Seeking Advice on How to Handle Family Members Who Don’t Believe You

Hi @longhaulerjess, I've had COVID twice but fully recovered both times but I don't think you are alone with your struggle. Here's a similar discussion that you might want to read through to see if there may be some suggestions or answers for your questions.

-- Has anyone had a loved one tell you it’s all in your head.: https://connect.mayoclinic.org/discussion/has-anyone-had-a-loved-one-tell-you-its-all-in-your-head/

There is a newsfeed post that I think you might find helpful although it doesn't have anything to do with Long COVID - Day 6: Creating your Resiliency Roadmap - https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/newsfeed-post/creating-your-resiliency-roadmap-day-5/

I only share the info when I feel the need. And, I preface it by saying my Duke doctor diagnosed me. It’s not something I’m casually throwing out there. Also, I know the truth of the matter and if someone doubts me, that’s their choice. I have no control over them. I don’t think I have encountered skepticism before, but if I did, that’s their choice. I’m glad they didn’t say anything to me. If they had, I’d likely be polite, but drop the topic. LC is difficult to understand until you experience it. I was skeptical before I got it too. But, back then, I didn’t know anyone who had it. Now, I do.

Hi Jess,
I think that's awful that your family doesn't believe you have Long Covid! What do they think you have? Good Heavens! It's your body and you know how it feels and what you have! I've never had Long Covid or any kind of Covid so I don't know anything about it but I believe that you do have it. I would suggest that you pray about it and just try and not bring up the issue around those who don't believe you. If they ask how you are just tell them you are fine; whether you are or not.

Are you older; a Senior? I'm 78 and I have noticed that since I am older and a Senior some people tend to act like maybe I'm getting senile. (I'm not!) They tend to treat me like I'm a lesser person. Especially younger people take on this attitude.

I will say a prayer for you. I'm sure God will make things work out just fine!
PML

My PC thinks it is all in my head. I have had LC since 2022. My blood pressure is so unstable. I can't believe I haven't had a stroke.

I don’t know why your family wouldn’t believe you! I had Covid in December of 2022 and have not gotten my taste or smell back yet. I also have other symptoms with balance and occasionally head pain. My family says I talk about my loss of taste and smell all the time, but I actually don’t…it is like a death! Good luck on your personal health journey. You are your own advocate. Take care!

I am so sorry you are suffering but even worse, going through this with what sounds like no support. I had Covid twice, first time in Feb 2021, very mild case in both cases actually. The first time I didn’t even know I had it until my husband was incredibly sick and went to get tested and tested positive. I only had sinus issues (but all my adult life I suffered with sinus allergies) I recovered from the acute infection, it wasn’t until 4/5 months later I started have these unusual symptoms. Lightheadedness, heart palpitations, muscle weakness and twitching, tremors, sinus congestion that would not go away (even til this day that has been one of the most persistent symptoms) GI issues, nerve pain, balance issues, pins and needles sensation in my head and some fatigue but not as bad as I have heard most people have, most days I have energy.
I didn’t know what was happening for two years, going to all of these specialist and E.R visits, with normal test results for everything, MRIs, ultrasounds, CT scans, upper endoscopy, colonoscopy, EMG test, even had a EP study performed in an attempt to do a cardiac ablation (cardiologist saw some svts on the heart monitors I had to wear) the ablation was not done the EP study didn’t show any disturbances (that’s what the Electrophysiology doctor said) even though the monitors (all four times) showed SVTs, all those test and no answers as to why I’m having these symptoms. I was very depressed, I mean really depressed, I cried, didn’t talk, didn’t eat, barely drank anything. My family knew that behavioral wise this was completely out of character of me. It wasn’t until a cousin suggested Covid, she had read and even knew of a few people going through something similar. I did extensive research on the subject, that’s where I found Mayo Connect and found a LC clinic here in NYC.
I was diagnosed with “POTS” like symptoms but no official LC diagnosis.
As far as my friends and family even though all these tests showed nothing, I did have a few episodes where I was outside and I would get extremely lightheaded and my husband and daughter would look at me and say “are you alright, your lips are pale and you don’t look good”. I have a oxi pulse meter at home, they would see my heart rate jump up to 130s while I’m sitting still. But I think the change in my behavior let them know something was not right also. But I’m sure they were skeptical but never said anything. And who could blame them, all these test showed everything is normal. I read them numerous stories on here, at one point my husband said “I can’t listen anymore” because people on here are suffering, horribly. I showed them several videos on the subject. And I said “so all these people, we ALL are just imagining this!”
But as far as what you are going through, the stress of having no one believe you and getting them to believe you is going to make you even sicker. I agree with the other person on this thread, unfortunately you can’t make anyone believe you, not even doctors. Your job is not to make anyone believe you, and honestly you shouldn’t have to make a loved one believe or support you, that’s something them and their conscience is going to have to battle, knowing a loved one needs them. It’s your body you know something is not right. YOU ARE NOT ALONE!! I know you want and need the support of your family and friends, love ones should support you no matter what! Even if they don’t believe you, they should trust that you know your body, they should be giving you comfort. A shoulder and ear, even if they are skeptical. Sometimes I tell my family, I don’t need suggestions or conversations just a hug or hold my hand and sit with me.
You can do what I did, show them videos there’s a plethora of them. Read them some stories from here. At the end if they still aren’t on board, you have to move on and put that energy into yourself, I know that may not be what you want to hear but there is nothing you can do to make them believe.
I pray for you and them, I pray that they are never in a position where a “loved one” isn’t there for them when they need.
I know this was very long but this touched me, I send you light, prayers, healing and positivity. Please reach out to me if you need, sometimes comfort and support can come from least likely places…a stranger.
I wish you better health and happier days.
Take care

I’m sorry you have family members that do not understand. I predict this adds even more stress on your system which is already overwhelmed. I understand as much as another LC person can yet I am lucky as I have an extremely understanding and supportive husband plus many family and friends that get it and always send me information they read in hopes it may help. I have others I interact with including almost every doctor that not only do not get it, they verbally challenge and dismiss the reality of long covid.
You asked for advice regarding family so I can not relate there but maybe my experience with doctors and others can help. I reach out to sources like this forum and other social media support pages for long covid. Reading others experiences helps one feel less misunderstood and alone. It is an insidious virus and beyond shocking it can still relapse and wipe me out after suffering so long and implementing every supplement and recovery recommendation I can muster.
Besides that one suggestion, I believe you. I understand. I hope you find relief and I hope you find mega support

Thank you all so much for your support!! You all make great points and great recommendations. Very inspiring words. Some people are just wicked.

My husband believed my 8 months of LC last year. You find out who your friends and supporters are. I don't usually share much health info with friends because of their reaction to my diagnosis of celiac disease 14 years ago (gluten). I got "you don't have celiac, you have some gluten intolerance and mostly stresses. You need to stop getting on people's nerves." When one has to eat gluten free then you have to ask the waitstaff if the food is celiac safe, which can come across to some as high maintenance. Look out for yourself and what need, even if others are not there for you.

Thank you for all the hugs I have so much more symptoms of long covid but I'm not up to writing about it right now. It has been a nightmare!