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Old 05-06-2013, 07:56 AM   #1
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dont know what to say

i think i m moving toward being depressed. it is a bit unusual for someone with an active positive personality. but i v had a chronic pain - misdiagnosed a few times and still i have no clear diagnosis .. and the health system is slow, seeing each specialist takes like 3 months. i honestly feel that i v had enough and it is like feeling totally disappointed. my problem has not been only limited to the pain itself, but also the reaction of people around whenever i wanted to talk and share my situation. every time i talked with someone, without knowledge s/he either connected it to stress, or feeling tired, or like i m pretending. the problem is that just before all these physical pain i was the person that was making them relaxed. my friends all used to say your house in like a temple and we feel relaxed with u and u r very calm. so it is like they v forgotten to whom they say these now. after a year, still my family does not know if i experience numbness or pain or itching or burning or tingling in my hands. it hurts when u see people have no idea of your problem and even with this they diagnose you, especially it hurts me when someone says it is all stress. i think i would ever be anxious because i m such a calm person. but i know i m moving toward experiencing no interest in anything because of pain/because of no understanding from others/because of a health condition that is not still clear 'why' and i have no idea if i can ever know. if you read these, i know u and others cant help, but maybe please be little kind to the people around u, maybe they suffer from a similar situation.

 
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Old 05-06-2013, 09:11 AM   #2
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Re: dont know what to say

Shahila

I sent you a big cyber hug, did you feel it?

Quote:
every time i talked with someone, without knowledge s/he either connected it to stress, or feeling tired, or like i m pretending.
If it's any conciliation, I know what it's like to wonder if people believe you or not. I have gone through that with CFS/ME (Chronic Fatigue Syndrome). Your situation, like mine, is what we call, "The Invisible Illness." They include others, such as: Lupus, Cancer, Fibromyalgia, Depression, Diabetes, and several others. Problem is with these 'invisible illnesses' is that people often make insensitive statements like, "You don't look sick," or "But you look so good," or, "You're just depressed, tough it out..." I'm sure these people mean well but they just don't know any better. In my mind I tell them that "My invisible disease is more real than their imaginary medical expertise." (that helps me to smile inside myself)

My CFS has caused me some depression in the past, and I have gotten my antidepressants figured out and it seems to help me with that part of my illness. You must have the same health plan as I do, 3 months between specialists, isn't that a bit silly. And they always add, "You're lucky that they are sending you to him/her, he's the best their is - and well worth the wait."

Well, Shahila, I guess my message is, I understand. Lots of people in here understand. I know it seems like you are isolated, but you are not alone by any means.

 
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Old 05-07-2013, 08:07 AM   #3
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Re: dont know what to say

Quote:
Originally Posted by zimzampow View Post
Shahila

I sent you a big cyber hug, did you feel it?



If it's any conciliation, I know what it's like to wonder if people believe you or not. I have gone through that with CFS/ME (Chronic Fatigue Syndrome). Your situation, like mine, is what we call, "The Invisible Illness." They include others, such as: Lupus, Cancer, Fibromyalgia, Depression, Diabetes, and several others. Problem is with these 'invisible illnesses' is that people often make insensitive statements like, "You don't look sick," or "But you look so good," or, "You're just depressed, tough it out..." I'm sure these people mean well but they just don't know any better. In my mind I tell them that "My invisible disease is more real than their imaginary medical expertise." (that helps me to smile inside myself)

My CFS has caused me some depression in the past, and I have gotten my antidepressants figured out and it seems to help me with that part of my illness. You must have the same health plan as I do, 3 months between specialists, isn't that a bit silly. And they always add, "You're lucky that they are sending you to him/her, he's the best their is - and well worth the wait."

Well, Shahila, I guess my message is, I understand. Lots of people in here understand. I know it seems like you are isolated, but you are not alone by any means.
zimzampow,indeed, we are not alone in this - unfortunately everyone is suffering in a way as soon as they get some sort of chronic illnesses. My life has changed since last year. It has had + sides but it has definitely made me sad with everything especially my relationships with others. I dont understand why people can get happy. These 'quotes' that you wrote are really true and sad, and i know how much they hurt - the same here. i had an initial mri last week and the result of radiology was normal. when i told the result to my sis, she got angry with me and said dont tell us about ur situation anymore, because u r fine. that is also my life.

 
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Old 05-07-2013, 08:29 AM   #4
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Re: dont know what to say

do you work on a computer or spend a lot of time on a computer? I recently was diagnosed with tennis elbow and I had some burning, itching, tingling, numbness in my hand. It came from using a mouse! repetitive motion did it.....I'm wondering if that could be your problem? I got a brace from the doctor, it's just a little circular band, called a "band-it", and it seems to help a lot. I understand you're depressed because of pain, but if you could get to the root of the pain, I think it may help. I'm not downplaying your depression. What about joining a support group for chronic pain? At least you would find people who would take you seriously.
Good luck to you. I hope you can feel better physically and emotionally

 
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Old 05-09-2013, 04:48 PM   #5
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Re: dont know what to say

Wow, hearing that from your sister, that's gonna leave a bruise. But you know, that's her problem and her point of view. Not necessarily the rest of your family, or your friends, or your doctor. I know about having people tell you that it's this or that, like stress or you just need more rest. Damn if they were only right, wouldn't that be great?

You've probably heard this before but when someone offers me their 2 cent diagnosis I immediately think two things;

My invisible disease is more real than your imaginary medical expertise. (This makes me smile inside of myself.)
I think they mean well, but they just don't understand.

Except for my wife, I thought no one believed me not even my doctor, (even I wondered sometimes!) But when I got my medical records for Social Security Disability and read through them, I found out how wrong I was. All my doctors talked about the severity of my fatigue and my primary doctor wrote a strong letter for SSI disability stating that he had eliminated all other possibilities and I do, in fact, have Chronic Fatigue Syndrome. He even filled out their stupid 'questions for the doctor' form, which I know he hates doing. How much can I lift, how long can I stand, Is your patient a malingerer, etc.) After a conversation with a friend I finally figured out that it was my own mind playing a mean trick on me. Now, I know they believe, I was making great money before my affliction, doing what I loved to do. Why would I leave that kind of money behind just so I could draw a pittance from my Social Security Disability?

Sorry for rambling, I do go on. I'll close with 2 quick questions for you.

Have you read anything about Lupus?
What do you suspect it is?

Well, good luck to you Shahila, I hope you find support from your loved ones and learn to ignore the negative idiotic things that others say.

 
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Old 05-09-2013, 11:45 PM   #6
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Re: dont know what to say

Quote:
Originally Posted by zimzampow View Post
Shahila

I sent you a big cyber hug, did you feel it?



If it's any conciliation, I know what it's like to wonder if people believe you or not. I have gone through that with CFS/ME (Chronic Fatigue Syndrome). Your situation, like mine, is what we call, "The Invisible Illness." They include others, such as: Lupus, Cancer, Fibromyalgia, Depression, Diabetes, and several others. Problem is with these 'invisible illnesses' is that people often make insensitive statements like, "You don't look sick," or "But you look so good," or, "You're just depressed, tough it out..." I'm sure these people mean well but they just don't know any better. In my mind I tell them that "My invisible disease is more real than their imaginary medical expertise." (that helps me to smile inside myself)

My CFS has caused me some depression in the past, and I have gotten my antidepressants figured out and it seems to help me with that part of my illness. You must have the same health plan as I do, 3 months between specialists, isn't that a bit silly. And they always add, "You're lucky that they are sending you to him/her, he's the best their is - and well worth the wait."

Well, Shahila, I guess my message is, I understand. Lots of people in here understand. I know it seems like you are isolated, but you are not alone by any means.
Thanks. I won't get depressed I know - because I have no time for that anymore. I have to do many things and take care of many things in my life , so even i like to feel sorrow I often can't because I have to constantly work. Just 2 days ago I learnt that my agent is selling the house I live in. So besides all my work and health issues, I v been looking for houses. If I don't do all things who is gonna do? Nobody. I have no choice if I want to live . I try to avoid people who are not understanding. I can't tell them you don't understand because it makes me worse ... It makes me at the same time sad too. I m having MRI for spine next week , and will see the neuro next month to put a step toward knowing why. One could be ms but it might not be. Also I know I have high thyroid antibodies (border overactive) but i cant blaming all the symptoms on overactive thyroid.. It feel it would be superficial, like my gp who diagnosed me with carpal tunnel for 10 months only because of numbness and tingling in hands, and only because that was the first thing he could think of. For example I v experienced something like ms hug but I don't know if that mimics something else. I v read about Lupus, I ll say it to neuro.

I don't know what to say, I only wish u get better by all means.

Last edited by shahila; 05-10-2013 at 03:38 AM.

 
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Old 05-10-2013, 12:48 PM   #7
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Re: dont know what to say

hey Shahila

When asked, tell them, "I don't know, the doctors are still testing." Then immediately change the subject to them like, "How have you been? Or how are your kids doing." People love to talk about themselves, it's human nature. I learned that from selling remodeling construction projects for the last 25 years to home owners. (What I learned is that if you let people talk about themselves they will almost always reveal what it is they want and what it's going to take to close the deal).

Good luck Shahila, I hope they figure it all out soon, and can fix what ever it is.

 
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Old 05-10-2013, 06:39 PM   #8
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Re: dont know what to say

Quote:
Originally Posted by zimzampow View Post
hey Shahila

When asked, tell them, "I don't know, the doctors are still testing." Then immediately change the subject to them like, "How have you been? Or how are your kids doing." People love to talk about themselves, it's human nature. I learned that from selling remodeling construction projects for the last 25 years to home owners. (What I learned is that if you let people talk about themselves they will almost always reveal what it is they want and what it's going to take to close the deal).

Good luck Shahila, I hope they figure it all out soon, and can fix what ever it is.
indeed. that is how it is.
thanks, the same to u! love :X

 
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