Has anyone had a loved one tell you it’s all in your head.

Posted by solmcaz @solmcaz, Aug 13, 2023

My ex wife and I both had long covid for 10 months after she brought the virus home from a vacation to see some friends back east. Now that she is recovering from long covid and I’m not she thinks it may be all in my head. I have stage 4 COPD and my doctor said it may take me longer to recover due to the severity of my pre existing condition. I have now sent her back to her friends back east.

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I think many people don’t understand long Covid because they had it, got over it, and felt like they had the flu...nothing more. Sad to say some people just can’t understand anything that hasn’t happened to them. I find it hard from family members, but I think It’s even worse from doctors who refuse to acknowledge what we’re going through.
I’ve seen so many doctors over the last sixteen months.
When I ask about follow up appointments, they just look at me and say no reason to do follow up!
That to me says they don’t believe me or my suffering.

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@dloos

I think many people don’t understand long Covid because they had it, got over it, and felt like they had the flu...nothing more. Sad to say some people just can’t understand anything that hasn’t happened to them. I find it hard from family members, but I think It’s even worse from doctors who refuse to acknowledge what we’re going through.
I’ve seen so many doctors over the last sixteen months.
When I ask about follow up appointments, they just look at me and say no reason to do follow up!
That to me says they don’t believe me or my suffering.

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I can't relate. I'm so sad you have to ensure this double suffering. I experienced the disbelief, the disinterest, the questioning of motives and the annoyance prior to finding a PASC (long haul) doctor
COVID divided our country in so many ways. Mask vs no mask. Vaccine vs no vaccine, and ultimately, doctor vs patient. I feel we've lost the medical profession that once was. For the first time in my life, that I'm aware of, medical professionals are hurting many ppl in various ways. Certainly psychologically and emotionally. Unintentionaly. It's very sad. I see part of the problem as stemming from a heavy reliance on standard, basic blood tests + imaging instead of detailed direct patient evaluation thru dialog. New conditions don't show up in inapplicable blood work ups And, there is also a limited connection and familiarity with individual patients. Everything is now tech based. It's all about the EHR instead of the patient, imo.
I have no faith that my medical needs will be addressed in the future should I develop anything further or different that my current PCP doesn't treat. She limits her practice to PASC, cardiology and preventative medicine. Every referral she made (endocrinologist, neurologist etc) had a waiting time of 3-6 months - starting from after receiving medical records. And there was no choice of practitioner. But being treated as a hypochondriac, drug seeker, malingerer or mentally ill rather than physically ill person is truly damaging. It can be life threatened. It's certainly discouraging and depressing. The crosses many of us have to carry------if people could only see them!
Sorry for your circumstances and difficulties. Praying you find a compassionate knowledgeable doctor soon. Praying discouragement doesn't further burden you.

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Thank you rsfcowgirl
It is the hardest challenge I have ever been through. I think most posting here would agree. I never would have predicted that I would have an illness that there was no treatment or even relief from!
It is like the aids epidemic. I feel I will probably not be around when it’s finally figured out.
Anyway, I keep looking for answers and sympathetic doctors, even though I haven’t been very successful so far.
Good luck to all.

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Yea, I had to cut ties with a dear friend who seemed to delight in laughing at me when I told him I eas finding it very hard to get help for long covid. He replied sarcastically: “Why do you think that is?” I told him he sounded like my doctor, who told me he didn’t think I’d even had Covid. After the third sarcastic “why do you think that is” I told my friend “I don’t want to have this conversation anymore” and hung up on him. Our friendship died during that phone call. It took me a few weeks to realize I did not need ANYONE in my life who did not support me. We are no longer friends. Believe people when they show you who they are:

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Loved ones AND doctors. I guess you made up the COPD too?? Not sure how often you talk to her, but if you really want to make her feel like you feel when she doubts you, doubt her and doubt EVERYTHING she says. “ That line was long” ...you respond, “ I DOUBT that, sweetie, maybe it was all in your head , “it’s hot outside”, you respond “ I Doubt that, maybe, mentally, you feel it’s hotter“.... 😂😂😂. Trust me, she’ll understand. Feel better. 🙏🏽

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@dreaminasecond

Hi Solmcaz, I’m sorry. And for everyone else, I am also sorry. I understand. I myself feel very adrift right now. My family does not believe me and regardless, they don’t want to hear about it. So, I’ve got a psych that I see regularly and I am about to start a 5 week, 4 days a week, 5 hours a day Outpatient program for developing better coping skills. It’s like I have found myself alone with my altered body; it’s scary. Additionally, I don’t understand why I don’t have more support from my doctors. There’s so much I don’t understand anymore. It’s quite depressing, I find. Sorry to be a downer. 😘❤️

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Absolutely. One of the ER doctors. She was out of line and beyond unprofessional. She told me they were going to do a CAT scan. To prove her wrong. I am a 64 y o woman. This young new doctor was clueless. She may of made it through medical school, but in life she FAILED miserably. I reported her.

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Some people who do not have LC just don’t get it and tend to be skeptical. I cut off ties with a dear friend who repeatedly ridiculed and laughed at me whenever I tried to talk about my long covid issues. Family has been more understanding and supportive, though I had to overcome some skepticism in the beginning. After 3.5 years of seeing neurologists and developing epilepsy, they believe me now.

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