This is a lonely disease and judgments so harsh

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Alimah
New Member


Date Joined Sep 2015
Total Posts : 5
   Posted 10/19/2015 8:34 PM (GMT -6)   
I am new here and came looking for support and connection with others who suffer with chronic fatigue. I have been diagnosed with peripheral autonomic neuropathy (with there was a neurological section here), basically malnutrition (although I eat my body doesn't do much with it starting in my stomach and all the way through), and chronic fatigue syndrome (or as they are now calling it - systemic exertion intolerance disease). I am grateful to have a great group of people helping me medically including a neurologist, nutritionist, psychiatrist, and therapist and yet, in my every day life, I feel so alone. I don't have boils all over my face, I'm not in a wheelchair, I can walk and talk for at least part of the day, in other words, I look normal and I am constantly being faced with judgments and criticism. If you can't see it, it must not be real.

I've done a little reading here and can relate so well to those who are grieving the loss of who they once were. I used to wake up with the birds full of energy, ideas, places to go, people to see. Now I wake up feeling like I haven't slept for years (which I haven't) and hope I can manage to get at least "something" done. I am pursuing alternatives with the nutritionist my focus at this point. I'm also working really hard at acceptance that this is now my life and I will find a way to make it worth living and yet just talking to myself gets old and there are days where I am just so full of doubt about my abilities to cope with all of this.

It's not that I don't have friends and two great sons who try and understand as best they can, but I lack the understanding one gets from being able to share and support others who "just know" what this feels like and how absolutely life changing it is. I hope that this might be a place I where I can just be me without all the judgments that I look fine, so I must be fine.

Alimah
New Member


Date Joined Sep 2015
Total Posts : 5
   Posted 10/20/2015 7:16 AM (GMT -6)   
Hi Lara. Thanks for reaching out. I'm just getting used to using a forum and I believe there is a chat room. I'll have to check it out - may have to wait a while before I can use it or figure out how to use it. :) Even using a forum is challenging when I struggle to get my brain going, so have patience while I work on it. I keep meaning to ask my doctors if they know of support groups in my area and yet, like you, it would be one more "appointment" that I would have to allocate energy to which I don't ever have enough of.

Alimah
New Member


Date Joined Sep 2015
Total Posts : 5
   Posted 10/20/2015 7:35 AM (GMT -6)   
Hi again. I did briefly see your last post and I'm glad either you or admin pulled it. Privacy is important and we need to figure out how to connect in such a way that they whole world doesn't get our private information. I'll keep learning, as I'm sure you will, too.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7467
   Posted 10/20/2015 2:31 PM (GMT -6)   
If you add your email information to your profile only Healing Well members can see it, and you can use it as a basis to start a one-on-one conversation if both parties agree.

You can tell if someone has their email listed by checking to see if the little envelope icon on the left side of a post, under the username, is colored blue!

Hope that helps.

nagant
New Member


Date Joined Dec 2015
Total Posts : 2
   Posted 12/8/2015 10:38 PM (GMT -6)   
Alimath, Your story sounds like mine, people don't understand until they have to got through this. I have lost everything including my family over this and chronic pain. I tried for many years to put on a happy face when I was around people but yet when a person feels like they are about to die on the inside people really don't know or understand. I have just felt like my life is over and has been for a while. I go for days, up to five without eating until I got a hold of some bud and boy do i eat now and life seems so much better, not as depressed. Take Care.
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