Latest Entrecard Card DroppersI have found myself doing a lot of soul searching so to speak lately. I don’t know if it’s the New Year or if it’s just that getting older, either way it’s where I am in my life. A few years ago when my health got worse, I thought that my life had ended because of lupus and chronic pain amongst other health issues. I was very angry because I was sick. I had left a really bad situation in my life and looked forward to new things, but I got knocked down by chronic illness. It was not the life I signed up for, but then again what part of my life has been what I signed up for. Little by little, I have learned that really it was my minds way of coping with the many obstacles of living with a chronic illness. I’ve had to learn a lot of coping skills.
So many people that I’ve talked to either have no idea what lupus is or act like they know what it is and really don’t know. I am the kind of person that I would rather you ask me what’s going on, then having someone stare at me and wonder what was wrong with me. Recently, I was with my family at an appointment and there were 3 kids sitting there. One was a little boy about 8 and the 2 girls were about 8 to 10 years old. The kids were with their rather stern Grandmother. From what I observed the kids lived with her. This particular day I was in my wheelchair as it was one of my bad days. The little boy was on the hyper side to me. His Grandmother was constantly on him and one of the little girls like she was a drill sergeant in my opinion. Kids will be kids. The little boy asked me “Why are you in a wheelchair?” I was quick to respond because I had thoughts of Grandma coming unglued at the boy. Rather then get into I have lupus; I explained to the little boy that my legs are weak at times when I walk. His sibling said under her breath “You don’t ask people that kind of thing.” I told the young girl its okay he asked the question. I would rather someone ask me what’s wrong then to stare at me and wonder what was wrong with me. “
It’s brought about a lot of questions in my mind. “Does other people mind if someone asks what’s wrong with them or rather have someone simply stare at them?” I prefer to talk about my illness, rather then someone staring at me like I’ve got the plague, even though I call lupus the plague. I decided a long time ago that I would be open about my struggles to help others understand chronic illness. So it brings me back to where I started about getting honest with myself. I have learned in the last few years that I needed to be honest with myself. I have found that it was easier for me to stay in that depressed mode rather then pull myself up. At the moment I am trying to pull myself up from depression. In 2008 I made some progress in my recovery, but I had to come to the point of accepting I may have to take depression medication. I have a tendency to not do things out fear of being in pain. If you’ve ever been in pain for any length of time you will understand what I mean. So this year I need to learn to pace myself because when I feel good I tend to want to get everything done real quick and then I am down for 2 or more day. So really I can’t win because I want to be “normal”, what ever that may be. So this year I am going to work on pacing myself and not being so afraid of being in pain. If I pace myself maybe I will have more good then bad days. So I leave this post with a couple of questions.
1. “Would you rather someone ask what was wrong with you or would you rather someone stare at you, or would you rather they turn their head?”
2. How did you get honest with yourself and your life chronic illness or not?
Filed under Doctors Visit, Life with Lupus, self esteem | Comment (0)No Responses to “Honesty and Living with Chronic Illness”
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Great post.
Accepting I’m getting older is for me more difficult than I expected.
Life goes by so fast, that I’m afraid I can’t do the things anymore I want to do.
Diabetes, asthma and chronic bronchitis are enough to deal with, but last year I’ve had months I could barely walk. So I needed a walking stick.
My face is well preserved, so people think I’m younger.
So what is that for a women who is out of breath within a moment and walks with a stick one day, and at another day runs hard to catch the bus without even needing one extra breath?
People stare. Oh yes!
So I either dress funny or smile at them and then blink, so they don’t know what to do.
I’d rather have them ask me what is the matter.
Or I tell them when there’s an opportunity, like a busdriver telling me to hurry up. “Oh, that’s what I tell myself too. We look a lot alike. Do you have asthma and a bad hip too? I admire you for dealing with the pain so well, driving people to and fro all day.”
I still haven’t figured out where precisely the line is between complaining and telling the truth. LOL!
laane,
Thanks for sharing your special words. I can understand that walking some days is difficult. I have days where I feel more like a patient in a nursing home. These days it would be easier to stay in bed, but get up even if its just to make it to the sofa.
chronic chick
I would prefer someone ask me and not stare.. It’ll just make you feel uncomfortable and self-conscious.. You either ask or turn your head the other way.. I don’t have chronic illness.. But it’s just my 2 cents worth if you don’t mind..
I don’t have a lupus but I am experiencing chronic pain for almost 8 years now because of rotator cuff injury. As a nurse, I learned to treat the patient with respect whatever diseases they do have because it cannot cover the truth that they are humans and do possess “goodness” in them and that is what I treasure.
Don’t be conscious for other people reactions because same reaction can have different meanings and it will just lead you to misjudge them. The most important thing is that you are true to yourself, accept what you have and does not let it to be a hindrance to live a happy life. Treasure all the moments, bad or good because it is the essence of living. We all do carry our own disease, its just that yours is called lupus
I have chronic pain from peripheral neuropathy in both my hands and feet. It had become a debilitating issue long before I was diagnosed as diabetic. I take pain meds that moderate the pain so it is tolerable most of the time, but it leaves me a little glazed over, if you know what I mean. I would much rather someone ask me what’s wrong that just stare or turn away. When I’m asked, I try to encourage people to exercise and watch their diet so they don’t end up like me.
I understand your depression issues, too. I was told by one of my docs that chronic pain chemically causes depression. I was quite surprised to learn that the hormones or enzymes that our bodies put out to help deal with the pain suppress the ones that help us feel good.
As to your second question, I don’t know if I’ve really gotten honest with myself yet. I think I still run away into my computer instead of really dealing with the issues of my illness.
Thanks for this post. It’s really making me think.
On my bad days, I use a walking cane. I would rather be asked what is wrong with me. I like talking to people and would love the conversation.
Mentally moving past my limitations was a hard one. My resentment over the loss of my health was devastating to me. Even though it was a slow onset, I still suffered with horrible depression.
My saving grace was reading motivational books and listening to tapes. My family was instrumental in bring me out of the depression as well.
It seems easy when I talk about it or write about it. But that is deceiving. It was not easy. But the journey was worth the ride.
Now I do what I can. When I get tired, I sit down. When my strength comes back, I finish what I was doing. If it takes a few days or a week, I don’t stress over it any more. I know that if it is that important, someone else will do it or it can wait. I AM IMPORTANT!
I used to put everyone else ahead of me. No more!
Be well Chick!
I am not sure how i would feel, as I do not have any chronic illnesses. Maybe at first, I would rather people mind their own business, but as I learned more about and accepted whatever might become, I would probably rather have them ask. Kudos to you for sharing with the kids that it is OK to ask.
Good luck to you on your journey to conquer this disease.
I have a chronic illness but it’s not something you can see. I personally don’t feel like I want to explain anything to anyone. However, I probably wouldn’t want people staring at me, but at the same time it really doesn’t matter to me what people think and I wouldn’t want to have to explain my situation to everyone.
I think the problem is that what offends one person doesn’t offend another. Some people get offended if you ask them what happened or why they are in a wheelchair, and other people don’t. I guess each situation is unique.
Geri,
I understand what you mean when you say you don’t feel like you should have to explain. I feel that if I don’t share people don’t know how to react to people with a chronic illness. I went through years of people denying that I had an illness until a doctor finally listened to me and realized my pain was as bad as said it was. This was when I felt validated. Years of nerve pain from lupus. Although, he is not my doctor anymore I am forever thankful to him. I have a 15 year old and I feel that if kids aren’t educated about illness they don’t understand it. My lupus is not always seen, but their is times it does show. We all deal with illness differently.
Thanks for sharing,
Chronic Chick
That’s a brave share. Powerful writing.
I’d rather be asked which gives me the option of if and how to respond.
One thing that triggers me is the look of pity in people’s eyes…
Take good care of yourself.
Recovery Rocks!
Roxie
http://recoveryrocks.today.com/
1. “Would you rather someone ask what was wrong with you or would you rather someone stare at you, or would you rather they turn their head?”
I am deaf. A common reaction people make whenever they learn I am deaf goes something like this: “Oh! OH! Omigawd. Omigawd! OMIGAWD! I am soo soooo sooooooo sorry to hear that! Ohh! I didn’t mean it that way!”
I dunno. I don’t mind the attention when people stare because it tells me they find myself interesting.
But for what it’s worth, I would like to point out that most people do not like to be reminded of their mortality or the fact that they take some aspects of their lives for granted (such as seeing, hearing, walking, having arms and legs, being healthy, etc.)
Keep on truckin’ ..
)
Thanks for sharing what your preferences are – educating us is powerful and it’s the only way we will know how you want to be treated. A speaker named Tony Alessandra has what he calls The Platinum Rule – “Treat people how THEY want to be treated”. I happened to find this blog following another link (gotta love the web) and I would LOVE to connect with you all over at CJ Scarlet’s Kindess Cure Community at http://www.TheKindnessCure.com.
She has lupus and scleroderma, and yet was included in Marci Shimoff’s book “Happy for No Reason” because of an experience she had after following a Tibetan Lama’s advice. She’s now committed to getting at least 20,000 people to practice ONE act of kindness a week for the next year which will mean 1,000,000 acts of kindness in the world. I support her vision and invite you to do that too!
Love and Light,
Michelle
happy new year 2009 to you.and succes to you too
This was an amazing article.
I had an experience of this sort about six or seven years ago. I’d gotten into a bicycle accident and bruised my fourth cranial nerve–short version, my eyes wouldn’t track together, so I had to wear an eyepatch, and had to switch eyes every day or so so one wouldn’t get stronger than the other. I found it a lot nicer to be asked what was going on than to be just looked at strangely, though the questions got a bit odd. My personal favorite was “Are you trying to make some kind of fashion statement?”
Best to be asked, I think.
Ravyn,
That’s a good one a fashion statement. That’s about as good as saying a wheelchair is a fashion statement because its purple. I have dealt with the strangest comments. One time I went to a certain well known retailer and asked for electric cart and the older woman refused until I told her I had a neurological disorder. Mind you I think the word scared her more then anything.
chronic chick
To be fair, you don’t see people running around wearing an eyepatch on different eyes every day–I hadn’t even known that that sort of thing was the case before I had to wear the patch. It wasn’t the world’s most tactful question, but I can think of worse, and high schoolers aren’t known for their tact. And are known for their tendency to come up with odd fashion statements.
Your situation, though–I have no idea what the retailer could have been thinking. Yeesh.
i feel uncomfortable with people staring at me like i am an alien. i would rather they ask me what’s wrong with me because i always wanted to share my story with them. because somehow i feel that having them know the story behind will give them a bit of understanding about lupus. since lupus is not that popular.
about honesty. i got honest with myself when about 2 years of dealing with lupus. at first i got depressed everytime i can’t do something because i have lupus but later when my boyfriend then husband talk to me and showed me i am still lucky despite of the disease, i got to accept my new life. and acceptance have help me a lot.
This is an inspiring post. There are so many parts of your experience that match what many of us go through no matter what the chronic condition may be. I know about lupus from seeing what it does to my wife – who’s had the diagnosis for about 15 years but had symptoms well before it was official. Your writing is so moving and honest. Thank you for being so open about struggling with this illness.
As to your questions, depression is certainly visible to someone who knows the symptoms – but they never want to talk with me directly about it. I wish they would. Others just see I’m not performing in my job well and start writing me off. And it took me many years to learn what depression was and then to admit its full impact on my life. But I did get there, pretty late but I got there.
I think as we face the reality of life, then we get honest with ourselves and others. What we need to do in life is to find the root cause of our problems and deal with it, and not find excuses to cover up our problems. I respect you, lady.
Dear Chick,
Thankyou for your comment on my blog. I have been thinking of you ever since – and wondering how to reply to your question, “How do you ‘treat’ your lupus?” The short and simplest answer is “With Kindness”. It has taken me 12 years to come up with that one
The second answer is “With Mindfulness”. This one requires a kind of discipline, and practice. Have you ever heard of a Vietnamese monk called Thich Nhat Hanh? He has written many books and is a poet too. It is difficult to breathe in and be fully present in the moment when the moment is ghastly and you’re praying for it to pass. But since we are here and alive and lupus is part of that being alive, breathing in and accepting it is the first step to vanquishing fear of it.
Fear of Lupus is our greatest obstacle wouldn’t you agree? The eyepatch, the wheelchair, the kidney/liver function tests, falling hair, excrutiating nerve pain – every inch of us is a forcible reminder of our mortality in a way others can blissfully ignore. Unless they are beautiful beings who love us unconditionally!
I hope you have some of those in your life. Come visit again soon.
Shaista
Hi Shasita,
Thanks for your visit. Ya, we sure do live with not knowing when our mortality will be which we do live with the reminder 24 hours a day and 7 days a week. Its something you can’t get over. The fear is unreal…. I don’t wish it on the worse person on earth…. Thanks for stopping by
chronic chick
I have had Lupus for about 10 years now. I do not need a cane, but I have horrible leg pain at times.
I don’t mind if any one asks me, but people just seem to say ‘oh, I am sorry’, or they think its nothing really serious.
I recently was diagonsed with secondary Sjogrens Syndrome.
I want to share that I have a great Endocrinologist, and he has seen that his patients with autoimmune diseases benefit greatly from having hormones balanced.
I know I would get real sick right before my period.
That has decreased now that I am using bio-identical hormones.
Please try this if you can. I pray that all of us will get help for this suffering.
Soodi,
Very interesting. I too get a lot of Oh, I’m sorry. Most have no clue including my own Mom and Brother.
Chronic Chick
I have a condition called Ehlers-Danlos Syndrome and I have type III. I deal with joint subluxes, dislocations, and a great deal of chronic pain. I also use a wheelchair on days that I do not get around well. I look normal (other than braces I may be wearing or the wheelchair) so when I park in handicapped parking and walk into the store (on good days) I get all sorts of stares. I would prefer people just ask me rather than stare and whisper. It makes me feel as if I am doing something wrong. I also would like people to ask me what is wrong rather than staring or looking away. I have gotten used to it for the most part, but it does bother me at times.
As far as getting used to my illness and accepting it, I don’t believe I have yet. I was born with this, but was told that nothing was wrong with me all my life. It took me not healing from a hysterectomy and having weird complications that could not be explained for them to say something was wrong and to go to Mayo and that is where I first heard of this illness. I was diagnosed in Madison, WI by a doctor that knows a great deal about this disorder. It has been 8 years since I was diagnosed and I concentrate on all the other problems in my life (believe me there are plenty) so that I do not have to concentrate on how much my life and how much I have changed. If there is a quiet moment my brain goes there and I immediately find something to do.
I know how you feel about trying to find that exact mixture on how to do as much as you can when you feel “normal” and then hopefully not paying for it later. I always pay for everything I do when I have good days. I also have gotten to the point I am much more complacent than I need to be out of fear of having the pain quickly escalate to a 10 and then being in bed for days trying to recover. It seems that I will be at about a 3 pain wise and then out of no where it shoots up to a 10 in a matter of 2 minutes. I hate it because it can happen in the middle of a store and then I have to sit down wherever I am (even on the floor) and wait for my kids or my husband to go get one of the stores wheelchairs. The worst is when we go somewhere that doesn’t have a wheelchair and my husband has to carry me out. I am always humiliated when this happens.
Your posts have helped me explain things to my husband that I have not been able to get through to him. I am not sure if it is that I am not saying it right or if it is just that it is coming from someone else. Either way I want to thank you.
Danielle,
Thanks for stopping by. I can empathize with you. I’ve had times I get up okay and then I can not walk 5 minutes later. I’ve resorted to using my wheelchair in stores because I don’t want to be embarrassed.
Chronic Chick