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Need Help - Hematology won't do testing

Blood Cancers & Disorders | Last Active: Jan 30, 2023 | Replies (77)

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@wiggins32

Awww. I would gladly hug you back! There's a huge gap in society, and even our families, connecting dots between the physical illness and PART TWO, which is the physiological illness associated. Most people are uneducated how the brain is affected by medical conditions. In my own family, no one could see my illness, e.g. I didn't look sick. And it was almost a curse that I had always been super healthy...never hospitalized, no broken bones, no Rx meds, etc. This was the case until my early 60's. Adding the "you look fine" element, I was told very painful things (by my most immediate family) that I was "attention seeking", "making up illness to get sympathy", etc. So, I really understand what you are saying. Being very sick is hard enough, but dealing with loss of our identity in the world (career, social life, family events, friend time, etc) created an isolated life for me that I had never known. I hadn't done anything wrong; yet I was feeling punished for being less than 100%. Not only did doctors accuse me of imagining illness, but my employer ridiculed me, friends fell by the wayside too. We may survive the medical crisis, but it's hard to unfeel, to unhear, or to unhear the hurtful things said in our most vulnerable times. The emotional toll of physical illness lasts much longer than the body's recovery. I have heard this from too many people to ignore it. What do you think and feel about it? Hugs

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Replies to "Awww. I would gladly hug you back! There's a huge gap in society, and even our..."

Yes. My daughter tells me I have munchausens and that I made everything up. Now she is going through her own terrible medical immune issues and that has stopped her telling me that but she won't share with me what's going on with her. I am my grandson's nanny. Sounds enough like Granny, no? Never do things with them except Christmas, Easter and maybe birthdays. But always "timed" exactly. She sends lots of photos when they do things and go places with friends, but the only time we see our grandson is when she needs a babysitter and she lives 4 miles away....Never calls on the phone. Only texts. When my bowel burst and I almost died three times during surgery, and I lost my job I was literally "alone" for over 5 years. No one called or visited. My boss sent me an email about how difficult the first three weeks had been without me!!!! While I was lay in a hospital bed with no doctor for three weeks with a colostomy and wound vac attached to me. So I learned to be alone. Even with a husband living with me. We were just talking about it last night oddly enough. He didn't get it when i said "I was alone"...