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Expectations During The Holidays

Whatever we are celebrating during the holidays, many ME/CFS patients feel expectations from family, friends or loved ones to be a part of the celebrations in a way that we are too sick to be able to. This causes a lot of suffering and internal conflict.

Part of the reason for this suffering is that there is so little known about ME/CFS. This leads to us questioning ourselves constantly and often blaming ourselves for not "performing" better or being "more productive" because we don’t have enough medical information about our health to understand what is happening to us. So anyone questioning our limits or encouraging or expecting us to do more than we can feeds our own self doubt about the legitimacy of ME/CFS and it becomes incredibly difficult to think about our own real needs.

But ME/CFS is a real illness. Self doubt about our illness and our symptoms is natural given all the unknowns and is something we should all work on long term. It is a very important goal for all of us including myself to follow what we need and never doubt what we feel.

But for now, for this holiday season, remind yourself that ME/CFS is a real illness. Asking or expecting you to push yourself beyond your limits is no different than asking or expecting someone with lung cancer to smoke a cigarette. Yes, it is possible, but no one would ever ask or expect them to. It is the same with ME/CFS. No one should ask or expect us to push ourselves past our limits.

Aside from questioning the legitimacy of our own illness, the situation is further complicated by the illusion that we have a choice. It is possible to push ourselves past our limits and try to meet the desires and expectations of loved ones, just like it is possible for a lung cancer patient to smoke a cigarette to meet social expectations. But it is not really a choice. it makes us worse, possibly for months, or years. The people expecting us to push ourselves past our limits don’t understand the long term implications or the reality of the consequences. Both for us and for them.

If you push yourself to try to meet expectations now during the holidays and get worse, then ME/CFS will force you to do less and not meet those same expectations in the future. You can push yourself now, but then ME/CFS will simply force you to do less. It is much better to do less in the first place and maintain your ability to do as much as you can within your limits long term.

This is the pattern with pushing yourself and crashing. When you go over your limits you get worse and then your limits get lower and you can do less. Soon, what you could do if you pushed yourself is impossible and what was once possible within your limits requires pushing yourself. And if you keep pushing yourself, this cycle continues to make us worse and lower our limits until we stop and learn to live within them. To learn more about energy limits and crashing with ME/CFS, please read my blog post called   ‘Staying Below Energy Limits".

This pattern is true for both mild and severe patients. For mild patients, I know that pushing yourself feels ok to do because you feel like you bounce back, I had mild ME/CFS for years and truly understand. But the truth is that it makes you worse long term even if you don’t notice it immediately.

So hurting yourself to meet other’s expectations is a very short term solution that could very well mean seeing those people less in the future, whether you are severe, and will no longer be able to see them at all in the near future, or whether you have mild ME/CFS and it means heading further down a path towards seeing them less.

If we do not take care of ourselves, we cannot be there for anyone else. If we make ourselves worse trying to make other people happy, we will only get worse and be less present in their lives and less able to make them happy in the future. And we might even require more help from these same people in order to survive, which could totally change their lives.

Crashing is not a choice. We have a physical illness and crashing makes that illness worse and makes us less able to do the very things we are trying to do by crashing.

So listen to your body this Holiday Season and remember the millions of patients with ME/CFS in the world facing the same dilemma, use them as support to follow what your body needs. When you wonder if you are just not trying hard enough, think of the millions of ME/CFS patients out there who have the same health symptoms and the same energy limitations and are all wanting to do as much as they can and live as fully as they can. When a loved one expects you to do more than you are able to or doesn’t believe your illness or your symptoms are real, fall back on the ME/CFS community by picturing all of us reminding you that it is real. We are all here living with the same cruel illness and we are all real and we are all here for you.

Rejoice in what you are physically capable of doing and remember that the people asking or expecting you to do more simply do not understand ME/CFS. But we all do understand. Lean on this community to remember that ME/CFS is real and physical, and that crashing is not a choice.

I will be alone all day on Christmas and through the holidays and sending love to all of you to follow what your bodies need and prioritize your health. Not just for you, but for your loved ones as well. Because the healthier you are, the more you can safely be with them and support them without hurting yourself.

Join me in celebrating a crash free Holiday Season this year!



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