Over and Over Again

There is a particular kind of exhaustion that has nothing to do with fatigue.

It does not come from walking too far or standing too long. It does not come from neurological depletion or physical strain. It comes from explanation.

It comes from repeating the same truths about your body, your limitations, and your reality, over and over again, to people who have never had to question their own.

Multiple sclerosis exists inside me every day. It shapes my energy, my mobility, my decisions, and my future. For everyone else, it exists only when I bring it into conversation.

Each time I do, I start from the beginning.

I explain that it is neurological. I explain that it is unpredictable. I explain that fatigue is not the same as tiredness. I explain that symptoms fluctuate. I explain that disability does not always look visible.

The explanations are necessary.

Without them, people misunderstand. They assume capability where there is limitation. They interpret absence as disinterest. They interpret rest as avoidance. They interpret unpredictability as inconsistency.

Explanation becomes the bridge between their assumptions and my reality.

Crossing that bridge repeatedly is exhausting.

Every new person requires a new version of the same conversation. New colleagues. New acquaintances. New professionals. Each interaction carries the quiet expectation that I will translate my existence into something they can understand.

Education becomes my responsibility.

There is no single sentence that captures the reality of living with MS. No simple explanation that conveys the emotional, physical, and psychological complexity of chronic illness. Each attempt feels incomplete.

Language cannot fully communicate what it means to live in an unpredictable body.

Explanation requires vulnerability.

It requires admitting limitation. It requires exposing parts of myself that I would otherwise keep private. It requires confronting misunderstanding directly, knowing that understanding is not guaranteed.

Some people listen. Some people do not.

Some people offer sympathy that feels genuine. Others offer advice that feels dismissive. Suggestions arrive easily from those who have never lived inside a body that does not cooperate.

Have you tried exercising more?

Have you tried changing your diet?

Have you tried resting more?

These questions reveal the distance between experience and perception.

Explaining the reality behind those suggestions requires emotional energy. Correcting misconceptions requires patience. Responding to doubt requires composure.

Each explanation draws from a limited reserve.

Fatigue already consumes part of that reserve. Emotional labour consumes the rest.

There are days when explaining feels heavier than the symptoms themselves.

Silence becomes tempting.

Silence protects energy. Silence protects privacy. Silence avoids the discomfort of being misunderstood. Silence allows me to exist without becoming a source of education.

Silence also creates isolation.

Without explanation, people fill the gaps with their own assumptions. They create narratives that reflect their understanding rather than my reality. They interpret my life through a lens that was never designed for me.

Explanation becomes necessary again.

The repetition never fully stops.

Chronic illness requires constant negotiation. Each environment introduces new expectations. Each relationship introduces new conversations. Each stage of life introduces new people who need to be brought into awareness.

I have learned that explanation is part of advocacy.

Speaking openly creates visibility. Visibility creates recognition. Recognition creates the possibility of change.

Advocacy, however, carries a cost.

It requires emotional labour that often goes unseen. It requires patience in the face of ignorance. It requires composure in moments of frustration.

It requires explaining myself when I would rather simply exist.

There is grief in that reality.

Grief for the ease of being understood without explanation. Grief for the simplicity of moving through the world without needing to justify my needs.

There is also power.

Each explanation challenges assumption. Each conversation expands understanding. Each moment of honesty disrupts invisibility.

The exhaustion remains.

Explaining my disability does not become easy. It becomes familiar. Familiarity does not reduce the effort required. It only reduces the surprise.

My existence is not an educational resource.

My life is not a lesson plan.

I am not obligated to explain myself to everyone.

I choose when to speak. I choose when to conserve energy. I choose when visibility serves me and when silence protects me.

Both are valid.

The exhaustion of explaining myself will likely never disappear.

What has changed is my understanding of its weight.

It is not weakness to feel tired of educating others.

It is the natural consequence of living in a world that was not built with my reality in mind.

The exhaustion is not a personal failure.

It is evidence of the labour I carry simply to be understood.