We Are Already Trying.Why "Just Try" Isn't Helpful & How Trying Can Hurt People With MECFS

What It Sounds Like

About symptoms:

•"Just try to ignore it."

About events:

•"Just try coming for a bit."

•"Just try it, it might go well."

About relationships:

•"Just try to be understanding."

•"Just try to keep them in your life."

About Treatments

•"Just try it, who knows it might help."

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Why It Hurts

The assumption behind this statement is that chronically ill people are not trying to get better. Or not trying hard enough.

Chronic illness completely upends your life. MECFS obliterates quality of life. Nobody could go through such a change and not try everything in their power to get better.

So when someone suggests that we might not be trying, it hurts deeply.

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Trying With MECFS Can Be Dangerous

Trying to ignore symptoms means ignoring our body's warning signs.

Trying to go to events can trigger post-exertional malaise and even lead to permanent decline.

Trying to maintain relationships with people who do not understand our illness can lead to stress-related symptoms, emotional exertion-triggered post-exertional malaise, and development of depression & anxiety.

Trying unproven drugs can cause side effects and hypersensitivity reactions. Trying unproven treatments (especially physical treatments) can cause stress and post-exertional malaise.

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Intention vs Interpretation

Like many statements that sting, the person saying "just try" rarely has the intention of harm. The statements normally come from a place of genuinely thinking it could help you to "just try" this thing.

The problem is that the statement ends up illustrating and feeding off of prominent misinformation and stereotypes about people with chronic illness and MECFS that we lack motivation and aren't trying to get better.

Even if the person making the "just try" statement doesn't believe these things, they are unconsciously continuing to perpetuate them.

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"Have you tried"

A slight variation on the "just try" statement, "have you tried yoga" is such a commonly encountered phenomenon it has become a chronic illness meme.

Common suggestions for pwME include "have you tried"

-Yoga

-Herbal Medicine

-Supplements

-Therapy

-Niche Diets

-Medical Medium / Hypnosis / Psychics

-Praying

None of these things will cure MECFS. Some might make someone feel a bit better. Some may even be harmful.

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Yes. We've tried it.

The problem with "have you tried" is not the suggestion. Even if the suggestion is good, the assumption still lies that the chronically ill person is not "trying" hard enough.

Additionally, if your interactions with a chronically ill person often revolve around these types of suggestions or "when will you get better" and "what can be done to fix this" it can give the impression that your friend or family member needs to be fixed to have a worthwhile life. This is a dangerous and even deadly mindset in people with MECFS and incurable chronic illness.

Finally, it is unlikely, especially in patients who have been ill many years, that a healthy person can name a single treatment the chronically ill person has not already encountered.

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Helping Without Trying To Cure

The aim of these statements is normally to help the person with chronic illness get better. But when someone has an incurable illness like MECFS this isn't helpful because there is really nothing either of you can do to improve the chronically ill person's chance of recovery.

So instead of offering suggestions or trying to get the person to act healthier, give them permission and support to listen to their body.

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Helpful Examples

Here are some examples of how to support without "fixing" in different scenarios

About Symptoms

•"I can't imagine how difficult that must be."

•"I'm so sorry you have to live with that."

About Events

•"We all care about you a lot and would love to see you but please do what is best for your health."

•"Let me know if there is any way I can make this event accessible to your health."

Possible suggestions: "If you want we can..."

-Zoom you in

-Have a room set aside for you to lie down and rest

-Find a wheelchair-accessible venue

Etc.

About Relationships

•"You don't deserve to be treated that way."

•"I'm sorry they don't understand what you are going through."

•"I'm sorry you have to keep interacting with someone who treats you like that."

About Treatments

•"I hope you know that I support you in any way you choose to live with this illness."

•"You're an amazing person even when you are so sick."

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The Takeaway

Statements of "just try" or "have you tried" might come from a well-intentioned place but they can be annoying or even deeply hurtful to people with MECFS because they support harmful stereotypes that chronically ill people

-Are not trying or not trying hard enough to get better

-Have not tried or are resistant to trying treatment

-Are only valuable if they are recovering from their illness

These statements can be dangerous if they push people with MECFS to

-Go beyond their pacing limits

-Try unproven therapies

-Believe they are not worthy of life because they cannot recover

Instead of these types of statements, you should support chronically ill people with statements that encourage them to

-Listen to their bodies and make the decisions that are best for their health

-Value themselves regardless of how their illness is going

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People with MyalgicEncephalomyelitis don't need encouragement to just try anything besides pacing and rest.

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While statements that we should "just try" yoga, supplements, medications, experimental treatments, PT, and so on might be well-intentioned they perpetuate stereotypes that people with chronic illness

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-Aren't trying hard enough to get better

-Haven't tried or refused to try treatments

&

-Need to get better to be valuable

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There are no FDA-approved treatments for MECFS. Patients have some of the lowest functional abilities and quality of life of any disease. We are desperate for treatment. Desperate to cure MECFS.

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So these statements do not only harm us by perpetuating stereotypes. They can push us to

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-Try unproven and risky treatments

-Waste our money on treatments with no evidence of efficacy

-Push ourselves beyond our limits and into post-exertional Malaise which can cause a permanent decline in our health

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Pacing means rationing your life and your passions. Persons with ME will seek out reasons and excuses to ignore pacing and live because it is only human to be addicted to life.

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So your comment to "Just try to come" to "Just try it once" this can be the excuse we need to ignore our body's signals and do something we will later regret.

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Setting boundaries, saying no, not trying something, these things are not giving up, they are fighting. Fighting for your quality of life. Fighting to slow the progression of your disease. Fighting for stability. Fighting for your health.

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To fight ME / CFS you must surrender to survive.