The Mighty Logo

Why Hair Loss Due to Chronic Illness Matters

The most helpful emails in health
Browse our free newsletters

A while ago I took the plunge and made a hairdresser’s appointment to get a shorter cut. Sounds pretty normal, doesn’t it, but for me it was huge!

Over the past five years, since my leg broke due to a rare disease, and following each major surgery, my hair has been breaking off in chunks. I’m not sure if it’s gone out in sympathy with my broken bones but whatever the case, I have quite significant gaps in my hair where it should be longer in length. Instead it is short and stubby and honestly, bald on top.

A Surprising Handful

We all lose hair. It’s not uncommon to see your hairbrush full of wispy strands after a period of time. It’s cyclical for everyone. It’s the amount of loss that’s the issue. I started noticing some long strands between my fingers when washing my hair in the shower. I just thought it must be strays or too much hairspray, probably the latter as I do love to style my hair and let’s face it, the odd layer of cement to hold it in place is very necessary!

I was not expecting what happened a few nights ago, though. After applying shampoo and gently lathering, I rinsed and applied conditioner. I began to run my fingers through my hair to allow the conditioner to infiltrate the ends. All felt smooth and healthy. I felt the few normal wispy strands in my fingers, or so I thought.

To my complete surprise and shock, I looked down to find a handful of wet brown hair in my hand. I felt sick. This wasn’t normal. I ran my fingers through again thinking I must have had a large knot I’d unknowingly pulled out. Sure enough more hair came out. Not quite as much, but definitely more than what should have come out.

There was no denying I was now experiencing real hair loss.

You’ve Gone Bald!

I’ve been able to quite cleverly disguise it with styling, but this morning my husband said he can definitely see the bald patches on top. He wasn’t being cruel. He is my best friend and always tells me I look beautiful even when I don’t, so if he says it’s not looking right anymore, it’s definitely not.

I’ve never been a fan of short hair on me, but I’m getting used to a shortish bob. I think it’s definitely time to go shorter still.

It Does Matter, Even If It Doesn’t!

Hair loss is a real issue for many of us with chronic illness, and often even more extreme for cancer patients. Some may think it’s the least of our problems. My immunologist certainly does! He is a lovely man, but wasn’t incredibly compassionate when I first raised the topic. His view is that it’s more important to have the right medication to control my disease. He also thinks my hair loss is due to my rheumatoid arthritis, associated autoimmune diseases and rare bone disease. He’s right, I do clearly have more serious issues than hair loss.

My grandmother lost most of her hair and needed to wear a wig. Two of my aunties are experiencing significant hair loss too. There’s definitely an hereditary link going on.

I think hair loss does matter, even if it doesn’t. It is important to feel we are looking the best we possibly can, especially when our health is compromised.

My beautiful hairdresser explained to me last visit that we often lose significant amounts of hair post major surgery. She also said the hair loss doesn’t generally start until three months after the surgery, or a stressful situation like moving house, death of a loved one etc.

It all began to make sense.

I’ve had 15 surgeries in 12 years, 10 of those in the last five years. I’ve also had two house moves in five years. It’s little wonder I’m starting to go bald!

Oh well, it is just hair after all. If worse comes to worse, I can eventually consider a wig. It might even be easier., right?

Hair loss won’t kill us but it is a symptom of an underlying cause. I know what’s causing mine but if you’re not sure, speaking to your hairdresser is a good starting point. Speaking to a dermatologist is also helpful and important if it’s worrying you. They are trained to assess hair loss and investigate causes if needed.

Don’t Feel Bad for Feeling Sad

Loss of any kind brings a sense of grief. Hair loss is a form of loss, so it’s OK to feel sad, no matter your usual sunny disposition.

It’s OK to grieve. It’s OK to feel like it’s the last straw. We endure so much with our chronic diseases.

Once you’ve acknowledged your grief, it’s time to take action. Think about ways to live with your hair loss:

Will a new hairstyle cover the issue? Speak to your hairdresser.

Is something systemic happening? Speak to your GP and ask for a referral to a Dermatologist.

Will a pretty scarf or ponytail solve a temporary hair loss issue? Have fun trying new looks.

Is it time for a wig? Speak to a wig expert, someone who helps cancer patients. They also understand other medical causes of hair loss.

Ultimately I wrote this article for anyone starting out on the hair loss road. I want you to know you are not alone. It’s not an easy road, but it’s not insurmountable.

You’ve got this.

Together we’ve got this!

Getty image by Chokja.

Originally published: August 28, 2019
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home