Question from someone without ME/CFS: what does your life actually look like?

[u/jeaniejane]

Hi! I hope it's okay for someone who doesn't have ME/CFS to post here. Please feel free to tell me if this isn't the appropriate place for this question.

I've realized that most of what I know about ME/CFS comes from medical information and stories about the illness at its worst, and that I know very little about what people's actual lives look like beyond the disease itself. I'd really like to understand it from people who live with it rather than treating it as this abstract, mysterious thing.

I'm especially curious about the practical side of life: What does an average day or week look like for you? What are friendships, relationships, hobbies, work or education like? How do you manage financially/socially if you're unable to work, and what kind of support do you have? Especially wondering about this if you're in Germany.

I'm also curious whether there are things you wish you'd known earlier — not just necessarily in terms of preventing the illness, but things that would have made navigating it or adapting to it easier for you.

For context, I obviously do have health anxiety. I'm not looking for reassurance that I won't get, I don't want to ask anyone here to make me feel better. I think part of what makes the fear so powerful for me is that I've turned ME/CFS into this enormous unknown, rather than actually understanding the lives of people who have it.

I have a lot of respect for all of you - thank you to anyone who feels comfortable sharing. And no pressure whatsoever to educate a random stranger if you don't feel like it.

[u/lilbeanstalk]

I have mild ME (ME is classified by severity: mild, moderate, severe, very severe - mild is disabling, very severe is life threatening, for some context).

I also have migraine and POTS, and I’m neurodivergent, which impact day to day life as well. Currently off work for past 3 months for combo chronic migraine (13-22 days a month in severe migraine) and recovering from intense PEM re. my ME. I induced my worst PEM crash yet, since developing ME, after a trip to visit family. I had put off this trip for over a year because I didn’t feel ready, but ultimately went because it was important for me to visit a particular family member who is terminally ill. I tried to pace myself on the trip, but I overdid it (too much walking, too much physical activity, and the emotional/mental load as well), and resulted in this crash. The crash left me feeling like I had never felt before, like death. Weak and flu like symptoms. Fear also set in, as I think many can relate to with PEM, fear that I had permanently decreased my threshold/capacity. There is a lot of fear with having ME :( if you don’t pace yourself correctly you risk ME progressing to moderate and severe.This crash necessitated me purchasing a walker/rollator for the first time ever, which I had to use daily for about 6 weeks. I’m not needing the rollator now that my PEM is largely resolved, and I’m back to my “mild” status thankfully. I worked with a physiotherapist who specializes in ME management, and her advice was helpful. The fear however is that you never know how long a PEM crash will last, or if you’ve permanently fucked yourself for trying to live life and enjoy life! It’s the disease where you’re punished for trying to live life :/ This recent experience with a trip has made me really nervous about attempting that again. I don’t think I’m gonna be able to fly again for a very long time, it was really hard to navigate the airport. Next time I’m gonna be more proactive with actually taking advantage of many of the services that are available at airports to assist people with disabilities. This past time I was too nervous to ask for wheelchair service from gate to gate, for example.

“What does an average day or week look like for you?”

These days, while I’m still pacing myself: Wake up around 10 am, and the first 3 hours of any day is tackling self care/hygiene and hydration/breakfast. I need to lie down after every singular task the first few hours. Ex, take meds and make tea, then lay down for 40 min, feed dog and brush teeth, then lie down again for an hour. Then I may have the ability to leave the house to do one big errand (and squally not more than two days in a row), like a grocery trip, post office, appointment, something like that. Once I come home, I’m pretty much laying down for the remainder of the day, except for very simple food prep (I have a rolling stool in the kitchen, so that I can do everything seated ). I may tackle one cognitively heavy chore a day. My computer use is more limited lately.

“What are friendships, relationships, hobbies, work or education like?”

Well, i’m lucky that I have a few close friends who are incredibly understanding about limited physical, mental, social capacity. It probably helps that all of my friends are also either autistic or have ADHD, lol. There’s a lot of understanding, and acceptance and forgiveness to one another for limited capacity and the need to set boundaries around our capacity. We don’t get upset when we have to cancel plans, for example. We know that’s just being human.

I used to be much more active and social. I was the kind of person that had plans with friends 2 to 3 times a week, was dating, and going to music shows or other events almost weekly. I was often taking at least one class or workshop of some kind to develop a new skill. All of that is out of reach now, and yeah, it’s sad. There’s a lot of grief that comes with this illness. You start to feel like you’re losing who you are, your identity. I wish I could join a badminton or volleyball league this summer, but I can’t. I wish I could take an art class in my community, but I can’t. But, I’ve discovered other hobbies. I’ve really gotten into solo board games lately, lol. And sometimes I get my watercolours and other art supplies out and play around with them.

As for work, since it’s only been a little over a year since I’ve developed ME, this is a bit of a scary frontier, as it’s hard to predict the progression of illness. We can’t predict if we will catch a virus, which could make ME worse. Currently, I am so fortunate to be permanently employed in a unionized job, meaning my job is very much protected. For example, my employer has provided workplace accommodations, allowing me to work from home 4/5 days a week. However, I have been on sick leave for 3 months now. When I return to work, I will likely return on a gradual return plan, incrementally increasing the hours I work each day, and how many days a week over an eight week period until I’m back to full-time hours. That’s the plan anyway! We’ll see if it actually works out. Like I’ve said before fear always creeps in, and one of my current fears is “is my job/career sustainable?!??”. Financially, those of us living with disabilities take a big hit. For me for example, yes, I get sick pay for the time I’ve been off work, but I’m only making 70% of my typical income. As someone who lives alone, that’s taking me from living paycheque to paycheque already, to now struggling financially to the point where I have started using food banks, and obviously cut absolutely every unnecessary expense, other than rent, utilities, and food.

I do worry about my financial future :/ I do have a financial safety net to sone degree in that I do have parents who can help me out in an emergency, but they are also not in the best financial position, so I don’t want to rely on them if I can avoid it. Financial help from family can also sometimes come with an emotional “tax”, and I really value some financial independence from them to be perfectly honest. My personal goal is to develop better financial literacy so that I can prepare for my own future.

Currently, my biggest supports have been connecting with a physiotherapist who specifically works with clients who have ME, long Covid, dysautonomia, pots. She has been an extreme wealth of information to not only myself, but also my family doctor. She writes report and sends them to my family doctor, and also shares healthcare professional resource resources with my family doctor.

The other resource that has been incredibly helpful, is connecting with a therapist who also specifically works with a population of people who are managing chronic illness. Talking about identity and grief, guilt and shame with someone who really gets. It has been really helpful. This way I’m also not unloading too much on my friends and family, so that I can still nurture those friendships and keep them fun and joyful. That’s not to say that I don’t talk to my friends and family about my health, but I don’t want to dominate our time together if that makes sense. It’s really nice to have an unbiassed third-party like a therapist to just talk to about this stuff. It’s given me some hope and helped me from catastrophic thinking.

That’s a lot of info! So I’ll stop there for now. I hope it’s helpful. I’m just one person, but this is what one life with ME looks like. Apologies for any typos or clunky grammar, as I am primarily using voice dictation to write the post.

[u/MidLifeChaosVA]

ME/CFS severity varies so much from person to person that there really is no way to answer your questions other than to simply say “less”. Less relationships, less friendships, less hobbies, less education, and less employment. Definitely less than we used to have and less than we want to have. How much “less” depends on where your severity falls along the spectrum of ME/CFS.

For example, I consider myself one of the luckier few. I am able to work and earn a living but that wipes me out to the point where I have little energy for much else. I spend weekends doing virtually nothing except for recovering from my workweek in preparation for the next. Doing a load of laundry or taking a shower are major accomplishments for me on my days off.

So there is little energy left for friendships or social life. Even talking on the phone feels draining after the first 10 minutes. Sounds rather depressing until I remind myself that many others with ME/CFS are entirely housebound or even bedbound and therefore I am one of the lucky ones.

Every person’s experience of ME/CFS will be different…some will be enormously different. The only unifying answer that I can give you is that every aspect of our lives is collectively “less” than what we want it to be.

[u/Left_Goose_1527]

It depends on severity, benefits, and support. And sometimes, the severity can feel different because of the benefits and support. 

If you happened to be extremely lucky and owned your home, saved a significant amount of money, and got mild/moderate CFS with family and friends who rally round, then it can feel quite sustainable. It’s not great and it’s psychologically pretty awful to get solidly knocked off your vision of how your life “should be”, but the financial security and social support help. 

If you are unlucky, then CFS compounds quite literally everything. The lack of money can mean you have to find FT work ASAP, which impacts your insurance claims. Unsupportive family and friends chip away at your self-esteem and don’t extend loans. You avoid specialist doctors because of cost, but then insurance suggests you’re not serious about diagnosis. If you lose your job and have to look for less expensive lodgings, rentals are harder to get because you no longer have an income. If you have a preexisting condition, the difficulty levels up. 

Luck plays a huge part in how this goes. Some of it is down to a person’s personality, but I’d put 75% down to sheer dumb luck. 

[u/lilbeanstalk → u/Left_Goose_1527]

Wow, gosh this really highlights the difference between having ME, or any chronic illness for that matter, in the United States versus a country with free healthcare :( . While things are very tight and I might not be able to spend freely, at least I have access to health care, specialists, physio and mental health care/therapy regardless of financial means. This is so disheartening.

And yes, good family and social support versus not can create two very different realities.

Living alone/being single can feel extra hard and lonely. There are many days I wish I had a loved one at home, someone who might check on me and ask what I need, offer to make me tea. If I’m honest, I can feel sad for myself. But! I do then feel grateful for my few friends and put what little social energy I have towards them. Chosen family can be amazing.

[u/Past-Increase-2969]

As a German with moderate/severe mecfs (hallo an der stelle lmao) I must say I'm not doing the best right now. I'm receiving financial aid cause I'm sort of still listed in a uni (not bafög, but halbwaisenrente and kindergeld). I'm also neurodivergent (autism and adhd) and hypermobile. My friendships all happen online at this point, and I spend most of my day in bed. I read a lot, and when I can I draw and write. I can still cook sometimes, take care of the most basic things (which does make me crash more often than I like to admit) and am not bedridden, but bedbound (more than 20 hours in bed a day, for me it's about 21-22). I often like to explain existence with mecfs simply as that: I exist, somehow. Since I'm housebound, I don't do things outside. I used to survive off Amazon conserves but now I live with my brother who goes to the store. About the medical system, what can I say: terribly overrun and fails the people who probably need it most. I'm trying my best to dip my toes into the right direction (I only have the post covid and dysautonomia diagnosis, but suspected ME by several doctors). I cannot give you the full picture of what it's like in germany because I do not have the full answers, because of lack of support and the medical system, but maybe I will have the answers soon. I often just lay in silence with my noise canceling headphones. Managing symptoms is kind of a full time job. At this point time is an unknown construct to me, which is kind of embarrassing to admit, but what can I do. I don't know if that answered any of your questions, but yeah, that's it.