u/thepensiveporcupine

I don’t have hope that anything will change for us any time soon until the majority of doctors are adequately informed on this condition. For some reason it seems the majority of ME specialists are of retirement age. I finally found one but he’s partially retired and I’m not sure how much longer he’ll be practicing, and then once he retires then I’m back to having nobody because it doesn’t seem like the younger generations have any interest in this illness. Research can continue to progress at a snail’s pace but again, we’re not really gonna see any changes in our lives if our condition is being poorly managed and institutions continue to abandon us.

I seriously have no idea how I’d ever live alone. I didn’t have much upper body strength when I was healthy but now it’s non existent. I tried to open a jar of salsa while I was home alone and I think I overexerted by doing so. I just gave up. Do you just avoid jars or is there a trick for this?

I know worry is an unproductive emotion but I can’t control it. I have many fears…fear of disappointment, fear of being prescribed a harmful treatment, fear that I will miss important information, etc. Not sure why I’m sharing this because I’m not sure what I expect from anyone, I just needed to get it off my chest.

Every single day I say “I can’t take it anymore” but what is there to do? I’m not actually gonna do anything about it, at least not any time soon, but what’s even more frustrating is that I can’t even scream or throw shit because that would give me PEM.

I have an appointment with a new specialist in a few days and my hope is that he prescribes something that helps me significantly. The problem is that there’s only a handful of things he can prescribe before I have to consider riskier and/or more expensive options. The concern is that any one of those treatments could harm me way more than it could help, and then I have even worse problems. More likely than not, I’ll be having to deal with this forever. No relief whatsoever, my days of being pain free are over. I just don’t wanna deal with it anymore.

I and many others on this sub believe that the name of this disease is minimizing. I’m sure most of us have seen the joke that Jon Stewart has made regarding this name. But I was thinking about it more, and I was actually afraid of getting this disease before I even knew how bad it actually was. I heard of chronic fatigue syndrome, but never heard the name Myalgic Encephalomyelitis. I didn’t know that it could get so bad that people couldn’t digest food, listen to music, look at a screen, or even process their own thoughts. I thought it was a less severe version of narcolepsy, you were just tired all the time in the same way that the flu makes it hard to get out of bed, focus, or stay awake. But you know what? Even when I believed that the illness wasn’t as severe as it was, I still didn’t want that shit! I knew Covid could cause chronic fatigue syndrome but I was like “Ugh I don’t want that shit, I need more energy, not less!” Why would ANYONE trivialize having low energy? Even if you think you could just “push through”, why would you want to have to do that? Wouldn’t you wanna feel naturally energetic?

Kinda the same thing as people who think this disease is psychosomatic. Even if they truly believe we’re mentally ill, maybe they should be nicer still? It’s implying that mental illness is also a choice.

For those of us who got sick too young to get married and are unable to live independently, we rely on our parents, but as they grow older and develop their own health issues, there’s gonna come a point in which it’s no longer possible. So what happens to us? I’ve read stories about aging parents having enough and sending their disabled adult children to group homes. Is that where we end up? I can’t imagine it’s an ME friendly environment. I just feel like we don’t hear about this very often. I’m from the U.S btw.

Most of us aren’t really gaining new relationships with this illness so all we have is the people already in our lives, but as time goes on, resentment builds. I can already tell a few family members hate me, mostly the ones who never liked me much to begin with, but I sense even my immediate family will get tired of me being sick eventually. I’m just dead weight to them. And really, I just don’t understand why people are so cruel. Even if this was a mental illness like everyone seems to believe, why would you be mean to someone with a mental illness?

I depend on people for my survival and if I lose everyone, I’m fucked. And that’s where I see my life going. I don’t think it will be a happy ending. My best years are behind me, it’s just descent to Hell from here on out. I’m already dying but with elongated suffering, and nobody has really grasped that.

I’m not talking about recovery as in a cure, I’m talking about the more realistic outcome which is functional recovery. I’m not sure I’ll ever be able to work a full time job and that’s rough in this economy. A single person cannot live comfortably in the U.S if they make under $75k a year. I don’t think I’ll ever make that much. And the longer I’m out of work, the less likely it will be that I’m ever able to retire. What’s the point in staying alive to spend the rest of my life working for a life that isn’t even worth living?

I don’t even know how healthy people do this tbh, how the fuck am I supposed to deal with it? The financial difficulties are by far the worst part of this disease, aside from the obvious physical suffering. The loneliness and grieving of my old life is more manageable, I’m used to being unhealthy. But not having your basic needs met or having to harm yourself to obtain it is just a cruel, sick joke. We’re more likely to be homeless despite not having the physical capabilities of coping with it.

I’m seeing so many people online saying that Pap smears are the worst thing they’ve ever went through and that they’d rather have cancer than go through with another Pap smear. I don’t understand such statements because I never found Pap smears to be particularly painful. Uncomfortable, yes, and there are parts where I wince but it’s over pretty soon. However, when I was sexually active I found sex to be highly unpleasurable and painful and I’d be sore for a week. I’m now celibate due to being housebound from unrelated chronic illness but it’s still so strange to me that sex is this normal, pleasurable activity for most women but a Pap smear is where they draw the line, while for me it’s the opposite. Please tell me I’m not the only one who experienced this?

Edit to clarify: I’m talking about heterosexual penetrative sex

I know the likely answer is probably “nothing” but there’s still plenty of treatments I’ve yet to try and I know some people luck out. The only medication I hear about for muscle symptoms is Mestinon. Otherwise, the only other treatments I hear about that have led to significant improvement are LDA and Guanfacine but that seems to be more for cognitive symptoms. LDN seems to lead to general symptom improvement in a subset of people but I’ve already tried that and it didn’t help, only gave me insomnia.

This is one of my most disabling symptoms and I just want relief. The only time I got relief from this symptom was after surgery, and I’m wondering if the reason for this was the steroid that was used. So maybe immune based treatments, although these aren’t very accessible and are also risky.

It’s 2026 and society is still acting like this disease doesn’t exist. This disease is essentially a death sentence if you don’t have support from family or the government. It was in the past, and it is now for many sufferers except for the most privileged who have access to shot-in-the-dark treatments and even then there’s no guarantee anything will work.

Rest isn’t a treatment. Our ancestors didn’t rest, they COULDN’T rest! Most people today can’t just rest either. We’re over 1/4 into the 21st century, there’s no good reason why people should still be dying from this disease.

I’m wondering if this is worth trying. Few questions:

1. Where do you get it? For context, I’m in the U.S and cannabis is legal in my state. I know a lot of otc CBD is a scam but do I need to go to a dispensary? I’m wondering what specific products are effective (I’m very sensitive to THC so I’d need pure CBD)

2. Does it actually help? And if so, what exactly does it help with? Just sleep and relaxation, or can it be used as a crash shield like benzos, DXM, etc?

It’s likely nobody will relate to this but I have nowhere else to share it. I’m grieving the fact that I was never hot, but I could’ve been. Idk if I’d consider myself a tomboy because I was never sporty but I definitely wasn’t feminine. I’m autistic and always had trouble making friends, particularly other women, so I never learned to do makeup or dress well. I didn’t start to find my style until I was 21, right before I got sick, but still didn’t take enough risks with my style (I should’ve went all in, dyed my hair without a second thought and got a few piercings) but I kept playing it safe. It also didn’t help that I was overweight and not in a curvaceous way…I wasn’t going to the gym or anything so I had no muscle and all the fat was concentrated to my midsection. So I just didn’t look good in any clothes.

This all wouldn’t be a big deal if I was healthy. I know exactly what I’d need to do now to have a glow up but I can’t. I can’t work out to get my dream body, and I have no money to buy the clothes I want (and I can’t go out anyways so what’s the point), I can’t learn to do makeup because I can’t be upright for long enough or keep my hands steady for long enough, and I can’t get my hair done because last time I felt sick for a week, and that was when I had a better baseline.

I’m grieving the fact that the attractive version of me will never exist. I don’t have a single picture of myself that I’m proud of. I was never able to attract the guys I was attracted to and never had a sex life that was satisfactory. I’m just stuck looking like this and never being able to love the way I wanna love. It feels like my one life is wasted, like I’ll never get certain opportunities back and this illness is stealing everything from me. This illness completely destroyed my life.

How the fuck am I supposed to live knowing that I’m making my family’s life more difficult? Government assistance is being gutted in my country and nobody even gives a shit. If I don’t get better, I need to rely on my family for everything which will make their life miserable. If I die to eliminate the burden I put on their lives, that will make their lives difficult in a completely different way. My family will never be happy and it’s all because I got sick. *I* will never be happy either. I’m scared. I’m gonna get worse if I lose healthcare and access to the meds that stabilize me. If anything happens to my family, I’ll either become homeless or a ward of the state. It’s ME awareness month and nobody is even talking about us. They probably never will. The future is bleak. I’m trapped in my own stupid body with no way to express my frustration, what a sick fucking joke my life is.

Everything about it sounds like hell. Dealing with doctors, constantly making phone calls, being exposed to harmful testing like CPET and long neuropsych evals, court hearings, etc. I’m also likely going to need to apply for SSI instead of SSDI because idk if I have enough work credits for SSDI, and that’s a whole other problem because now I have government officials ransacking my house counting every asset. The whole process of getting a lawyer, which I will DEFINITELY need, also sounds like fucking hell. And then when it’s all over, you’re still subject to reassessments, and you got people from the SSA spying on you. I wouldn’t even be comfortable talking to anyone anymore because they get really pissed about “welfare queens” and if I cross someone, they’ll probably send a false fraud report to the government. I’ll never feel safe, and it’s not enough money to be worth it.

This sub always talks about the importance of pacing, but how do you even pace through all this? It honestly feels like I’d be better off getting a job. I’m seeing a new doctor soon and if he’s as good as I’m hoping he’ll be, he’ll probably tell my parents that my last doctors were full of shit for telling me I’m too young for disability and that I need it. But in that case, my parents will realize that they can’t afford to support me forever and will push for this additional income. The problem is, well, our president is making it harder to get SSI and I probably can’t get SSDI or even the DAC when they retire. So I’ll put all that work in and probably get nothing, or will run myself into the ground trying for the next 5+ years.

Sorry for my rambling. I just have no idea what to do.

I always knew there was a good chance I’d die alone for reasons I probably can’t get into on this sub, but I figured I’d be okay because I’d be able to take care of myself financially, have a few cats, some hobbies, and be okay on my own. I wanted to take care of my body to prepare for being alone in old age, hopefully dying before my body gave out and forced me to live in a nursing home. Well, too bad all this happened in my early 20s. I’ll never be able to work, and even if I’ll be able to work part time, I’ll need assistance from my parents as well as financial support because nobody these days can survive on a part time job. I’m just gonna live the rest of my life single in my parents’ house and fucking hope I don’t outlive them. I feel like such a fucking loser. It will be a miracle if I’m ever able to rent an apartment, never mind buy a house. I hate my stupid fucking life. Fuck ME/CFS.

My life is gonna be shit no matter what unless one of these highly unlikely scenarios occur: I fully recover on my own, a curative treatment comes out within the next 5 years, I am gifted millions of dollars (if I must stay sick, I’d rather be financially secure), or I somehow find the love of my life and he happens to be extremely financially secure and he has the ability to care for me and doesn’t mind doing so. Otherwise, my future is incredibly bleak and scary.

Trying to see if “radical rest” is actually worth it or if the advice to “exert as much as possible below your PEM threshold” is better, as there’s a lot of division among patients on this.

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I really admire those of you who advocate, whether it’s just to spread awareness or to advocate for more research funding or any disability related issue. I wish I could do the same to feel like I’m actually contributing to society and not just sitting down and giving up, but I really just can’t bring myself to deal with the healthy world. Most of them hate us. And honestly, the more I think about it, the more I question if we’re really gonna get anywhere meaningful in terms of getting a treatment, or even just living in a society in which the most disabled of us are adequately cared for. I see all sorts of causes that have millions of supporters, but nothing changes. Human beings are awful and the government and the elites are soulless. And we expect them to save us?

This is just life now. Forever living in poverty and dying alone with no partner, no kids, and hardly any friends. Is it even worth fighting for?

This disease has been historically neglected and it seems there is no mention of it prior to the 1950s, although it has likely existed as long as life itself. I was sitting out in the sun for like 10 minutes and realized how draining it is, and then I wondered how people with this disease could even survive for more than a few days to a few weeks without shelter. We can’t handle the elements, this disease is completely incompatible with life. I’m reliant on heating and air conditioning, my body is so sensitive to any weather change that I need to stay locked away in my house. I realize this is a privilege though and there are still many parts of the world that aren’t as developed in terms of infrastructure.

Were people back then just more creative with their problem solving, or did they just die? Either way, it’s weird we don’t really hear these kinds of stories, not in literature or in history books.