I’m struggling with hair loss, my once thick hair has become very thin. I have explored this subject and would like to share what I know… we are in this together but hair loss can feel very lonely and seriously affect our self-esteem it can also feel like another ‘thing’ to deal with along with all the other symptoms.
Is Lupus hair loss reversible? The short answer is in some cases. It depends on what sort of Lupus you have and if scar tissue has built up. If your hair loss is due to an S.L.E Lupus flare-up it will likely grow back but if it is due to Discoid Lupus and it has scarred the hair follicle it won’t.
So how can we deal with hair loss, reverse it if possible, and deal with it if not? In this article, we will look at ways to try to encourage hair growth and good hair health. Also which medications might be causing your hair loss, and while you try to reverse it how to live with hair loss in the meantime!
Why does lupus cause hair loss?
Hair loss can occur because of the inflammation caused by the disease. This type of hair loss can affect scalp hair and body hair but is usually reversible once the inflammation is brought under control. This type of inflammation and hair loss is common with SLE lupus.
DSLE Lupus causes legions on the body and scalp, these legions can cause scarring. If this happens on your scalp it is unlikely your hair will grow back as the hair follicle is scarred.
Medications can cause hair loss such as antimalarials, steroids, methotrexate, leflunomide, and cyclophosphamide, and of course if these medicines are stopped hair should re-grow but consult with your doctor as stopping them could cause a spike in your disease and bring its own problems!
How can I give my hair the best chance?
Limiting stress isn’t easy but well worth the effort and will help in the control of your disease as a whole. Taking time each day to relax and unwind, perhaps with meditation, yoga, a hobby, or reading, will help you feel calmer and rested. Self-care is extremely important for everyone especially those with a chronic condition such as lupus.
Staying away from drama and toxic situations will also be a big help and if you do have to deal with any difficult situations asking for support and sharing the burden can help.
Eat a healthy diet.
I am a big believer that what we put into our bodies is important in controlling and helping Lupus. It is an act of self-care that shouldn’t be overlooked. I am a big eater and I love breads, cakes, puddings, chips … the list is endless! I have begun eating a high raw vegan diet and hyper nourishing my body. Check out this article for more info. Recently I got stressed (emotional eater and COVID19 had hit!) and I basically ate whatever I wanted, still vegan but lots of wheat, sugar, carbs… you get the picture… after a few weeks my Lupus kicked back and I was in agony … I went back to my hyper nourishing and after a couple of weeks, my symptoms calmed down… I do believe I could stray from it for a treat or an occasion but not over a sustained period of time.
Try to maintain good sleeping habits.
This is not easy as insomnia is a common problem for us Lupies but it is very important. I have to practice good sleep hygiene, limit screen time in the evenings, and have a calming period before bed this is usually when I take off my make up and give my skin some love! I find this really relaxing moisturising and pampering myself! Also if I am in pain I take pain medication just before I start my bedtime wind down so that it’s starting to work when I lie down. I also found that if my bedroom was cosy and well organised I find it much easier to switch off… I am naturally an extremely messy person so this was a challenge but it has really helped. I also had to ask my husband to stop using bedtime as a time to talk about money, plans, if the dog needed his flea treatment etc… I’d lie awake with my brain firmly switched on he would be fast asleep!!!
Whatever works for you, keep trying different things until you find a way to have a consistently good sleep … it is vital!
Work with your doctor to gain control over your disease.
This is an important step, letting your doctor know how things are going, mention your hair loss, and see what they suggest. Getting your disease under control will help reverse the hair loss if its not due to scarring.
Practice good hair hygiene and limit chemicals and heat styling.
Be kind to your hair, keep the use of harsh chemicals to a minimum, and use gentle products. Don’t over brush your hair or pull it into tight braids. Try to limit heat styling and ask your hairdressers advice on the best style to make the most of what you do have.
Coping with hair loss.
It’s natural to feel upset, uncomfortable, and generally down about hair loss. It can feel like a kick in the teeth after everything else you have to deal with. Other people may just not get it! They just might not understand the way you feel about it but that doesn’t mean your feelings are invalid! Properly grieve and deal with those feelings then work out how you are going to overcome this issue even if you can’t stop it happening.
When my hair first started thinning I was devastated I felt like not only do I feel horrible I look horrible! Truth be told I styled it well and others weren’t even noticing. In the end, my hairdresser cut it into a bob to stop the length weighing it down and it looked nice, my flare was over and it started to grow back. Then a couple of years later I had another big flare up and it got thin again and I got fed up with trying to make it look thicker with products and hairpieces so I got it cut into a really short awesome hairstyle… I loved it and its easier to manage, then lockdown, and I couldn’t get to the hairdresser the stress and poor diet got to me and I flared up again, my hair was thinning and I just decided to shave it all off and try to nourish it and grow it back hopefully thicker. And that’s where I’m at embracing my incredibly short hair, focussing on the good parts… it’s super easy, it’s cool and Kool! I pay more attention to my makeup and that helps me to feel good about my appearance.
I gave time to be sad about my hair loss and talked about it and its impact on me, and then I chose to move on, I’m not sure I will grow it out or not if each time I get some length I’m just going to have to start again? I think I will wait and see if I get really good control over my Lupus. Also, I have discovered a great fun brilliant new accessory… WIGS!!!
Wigs and hairpieces.
I am known for enjoying changing my hair colour and style even when it was really long I was always doing stuff to it! So I got a cheap fun shoulder-length wig that was blue and pink! It’s very ‘me’ but not an everyday wig! So having discovered I enjoyed wearing a wig I decided to spend a bit more and got a lovely wig cut into a long bob it had dark roots and ash-blonde lengths. I love it! I feel at home in it, it does resemble a style I have had in the past. My next wig is going to be super long and luscious! Wigs are wonderful!
Hairpieces can add depth to your hair if you still have some length but not so much volume, you can get ponytail lengths and clip ons or even have extensions put in but be careful they don’t make your hair loss worse.
Scarves and hats.
I don’t always wear a wig, its summer and very warm so I wear a hat, I have sunhats and a baseball cap, I also wear scarves and even a wide Alice band, it just softens my look and other times I proudly wear nothing on my head and I feel super brave and like an awesome lupus warrior!
This piece is anecdotal and shouldn’t replace getting advice from your doctor. Here is some research I read, when I was looking for answers.
Be gentle with yourselves, you are fighting a brave fight and it’s not always easy! Be kind to others they just don’t always understand! Seek out support groups, online or person to person, and get your tribe together to support you and you them.
Lots of love x