*Disclaimer* If you are reading this post there is a 95% chance the negative parts are not directed at you. The people that I call out will probably never read this. And if they let do, I hope we can chat about it.
People come and go, but for me, since becoming bedridden, people have only come in and out of my life, not the other way around. They come and go, but I stay put. It’s a one-way street, a lonely road leading to a turnaround. This is nothing new. But for some reason it has never affected me more than it does right now. I imagine it’s because I don’t have much to distract myself from loneliness. People come to visit (or text me saying they want to visit), maybe they even make a few social media posts about doing so, but eventually they move on with their life while I remain stagnant. Don’t get me wrong, I’m grateful for the people in my life no matter how short-lived our relationship may be, but it seems to me those who stay in my life the shortest amount of time are making the gesture more to feel better about themselves than lift my spirits, or anything else for that matter.
For instance, since word about my poor health has spread, a number of people from my past have sent me messages, but the vast majority of people who do, never come to visit even when they say they will. I know life gets busy, but I still prefer honesty over a false promise.
Often people send me messages saying something like “Hey buddy, heard you’re feeling shitty. I’m gonna come visit you soon. We can hang out and have some laughs.” Then I don’t hear from them for a month. But my favorite message is one like this: “Hey there, so I heard you haven’t been doing well. I want to come visit, but I know you are probably busy or don’t want visitors. But I hope you get better soon, then we can hang out.” To this I usually reply, “Hey! Yeah it’s been rough, but I’d actually love to see you. Might have to be a short visit because I need to rest, but when can you come?” Then I don’t hear from them.
I would much rather get a message like this: “Hey man, so I heard you’re getting better, I’m glad! I can’t come visit because my life is crazy and you live like 1,500 miles away in the middle of . . . Wait, where do you live again? Anyway, get better soon, man, and if stuff mellows out for me I’ll try to come see you,” or an even better message would be “Hey cutie, I’m coming to visit, see you Saturday. I know you can’t have sex, but maybe we can just snuggle and kiss a little. Then I’ll leave you alone to rest, but I’ll comeback in a couple weeks and we can do it all over again. Sound good?” Yeah, I definitely like that last message.
A few weeks ago marked the one year anniversary of moving into my current home. It dawned on me that in the year that has since passed I have not gotten out of bed. Before I had been, with the help of friends or paramedics, moved to different beds or once to the emergency room, but now, perhaps because my health has stabilized, I’m just stuck here in a dark room. I still can’t believe it. I haven’t left the confines of four walls in a year. I haven’t even left the confines of my mattress in a year. Before I got sick six years ago, or even three years ago when I was still walking around, I couldn’t have imagined being confined to city limits, let alone a house or room. Although I have been living this reality, I still can’t imagine being so restricted in my movements. It is this immobility that has left me in a precarious position, constantly having to wait for people to visit me instead of having the freedom to visit others.
I have been surprised by who has supported me during this tough time and who has vanished or remained silent. Some of my best friends from past parts of my life have essentially gone missing — some have yet to communicate a word to me or my family in the nearly two years I’ve been severely sick. For months my mind has wondered about these old friends. These are people with whom I have shared some of the most exciting and personal experiences of my life. We are bonded in such a way one would think there would be no hesitation on their part to reach out if I got sick. But now that I am sick, not only has there been hesitation, there has been a failure to act by my old friends.
I have concluded the reason many of my old friends have disappeared on me is one of two things. They could be too afraid to get involved in such a complicated and messy situation. But on the other hand, it could just be that they don’t know how. Because of me they could be faced with emotions the likes of which they have never fully experienced before. Perhaps they have always blocked them out, or chose not to acknowledge them. Perhaps these emotions are unprecedented in their life. I doubt it. Instead, the emotional reaction that I create for them is, more likely, one in a series of reoccurring events of which they have never learned how to adequately cope. Either way, it’s hard for me to fault them, but that doesn’t change that I have at times been hurt by their absence in my life. It would be easy for me to take it personally, as if they don’t care about me. But I know, like most human relationships, it isn’t that simple.
Now that my health is improving, it’s not like I’ve been hiding. In fact, recently I posted a political piece on my Facebook page and one of my best friends from adolescence made a number of comments on it, but directed at someone else. The two were engaging in a debate, which I don’t have a problem with, except that it meant watching my ex-best friend essentially hijack my post. It showed that he was obviously capable of typing words and sending them to another human being, but just like the last two years, he failed to send them to me. It was like he brought someone over to my house, but didn’t speak a word to me, and instead talked to the other person about politics the entire time. Again, it’s easy for me to take it personally, thinking he cares more about politics than his best friend from adolescence, who is now sick and was recently on the precipus of death. But I don’t take it personally. Okay, maybe I take it a little personally. Ah, yeah, you’re right — I’m bitter as shit about it!
During the period of time that I’ve been sick, I have had an incredible amount of support. It just hasn’t been from the people I would have first imagined. I ultimately feel abandoned by many of my best and oldest friends, and while I know I’m not entitled to them going out of their way to see me, I hope they know that they certainly aren’t entitled to my friendship.
Still, I have found solace. There is something very special about making new friends and acknowledging the unlikely saviors that have supported me through tough times. These people may not always be there, but someone always will — I am lucky enough to have a revolving door of support. As long as that door keeps letting people in, I can handle its constant spinning. And as much as I want to stay bitter at the old friends who have gone away, I know that if one were to make more of an effort in the future I certainly wouldn’t hold a grudge — I’d let them in the door.
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85 thoughts on “Where Have All The People Gone?”
You need a friend- I’m here for you!
Very sweet. Thanks!
I appreciate the honesty of your post. We humans are so complex, aren’t we? It’s both painful and bewildering when the people you think you can count on the most don’t come through for you.Glad you have other people though and so glad to hear that you are improving. Best wishes!
Hey thanks!! Yeah it’s a weird phenomena, but it could be much worse. Thanks for commenting!!
This is so true. And the battle of emotions in my head is so similar to yours. The,”I get your life is busy, and you mean well,” forgiveness-y thoughts to the, “I guess that friendship wasn’t the important foundational rock we said it was. I guess that was all talk.” I’ve even been blamed for my “extreme selfishness.” All I can say about relationships like that, is like you, for every wacko who hides from me, there are 1 or 2 new friends who provide me love and understanding like I’ve never dreamed possible.
Some people are awesome and some people suck. And I remind myself that I have been the “sucky person” in someone else’s story before, and most likely will again. But I’m letting myself feel equally crushed and grateful.
I really like that you have this blog and share your story. It’s because of our ME community that I can feel as connected as I do, some days… thanks! And keep getting better!!!
Hi Jes. That is so true. Our own little worlds are subject to each other’s and nobody is incapable of being the bad guy. At least in how one person sees them. Thanks for adding your insight.
I didn’t realize you had not been out of bed for so long Jamison. Sure wish you could figure out how to get some fresh air even if just right outside the door. Is a wheelchair not doable for you? I think one reason there’s still so much confusion/ disbelief by the general public is the vast difference in functionality – going from folk who work full time along with ones as sick as you. I’d scratch my head too and wonder what the deal is with this CFS stuff. I thought you expressed well your disappointment in old friends – trying to understand but admitting it hurts. Maybe some of them will see this and show up. Hang in there Jamison.
Hi Micky, I’m shooting for a wheelchair but need to tolerate more light and get the POTS a bit more under control. I love a challenge though. Thanks for your kindness.
Portable sunlounger/sunbed in garden where you can lie with feet level might be more useful than wheelchair at first when light tolerance is better or maybe at dusk. Just a thought.
Some people disappear because too embarrassed as dont know what to say round chronic illness.
I can’t wait to get outside once of these days. Hopefully move to the ocean too.
I bet – it is such a shame they can’t bottle up sea air – nothing like the smell of the sea. Hope the day will come very soon for you.
I know, right? I love the salty air!
Realised I should probably have said ocean air LOL. UK surrounded by sea so always say sea air! 🙂
That sounds perfect for me. Haha.
I agree with the responses above. I have been fortunate to have family close, but as usual say, my sanctuary is the bedroom. I get out usually once a week thanks to my seventeen year old grandson. Now he’s working all his extra time, so makes it difficult. My family that’s about five min away is so busy, I don’t think they realize how lonely it gets. If you’re getting stronger maybe a chair would help you. Preferably motorized. I have the push yourself type so can’t go far and no hills! Good luck. I enjoy reading your posts and think it’s good to get your feelings out here.😍👍🏻
Thanks for your words. I definitely think some wheels are in my future but there’s also the light sensitivity holding me back during the day. Time will tell.
Well tough times always test all friendships and relationships don’t they
Yeah. Not much of a surprise I guess. Thanks for reading.
I’m sitting here with tears in my eyes while reading this. It’s so easy for people to keep living their lives while someone close to them is suffering. I think you’re right about one thing, your illness probably scares your old friends. They probably don’t know how to handle the new you.
I only know that new you, the you that is getting stronger every day, the new you. I’m new to you. I’m someone that was drawn to you and your story the moment I started reading your blog. You don’t know anything about me: I’ll give you a quick crash course – I’m a huge smart ass with a huge heart. I put others before me most of the time, I always have, and some days it sucks the life out of me. I have trouble seeing, I had lasik eye surgery done in July, and I think they botched it up.. but I still read your blog…. even when I have to hold my phone 12 inches from my face to read it lol …I think from what I read you’re an amazing young man with a bright future – because you are getting stronger ! I will keep reading your blog and keep reaching out to you as long as you will allow me to. ( you never know you may tire of my smart ass comments and wry sense of humor one day lol ) Keep your head up and that smile on your face! Forgive your old friends for their indiscretions, and always remember what you said, you are not obligated to be their friend, but you are obligated to yourself to not carry their burdens. Take good care Jamison.
Well said Meli.
Thanks Meli! You are kind. That lasik surgery sounds awful. I keep thinking I need glasses because for the first time in my life my vision is blurry. But it also could be my eyes aren’t adjusted to daylight. Thanks for reading
The actual surgery was okay … no pain… the not seeing part kinda sucks … I see halos around light – at night it’s really bad , but I manage lol … just my luck ! Wait til I tell you about the time I had extensions put in my hair for my wedding … oh my! Here’s a hint : billy ray Cyrus’s love child…. 🙂
Sleep well !
Jamison – Don’t know if blurry vision is CFS related or not but seems to be a correlation based on how many report it. I’ve got it too at times, usually mornings and evenings.
I could just be getting older and need glasses haha.
Perfectly stated. I live with an autoimmune disease, and in the five years since my diagnosis, I have found out who my “real friends” (for lack of a better way to put it) are. My disease is 100 percent non-contagious, but there are some folks who can’t handle that it has changed my life and act as though they’re going to catch it if they spend time with me. I still like to be invited to do things, even if the response more often than not is either ‘maybe’ or ‘I’m sorry, but I have to decline.’ It matters that I’m thought of.
Jamison, I’m new to your blog as well … but I admire the strength and courage you show in telling your story.
Thanks Sharon. Getting invited is always bitter sweet. It’s like, here, you can look at the candy but you can’t have any.
I can see how that would be the case.
I am glad you’re getting better. May you receive good healing IJN.
Another brilliant post from you! I think you have expressed your feelings so well. Sadly I am sure this scenario is true for many of us. I too have been disappointed by the lack of contact from ‘friends’ and go through a huge range of emotions when they don’t follow through on their promises of a phone call or a visit. I have found it tough. Being naturally sociable it’s so tough. I hate the ‘when you’re well we’ll arrange to meet up and have a coffee’ comments the most. Lol, I’ve been ill for 22 years, housebound for long stretches, currently several months, again ….. that means a long wait for that coffee! I may not be able to pop round for a drink Jamison, but, chink, chink, cheers xx
Hi there. I know, right? What if the coffee date never happens? I’m grateful for the wonderful few who see, to get the gravity of the situation and make more of an effort. Cheers indeed!
I operated year round on a teacher’s schedule. In August I started to gear up to get ready for a new school year. A large high school has a lot of faculty members, but the work is consuming, so not that many people made close friends. I left for medical leave the last of October 1988. No one called. My husband was also teaching and in the same “at risk” classroom. I went back in January, but lasted for abut 3 weeks, more sick than I had ever been. I left the high school building not expecting that I would have 4 walls surround me for decades. And no-one called. I was not a popular teacher as in ‘a faculty favorite’ because I was “overly flexible” and ah…not invited to English dept. meetings toward the end. They did not look at me as a real English teacher because my kids were “dirt balls.” (Okay…so I make my own pathways and I was really good at my job. with my favorite kind of kid.) The fall of 1989 passed. I was still trying to get disability. I asked a long time”friend” of mine to write a letter on my behalf. I never heard from her again. That sucked. It was as if I disappeared and good riddance. I operated year round on a teachers schedule. It took me years to not feel geared up in August. Everyone else in the house went back to school and I was left behind.
Now I know that this disconnect happens to everyone. Over the years I have taken hundreds of calls. The disconnect is heartbreaking. Life goes on. When I felt it the most, forced retirement from a career, I found out I was replaceable. (Seriously, the newbie was in for a shock, a big learning curve it is when working with walking wounded high school kids..)
I was not the center of anyone’s world. I had to reinvent a life and Jamison, it seems that you are doing just that. Once everything is stripped away, and you feel like you are in a box, ya have to haul stuff in there to get cozy.
Hey Pat. Wow. I didn’t know you were a teacher. My mom is a teacher. How y’all don’t get paid more baffles me. But it’s better than the disability checks I guess. Well I should be grateful, not everyone gets those.
Pat your story reminds me so much of Roger King’s when he tried to teach college in San Francisco and finally realized he couldn’t do it. It was heartbreaking what he went through. If anyone wants to read a really good book pick up his “Love and Fatigue in America.” I couldn’t put it down.
Such a great book. Roger first got sick at the gym just like me. I resonated so much with that scene in his book.
Hi Jamison, some of your old mates were probably shit mates anyway 😊. We’re all selfish deep down its how we survive. I’m a therapist with ME so I’m quite good at rationalising everything! I’ve felt like you at times that certain people could do more but then I remember the times when I wasn’t always there for people myself. Life’s a load of mad bollocks anyway 😉.
Imagine a World with no Internet and having ME, then I would go nuts!
Hi there. Good point. No internet to communicate would be maddening. My senses would be less tormented by light and such but that’s the price to pay I guess.
somehow I managed to screw up my (social) life so well before I got sick that I could hardly feel abandoned afterwards, yay for family and that one loyal friend! and perhaps your friendships were mostly based on sports and whatever else you male specimens bond over so this “new you” is just too far from their (neanderthal) universe to comprehend? would it, most likely, be different if it was MS? don’t underestimate the brainwashing effect the Wessely’s and blindly following media have on folks *grmbl*
My friends were both male and female but my life now is definitely unimaginable for many of them so it’s hard to relate. Thanks for reading!
well sorry on behalf of my species as well ;o) and would you read mine? part 2 is in the making
(the English one of course & I’m not selling anything)
It’s true what you are saying Jamison. I even thought people were afraid to catch what I have. Maybe that’s true. I have no idea. I feel in life you only have a handful of true close friends who will stick with you through thick and thin. The problem with this illness is you never know how long it’s going to last or ever realised just how debilitating it could be. Friends will never quite understand unless they are in your position. Thank you for your posts. They really help. And I live on the other side of the world! : )
Very true Nicola! I never thought it would be like this. And while I don’t think it’s contagious the truth is anyone can get it.
Really it needs a lot more research on this illness because people like us ‘drop off the circuit’ so to speak and can be so easily forgotten by the medical profession and researchers.
Jamison, I started crying when I read this, because I’ve felt this way for a long time now, and it hurts because previously I used to see people so often. Only a very very few of my friends have regularly come to actually see me – and whatever their reasoning, it hurts a lot. the worst thing is trying to explain to people how it feels, as if you are asking for too much, and others try to make excuses saying “they must be busy or having hard times in their lives”. but If my friend was as sick as I am, in all honestly, nothing would have stopped me being regularly at their side. Because if our situations were reversed, I wouldn’t act that way. I used to cry about this a lot, especially for my closest friends. But like you, I also try to find solace in what I have, and i am lucky to have a couple of people in my life who are there for me a lot. thank you for your blog post, it’s like I’m reading the words I feel but never wrote about:)
Thank you for writing this Jamison. I’ve been thinking lately how hurtful it is that the few friends I sort of have left after nine years of this shit I’m the one who always have to contact them and prompt visits. I get that they are busy, they have young kids and other obligations, but a text message once a month or so? That would do me a world of good and probably cost them nothing (I am a bit bitter, can you tell?).
I’m very thankful for all my new friends tho, the twitter friends I’ve made the last years who are so genuinely supportive I have to pinch myself to believe how lucky I am that I found them and they found me.
That is so frustrating. A text message is the least someone can do. Glad you have some good friends though.
I’m so sorry you’re going through this, it’s so hard, in the midst of the illness & very hard to come to terms with..
I really don’t’ think our culture gives us the awareness or the tools to respond to what you’re experiencing at the moment. Your writing can only help to improve that by allowing others to understand what you’re feeling & be part of a much needed collective change in response to all those who are experiencing what you’re going through .
Thanks Katy! You are right. And at the very least the writing is therapeutic. Thanks for commenting!
I’ve found maintaining friendships one of the hardest parts of this wretched condition. One friend admitted on a rare visit, that they were scared of what they might be confronted with, others I think found it too distressing to see a once fully active person so restricted. One laughed on seeing my wheelchair & was astonished it was mine. I have one or two rock solid friends & my husband, so I appreciate that I am very fortunate. It takes energy maintaining friendships, something I have little of. And I’ve found many people find selfless friendship difficult..when there isn’t alot you can offer. And many can’t understand the concept of a specifically ‘timed’ visit, or that I have to stop talking…really, I have to stop! Often people find it hard friendship not being on their terms when someone is ill..then is that friendship anyway. It’s as you’ve said, difficult. Yes, I won’t go on….
I am homebound, have periods of being on bed rest (one currently going on) & have had a few months of being pretty much bedbound… I can only imagine a snapshot of how it is for you. You’re incredibly brave. I hope you don’t mind, but I will pray that more good solid friends start reaching out to you & be more permanent rocks in your life. Thanks so much for being so honest in sharing how you feel.
When you’ll be better, here you have a bed near Venice, North Italy . in the meanwhile , we’ll keep in touch . Please, can i translate to italian this post and publish it in my blog (with your references) ? I feel that even if i’m not bedridden (but i have to sleep in a bed every 3 hours during the day) my ability to meet my friends is going down to zero. a great hug Jamison !
Of course. Feel free to use it. And I’m coming to visit some day. I need to see Europe!
You’ve also got a place to stay in Colorado.
Thanks. On my way! May take me a few years to get there though.
“I have concluded the reason many of my old friends have disappeared on me is one of two things. They could be too afraid to get involved in such a complicated and messy situation. But on the other hand, it could just be that they don’t know how. Because of me they could be faced with emotions the likes of which they have never fully experienced before.”
My experience when I couldn’t leave the house (much of 2013) lead me to the same conclusions. It was weird how people I considered very close stayed away, but others who were more casual friends made the effort to come by. I think healthy people often have a *very* strong reaction to seeing a formerly vibrant, successful, healthy friend suddenly become bedbound. I could almost see the “oh my god I hope this never happens to me” in the eyes of some of my friends.
Such a fascinating phenomena. I’m sure there’s a good quote that sums it up. Something about the people you least expect make the biggest impact. Thanks for sharing!
How are you doing today?
I’m okay. Just got a new IV. Thanks for asking. How are you?
Okay as I can concussions suck probably not as bad as you though.
Wow, this is powerful stuff! Thanks for sharing it and being so honest.
Thanks for reading!
Great post. I think it’s at times like this you learn what things like friendship really mean to you. I used to be blindly loyal to friends without question and always remain ‘strong’ for others who needed me- inevitably since my own ‘weakening’ by ME I don’t hear from any of those old friends. I think it’s hard for people to take illness and weakness, particularly if they’re not in the habit of seeking out and understanding their own vulnerabilities. But it still hurts and it’s hard to let go of friendships that you shared so much with, grew up together and so on, it can feel like such a waste! But your experiences change you and illness can strengthen your spirit in ways that others aren’t ready for in themselves, or haven’t been forced to do, like you have.
It sounds like you have some good people in your life but not being able to get out takes its toll! Keep strong and lots of love. Thank you for your writing. X
Thanks Jess. That was beautiful and kind. I appreciate your words so much. I think if healthy people hung out with sick people more they’d get used to it but there’s a barrier. Two very different worlds. Thanks for your comment!
Thanks for expressing how you feel so honestly and with a “smiggin”- is that the right word?-of humour and a touch of sarcasm! This expression of how you feel will starnd you in good stead.
I visited a friend in the local hospice last night (my third visit) to thank her for the lovely birthday card she had chosen before being admitted on 2nd of December with a prognosis of 2-3 days left. I went with the families blessing pm knowing her likely to be comatose … no matter, I went and went prepared. Miraculously she was awake, lucid and almost her old self!
So I asked her if she would!d like to listen to the music I had downloaded and prepared. We shared Clapton Running on Faith….. apt in the circumstances. After it finishes, she thanked me for coming as the sheer excitement of dancing whilst being bedridden had exhausted her! So I speedily left her with the most serene smile and glow on her face. That is the best Christmas gift I could wish for.
Moral here is we should teach our children how to deal with loss, prospective bereavement and how to deal with life’s challenges . Life skill and education is far too narrow. Life is more than exam success and getting on. There should be tuition in empathy! If we don’t teach kids this we will have groan adults treating their friends and family in the way you describe.
I think you have made an admirable start in your new job as an educator!
People need to be told that dealing with ME friends is like dealing with a palliative care situation-except ME is worse as it can last forever!
Keep blogging, keep strong and start to educate those who were close to you and are no longer – cos it’s probably not their fault they are so crap at REAL friendship!!👍
I agree Barb! Thanks for sharing that story. That’s wonderful you visit hospice, me and my dad used to do that when I was a kid. Thanks for reading!
Completamente de acuerdo contigo, Jamison.
Yo no estoy tan limitada como tú, pero esa soledad la sufro tambien…es lo que hay y supongo que en algún momento yo me comporté igual.
Un abrazo, amigo.
I lost my brother in an accident when I was almost 21; our family experienced something very similar. Tremendous support but not always from who we expected. You will find that you will be more empathetic and better able to be there for others. As much as I still miss my brother almost 30 years later, I have in so many situations been able to be there for others.
I’m sorry Sherri! Thanks for sharing!
Your story has motivated me, but in ways that I am not too sure of yet. This encapsulates the bad part of the social media age, where people do not take the time or energy to commit to others if it does not get them recognition. And that is too shitty for someone in your predicament, especially. It is making me see if I make any false promises to friends no matter the circumstance. I truly hope that whatever happens to you, you will find people who take the time to commit to you and your needs as a social human. I am not sure if this will help, but here is a quote from a book I am reading called Man’s Search for Meaning:
“Life,” does not mean something vague, but something very real and concrete, just as life’s tasks are also very real and concrete. They form man’s destiny, which is different and unique for each individual. No man and no destiny can be compared with any other man or any other destiny. No situation repeats itself, and each situation calls for a different response. Sometimes the situation in which a man finds himself may require him to shape his own fate by action. At other times it is more advantageous for hum to make use of an opportunity for contemplation and to realize assets in this way. Sometimes man may be required simply to accept fate, to bear his cross. Every situation is distinguished by its uniqueness, and there is always only one right answer to the problem posed by the situation at hand.
Hey. Thanks for reading. I agree. Social media is both a burden and a blessing. It’s hard to say if being bedridden would be worse or better without it. Might be more relaxing but also more lonely.
No doubt. Hope you get better, friend
Beautifully written and even though I am not in your shoes, I do kind of understand how you feel. I have recently, within the past 6 months, decided to separate myself from social media in hopes of finding my truer self, and in the process, it seems I have lost all of my friends because my phone and facebook isn’t all I care about anymore. I miss the days when people used to actually speak with one another and actually care outside of a face FB comment. Thinking of you 🙂
Me too! It’s a double edged sword. I definitely need more in-person interaction. Most people probably do. Thanks for reading!
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I’ve been reading you for a while. 3/4 of your posts, the same words have come from out of my own mouth, same feelings, same bafflements. It’s not news that you’re a good writer—but that you write so honestly about some of the darkest corners of this, it helps. I hate that you have seen, felt and experience these things, just as much as I do for myself (and all the others). So much of it, I have no natural reference point for except knowing others feel much of it too. Every day I’m hit with how unnatural it seems to live this way. It’s astonishing how what we all share is so similar— yet how seemingly different the entire experience (for ourselves and people in our lives) is from other illnesses, in every corner of our day to day lives.
That’s so true. It’s such a weird paradox yet I love finding solace in fellow sufferers like yourself. So thank you for telling me how you relate, I makes me feel better about all this ridiculous stuff. Keep in touch!
Nicely put. I could say the same. Except there is only one person who comes to see me, once a month, after three years (an old coworker no less, no friends, no family). It’s hard not to be extremely bitter at those texts igniting my desire for a friendly visit. At first I thought they’d come, now I know they won’t. Actually now there’s nobody left to make those empty promises. Trying to find it in my heart to forgive them and enjoy the social media interactions, after all, that’s reality, take it or leave it. Good to hear you are feeling better. That’s the best news we can hope for, what we all have our fingers and toes crossed wishing for.
I feel you. I have a feeling it is going to be a persistent problem for me and it has been for awhile. I try not to be jaded but damn it sucks. Thanks for your kind wishes!
I identify with this as someone who got ME CFS aged 16. At first my friends visited, but, once you can’t do the same things with them, they stop coming. (Especially at that age, I guess friendships are rather fickle – well at least, my friends were). I was pretty disappointed – in my friends, myself (yep, self blaming is common I think), in the whole damn situation.
I only really acknowledged/accepted that I had the illness myself about 10 years ago (I’ve had it for 23 years) Though Perhaps this is because it’s “only” moderate severity, and you can function more like a “normal” person than someone with severe ME CFS, Also the misconception / ignorance / denial of the disease by a major percentage of the medical community and therefore, general public, adds to yourself even “doubting” that you’re actually sick, (despite physical evidence otherwise).
I actually forget what it feels like to be well. As probably most pple with it do. For me, there was a Pre-MECFS self, and a Post-MECFS self. Physically mentally and emotionally. The positives of the illness are that I became much more patient and empathetic.
I’m not sure what I’m trying to say – it’s 3am – just that your post resonated with me, so thanks.
Hi Bec. That’s so on point. I too have lost touch with what it feels like to be well. It often feels like I’m just waiting to get well and when I return to health I’ll pick up my old life as a 22 yr old. Thanks for sharing your thoughts, it means a lot!