Feeling a little lonely in this diagnosis today.

[Hope75]

Perhaps I should keep myself busy:)  I am being bombarded by family and friends who are wanting to know about my diagnosis and treatment.  I can't answer all of their questions and they are extremely skeptical, which I don't blame them.  Nobody has all the answers, is what I keep telling them.  It's fairly new in the medical community and highly controversial, so the questions will not stop anytime soon, I understand.  

Also, my doc's office is not that friendly when it comes to speaking with the Dr.  I seem to be bothering them when calling re: a simple question.  It is just discouraging.  Maybe it is raining too much for my mood today:)  It's just one of those days where I am simply trying to take care of myself and it seems as though people are jumping in my way.  The other issue was that a friend stated the only person she knew with Lyme was an elderly MD who contracted Rocky Mountain Spotted fever in my hometown and passed away.  This wasn't exactly the picker-upper I was needing.  Can anyone relate?

[Hope75]

Ah!  Validation!  It is so terrible that we have these issues, but the silver lining is that we are not alone.  Everyone is spot on.  I wouldn't know my posts from yours.  I put on my happy face and laugh, while I cry a bit on the inside.  

But, I get reminders from the wise, especially from the elderly in my workplace.  They all have ailments.  Today, one of them said, " I am Hope, and I am a wonderful person - tell this to yourself - I have to sometimes ".  He said that because I said I felt "fair" when he asked me how I was - plus I look like I haven't slept for 24hrs.  I almost cried in front of this little man because he could hardly walk and he was giving me pointers on raising my spirits.  Then, I had two others, one with end stage cancer and one with end stage asbestos poisoning (?).  Neither could hardly breathe.  They were upbeat and chipper.  I strive to get their attitude, I'm just not there yet.  For one thing, I'm 33, not 83, and I should not be sick.  I am though, so I need to accept me in any shape.  

Thanks guys.  We will hopefully see more acceptance of Lyme and more treatment options.  In the meantime, I'll work for that "wise old man" attitude.

[jason80]

Ditto here. We all discover that the only people that ever really get it, are the unfortunate extreme minority that read websites like this.

My least favorite comeback from the healthy trying to be helpful is, "Have you seen a specialist at so and so clinic" as if, if I would only get myself off my lazy butt and get an appt, run my tests, I would be on my immediate road to recovery.

[patsy10]

I can totally relate. This is a lonely place to be.  Even if you have a supportive family and friends, I think someone has to live this to understand this.  We look healthy so no one can see what is going on with us.  We are all living this here so we understand.

[gorbybelle]

yes - unfortunately I too have experienced the same 'attitudes' from healthier individuals - I suppose it is hard to grasp from the outside - how someone can be 'so ill' one day then the next be firing on all cylinders - [well 3 out of 4 anyway].

I have tried to explain things to my family - I am still not sure if they sometimes must think - I am a good actress - which hurts - but that's how it is.

All we can do is take one day at a time - keep our dreams - big & small - then one day - when our bodies and minds are recovered - we can once again ...........

[wonko]

When discussing this topic with my LLMD, he was quick to warn that "you won't get any sympathy with this diagnosis."  

I am "lucky" in that I don't have many friends in the medical profession blasting me over the non-existence of chronic Lyme.  Most are just confused, because they thought that I'd be better in <1 month.  

Also, because the severity of my illness waxes and wanes, people will see or hear from me on a "good day" and then be completely confused when a week later I am ill again.  

My illness progressed to the extent that I had to reduce my work hours, and the professional impact is apparent.  My whole life got taken off track and turned upside down.  Yet the support I get from healthy friends is still mostly non-existent, or in the form of platitudes such as "Aw, well, I'm sure you'll feel better soon!" I know such wishes are not malicious, but they do minimize my experience, and sometimes make me feel worst than the silence I get from others.  

I don't have great advice for how to handle these situations.  But sometimes misery loves company, so I'm pulling up my chair.

Bottom line for me is that I want to get better, and I still believe that I can.  My day dreams are filled with thoughts of my comeback, I try to focus on that and not let others wear me down too much.  (But a little griping here and there...)

[JackieCalifornia]

So sorry.  Maybe talk to your family and friends head on:  "I know you mean well, but I have been struggling with this for a long time and searching for answers.  I believe I have found some good medical help now, and I ask your support while I pursue this. I understand that you may not agree, but I need your support.  I will keep re-evaluating the situation, but I very much need your support."

People are frightened by what they don't understand, and perhaps it's hard for them to think you might have something beyond their own comfort zone and control.

I'm sure they want the best for you and don't quite know how to give you their support.  Be explicit; maybe that will help.

You are not alone.  I've heard some of the same from my family, but I just tune them out, tho it's not always easy.

[Hope75]

Thank you for your kind words.  I don't know if I can get away, but it's a wonderful idea!  I was in your place with no diagnosis for 2.5 yrs and it is not fun either.  I thought I would be more relieved if I was diagnosed with anything, as it would be an answer.  It is helpful, but then you have a different set of stressors and worries as well.  It is a step forward and I just have to remind myself of that.  Good luck in your quest and although it's terrible, at least we know we are not the only ones with these issues:)

[skarey]

I'm so sorry you are having a bad day.  Try to stay positive ( I know it's hard to do sometimes).  Try to stay busy and keep your mind busy (other than thinking of lyme related things).  I've been trying this myself.   I get so wrapped up in my illness and it takes over my thinking and life.  

I'm sure you are feeling very overwhelmed with the new dx.  I can not relate to this yet, as I don't have a dx of anything.   Just take it one day at a time and see what treatment brings you.  

Can you go anywhere away from family and friends for a day or two to relax and take care of yourself?  Maybe this will help.  

Smile you are on the road to recovery!!
  
Take care,
   skarey