Birthdays & ME

ME/CFS And Contemplating The Passage Of Time

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My Birthday

I recently turned 24, a statement that both terribly over and under-repressents my actual experiences. In some ways I still feel like the 19 year old college student who got sick 5 years ago. As though the past 5 years are a strange fever dream. In other ways I feel much more relation to an 80 year old with terminal cancer than a young woman in her 20s.

This post will explore this paradox. A collection of ways that Myaglic Encephalomyelitis can change your relationship to the passage of the time built upon my own, my friends, and community experiences.

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Living Death

Having ME, particularly severe ME, can cause the amount of activity in your life to drop to essentially zero. You may accomplish in a year what once would have taken you a week. This can make it feel like you essentially died at the point you reached this "living death" level of severity because all actions taken in the years since your severe illness are virtually negligible in comparison to what you did before.

It can be as though you are a ghost watching your former friends and family continuing on with their lives. Watching people mourn you and then recover, reach acceptance of your "death." Feeling yourself move through the stages of grief as you let the person you were die forever.

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Feeling Time Slow Down

If your symptoms are severe or you are pacing agressively you may feel time slow down. Boredom or pain can make time passing feel agonizingly slow. If you are waiting on and closely following research this can also make time feel like it is passing more slowly as research in ME is underfunded leading to slow progress.

Failure to sleep and innability to go outside can disconnect you from the passage of time. Day and night, spring and fall, they become meaningless strings of text on your phone. Completely cut off from the natural flow of time. Drifting in an endless never progressing void.

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Feeling Younger Than You Are

Productivity and life milestones are by nature of ME forced into delay. This means that even if you are 30 or 40 your life may be more comperable to someone in their 20s. If you are in your 20s you may still feel like a minor and be dependant on your parents for many needs. The lack of independence and life milestones can cause people with ME to feel much younger than our true ages.

The disconnect from natural time can make it feel as though a year could not have possibly passed. No seasons were observed, not enough happened. Certainly it has not been a year.

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Feeling Time Speed By

If you are able to be productive sometimes and are working on something you care about it may feel that time is speeding past. Since you have fewer working hours in a day, 7 days may feel like one.

If you are keeping tabs on friends and family you may see their lives progressing rapidly in comparison to your own. This can make it feel like time itself is moving too rapidly.

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Premature Aging & Feeling Older

For those who are already older, having ME can force an early retirement and bring upon many things commonly associated with aging such a living in a nursing home or recieving home care, aches and pains, becoming sedentary etc. This can cause people with ME to feel they are older than they really are. Even young people with ME may relate more strongly to the elderly in terms of ability to go out, constant chronic health problems, and choice of manageable hobbies like crochet or knitting.

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State Dependent Memory

As Whitney Dafoe has cautioned state dependent memory is highly present in ME. This means that when we are in one state (remission, relapse, crash etc.) We better remember all the other times we have been in that state. This can cause a lack of caution when we feel good because we do not remember the crashes that were the consequence of overexerting during these times. Likewise it can cause despair during crashes when we are only able to remember the other times we have been so severely ill.

One helpful way to combat state dependent memory is to use a journal to remind yourself on good days what you want to remember next time you are crashing and vice versa.

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Feeling Guilt Over The Passage Of Time

We are taught that people should have a reason for living beyond just surviving. If you have not been able to do much all year you may feel guilt that you have "wasted" your time. Likewise you may feel guilty about caregivers who have also not accomplished certain milestones they desire because of their commitment to your care.

Even if you do not hold yourself to arbitrary states of productivity you may feel guilty you "wasted" time because you did not have many experiences that you value.

It can help to remember that staying alive as a severely disabled person is itself an action, one of resistance. Likewise it is important not to devalue the work of caregivers by thinking they waste their time by caregiving.

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Anniversaries of Grief

If birthdays and anniversaries of all sorts often celebrate everything that has been done and experienced over a year, it is logical that when nothing or very little has been done or experiences and these expectations subverted we may feel grief over what was lost.

These anniversaries are sharp reminders of the opportunity cost of our illness. Of all the things we could not do in a year. Your timeless void is suddenly sharply interrupted, a forced reckoning to try to tack down that floating experience against a rigid calendar.

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Birthday and Holiday celebrations can be a rude awakening when you live with Myalgic Encephalomyelitis (MECFS) or Long Covid.

In many ways living with Myalgic E disconnects you from time. Especially when living with severe ME or very Severe ME and being housebound or bedbound.

Chronic Migraine and an inability to go outside can lead to a lack of connection to seasons and day and night. Especially for the large group of patients who struggle with sleep dysfunction, insomnia, and reversed-phase sleep cycle.

Living with ME / CFS can feel like being on a space station with the world drifting away below you, observed but not experienced. Time itself becomes unmoored as though you have detached from the rest of the universe and lie outside it watching it pass by.

But we do still exist within time even if it does not feel like it. Anniversaries are a reminder of that fact. And time passing does indeed cause some things to progress. Research moves forwards. Advocacy moves forwards. It may be that everything to do with ME is moving in slow motion, but that does not mean it is frozen in place.

On a geological time scale our community is zooming forwards. Time is subjective, it depends on frame of reference, our frame of reference is simply different to those around us.

So a year has passed. A year I wish I could get back. But if there is one physical truth about the universe and time it is that it moves forwards. The guilt or celebration, that's just annotation.