness(es), implies that our doctors do not know what they are doing. While that is certainly true in all too many cases (why do you think they call it "practicing" medicine?), it is up to the one who has the illness(es) to decide when to seek new treatments. All too many chronic illnesses have NO cure. They may have excellent treatments that bring about remission, which is the the next best thing to a cure for many illnesses. But, even for illnesses where remission is possible, remission rates are not high, and even if remission occurs, the illness can return later on. Many times the supposed "cure" is actually something that can have absolutely no benefit to the body, and some are more poisonous than medications. But at least with the medications, there is generally a good record of proof that they have benefits that outweigh the risks. With many of the word of mouth, doctors don't want you to know about this, type of "cures", there is absolutely NO benefit that would outweigh the risks to using it.

"35. Don’t tease her and call her 'hop along' or 'slowpoke.' Comments you mean in fun can cut to the quick and destroy her spirit. Proverbs 18:14 says, 'A man’s spirit sustains him in sickness, but a crushed spirit who can bear?'"
Oh boy. Where do I begin here? This one is not quite as cut and dried as many of the others I am commenting on. For some people with chronic illness(es), teasing them in any way, shape or form is extremely hurtful. For others, laughing at their illness(es) or the things that they struggle with, or a number of other illness related issues, is a form of coping. And as a friend of a person who copes this way, it may very well be acceptable to tease her about things like that. It's been said many times that it is better to laugh than cry. And many people with chronic illness(es) find that to be true. Laughing about something also takes away the power of the negative thing to be mentally upsetting or to be a hang-up. I know I have laughed over many things that other people would be horrified to laugh at, but I am fully convinced it has helped me maintain my sanity. Or kept me from the brinks of a deep, dark, dank, defeating depression.

The first time I needed a wheelchair to go shopping in the mall, I was, like many people, not thrilled. I was not enjoying the thought that at the age of 24 I was being pushed through the mall in a wheelchair. At the time, I'd not really thought it all through, so it made me pretty unhappy. My husband, being the great guy he is, and also having the wicked, twisted, sick sense of humor that he has soon had me laughing. From the race car sounds as he pushed me through throngs of people Christmas shopping, to brake sounds when we began to stop and a number of other crazy things, he had me in a much better mood in no time. How could I not laugh at being 24, pushed through the mall hearing sounds typically reserved for a kid playing with their Matchbox cars? Then, when he was going into a store that was: a) way too crowded for me not to be hit, elbowed, stepped on, etc. and b) had problems with the store being somewhat inaccessible by wheelchairs when there were no crowds, he parked the wheelchair in one of the areas for seating within sight of the store he wanted to go into. An elderly lady was sitting on a bench nearby. As he parked me, he continued to be silly. Except he didn't think how it would sound if overheard. Which is one thing I love about his silliness, the opinions of strangers do not matter to him. As long as the recipient of his silliness does not get upset, he does not care about what strangers think of what he is saying. He parked me, gave me a quick kiss, and as he walked away gave me a "threat". He told me to wait right there for him. Being the me I am, I replied, "Or you'll do what?" I didn't even notice the elderly woman listening to be honest, I was trying too hard to sound like a smart aleck teen, being defiant and arguing with a parent. He got a funny grin and replied, "OR I will take you to the darkest corner of the mall and put on the brakes and leave you there!" As if I couldn't get up and walk behind him. As if he'd ever do anything mean to me. As if he could leave me sitting alone in a dark place of the mall. But he succeeded in his purpose, which was to distract me from how I felt about using a wheelchair for the first time.  After he left, I noticed the elderly woman giving me a strange look. I figured I'd better do damage control before she flagged down mall security and told them I was being abused and threatened. I smiled and explained to her why my hubby was making horrible sounding threats. I told her how it was the first time I'd had to use a wheelchair to get around and wasn't thrilled about it and how we use humor to get through rough situations and this was no different. I explained how much I appreciated that he gave me something to laugh about when I was dealing with something that wasn't easy.

6 or 7 years later, I actually got a script for my own wheelchair and it made a huge difference in my life. Good thing I got used to using it part time, because in 2008, I had a fall that left me in bed, a Geri-chair or a wheelchair until 2011. Now, I counsel people that if they need to use an aide of some type, be it cane, crutches. a walker, braces, splints, or a wheelchair to be able to have a better life, then they need to just suck it up and use it rather than not use it and end up hurting more or not doing things they would be able to do IF they'd only forget their pride for awhile and use the aide.

One other example of laughing in the face of horrible circumstances.  After a fall, I was extremely ill, unable to walk, stand, even feed myself. For months I was not "there" in a way that is not easy to explain. I was alert and oriented in some ways. I could speak to people in a normal and appropriate way. I made some decisions, although had my family not agreed with what I was deciding, I am sure the doctors would have followed what the family wished. But, because of other things I said, it was quite clear that I wasn't "there". I have virtually NO memory of what happened to me from mid-Jan. 2008 through March 2008. I would say that 75% of April is missing as well. Less of May is missing and then continually lowering amounts were missing. Doctors have no explanation for it. To me, during those months, I was asleep. I recall some VERY odd dreams I was having. Some of which combined reality with whatever world my mind was in. In one vivid dream, I was in Indiana, still ill. But I was at a small (under 5) bed home for people who were gravely ill. The home was the home of the man I call Dad, next door to my bestest friend's house. In my mind, my son and husband were there, staying at her house. I remember that they visited. But she didn't. And in my room in this home, was a whiteboard that had the name of the hospital, the date, and the names of my nurse and CNA on it. The hospital's name on that whiteboard? Grand Strand Regional Medical Center, which is a real hospital. Except it is NOT in Indiana; it is however in South Carolina, where I live. That explains why even though the distance from Dad's house to Mary's house is in walking distance, even for me, Mary never visited me. As I began recuperating, I noticed something that struck me as odd. My husband wasn't teasing me about anything, even the stupid things I  did or said. Then I realized neither was my son. That was odd. So I asked them what was up. They acted like I should have known that they couldn't pick on a desperately ill woman. Uh why? My son apparently took that to heart. Sometime later, they walked into my room to catch me,  with a large bag of potato chips up to my mouth, tapping the end of the bag in order to get all the crumbs from the bottom of the bag. Hey, I'd not been able to eat for months and I had finally been able to keep Doritos down? You can bet I wanted every tiny little crumb I could get into my mouth! As soon as they caught me, my son said the first thing that came to mind, which was, "Piggie!"  I slowly lowered the bag from my mouth, and very quietly and in a voice that sounded as if I were barely controlling anger I asked him what he said. But before I could take the joke any further, I could not keep a straight face. I ended up bursting into laughter. My son at first thought he was in trouble. And from then on, he had no issues teasing me when it was needed! So for some people, laughter is a great coping tool. Before you go teasing a friend though, find out what may be off limits. I will take teasing about some things from anyone.  But, other things, only people who know me well can get away with teasing me about certain subjects. My bestest friend, can definitely tease me about anything health related, especially since I know in teasing me, she's likely teasing herself as well.

"42. Accept that her chronic illness may not go away. If she’s accepting it, don’t tell her the illness is winning and she’s giving in to it."

I touched on this earlier, but will add a bit here. Not only do you need to accept that her illness isn't likely to go away, and need to support her acceptance of it, but not saying she is giving in to her chronic illness(es) is extremely important. Telling me that I am giving in to my illness(es), or that I am letting my illness(es) "win" is a quick way to upset me.  It cannot be said enough that acceptance is NOT giving in. Acceptance is simply acknowledging that the illness(es) is/are chronic, have a cycle of flare-ups and times of less activity, will more than likely require medication for the rest of her life, will require her to do and learn things she never once dreamed she'd have to learn, and will require her to become the manager of her health-care team, a position some doctors seem to resent because they expect patients to be little sheep that follow their every order without question. Well, that's not how it works best for the patient usually. Patients who play an active role in the healthcare decisions are likely to do better at managing their illness(es) based on what I've seen throughout the years of work I've been doing with online support groups. They're generally happier with their course of treatment, they're more satisfied with their doctors, and they feel more in control of their health issues.

"44. Ask her to share her testimony at an event."

If your friend has had a chronic illness for some time, they may likely have some experiences with some pretty surprising things. They may also be more open to sharing than someone newly diagnosed. I know for me, I tend to tell my story (or the shortest version of it I can tell in a short amount of time) because I cannot count how many times as I was in the nursing home and someone found out what I'd been through that they told me I should keep sharing it because it might help someone else going though a rough situation. From some of those people the suggestion was to write a book. I am still not 100% sure I am ready and able to go that far. But, I am entertaining the idea. In the meantime, I would freely share my testimony of how I was told I wouldn't likely walk again by my doctors. They also said I was not likely to live outside of a hospital or nursing home. I'd tell how the doctors prognosis for me did NOT defeat me as it might some people. I would share how I recall asking to be left alone for a bit, not to cry as everyone assumed, although I may have, I cannot fully remember. What I do remember is praying. Telling God that I knew if it was in His plan that I be in a wheelchair the rest of my life, that He could still use me, and maybe even better use me because of that wheelchair. I knew that what I did before getting so ill with multiple infections, cellulitis taking a large chunk out of my leg, losing the ability to walk, and so many other things, I could still do in a wheelchair. I remember being grateful I had made it as far as I did. And I remember little else. I do not even know when this happened to be honest. As I improved, so much happened because of my immune system being a mess. I eventually needed a feeding tube. Yet it came out. So they had to decide if it was worth continuing to do costly procedures on me, or if it was throwing away money on a patient who, in one doctor's eyes was "nothing but a terminal patient." Thankfully they decided to do the procedure. And I think that was a bit of a turning point. It was a long, up-hill much of the way battle. But, in a remarkably short time after finally feeling well enough to begin physical therapy (the hospital PT had predicted it would take me 2-3 years of daily, intensive PT in order to stand, let alone walk, IF it were possible. In the nursing home, I ended up not having PT until Jan. 2011. I went 3 days a week, for approximately an hour a day. On March 29, 2011, I stood for the first time in 3 years. I then increased my PT to 4 days a week, still for about an hour a day. On April 18, 2011, with my son behind me (he was on spring break and wanted to spend a day with me, especially wanting to see what I did in PT) I took the first steps I'd taken in 3 years.It was an unspeakably thrilling victory for me. I know that the staff members and other residents who were in the therapy dept at that time were all thrilled for me. Earlier that morning, we'd had a church service (we had them throughout the week at the nursing home) and my son had arrived shortly before it was over. When the service was ending, the pastor chose "Victory in Jesus" to close the service. I was kinda surprised my son knew the hymn. But it didn't really enter my mind much until the next day. I was leading my first devotion time on the Alzheimer's and dementia unit at the nursing home.  I don't even remember the topic I read about. I do recall that Debbie, who worked in activities on that unit and I had decided about half-way through we would break for a song. It was then that the words of the second verse of "Victory in Jesus" hit me.
I heard about His healing,
Of His cleansing pow'r revealing.
How He made the lame to walk again

And caused the blind to see;
And then I cried, "Dear Jesus,
Come and heal my broken spirit,"
And somehow Jesus came and bro't
To me the victory.
Those first three lines just hit me like  a ton of bricks. I realized that was in effect what had happened to me. I did what the doctors said was highly unlikely I'd ever do again, both in walking and in living outside of the hospital or nursing home. I am sure Debbie wondered why I had such an odd look on my face, if she noticed me. In effect, that's the second time I did what doctors said I would not do. In the first few yrs post diagnosis, my doctors told me I'd probably not walk after the age of 16, I'd not work, let alone work a full-time job, not marry and have children, be in a wheelchair by the age of 16 and be on medications the rest of my life. I began working at age 16, working as many hours as I was allowed to legally work at that age. I was not in a wheelchair even part-time until I was pregnant and had horrible ankle swelling and fatigue that was horrible, it was another 8 years before I was in a wheelchair full-time. And after 3 yrs of being in a w/c, I am back to walking part of the time.

Interestingly, in the hymnal we used at the nursing home, there was a verse with most every song if not every song.  The verse with "Victory in Jesus" was 1 Cor. 15:57 which says,
But thanks be to God, who gives us the victory through our Lord Jesus Christ.


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