RARE DISEASE VISIBILITY

The term ‘invisible disease’ and ‘invisible disability’ is one that holds increasing currency and importance in Not For Profit circles. That is because in the last decade cause groups have come to realise that there is something esoteric which can connect conditions as disparate and apparently unrelated as arthritis and agoraphobia or asthma and OCD.

These conditions are considered ‘invisible’ because they all lack obvious signifiers in everyday life and thus they all come up against similar challenges in the social sphere.

For one thing it is exceptionally difficult to raise funds or even awareness around a condition that does not manifest in a visible and visceral way.

People can understand cancer and paralysis on a gut level and it is excellent that those worthy causes are given their due attention, however greater support is needed for those whose problems fly too easily under the radar.

One of the key risks with ‘invisible’ conditions is that they are only invisible until a crisis event occurs, such as an asthmatic attack or a panic episode, in which case members of the public may be faced with having to help someone whose problems they do not understand. Too often this leads to the bystander effect or misinformed responses such as “pull yourself together” or “stop making a scene”.

We consider cystic fibrosis (CF) to be an ‘invisible’ illness because its symptoms are mostly not apparent to other people in day to day life, especially if you are undergoing treatment. However, that does not mean that the invisible struggles of life with CF are any less draining or harrowing, in fact they are more so.

Here are some links related to invisible illnesses to help us better contextualise this new and important way of understanding adversity.

Additional Resources

Visibility:

Evolving towards becoming visible – CF News Today

Worlds first Alport Stamp is Macedonian mom’s latest win for rare disease patients – CF News Today