Having long COVID, how is your mental health?

Thank you, mbryant, for your beautifully-expressed posting. It describes in valuable detail a critical issue that needs we readers to respond to with our comments.

Reading about other people’s LC experience has provided me with a kind of reassurance: my LC symptoms are mild compared to those of other people.

Another source of reassurance for me is how intensely LC is being researched. I feel confident that treatments will be forthcoming for different symptoms as we go along.

In the meantime, may this test of your inner strength make it grow stronger.

mbryant
You state my feelings exactly! Yes, I know some people are in wheelchairs, some people are in more pain, some people have lost their minds. I KNOW this, but does that invalidate my three year illness that has kept me mostly on the couch? Unable to plan a home project, a birthday, or a trip. I have missed weddings and anniversaries, and milestones that I will never get back.
I have LOST three precious years of my life just existing. I really don’t see the point of it.

The Pollyannas who tell me to be grateful, are LIVING their lives, and I wish they could experience my symptoms for ONE day. I would not wish my symptoms on my worst enemy for longer than that.
I hear this grateful tripe from doctors, friends and family. They need to walk in my shoes, and see how it feels to lose your life, but still be alive.

Hello fellow friends above,

I just want to say that I was in tears when reading the posts the 3 of you just posted.

I too feel exactly like you. I was having a bad day today and decided to work on my project that I have been doing slowly. This project involves trying to help long Covid patients be heard.

I know I’ve spoke to you before in chat in the past and I’m not sure if you remember me stating that I was asking questions and getting responses to forward to Social Security administration, different lawyers, that I know, my doctors, and others that help long Covid patients try to get the medical help they need.

I was having a bad day today, and thought this would make me feel a little better. I spend most of my days in bed and only look forward to getting out of the house on my doctor days. If I go out otherwise it makes me crash for way too long, I like you, don’t have a lot to look forward to and just exist. So I figured what I’m creating may help in someway to do more than just exist.

Once I have finished with what I am trying to accomplish, I will post it on the site. It is just showing others how many of us exist, how we feel, and show them, this disease is real. I am so tired of being made to feel like I am crazy every time I mention, I have long Covid. I went to the urologist this past week and explained what I was going through and that I had long Covid. They seem to treat me completely different once I mentioned that, I actually had to call back and get them to update my chart so that I could have their information correct about myself. Very discerning.

I want to thank you again for sharing such a beautiful insight on something that’s not so beautiful. If there’s anything you know, you would like to add besides what you’ve written so far, please let me know and I would love to include it. I am trying to let them know, as much as possible on exactly what symptoms we all have. And also let them know what we’re not getting help with.

I know I personally was extremely active and now for the last three years I have been considered serious LC, but have had issues for 4 1/2 years total and have not been myself . Now I’m 100% disabled. I can’t even walk on my own more than to the bathroom and back. Otherwise I need to use a cane or a wheelchair. I “crash” sleep 12-19 hours most days. Frustrating to say the least.

I hope you all have a lovely evening and look forward to more chats.

Thank you, Kelly.

Hi @mbryant1380. I am also three years in on this journey and everything you just shared is why I sought a mental health provider. I know different insurance or lack of it can be very daunting, now online reasonable cost sources helpful, so I hope you have someone that can assist you with the calls etc. if that’s helpful. It seems the things that worked for us before just arent enough with the complexities of our challenges here. Things like cognitive behavioral therapy, their expert wording of bullet reassurances/uplifting pictures I have taped on counters and in phone album so always there. Also finding things you love doing at your capable realistic level like planting a flower in a pot instead of gardening with a shovel outside🙃 I actually cried yesterday because I couldnt reach something and the reaction of my body trying just hit that emotional nerve that I think all of us have a right to and I hope these suggestions can give some light and healing to everyone🌈

First of all, I’m so very sorry you’re suffering so much. It’s awful not to get answers, I know about this as well. I’ve suffered with no taste or smell for going on 2 years in December. I’ve had treatments of Stellate Ganglion Block Injections and they bring slight help, but nothing lasting. I try to keep busy and I have to say I don’t make plans with friends, because it’s usually dinner or lunch and not having any taste or smell along with several food sensitivities makes it difficult. I wish you good luck on your health journey.

I completely agree! It so easy for some people to say things like that who are not going through it. And as far as doctors, I’m getting to the point of not even try to get answers. I just don’t understand if I’m telling them, I didn’t have ANY of these symptoms prior to having Covid, what is so hard for them to believe?? That includes people who don’t believe either. So I just made up these symptoms because what, I’m bored? Countless trips to doctors, E.R, money spent is because I have nothing else better to do? And people who know us should see there is change in us, we where working, active, full of zest, actually living life and now some of us barely leave our homes.
There is so much in this world and especially in the medical world that has yet to be discovered and explained, people (including doctors) should humble themselves and think about all the things I mentioned above, that something is wrong! And exactly what you said, trade places with me, experience what I am, and on top of that, no one believes you, how would you cope? What would you do?
But here WE BELIEVE you, we hear you, we understand you and will listen!
I pray you get to that light at the end of the tunnel! I send you hugs and healing energy 🫶🏼

Thank you for your outlook on what gives you hope. And glad to hear that what you are experiencing is on the milder side of symptoms, but still so sorry you have been affected at all.
Sending you healing energy ❤️

Hi Kelly, yes I remember you! I think you want to start another support group outside of Mayo, did I get the person right! Lol.
I will be here to help you in any and every way possible. Just reach out. What you are doing is so selfless, inspiring and most important…needed!
I again, so sorry you are being treated the way you are (the way most of us are) I pray the Medical Community on a whole open their eyes and ears. Wake up to what’s on, right in front of them! Please reach out if you need me.
Sending hugs 🫶🏼

Hi, I’m really sorry you are in this boat with so many of us. I love the suggestions you just made! I so love being outside and with nature but maybe sitting outside potting a plant/flowers.
I was seeing a Therapist but I don’t know, it was so early in my illness maybe I wasn’t ready and felt it wasn’t helping. I think I just wanted the physical symptoms to go away, that my mind wasn’t open to just needing help mentally and emotionally coping with the physical. I’m going to revisit that, Thank You!
Sending you hugs and healing energy ❤️

Hi, and so sorry for you as well. Yea making plans with friends is usually a no go, or I cancel. My mind and heart want to but the body says different.
I did go to my sister in law’s house with my husband and daughters on Sunday and we laughed, and it felt so good! I don’t laugh much anymore so it was nice and needed.
I pray you’re able to enjoy food again and are healed from anything else the illness has robbed you of.
Sending you also light and healing energy! 🫶🏼