Such an isolating sickness

I had LC for 8 months last year (caught covid on a March '23 bike tour). Covid doesn't seem to have the support networks some isolating conditions/diseases do, such as AA and celiac have. One has to deal with doctors and others that have minimal understanding of the physical and mental impacts. If one searches using "covid support groups" there are some FB and other sites that pop up. I have had celiac disease for 14 years (triggered by H1N1 flu); I refer to it as a vocally transmitted social disease. I can't eat at most restaurants because 20 ppm gluten and above triggers my immune system, so I can only eat with friends under controlled circumstances. It takes time to get used to being socially excluded. I have lost friends because they think I'm overreacting and a bread crumb can't hurt anyone. My local celiac chapter has social events for kids thru adults, our tribe. Without such a base, one has to fill in with other things, new hobbies, reading, exercise, screaming into pillows, and whatever works.

It is hard to understand a chronic disease, even for the person experiencing the disease.
I have found that true friends are there when you need them, and understand when you cannot be around people.
I have lost “friends” that took it personally when I had to turn down invitations. Especially if your illness is not visible, there are lots of people who will not understand.
I cannot control how people react to me and my situation. If they choose to think I’m exaggerating, I can’t control that.
I spend quite a lot of time alone now. Some by choice because it’s just the nature of my sensory sensitivity, and some from the misunderstanding of others.

To this discussion is critical. It speaks to the mental health issues in separate and connected discussions.

Friends and family have visited the city in which I live and don't understand why I don't feel well enough to meet them for coffee or a meal. Like others, I do make plans and then have to cancel which is worse because I get my own hopes ups that MAYBE I'll feel well/strong enough to get "outside" presentably dressed (amazing how much easier it is to look presentable for Zoom meetings!) and to make the effort to go out and make conversation.

Your points about celiac, @kayabbott , are understandable to me now. I had to learn more for friends so that I could be supportive and know the way to help if we were to meet.

At 77, retirement sounds appealing yet I think it would be even more socially isolating if I didn't have work to allow me to engage in social media interest groups or with clients and colleagues.

May those from Mayo and elsewhere reading these posts do the advocacy we need.

I too feel very isolated as a sufferer of LC. I do not have a significant other and feel my siblings and adult children have zero understanding of how crippling this year. I am blessed to have a job that I can do remotely and allows me to continue to support myself financially and provides decent medical insurance. At times my brain function is not decreased and accomplishing my work is challenging. I try to keep my spirits up by focusing on what I do have. That too is difficult. And when I’m suffering from a bout of PEM, it’s easy to think of my life as one not worth living. I’m not saying I’m going to commit or try or even consider suicide. I’m saying thoughts and feelings about how miserable life is can spiral into not just feeling physically ill but also sap the willpower to keep trying to heal.

So sorry you have these isolating feelings and that your family can not support you - if they only truly knew.
I hear you about how you feel you are losing g your will to live even though you would not do anything … just to tell you somebody cares and validates what you said .

I also think often that my life is no longer worth living. I am at about 10% of my former life. I cannot drive, and because of sensory symptoms, it’s actually hard to be around people, noise, or bright light.
So, I am home alone a lot of the time. My family supports me the best they can. I also know they could not handle my suicide, so I continue. But, it really doesn’t seem worth the effort.
As the time is now passed two years I am not hopeful for healing.

Covid most definitely has given me a sort of social PTSD. When Covid officially hit, they sent us all home. I worked from home until the first vaccine came out. Then they wanted everyone back in the office - even through they did not require anyone to get vaccinated. I resigned rather that work in what (to me) seemed an unsafe environment. That’s when the social isolation took a wrong turn for me - people were getting together, going out to eat, and I just wasn’t ready for it. I’m four years into my long Covid. Everybody else is over it, I still mask in public places. I still mask in my doctor’s office. I avoid restaurants and bars, much as I would like to go. So I feel in my case some of the fear I have may be irrational or exaggerated. I have also lost good friends - and family who no longer are supportive. And yes, I am getting a lot of skepticism - even from the long Covid clinic! All of us on this thread have experienced the skepticism from doctors, family, and friends. I think all of us would like to be out and about but for various reasons don’t feel ready or physically cannot. Covid did this to us, this is not how I would normally be. I want to get back to normal but it is taking me longer than others. It is what it is - I try to read up and stay on top of latest information on Covid. That helps drive some decisions. So yes, some fear still, in some cases warranted, in some cases exaggerated. Work on it as best you can, if there are things in your control you can do. I hope friends and family will come around and be more supportive.

I know exactly what you mean. I am 6 months into this nightmare. After I received Paxlovid I begun to have strange symptoms. Cough, shortness of breath, dizzy, fatigue, sleepless nights and the worse, brain fog. My doctors are trying to treat each symptom. I feel isolated from the world. God bless you. My thoughts are with you.

I feel it too...3 +years. Tried nicotine, Plaxovid, vitamin C and arganine - I go for 2, sometimes 3 days and crash and sleep close to 24 hours. ( More sometimes). My husband is patient however my family isn't. Thoughts to you all...stating it is isolating, helped me understand my mental moods. Thank you

I am right there with you, four years later. I am a fraction of who I was before. Meanwhile, everyone else has moved on. I look "fine," but I'm not. Sometimes I think it would have been easier not to have survived to begin with, which I almost didn't. At least my son still has a mother, but life is a constant struggle, especially still having to work full-time, as I can't afford not to and lose insurance. You are not alone in your struggle. Hang in there as best you can. Hopefully one day we will feel better.