When Your Illness Makes You Break Society's Expectations

Hair.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Something so simple. Something that often is just a fact of life for most people. But for those with chronic illness, hair can be a big problem.

If you’re female, it’s generally more common to have longer hair.

This societal expectation can lead to extra problems for those with chronic illnesses.

I’ve had mid-length hair for years. I have “easy” hair. Dead straight, doesn’t require much attention. But thanks to chronic illness, managing it was still difficult. Being unable to raise my right arm above my head without pain and numbness makes dealing with hair difficult. Often energy is a big issue too. I have to carefully delegate my spoons throughout the day so I actually have some chance of managing adult life. I often don’t have enough spoons to spare for hair care come the end of the day.

Aside from a brief period in time a number of years ago, I’ve always had hair long enough to put up – until I started to have health problems, I preferred longer hair.

I toyed with the idea of getting my hair cut short after struggling with it, but was afraid of what others would think. It’s also not easy to give up something you feel is part of your identity, for the sake of heath issues.

It wasn’t until recently that I’ve actually realized that what others think isn’t important.

What is important is that I do what I feel is right.

After this realization, and massive support from the Ehlers-Danlos syndrome (EDS) community online, I decided to go ahead and try short hair.

Best decision ever!

With a wash and dry, I’m done within 10 minutes. I don’t really need spoons to take care of my hair now. I don’t get disheartened by waking up with balls of hair on my pillow, or loads of hair washing down the drain whilst having a shower.

The subconscious impact societal expectation has on how you should present yourself, act, or exist, is massive. This can be hard for anyone, but especially those that have no choice but to break expectation in order to survive.

I would have previously said I didn’t care much about what others thought. After all, Dr. Seuss once said, “Those that mind don’t matter, and those that matter don’t mind.”

But it’s still very much the case that most of us simply want to fit in quietly, and not draw attention to ourselves. By breaking expectation, attention can often be brought upon ourselves.

Who would have thought hair could cause so many problems?

The issue extends way beyond hair too. Simple, every day boring things can be much more difficult for those with health issues.

Before you judge someone, please think.

Their choice of clothes may not actually be a choice, but more of a necessity to allow them to live comfortably.

Their unhealthier food choices may not be because of lack of education, or laziness, but simply the fact that unhealthier foods are often the quickest and easiest to prepare; requiring less spoons.

Some have short hair, long hair, no hair, in between hair.

Some wear baggy clothes, skinny clothes, lots of clothes, or PJs!

This is OK, this is all OK.

Please remember, we are all doing the best we can with what we have.

Getty image by Astarot