My Story Introduction | Stage 0 | Stage 1 | Stage 2 | Stage 3 | Stage 4 | Stage 5 | Stage 6

Stage 2: My ‘Sign’ At Diagnosis

The MS Label

The MS diagnosis gave me a Label for what was happening to me. Immediately, it seemed to explain and legitimize my existence.

You see, once I had the MS label, I was in effect officially ‘Disabled’. I got my Disability Badge, Disabled Walking Stick, TShirt etc.

I felt ‘Relief’...My symptoms were finally being acknowledged: I wasn’t nuts after all...Or?

With the diagnosis, Powerful Cultural Forces came into play.......

Cultural Expectations

I soon discovered that the label of ‘disease’ or MS carried with it certain expectations of behaviour. It was as if now I had a Legitimized ‘Sick Role to Play’

For a moment, please consider how your MS may be negatively affected by cultural norms and expectations.

Do you, for example see how you’re supposed to ‘fit’ a certain ‘role’, are expected to ‘behave’ in a certain way, and are perceived by others in a specific way?

Do you also realise how culturally derived myths, expectations and standards surrounding disease can worsen your suffering?

For example, I often tried to be positive, proactive and physically capable. Even though I was hurting physically or emotionally, I sometimes showed no obvious external ‘disability’.

Yet I found that because of the common understandings of disease, some insisted on treating me as sick. Worse, they tried to force me to conform to their understanding of that role.

Other times, people didn’t believe I had MS as I didn’t fit what ‘having MS’ was supposed to ‘look like’.

People’s Perceptions

Why did people try to force their perception on me?

Because it made them feel more comfortable! People do not like ambiguity or uncertainty, both so characteristic of MS. So when I didn’t conform to their standards or expectations, they felt uncomfortable, or Afraid.

These issues led me to ask:

“How can I live with Integrity
in a world shaped by others’ interpretation of my experience?”

For more fascinating facts about the role of culture, labeling and others’ perceptions on your health, please see Core: Emotions - Sections 1.2 - 1.3.

Conclusion

The MS ‘label’ both helped and hindered me:

MS Death Sentence

• It Helped to ‘legitimize’ my symptoms and give me a ‘culturally defined role’ as Chronically Sick. In that sense I was relieved.
• It Hindered me because I hated being labeled as something I didn’t fully understand or want to believe in. Believing that I was chronically sick, disabled, with, in the Doc’s eyes, ‘Only 10 years to live’ basically confined me to MS Hell Until Death.

A 10 Year Death Sentence!

Indeed, the ‘relief’ at diagnosis passed quickly as shock then anger and confusion reigned.

Guilt and misery swamped me. My behaviour was shameful, my emotions helter skelter. The drugs - morphine and powerful steroids - just made the haze, bewilderment and turmoil worse.

The Meaningless Shock of Stage 3 had begun....

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