Are You Better Yet?

General
1

I was walking my parents' dog and a total stranger asked me, "Are you feeling better?" She had recognized the dog, though she and I had never met. Apparently my father told her about me. I have no idea what he said, though it was probably inaccurate: he doesn't understand my condition and seems to think I'm just lazy.

I really don't know how to answer this question, whether I know the person or not. I say, "Thanks, I'm ok."

But here's what I'm thinking:

Yes, I have recovered from the surgery itself.

No, it didn't help.

Yes, I'm still sick.

No, I don't know why I'm still sick. Maybe it's scar tissue. Maybe my CSF flow wasn't totally restored. Maybe I have an undiagnosed condition, in addition to the Chiari. I have no idea.

Yes, I told my doctor.

No, he doesn't believe me.

No, I can't go running with you.

No, I can't work an 8 hour day. I can't stay awake, I can't focus, I can't think straight and I'm always in pain, even if it's not excruciating, organ-failure-type pain.

No, I don't have a "plan."

Yes, I do feel helpless and sad, at times. I am grieving for my lost self. I'm also angry.

No, that does not mean I should see a psychiatrist. It means I am frustrated with feeling like crap all the time and being dismissed by everyone around me, especially doctors. I am not mentally defective, nor am I a danger to self or others. I just feel like crap.

No, I don't feel comfortable answering your questions. Why do you ask them? What do you gain from this exchange?

If you know nothing about my problem and don't care to learn, if you feel no empathy and can't offer any help, then why are you asking?

Are you rubbernecking?

Am I like reality TV?

Do you think if you pressure me into saying I'm fine, then I'll really be fine? My symptoms will disappear because, in your view, they were fake to begin with? Do you think somebody needs to set me straight and it might as well be you?

Are you just curious?

Or do you need to be needed? Are you trying to prove to yourself, how helpful you are?

If you were in bed with the flu and I came bursting into the room yelling, "Time's up!" and dragged you out of your house to run a marathon, would you be grateful?

Well, for me, "normal" is like having the flu every day and meeting your expectations is like trying to run a marathon with a fever in bedroom slippers.

But I just say, "Thanks. I'm ok."

2

Hi Mizfeldy, only a little while before I read your post I'd been reading an article with some tips from a clinical psychologist on how to stay well. One tip resonates with your post and gives the advice, just as you did, to say "Thanks, I'm ok" to people outside your circle of support:

2. Define your circle of support carefully.

Isolation leads to depression, and it is so easy to isolate when you feel lower then dirt. People may surprise you. Peripheral friends may step up and be terrific supports, while others you thought you could count on can’t be there for you. If someone inside the circle asks, “How are you?” – tell them the truth. When someone outside the circle asks you the same question, lie. Say, “I’m fine!” and change the subject. Too often they can’t handle the truth and they suck any energy you have taking care of them. If someone asks if they can help, say yes. Accepting help is a gift to them. Trust that someday you will be on the giving end. One big way someone can help is to go to doctor’s visits with you. The extra eyes and ears take the pressure off you when the news is emotionally laden and important, even if the news is good!

“A patient of mine found her mother would get hysterical at any medical news, so it was better to keep her at arm’s length. But my patient’s mother could do laundry for her, and that made both of them happy.”

There are some helpful ideas in the full article if anyone is interested http://myheartsisters.org/2010/10/29/dr-aletta-five-tips-depression/

3

Hi Mizfeldy, you have a support circle here in this community so do please continue to reach out to us. You have, though, been through a lot and I wonder whether you could have another look around you locally to see whether there is somewhere else you can go for support and help to deal with anxiety and depression. It seems to me that most people dealing with chronic conditions and pain suffer from stress and stress related anxiety and depression. Have you asked your doctor for help ... I wonder if some counselling might help you.

We've also suggested to members here that they use the advanced search facility in the members tab to find other Chiarians in their area to connect with them. I have psoriatic arthritis and through the Ben's Friends community have made two good friends in the UK that I meet up with a couple of times a year and we also speak on the phone. The great thing, when everyone else thinks I look ok, these two lovely ladies simply 'get it' without many words needing to be said.

If you want to take a look, click on the members tab and then the 'advanced search'. Put your city in a seach and also do a separate search for your state.

4

Hi, mizfeldy!

I'm tired of lying and saying " I'm ok" or "I'm fine". On one hand I like when someone asks " how are you?", on the other, it's painful to tell the truth. I too always feel like crap. It's tough when even the closest people just assume your "normal" or "good" should be equal to theirs.

5

This is very true, Fugu, it's tough. But given I will always struggle to change what other people think because they aren't walking in my shoes, I try to change how I react to them as this is something I do have control over. Doesn't always work (especially with my mother-in-law!!!) .... and something else I try to tell myself is that people are doing their best, trying to show they care the only way they know how. When I realised how much I was letting other people upset and drag me down was when I decided to try looking at it differently.

Fugu said:

Hi, mizfeldy!

I'm tired of lying and saying " I'm ok" or "I'm fine". On one hand I like when someone asks " how are you?", on the other, it's painful to tell the truth. I too always feel like crap. It's tough when even the closest people just assume your "normal" or "good" should be equal to theirs.

6

This is very true, Fugu, it's tough. But given I will always struggle to change what other people think because they aren't walking in my shoes, I try to change how I react to them as this is something I do have control over. Doesn't always work (especially with my mother-in-law!!!) .... and something else I try to tell myself is that people are doing their best, trying to show they care the only way they know how. When I realised how much I was letting other people upset and drag me down was when I decided to try looking at it differently.

Yeah,focusing on what you have control over really can make a huge difference! :)

7

Jules G, thank you for responding. I actually find it very helpful when people - peers - can relate to my experiences. Even when a person can't relate, the words, "I'm sorry you had a hard time," can make me feel better. To be honest, when people tell me to get counseling, I don't feel very supported. I was a counselor - a social worker - before I fell ill, so I am aware of how counseling works; I have not found it helpful, personally. But I do appreciate your response.

Fugu, I'm glad you related to what I wrote. Thanks for saying so. It's like, for most people, "I'm fine" means the gas tank is 3/4 full, whereas for me, it means I'm on a quarter tank, at most. It's not exactly lying but it does feel like a partial truth, like I'm ducking their question.