How To Cope With Hair Loss In Chronic Illness

Hair Loss in Chronic Illness

Sometimes I look in the mirror and wonder, “What happened to my hair?”

My hair has not been the same since I became chronically sick over eighteen years ago.

How does a girl cope with hair loss while chronically ill?



It is safe to say that, “A Woman’s hair is her glory.”  As a woman I have had a love hate relationship with my hair since my teenage years. I have jumped back and forth between wanting a different hair color. If it was curly I wanted it straight and vice versa. Throughout my teens and early twenties, I spent an inordinate amount of time on my hair. The journey to self acceptance has been long and varied.

When I reached my thirties I decided I liked my hair just the way it was! I have natural brown, wavy hair. When I was in my twenties I had thick, lustrous hair that fell almost to the middle of my back. It had gorgeous natural auburn highlights and a vibrant shine. Little did I know then, that I should have enjoyed it while it lasted!

Upon reaching my early thirties, I began to get sick. As time marched on I continued to grow sicker and sicker. My hair would go through cycles of falling out and then growing in again. Usually a little less thick with each cycle of loss. Over the course of the past eighteen years, my hair has gone from vibrant and healthy, to a thick, limp, dare I say it mess.

To say I feel violated is an understatement. Over time, I have had to slowly let go of the self-image that was connected to my hair. With each new handful that falls out, I get a helpless feeling. A growing worry as I see my part widening and my ponytail shrinking. Sound familiar?

Sometimes at night, I will dream that all of my hair has fallen out overnight and I wake up drenched in sweat. Frantically looking around my pillow for the mountain of hair I have dreamed of losing and sighing with relief when I realize it was just a dream. Or was it?!

The Fall-Out

While there are many causes of thinning hair, I have eight known health conditions that have played a major role in causing my routine hair loss. Thyroid Disorder, Raynaud’s, Fibromyalgia, Chronic Fatigue Syndrome/ME, Gastro Esophageal Reflux Disease, a generous dose of IBS (irritable bowel syndrome), an MTHFR gene mutation and of course Lyme Disease are all culprits of stress in my life. Thus, they are also responsible for the handfuls of hair that I keep finding all over my house.

Hair in my bed, hair on my bathrobe, hair all over the bathroom floor, hair all over the house and yes, even hair all over my car. It is disgusting. You get the picture! The drain in my shower is constantly clogged with massive amounts of hair that come out each and every time I shampoo it! With each handful that goes down the drain, my heart sinks.

It is maddening to constantly feel the little tickles of fine strands of hair that have fallen onto my shoulders, arms and hands. Constantly trying to find that loose strand that eludes my vision. It is there, I can feel it. Trying to find it on the other hand is frustrating. Until it lands in somebody’s dinner…


The Embarrassment

am so paranoid about my hair falling out, that when I cook I have to make sure it is put up in a  hair clip. I religiously do a quick check in the mirror of my clothing before I begin preparing any food. Otherwise, as gross as it sounds, it will end up in the meal no matter how diligent or careful I am during cooking. 

Nothing is more embarrassing than spending an hour preparing food and sitting down to dinner and the first bite someone takes has your hair in it! Appetites are immediately ruined and all of the spoons/energy used to prepare the meal is wasted. It is disheartening and extremely embarrassing to say the least. I speak from volumes of experience (no pun intended.) Believe me!

I get so frustrated from the hair that comes out in my hand every time I run my fingers through it or brush it over my shoulder. The slightest movement brings at least 10 new strands that have fallen to the floor. It is embarrassing and worrisome.

Near my temples my hair is so thin, you can see large patches of scalp. Some days I am convinced I am literally going bald. Channel a picture of a toothless granny with no hair. Yes, I have nightmares about this.


Stress, Vitamin Deficiencies, Medications and Thinning Hair, the Connection

I have been searching for the cause of my thinning hair for the past eighteen years. I came across some information recently that I believe holds at least part of the clues to the mystery of my thinning hair. In a word Stress! If you live with a chronic illness, you live with stress on a daily basis.

In the case of many chronic illnesses a very common cause of hair loss is a condition called “Telogen Effluvium.” When a normal cycle of the natural growing and falling out of the hair follicles is shocked out of their usual phase due to a severe sickness or flare up of a medical condition, hair loss is the result. Telogen Effluvium is reversible, although it can take up to 9 months to see results. Say What? Yes, all these Lyme flares have literally caused my hair to fall out!

Deficiencies of many vitamins and minerals also play a vital part in the loss of hair. I take many vitamin and mineral supplements as a part of my Lyme Disease protocol. Vitamin C, B vitamins such as Biotin and Niacin and Iron are some of the most important hair supplements that I incorporate into my daily routine.

Enter Betaine For Hair Loss!

What is that?

In short, Betaine HCL (Hydrochloride) is an amino acid!

Opposed to popular belief, many people lack the stomach acid they need! I suffer from GERD (Gastro Esophageal Reflux Disease.) I was recently told  by my integrative health doctor to quite taking my Proton Pump Inhibitor (the medicine traditionally used to treat my GERD.) Proton Pump Inhibitors block the production of acid in the stomach. Acid that is thought to cause ulcers among other things. Truth! We need this acid.

Once a person has begun a (PPI) it is hard to wean your way off of it. The body needs gastric acid. Without it our bodies cannot absorb the vitamins, minerals and proteins needed to support a healthy life.

Lack of these important vitamins, minerals and proteins leads to an inability to form collagen, loss of hair and muscle atrophy. Did you read that?! Yes, I said loss of hair! Bottom line, gastric acid is great for our hair growth!

Hello! I’ve been taking the wrong thing!

Since taking Betaine HCL my gastro reflux problems have lessened. It has helped! While I cannot really tell a difference in my hair growth yet, I have hopes that in time I will see it increase. I think it would be insanely funny, if I see my hair begin to grow because I have quite taking my PPI and started taking Betaine! What can I say, I have a warped sense of humor.


Know The Side Effects of Your Prescription Medications.

Prescription medications have many, many side effects. One of those side effects is hair loss. Be aware of which medicines can cause this and ask your doctor for suggestions on how to counteract the loss.

Heredity, it can’t be helped. But, it does hold some answers.

Many types of hair loss are hereditary. My own mother suffers from thinning hair. She has tried many remedies herself to no avail. Thinning hair runs in families. Mine hit the jackpot, or in my opinion the complete opposite. Hair loss is in our genes. We cannot escape it, but, we can try our best to slow it down a bit.


What I am doing to help slow down the loss and possibly even reverse it.

  • I am very careful about the shampoos that I use on my hair. One of my favorite shampoos is Desert Essence Coconut Shampoo you can find it here Desert Essence. The light coconut smell reminds me of the beach. It adds moisture which my hair needs because it is very dry and brittle. I love that the Desert Essence brand is responsibly produced. They are also certified by the Leaping Bunny producing cruelty free products! There are many varieties of Desert Essence hair care products for all hair types. This is not a sponsored post. Just a product I am passionate about!


  • I also take a Methyl B-12 supplement made by Neuro Biologix due to my MTHFR gene mutation. This enhances gastrointestinal absorption due to methylation deficiency. Which aids in hair growth! Bonus! It helps with my memory. Which can use all the help it can get!
  • Biotin is another important supplement that I rely on to boost my hair and nail health.
  • Washing my hair only a few times a week helps to preserve the natural oils.
  • Betaine HCL is also a daily staple in my supplement regime.
  • I am a lover of hats. When in doubt, a hat can always come to the rescue of a bad hair day!


  • Above all I try to adopt a positive attitude. I am thankful for the hair that I do have. Thin as it may be, it is still mine! At least for now, said with tongue in cheek.
  • If I do lose it all, at least I’m still here. I am after all much more than just my hair. I’m not saying it is easy to accept but, I am me! For the record…that is enough! 

Are you chronically ill and suffer from hair loss? I would love to hear your story and your own coping tips? Please feel free to share the products and practices that have been a help to you!

You can read more about my journey with Lyme Disease here: A Day in My Life With Lyme Disease

Until next time, be well and love the you in the mirror.

Follow me on Facebook at Lilac and Lyme

Mirror Image



10 Responses to How To Cope With Hair Loss In Chronic Illness

  1. Aundrea says:

    My mom has lupus and has battled the same fight. She has surrendered and cut off her hair. It works for her but the struggle over the years has been rough.

    • ValerieB says:

      Dear Aundrea,
      I am so sorry your mom has lupus. I have several friends who also suffer with that. They actually thought I had it for a while and then figured out it was Lyme disease. I have seriously considered chopping my hair off. I think it would make my life so much easier. Thank you so much for your kind comment. Hugs to you and your mom.

  2. I have Hypothyroidism and I know this struggle all too well. Im now in my late twenties and stress out to see globs of hair every time I wash, brush or do anything with it. I chose to work in an industry where looks are pretty important so I’m also searching for ways to kind of delay further loss.

    • ValerieB says:

      Dear Kelli-Anne,
      I can identify! I have Hashimoto’s Thyroid Disease and it certainly doesn’t help matters. I hope you find something that works for you. Thank you so much for your kind comment. Blessings, Valerie

  3. Layla says:

    Hi Valerie,
    Thanks for sharing! I too struggled with hair loss due to interstitial cystitis and hashimotos. It stopped when I stopped shampoo and went ‘no-poo’ and I’ve even seen quite a bit of new hair growth. I’ve also been working on digestion (though I’ve never done well on Betaine) and made sure I eat a nutrient dense diet. However, it’s never gone back to where it was (and it was thin to start with) and has ruined my self-esteem to the point where I could see nothing else than my hair and how all other women had such great hair!
    I finally decided to get hair extensions and they have given me some confidence back!

    • ValerieB says:

      Dear Layla,
      Thank you for reading! I have actually thought about giving up on shampoo too! That is fantastic that you have had success with it. Betaine is something that I have to stop and start, it doesn’t seem to agree with me either. Hair extensions is also something I have considered, but they are so expensive. I’m glad you found a solution that worked for you. Blessings, Valerie

  4. Alma White says:

    A lot of factor affect our hair. Now I can see that. Thanks for sharing.

  5. Alexis Mundy says:

    I have RA and my hair loss is sometimes hard to deal with. Luckily I have thick hair, but I hate seeing hair in the shower, the sink and on my clothes. My medication does not help as does the extra stress I have in my life. I know though that I am not alone!

  6. Stormy says:

    Credit is topic to application and status.
    Stormy recently posted…StormyMy Profile

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