Chronic Illness Doesn't Give You A Holiday Okay... But Actually Consider the Ramifications of that. Severe & Very Severe ME and Holidays
We see this all the time with the holidays and pointing out that there is no break from chronic illness. But I think many healthy people do not truly understand what this means.
-Doctor's offices close but we still flare.
-We never get to look forward to a day off. Ever.
-If you have a mental breakdown, you can't take time off for mental health.
-If a loved one dies, you don't get time off to grieve.
-Weddings, funerals, anniversaries, birthdays, are not holidays.
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Levels of Severity & Holidays
It is worth remembering that severe ME encompasses a huge range of severity. Some severe ME patients may even be able to join their families for a meal provided accommodations are made and they are able to rest extensively before and after. Other extremely severe ME patients may not even be able to receive communication to understand that it is a holiday.
Some things that may be major holiday activities for severe ME patients:
-Eating a holiday meal at a table
-Spending time at a family gathering on a day bed or couch
-Driving around the neighborhood to see holiday lights
-A holiday craft in bed
-A holiday meal/s in bed
-A brief visit in bed from family member/s
-A phone conversation with a family member/s
-Waving to family members in the door
-Reading cards or opening presents
-Holding the hand of a loved one
-Sending or receiving holiday text messages
-Viewing photos of family celebrations
-Viewing holiday decorations or lights in the bedroom
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Holidays and Antiholidays
For many people with severe and very severe ME, the holidays can actually feel like antiholidays.
Our care may suffer when doctors, nurses, and care agencies take their time off.
We may face increased risk of infection from caregivers and loved ones who normally are isolating with us but make exceptions "for the holidays."
We may face more pressure to be social and more judgement for our illness.
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Holidays and Mental Health
Holidays can be an extremely stressful time for mental health of people with severe ME for a number of reasons including:
Expectations of "holiday cheer" even for patients who are too ill to celebrate or have much to look forward to
Prompts to look back on our year, which can draw our attention to low quality of life and lost time
Prompts to "make goals" for the new year (often including the push to set goals outside our control such as illness improvement)
Sudden barrage of check-ins and "how have you been?" for newly diagnosed patients OR lack of check-ins from friends who are fading away for long-term patients
Reminders of past holidays which can draw attention to decreased functionality or past trauma
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Caregivers Deserve Holidays Too
It is worth pointing out that none of this is to say that caregivers, doctors, and nurses do not deserve holidays. They absolutely do.
Indeed, the caregivers of those with severe ME often make major sacrifices to their own holidays in order to care for us.
Likewise, the medical and caregiving professions are ones where holidays and leave are often undergranted and undervalued.
All of this can lead to increased rates of anxiety depression and caregiver and physician burnout.
But the difference is that caregivers and physicians can physically take a holiday, even if those holidays are often wrongfully denied.
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Holidays as Breaks
What is true regardless of whether your ME is severe enough to stop you from celebrating the holidays at all is that holidays for people with severe ME are not a break.
Furthermore, severe ME has no breaks. This is a harsh reality that you truly cannot understand unless it happens to you. But for healthy people...
Imagine the worst job you ever had. A boss who despises you. Tedious and pointless work. Coworkers who gossip behind your back leaving you isolated and lonely. Backbreaking physical tasks that push you to your limit. Daily unpaid overtime.
Now imagine that that job had no weekends. No time off. No holidays. That you knew you had to go to work every day until you die or until someone changed the labor laws (and of course, the only people who care about doing that are working the same hours as you with no time-off to be politically active.)
Think you would have a mental breakdown? Good luck. There's no leave for that either.
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Breakdowns Require A Break
I personally believe that this lack of breaks leads to essentially a trauma response in many severe ME patients necessary to survive.
When we have a mental breakdown of any sort, we do not get space away from the severe pain and symptoms to process it. As a result, I believe dissociation is an extremely common response.
Many people see those of us with severe ME as incredibly strong for not breaking down in the face of unimaginable suffering. But this is because they do not understand that there is no other option. To break down requires a break. A break that severe ME does not grant.
Crying with severe ME or feeling our emotions is exertion. Exertion that will be met with PEM. The more severe you are, the more traumatic and mentally impossible your situation, the less space you are allowed to process it.
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Holiday Advice
For those with extremely severe ME (who aren't reading this):
-Have self-compassion for whatever way you can bear to exist. Holidays or none.
For those with very severe ME:
-Be accepting if the holidays for you are antiholidays.
-Do whatever you need to to get through the day
-Feel free to pick another day to try to celebrate separate from when your caregivers and family celebrate
For those with severe ME:
-Find the tiny moments of joy in the holidays you celebrate however you can
-Try not to compare your holidays to previous years, focus on the here and now
-Break up holiday celebrations to pace better
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A note on unliving* and holidays:
The holidays can be a major trigger for depression and depressive thoughts.
The lack of breaks as described here makes surviving with severe ME extraordinarily difficult and the lack of treatment or cure means that sewerslidal thoughts are common and rationally based.
For this reason, while I encourage all patients with severe ME to stay alive as long as they can bear in hopes they can make it to a remission or until treatments are developed, I support VAD and MAID in some cases as harm reduction for severe ME patients. See my separate post for my full position.
Despite this, I want to highlight the distorted emotions we face around the time of the holidays and encourage anyone facing thoughts of unliving to remember that distortion.
The holidays are temporary. The difficulties surrounding them are temporary. The heightened despair and sense of loss we may feel at this time is temporary. Unaliving is permenant. Do not make a permanent decision based on something temporary.
See my mental health and peer support highlights for more help and non-carceral resources.
*blame Instagrams shadow banning of this discussion for why I have to use euphemisms and misspellings
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Chronic Illness Doesn't Take A Holiday
(TW last slide: sewerslidal ideation)
That's the line right. We've all heard it before. But it is more than disruption or loss of holiday traditions.
Severe ME is imprisonment with no parole. Myalgic Encephalomyelitis does not come with breaks.
Remissions may happen for some. But they can take years or decades to manifest if they ever do, and they are not predictable or within our control.
All but the most severe patients can often find a way to mark the holidays. See last year's post for ideas.
But holidays are meant to be a vacation of sort. A break. That is the role they truly fail to fulfill for almost all person with ME.
Our illness does not stop.
Doctors close but we still get sick (more so because of additional social exposure and flu/covid season).
Caregivers go on leave but we still need care.
This job of severe ME so to speak comes with no hours off, no sick leave, no overtime, and no holidays.
It's enough to push anyone to their breaking point. Of course, having a mental breakdown requires some time off.
It is very common for people going through a health emergency to only begin to process that trauma when they finally have a break. For severe ME patients this may not happen. For patients with very Severe ME and extremely severe ME, it may be a survival necessity not to fully process their reality.
I say this not to depress you. But to tell you that it's okay. It's okay to focus on the here and now because you don't have room for more. It's okay if this is a time of grief for you. It's okay if this is a time of stress for you, even good stress. It's okay if your holidays feel like anti-holidays. It's okay if you sleep through them.
And I say this for our families and loved ones: please see the sacrifices we make to participate in holidays at all. Please remember that for us, they aren't time off.
I encourage anyone struggling to reach out to friends, family, and professional help as you are able to safely access.
