Have you ever been made to feel like you had to prove how sick you were?

[nash2]

The worst thing you can do to a person with an invisible illness is to make them feel like they need to prove how sick they are.

[AllHis]

Exactly...

[Hidden in reply to AllHis]

I've been lucky in that I've had some very good support which has been truly appreciated. Love and hugs Lynne xxxx

[AllHis in reply to Hidden]

My dilemma: the doctors. If a blood test comes back normal, that makes it self-induced anxiety. No one is taking me seriously. I'm a 52 year old menopausal woman. All tests are normal. They are focused on prescriptions for mental health. *sigh*

I like what Wayne stated. If the doctor in front of you is not listening, get in front of one who will.

It's getting harder and harder today. Specialist, like a liver doctor, require a referral. And if the doctor does't believe you need this specialist, no referral. And I have really good insurance THAT DOES NOT REQUIRE REFFERRALS. I CAN'T WIN! To find yet another primary care physician is even harder! I've had 2 really good ones who were accepting new patients, review my file and decline my "application."

[AllHis in reply to AllHis]

AND

I inquired about a study through FLF's link. I spoke on the phone with a wonderful gal who presented my case to the physician... They can see how I'm suspicious of right rib pain with no gall bladder and unexplained bile reflux. Yet they need a liver biopsy to confirm Fatty Liver... which I need a referral...which I need someone who listens...

With all this going on, all I can do in limit my Rx, and follow Wayne's diet and exercise plan. That's my plan...

[BrnThrasher]

Nash2, can you please move my other post that I made so that it is in reply to this question. I meant it to be in reply. If it is not possible, don't worry. Thanks.

[AllHis in reply to BrnThrasher]

So glad to hear another voice! I was feeling guilty replying so often in this community.

I am all in with the diet for the liver too! No diagnosis yet, only suspicion. I just feel at home here walking with people freely "telling it as it is!" Love that! Thanks Wayne!

[Jobreeze77]

Painfully hard.....having an autoimmune disease like myself fibromyalgia and not being understood believed.....except for those other sufferers.....much to be done....we need a cure....

[Jobreeze77]

Have to have so many tests.....I'm exhausted......reflux....bile......itching galore.......ah.......I want be donating my body......as I care about others.......

[AllHis in reply to Jobreeze77]

Jobreeze,

Hang in there. Tell yourself the worst is behind you & start taking positive steps one at a time. Read up on the olive oil. One positive improvement for me: throwing away prepared dressings with soybean oil and replacing it with olive oil. I have the fibromyalgia label too. Well, that doesn't tell me anything...You need positive steps out of your dark cloud!

So today, to humor my doctors who all think it's an anxiety disorder, I saw a Psychiatrist. I didn't want to go because I had stopped all prescriptions to heal my liver (nothing seriously needed like insulin or the like...) & had anticipated this Doc prescribing new drugs today.

He surprised me. He really listened. (I was thinking of you and others here.) There is now a genetic test, called GeneSight test, that actually helps your doctor understand what medications work best based on your genetic makeup! My mom had adverse drug effects, and I have unusual drug effects...

"Avoid medicines that may cause unwanted side effects."

HA, Wayne! I've been laughing to myself all day...I'd love it if it came back no "right" medication! AND WHAT WOULD YOUR RESULTS BE, WAYNE!?! I'm still laughing about it...

In earnest, this may help the fibromyalgia group.

[nash2 Partner]

It is a very difficult disease to have with so many different problems. Your desire to help by donating your body is certainly a generous thought. Not many people will do that.

[Fight4yourRight2Live]

One time stands out. My sister just had knee surgery. I was at her house doing a list of things she needed done. I was losing steam and eventually got the short list done. As I was leaving to go home and do my own errands including taking care of my elderly mother,

She made a jab at me. Something about how I wa afraid she would ask me to do something else. My butt was already dragging and it took every effort to do what I could. She made me feel like I was lazy, not sick.

[Splodge60 in reply to Fight4yourRight2Live]

I was in hospital and about to be sent to respite place for a rest. I got a really nasty text from unsympathetic sister saying “ Get off your b.......a......., go home and look after your husband”. Husband did not swear but said something similar and, I was too weak to argue, so I went home xxxxx. I really do understand.

[Mariah1203]

every single day. I posted that pic years ago on my personal timeline because that is how i felt at the time, still do

[Bbohnie]

Prior to my diagnosis with NASH, I had been diagnosed with chronic fatigue syndrome. My EX convinced my 3 children I was lazy( I worked fulltime as a teacher and coach then dropped the coaching and worked at a movie theater) I was avoiding spending time with them...ie I loved them less than my job/my students and that I was greedy because I didn't spend money on them. I was the consistent Primary breadwinner and person who carried insurance. To this day, my children resent me for being sick. Turns out my heart wasn't functioning correctly- I had to have a pacemaker before I was 50. No one wanted to believe I was really ill because I did so much even though I was exhausted, sleep deprived(sleep apnea and sleep disorder) and my immune system was so broken down that I wouldn't run a fever when sick and couldn't remember things.

[ReeTaylor in reply to Bbohnie]

I understand what you are going through. I am so tired that sometimes I cannot even clean my houses or dishes out of the sink. I go back and forth wondering if I am lazy or if I am really sick. I am wiped out and have been dragging for a long time. People do not understand what we are going through. I am sorry to hear about your children. It makes it that much harder to get through this without having a support system.

[Hidden]

That is what I'm complaining about! Women's Healthcare. Sure and have seen it with others. Women are sadly overlooked! My sister died of complications from liver disease, pretty sure she had NASH/Cirrhosis! Would not place her on dialysis, she wanted so badly to get on the transplant list she was ignored! I'm sorry I don't have the details because we were astranged before all that! I know she was decompensated liver disease! What was odd, their interns kept apologizing to me about dialysis! I was very upset! Fluid overload and off the charts BUN, creatinine and blood sugars! It's just NO management to me. Always in ICU. Last admission she was about to crash in the ER. THEY TOOK HER TO THE FLOOR! She died in the early morning hours in ICU. ME, the FAMILY were asked to leave, due to her son being upset! The ICU nurses had a full core patient- my sister, I said please call me if she codes. Her nurse said she promised. SHE DID NOT! I slept on my chair with my clothes in waiting. At 3:00 am my phone rang. The ICU Nurse said they were coding here. I asked since when? She said since around Midnight!!!!!!! My poor sister was given CPR for almost 6 hours and had a complete flailing chest before they had family coming in! Like I said I'm a nurse, I'm Hospice Nurse. I would NEVER treat a family member like that ever! Complained to Director of Nuring, CEO, Called Coroner. Nothing no one felt that ANYTHING was out of sorts or inappropriate!