[pamelashly]

1. I don't look sick
2. I feel alone and isolated.
3. The quality of my life plummeted.
4. There are no words to describe it.
5. There is no cure and it never goes away.
6. It makes me feel weak and less than a whole person.
7. If energy were measured in money, I have to pay $100 for what other people can get for $1.
8. The disease controls my life, I don't.
9. When someone asks me to do something, the first thing I think of is my disease and how much of my limited energy is this going to use up.
10. It makes me feel hopeless.

Notice pain did not make it in the top 10 - For me, the pain is awful, but these other things are worse.

 

[keebler]

Hi and welcome.

Have you talked to your doctor how you are feeling? Maybe some of your meds might need tweaking?
I know living with lupus stinks.
Take care,
Lyn

 

[debatat]

Hi and welcome to the site. It is always interesting an revealing to see what people put in their list of dislikes against lupus. Whilst none of us wants to look sick constantly being told how well we look is irritating! I even had my gp say it once, when she had a student in the office teaching them about lupus! It makes you want to shout, look inside, see how I feel. However I think we all put such a brave face on it that no one except those who know us well see past it.

Do you have good friends who visit you or can meet you for coffee or go to the cinema or something occasionally? It does us good to get out, even if we have to cancel, if they are good friends they will understand. It does us good to have something to look forward to as well.

Take care.

 

[loretta moreno]

I feel the same. I'm afraid to anything. I work and it drains me. I can only work or clean my house I can't do both in one day. Today I'm exhausted and feel like I can sleep all day. I feel very depressed and it comes and goes all the time. Today is a bad day. I also feel very alone. I am new to this site. Never been on a site before.

 

[Jessica1]

I like the way you've worded number 7 - very descriptive - I might use that one myself
I hope that number 2 lessens as you get to know more people here. I really feel like I have people who understand me and know how it is without having to explain too much and the bonus? Nobody here knows just how awful I look when I don't have the energy to make an effort!!
Try to keep smiling and take care,
Jess.

 

[AmberLPN]

1. I don't look sick
2. I feel alone and isolated.
3. The quality of my life plummeted.
4. There are no words to describe it.
5. There is no cure and it never goes away.
6. It makes me feel weak and less than a whole person.
7. If energy were measured in money, I have to pay $100 for what other people can get for $1.
8. The disease controls my life, I don't.
9. When someone asks me to do something, the first thing I think of is my disease and how much of my limited energy is this going to use up.
10. It makes me feel hopeless.

Notice pain did not make it in the top 10 - For me, the pain is awful, but these other things are worse.

i totally can relate to how you feel. For so long i thought i was crazy.

At first my family would give me a hard time. they would say things like your always sick, or always in pain. I know they were probably sick of hearing me complain when doctors could finding anything major.

Now that I'm in the process of getting diagnosed, I fell even more alone. My mom has been great. She knows a lot about lupus because she has it but she has been supportive. we talk on the phone when we can.

Like you, i also joined this site looking for support. I haven't got much yet but I'm hoping that changes. If ever you need to talk please feel free to message me. It would be nice to have a friend who can relate to me. it sucks being almost 28 and not being out enjoying my 20's.

Good luck my dear,

A

 

[Jenn34]

This is exactly how i feel. And im also tired of complaining. Im not a complainer. But i hurt. All the time. I will have a great day.. And boom out of nowhere a flare. I used up my spoons.

 

[Bane]

Thanks for the share its useful for the many others here...it seems to partially explain me

 

[blossom]

This is exactly the same problems i face everyday. When i started complaining after sometime even my parents were about to think that i am not doing anything because i am very lazy to do even my daily activities. Adding fuel to that some of my friends and relatives they will never understand that i am tired and they will think like i am doing all these to avoid them. Its actually pretty hard to explain our situation to them. All i used to do is that just ignore them and move on towards my goal in life.

Be happy always dear,
Blossom.

 

[Huskystella]

1. I don't look sick
2. I feel alone and isolated.
3. The quality of my life plummeted.
4. There are no words to describe it.
5. There is no cure and it never goes away.
6. It makes me feel weak and less than a whole person.
7. If energy were measured in money, I have to pay $100 for what other people can get for $1.
8. The disease controls my life, I don't.
9. When someone asks me to do something, the first thing I think of is my disease and how much of my limited energy is this going to use up.
10. It makes me feel hopeless.

Notice pain did not make it in the top 10 - For me, the pain is awful, but these other things are worse.

I can totally relate to your top ten list as I'm newly diagnosed with SLE in Dec 2016 and this is easily my list right now.