Pacing is a Privilege but...
What do you do when you have no good choices? You make bad ones. In this case, I argue for people with Myalgic Encephalomyelitis* (MECFS) the best bad choice is still pacing. Even if it means making compromised you never imagined you could.
*see diagnostic criteria post
---
Who does this not apply to:
-People with fibro and not MECFS.
-People with MS, Lupus, or another autoinflammatory disease who do not meet the ICC guidelines for a diagnosis of MECFS.
-People who have been "pushing" rather than pacing for decades and have not been deteriorating.
---
Who this does apply to:
-The newly diagnosed.
-People who meet the ICC guidelines for a diagnosis of MECFS regardless of other diagnoses.
-People who have experienced severe PEM or a severe relapse in the past caused by exertion.
---
But what do I do?
Here are some undesirable but likely necessary options you need to consider...
-Quitting your job and applying for government benefits*
-Relying on friends or family to take care of children even if they judge you for it (for example, having a grandparent move-in).
-Finding a partner willing to help support you.
-Downsizing your house, or apartment or moving back in with family.
-Seeking benefits under whatever diagnosis will get you them. (oftentimes a mental health diagnosis is the only one you can get if it keeps you off the streets it's still worth it)
*This is a long process and getting financial help through it and doing it while you still have some energy left is essential.
---
If you have ways to pace better that aren't this drastic obviously implement them first. If there is something you really believe will help you, try it but don't rely on it to save you. If this post made you realize you have more choice to the pace than you realized I'm glad. If this post made you realize you need to do some things you never ever considered possible for you I am deeply sorry.
---
Finally, if you are already trying all these options and you still cannot pace I am sorry and I am angry. Not with you but with a society in which we let people go homeless and die of an illness that could have been prevented simply by providing the basic necessities of life. If you are in America please reach out to the AMMES financial crisis fund as they may be able to help. Link in the bio.
---
Pacing is a privilege. I am so incredibly privileged to be able to pace fully. To not have to do anything beyond what my body will allow despite having #severeME and being fully bedbound. This is unique and most people are not in this situation.
However, if you are not in a position of privilege and use pacing is a privlege to justify pushing yourself repeatedly please stop. Yes, pacing is a privilege, but that does not mean you should not do everything in your power to pace. Even things that are looked down upon by society or you feel shameful about doing.
It is wrong that we stigmatize benefits. It is wrong that we stigmatize accepting help, moving back in with parents, etc. But society being wrong doesn't change the best decision for your health.
Not to mention, these options of seeking help are often difficult to pursue, they take some energy and stamina. Stamina that you will quickly lose if you are unable to pace. It is essential you begin seeking these services early. Especially in the US where it is standard to require getting turned down and reappying for disability.
Pacing is a privilege. But not pacing is not an option. You need to do whatever it takes to preserve what health you have left. Start a go fund me. Get benefits however you can. Move in with relatives. Get help from a partner. Unfortunately the less resources you have and the less pacing privledge you have the more essential it is to preserve your health.
Finally, ought implies can, pacing is a privilege does exist at a limit. If your only choice is walking to the bathroom or pissing the bed you may have to do that. If you need to go to the doctors or risk losing benefits thats a necessary choice. But do not let guilt of asking for help stop you from pacing. Yes it is privilege to be able to have help freely given, or be able to afford hired help. But that doesn't make asking for help the worst option. The worst option is asking for help too late when you have no choice and risk homelessness and death.
Pacing is a privilege is like saying housing is a privilege. Yes, it is in that some people have no choice. But no it is not in that it is a basic need.
