With nearly one out of every two people having some kind of chronic condition, it is very likely that you either have a chronic illness or you love someone who does. To live together, worship together, help one another, we need a little understanding. Today's post has tips from people with chronic illness, things they wish healthy people would understand. Next week, we'll hear from the healthy side, things they wished us sick people understood.
Who knows? It may end up answering questions you never thought to ask!
Here's what real people with chronic illness have to say about what they wish healthy people knew...
Disclaimer: Each of these will not necessarily fit every chronically ill person, they are just to give an idea of what many may feel.
1. I don't want to be sick. If I could make it go away, we would.
2. I feel guilty for my limitations and need reassurance that I am still valuable.
3. I wish they would know how hard it
is for me to plan ahead to do things. Also, just because I'm able to do things
one day doesn't mean I can do them the next. The inconsistency and uncertainty...is the worst part, because I never know how I will feel from
day to day.
4. I wish the well friends realized
that I cannot keep up the same level of activity when I am under the weather.
My house is a mess; the spiders won't pay rent and the kitchen floor is
adhesive. I've been MIA over the last 2 months or so--the only people who have contacted me
(to see how I'm doing) are ones who have health issues of their own.
5. I wish they knew that we are
not lazy. We want to participate in all the things they do, but
sometimes our bodies just won't let us. Also, just because we don't
look sick doesn't mean we aren't struggling with pain or fatigue.
6. I wish the healthy people in my life would stop treating me like I am The illness. It seems like some of my family and friends are afraid to be around me or want to hug me because I have had cancer.
7. I think one of the hardest things for anyone who does not live in chronic illness is to see the amount of EFFORT it takes each of us who do live with it, to accomplish many of the things, they take the ability to do for granted. I personally cannot vacuum a floor any more or clean my home the way I have in the past. I absolutely hate not being able to care for my home and family physically.
8. If it weren't for facebook, I would have no friends at all. No one offers to help. No one comes around just to talk. I have lived in this place 3 years, not one person has visited me here. I can't clean by myself, I have trouble cooking every day (and hubby is so good about not insisting), grocery shopping takes all of my strength since I have to also carry it inside and put it away. I sometimes pray for an OCD friend who will be so aghast at the condition of my house that she will volunteer to help me. :)
9. If I say no to an activity or event, it is not personal. It's not that I don't want to go (I do!), and not that I'm avoiding those people; it's just that even fun things can be more than my body can handle sometimes.
10. I wish healthy people could accept that I'm not going to get better. I will have good days and bad days within my illness, but my condition is not going to go away.
If you have a chronic illness, what would you add to this list? A little understanding goes a long way, so don't be shy! (But with gentleness and respect, please.)
Next Week: What Healthy People wish Sick People Knew
Related Posts: Sticks and Stones and Hurtful Words
Give Yourself Permission to be Sick
Karen's Story
6. I wish the healthy people in my life would stop treating me like I am The illness. It seems like some of my family and friends are afraid to be around me or want to hug me because I have had cancer.
7. I think one of the hardest things for anyone who does not live in chronic illness is to see the amount of EFFORT it takes each of us who do live with it, to accomplish many of the things, they take the ability to do for granted. I personally cannot vacuum a floor any more or clean my home the way I have in the past. I absolutely hate not being able to care for my home and family physically.
8. If it weren't for facebook, I would have no friends at all. No one offers to help. No one comes around just to talk. I have lived in this place 3 years, not one person has visited me here. I can't clean by myself, I have trouble cooking every day (and hubby is so good about not insisting), grocery shopping takes all of my strength since I have to also carry it inside and put it away. I sometimes pray for an OCD friend who will be so aghast at the condition of my house that she will volunteer to help me. :)
9. If I say no to an activity or event, it is not personal. It's not that I don't want to go (I do!), and not that I'm avoiding those people; it's just that even fun things can be more than my body can handle sometimes.
10. I wish healthy people could accept that I'm not going to get better. I will have good days and bad days within my illness, but my condition is not going to go away.
If you have a chronic illness, what would you add to this list? A little understanding goes a long way, so don't be shy! (But with gentleness and respect, please.)
Next Week: What Healthy People wish Sick People Knew
Related Posts: Sticks and Stones and Hurtful Words
Give Yourself Permission to be Sick
Karen's Story
Maybe it's my pride, but I do not want to be pitied- just understood. Thanks for this post, Kimberly. I think that, just like everyone, I would like someone to invest time in the conversation when they casually ask how I am doing- time enough to listen. You don't have to have answers to fix me- just listen because sometimes we have to process things out loud and feel crazy just talking to ourselves;)
ReplyDeleteI suddenly feel it neccessary to give credit where it is due- I am blessed to have people who do this- who are genuinely interested, and I am so very thankful for that!
DeleteWell said. Thank you! Understanding goes a long, long way, and having someone listen is such a gift.
Delete#10: you said it, you are NOT going to get better. As long as you keep being negative, you will never. get. better. Did you know you mind greatly influences your health? Try changing your perspective and/or getting help doing it. You are your biggest enemy if you're negative about your health. I have known people on the death bed and JUST their attitude turns them around. Try doing this: looking at yourself in the mirror everyday for two weeks. You need to tell yourself that you are healing and getting better. You need to tell yourself at least 3-4 affirmations a day. If you are 'too sick' to do this, I feel really bad for you b/c you are trapped in your own misery............
ReplyDeletejust realized that this was a general post from lots of sick people. It still applies though. :)
Hi, Erin. Thanks for stopping by here! You are right that attitude has a huge effect on the body. Our own attitudes are important, but this particular post is about other people's attitudes and what we wish they could understand. For example, I have Addison's disease, a condition which at present has so cure. God could heal me in an instant. I have enough faith that He could. However, He has chosen not to, so in order to glorify Him, I have had to accept that this illness is His current will for my life right now. I will have days when I am doing better than others, but I am not going to get back to where I was when I was healthy. If you tell someone in a wheelchair that they should spend their days thinking and focusing on walking again, they will spend their days discouraged and depressed, rather than having the better attitude you are talking about, because they are not accepting the situation God has placed them in. The point I believe #10 was making was that sometimes healthy people are waiting for us to get over our sickness, when we are trying to live as best we can within it. I HATE having a disease. I would love to be better. And that is why it hurts when people assume I am just wallowing in my sickness or using it as an excuse, or continuing it by a bad attitude. Paul said he learned contentment in every circumstance--that include abounding and abasing. Contentment includes acceptance that God doesn't always give you the easier, healthier option. The Bible says God's people will suffer in this life. Those of us who suffer with illness would love your understanding.
DeleteErin,
DeleteI am a pretty positive person. I still work. I still volunteer. I still do my hobbies, but there is a price to pay if I overdo it. No matter how many times I stare into a mirror and tell myself I am getting better, it's not going to make my body suddenly start producing the antibodies that it was never able to make in the first place (I have an immune disorder similar to what the "Boy in the Bubble" had). It's not going to make my hearing return from autoimmune damage. It's not going to make my permanent lung damage go away from repeated infections or cure my Celiac disease or make the electrical connections in my heart work properly. In spite of all the illnesses I have, I am still more active than most with my primary immune deficiency (and even more than some normal people) and that is likely due to shear will to not give into the illnesses (I've almost died from them more than once), but that cannot be mistaken for healing. The illnesses themselves are no less severe. The symptoms no less severe. I have limitations now that I didn't before all the damage was done and completely ignoring those limitations would be risking my life. You cannot wish away chronic illnesses and putting the blame on the person that has to deal with them is hurtful and very wrong.
Yes to all of these, Kimberly. You've read my mind with the exception of part of #8. I'm so ashamed of my housekeeping, I'd be mortified if anyone would come over to help. So grateful that hubby puts up with it.
ReplyDeleteThanks for putting it all down in words.
Angie
Hahaha I hear you, Angie! I'm so blessed that my kids are getting old enough for me to pay them to clean. =) I think I asked for a cleaning lady to come for my birthday present last year. I'd take that over a fancy candle or wall hanging any day! =)
DeleteMy daughter often says, "I just want a witness to my suffering." She is not looking for answers, just recognition as a valuable person. She also wants to wear a sign, "I will listen to your medical advice for $5, because then at least I can buy cookies."
ReplyDeleteI love that quote. I want to put it on a t-shirt!!! =)
DeleteIf you put it on a shirt I will TOTALLY buy it! Funny and true!
DeleteYou have totally given me an idea! T-shirts are a pain to do, but I could do those tote bags for grocery shopping with fun sayings like this and use them as special giveaways or sell them when my Sick & Tired book launches. Fun!!! Now I'll have to do a blog post asking what sick people would love to have on their tote bags! =)
DeleteLove that Lynne, and love the idea of putting it on a t-shirt. I would just use that company online that does this kind of thing. lol
DeleteThank you so much for putting these in writing!! I'm going to make a copy of it to hand out. It makes me feel better just to know others feel the same way that I do.
ReplyDeleteWelcome, Susan. It makes me feel better too! I'm amazed at how I look around and assume everyone else is fine, then I find out so many people are going through the same thing!
DeleteThank you so much for posting it. Ironically I was going to write a very similar post on my own blog but just have no energy today. I too keep a positive attitude and reassure myself every day that I am getting better. I savor the moments that I can actually have a semi normal day of leaving the house or even getting some work done. I have to say that I am incredibly grateful for the people I have met through this journey. They may all be on facebook and forums, but they are some of the best friends I've ever had. Loving, supportive, and compassionate. Some days a "hi I hope you're ok" message in the morning is exactly what I need to keep me going on a dismal day. These are better friends than I had before! I also want to add something that shiuld have been on the list-
ReplyDelete"To healthy people: please don't whine to us about your headache or your common cold. Calling me up because you're stuck in bed with the sniffles for a couple of days does not give you the right to whine at me. If you were in my shoes you'd be running to the ER every other day. Suck it up and push through it, you know you'll be fine in a few days. "
I get so frustrated with these people who only call me when they need medical advice or to complain about some ache or pain. I have no problem helping out friends but to me if that's the only time you're going to call me it just adds insult to injury.
Hi, Shannon. I am so thankful to live in the age of the internet. Though getting out and being around people in "real life" can get exhausting and is too much sometimes, I love that I can still connect with people via FB or e-mail and encourage and be encouraged, without even having to change out of my pjs! =)
DeleteMy spirit wants to join in the conversation, but after reading all the comments and getting excited that there is a bunch of people out there who truly "get it"...I'm worn out from empathy! I can't remember what I wanted to share! Oy!
ReplyDeleteYour words made me smile!!! Glad you're here. =)
DeleteI have COPD and am on oxygen 24/7. I also have fibromyalgia, bi-polar and anxiety attacks. To look at me, you wouldn't think I am sick, except for the oxygen canula on my face. But inside it's like there are tiny men with sledge hammers beating the crap out of my muscles.
ReplyDeleteWith the bi-polar, it is hard to concentrate, so I have to ask people to speak slower so that I can comprehend what they are saying. Because at the same time they are talking, my brain is going 100 mph! I am not crazy or a psychopath. Bi-polar means I have days when I have so much energy I could clean the house in 30 minutes. Or write 20 poems in an hour. Then there are the days that it's hard to even get out of bed, let alone take care of the house, the puppy or anything else. But I do it. I force myself.
I also have moments when I burst into tears without warning. I should say that in the last 14 months, I lost my husband of 25 years to Agent Orange cancer on Jan. 19th, 2012, and my mother on Feb. 28th. Things like this only add to the stress that causes many of the symptoms of Fibromyalgia and Bi-polar.
Sometimes all it takes for me to feel good is someone to listen, to care, to help me put. I am lucky, I have children who do help. But I am also lonely and that adds to the depression.
In spite of all this, I have faith that God has me on ths path for a reason. I am truly blessed and able to share those blessings gives my soul a spiritual high. So I try to pay it forward when I can.
Thank you for having this site for us to share. Hopefully it will help others to undesrstand us better.
Susan, I am so sorry for your losses, and the struggles that you face everyday. Thank you for pointing out that helping others helps us get our minds off ourselves and our pain. God loves you so much!
DeleteI so appreciate this and have written similar things but not this comprehensive. I agree to each and every one and honestly I was THRILLED to see some of them. It means I'm not as pitiful as thought I was. I have said a number of times, that Facebook is my only connection OUT to people for the reasons you listed. I try to not feel resentful but I admit sometimes it creeps in when I read that friends, church family had some great party or outting that I wasn't invited to because "we knew you wouldn't come." It's a 50/50 thing, but I long to be given the invitation and pray for a good day.
ReplyDeleteOne thing I would add is something my oncologist told me. I am a breast cancer warrior, have chronic insomnia, I have diabetes, psoriasis and just today started the testing to see if I have psoriatic arthritis...I have a few issues, but his advice applies to everything.
Here it is...simple. "There is no right way to do cancer. You DO it however you can get through it."
I got all kinds of advice...eat blueberries, don't be afraid to show your bald head, and think positive or take those thoughts captive. In serious illnesses, we go through stages just like anything else.
I was convinced I was going to die when I was told I had cancer. I had to work through my fears until I was ready to fight. It did not help me in the least to have people telling me to reject my fears, pray about it or listen to praise music. I was scared and MAD at God for not delivering me from the ordeal. The pressure put on me by friends and family was immense and nearly crippling to me. That's when my doctor shared his wisdom with me. I moved through it and adapted and in a few weeks I was ready to fight.
So I don't care if it's cancer, Lupus, MS, Fibro, RA, PA, or any other...Just remember There's NO Right Way to do (insert disease). You do whatever it takes to get you through!
P.S. I learned that my Father, Abba was not the least bit offended or phased by my anger at Him. "It was then that He carried me."
Thank you, Tina!
DeleteI love all of these! I would add - please don't take my polite answer of 'Fine thanks' as gospel truth. I figure you don't want to hear the real answer all the time and quite frankly I don't want to wallow in it either. But every now and then, look me in the eye and ask 'How are you really?' Be prepared to listen to my honest answer. It does my spirit good.
ReplyDeleteOh, I LOVE this! So, so true!!!
DeleteThat's the truth. It's probably a good thing for me to remember to use on others too. Sometimes you get the sense that they are giving you a standard answer and you don't want to push. But that question is a polite way of getting a second opinion. :)
DeleteYou are all very brave. At 70 God has blessed me with continued health and energy. I praise HIM daily for it because when one loses their health, nothing else can replace it! I pray for your continued strength!
ReplyDeleteThank you for your kind words and your prayers!
DeleteHello
ReplyDeleteMy Name is Jim, I really thought my wife ( Wendy ) would not be alive today and yet she is.
We had a journey that was like no ones I have every heard of. It spanned many years.
The education and lessons were immense and it took us all over the world in search of a
cure for her. I wrote it out finally after the journey came to an end so it was available for other to
read. If you have had a similar journey I would really like to hear about it. We have not met anybody so far. Here is where you can read about it. It is on my website http://www.thereesewellnesssystem.com.
I would really like to hear from other who have been here.
Thanks
James Reese
It's nice to have a place to read and know others feel my same emotions and frustrations. And, yes, like others here, God heard plenty of my anger, but i too learned that He already knew how i felt and still loved me. Thanks for all of your authenticity.
ReplyDelete