This is one of those sentences many people hear when they first become chronically ill. Most were independent, active people before their illness. They volunteered; they were helping others. And suddenly, they are the ones needing help: medical help, financial help, help with everyday tasks.
But oh, if it were as easy as “accepting” help. That implies that help is offered, or at least available, in the first place.
You need medical help, if only with managing your symptoms?
Doctors who are actually knowledgeable about Long Covid and myalgic encephalomyelitis and prescribe off-label medication are few and far between and, depending on the health care system of the country, one often has to pay out of pocket to see them. Wait lists are multiple years long, if they have a wait list at all and have not stopped taking new patients altogether.
Unable to work and in need of disability benefits?
Assuming you somehow manage to apply for them (a huge cognitive undertaking even for healthy people), you may encounter assessors who do not “believe” in myalgic encephalomyelitis, attribute your disability to functional neurological disorder or depression instead, and conclude: “With graded exercise therapy and cognitive behavioral therapy, the applicant will be able to work full-time within six months.”
Need help with groceries, cleaning, laundry, or someone to drive you places?
Some of those friends who readily helped in the first few weeks will soon realize that this will take longer, get annoyed that you are not “getting better”, and give up on you.
“Just employ a cleaner” is easier said than done, too. When the cognitive exertion of employing someone, instructing them, setting boundaries regarding infection prevention etc. is more demanding than just wiping the floor in stages, over many weeks, one might choose the latter even if it means the house will never be fully clean and there is no capacity left for other activities.
And even if help is offered, available, and paid for by insurance, it usually comes with conditions.
For example, I was trying to arrange an appointment for occupational therapy to “learn pacing”. At that point, I had already learnt that phone calls lead to PEM, so I did not take them immediately, but called back when I was able and tried to communicate by email – accommodations that one is supposed to learn about in occupational therapy for pacing. However, arranging the appointment could only be done by phone, not email or online. And when I did not immediately pick up a call-back, I was told off for “not being available” and if I wanted this appointment, I had better pick up the phone when they called me.
When I was a lecturer, I was usually unavailable from before the first lecture of the day until after the last. Many people who work cannot just drop everything and take a private call.
But as a chronically ill person, you are often seen as a beggar who is graciously offered help and you are expected to play by the rules of the person who is offering help.
So, “being able to accept help” is the least of the problems here. Yes, many people struggle with that at first. Nobody likes losing their independence, and many try to hold on to it for as long as possible.
But the real problem is that help often isn’t available or isn’t accessible. That is a systemic problem that telling people to “just get help” or “accept help” won’t fix.