All my spoons are in all the right places, if you know what I'm talkin' about...
Today, I had the pleasure of asking some questions directly to a 20 year old girl living with Alopecia Universalis. Alopecia, very simply, is an autoimmune disorder that causes full-body hair loss. Many Chronic Illnesses (included Lupus) come with some kind of Alopecia as a symptom, but that is very different from AU itself. This girl was extremely confident and high-spirited, and I thought you guys would appreciate her answers a lot.
You mentioned that you’re married. Many people with Chronic Illnesses report that dating is tougher for them than most. Whether it be from the judgement from others or their own self-esteem, putting themselves “out there” becomes more of a challenge. Have you experienced this? Is your spouse supportive/knowledgeable about AU?
—It was definitely tough to put myself out there. I was hesitant to even try to date and just assumed that everyone wanted the long haired beach body girl. I actually gained a lot of confidence before I really started dating and I guess that’s what snagged my husband :) He’s supportive, finds it sexy. He actually introduced me to reddit so he’s kind of more curious than anything. So he’ll go “It’s growing back! That’s so cool. I wonder what’s causing to to grow back. ten minutes of maybe this maybe that”
From what I’ve experienced, many people with Chronic Illnesses/Autoimmune Disorders like to reach out and become a part of the illnesses “community”, making friends with and talking to lots of people who go through the same/similar things that they do. Have you done this? If yes, do you feel like it is a positive support? If no, where do you find your best support system?
—I haven’t really reached out to anyone with the same condition. I guess because I my friends never made me feel out of place (if I would would wear a wig with a new outfit they’d compliment the outfit and not the “new look”) My main support is probably my husband right now. As an adult I don’t really feel the need for a “support system” not for my Alopecia anyways. I do have friends that I talk to when I’m upset though.
I think you mentioned that you are otherwise healthy, and have no other AI symptoms. Do you take any precautions to keep that up (watching your diet, vitamin/mineral supplements, exercise etc) or is being healthy fairly easy for you?
—Honestly… I am a fast food junkie. I have a fast metabolism and weigh about 91lbs right now. I would say I am probably one of the worst examples for eating healthy. Although I have cut back on fast food and have started cooking my own meals :)
If you were talking to a young girl recently diagnosed with AU, say around 13/14 years old, what advice would you give to her to help her deal with the hardships of hair loss, emotionally and socially?
—I know it sounds cliche but I would say: Fake it till you make it. Smile put your head up, shoulders back, go get ‘em. Honestly though if a wig makes you feel pretty, wear it, if it just itches and is annoying, lose it! Feel comfortable in what you’re wearing no matter what you’re wearing (I for one wore basketball shoes with neon orange laces, baggy shorts, and a baggy t-shirt, I was super comfortable). Back to support: My boss was the best support system I could ask for. She gave me the confidence I needed to just be me. Never treated me like I had a disease, just always made me stand up straight and make eye contact.
I honestly loved so much of what this girl had to say. For many of us, her illness is quite a bit different. A lot of the people I talk to on here have “invisible illnesses”, where our physical symptoms may be severe, but on the outside we look perfectly fine. Her condition is mainly affecting her appearance, which manifests problems in a very different way. Mostly, what I was interested in was the self-esteem aspects of the condition.
And I was impressed. I know that when I am losing small patches of hair, my self-esteem drops tremendously. But she keeps such a great attitude. I find that incredibly admirable. But mostly, I loved the addendum she left at the end:
Also: crying is definitely ok, losing your hair is losing a part of you, it’s ok to cry.
I think, no matter what the illness is, we can all take that to heart.
So I’ve been on Tumblr just about a month and a half now, and I’ve posted…a lot. So I was thinking, maybe once a month I’ll post a highlight. Sift through some of the sillier posts and compile all the major things I talked about the last 30 days. So this will be my first one of those.
FIRST I wanna remind you all to KEEP SENDING ME STORIES! I have some great ones in my ASK and reply boxes already, but I want this to be as collaborative as possible!
1. Spoon Theory Garbage: Why I think we need a more positive story in our community, and why I don’t think Spoon Theory is healthy.
2. Depression and Anxiety: The importance of paying attention to your feelings and taking care of your mental health.
3. Benlysta, the new Lupus drug: A good link about the drug, and my thoughts on the positivity of its development.
4. Lady Gaga does NOT have Lupus: The media used her story to spread misconceptions and sometimes blatant lies about what Lupus is.
8. A tool to detect UV intensity, thanks to Thinkgeek.com
9. Dating and Lupus: My advice to anyone with Chronic Illness regarding dating and life!
10. STATISTICS: A compilation of all the scattered Lupus-related statistics out there, neatly packaged so you can know your stuff and spread awareness!
11. What causes Lupus?: All the controversies explained from my point of view.
13: LGBT, domestic violence, rape, chronic illness, sexism, mental illness, racism: Holy Hell people, we need to stick together
I posted a little while back saying that I was having a “bad day”. It sort of turned into a bad couple of days. One symptom of Lupus I notoriously experience is hair loss. I’m extraordinarily lucky because I’ve got a seriously thick head of hair on me, so the only time I’ve ever had *noticeable* bald spots was when I was younger and newly developed Lupus. But if, during a flare, you were to part my hair, you’d see the patches missing.
But good news for me, it seems my symptoms have mellowed, which is great. And in addition to less severe arthritis, milder anxiety, and less digestive pain, I haven’t seen any hair on my pillow or in my clothes (not more than a few strands) in the last two days. woohoo!
But I also want to write about Alopecia because it’s one of the more visual symptoms of Lupus, and can be one of the more emotionally distressing especially in younger girls.
We all lose a bit of hair every day, usually 50-100 strands of hair even. That might seem/look like a lot, but it’s totally normal and essential to healthy hair growth. The kind of hair loss I’m talking about it excessive, pulling out clumps of hair, and is related to your immune system attacking the skin on your scalp. That is called Alopecia Areata. The good thing about this type of hair loss, in comparison to Androgenetic Alopecia, is that once the immune system has suppressed itself, the hair will start to grow back.
Alopecia can manifest in Lupus patients either as a symptom, or as a side effect of Prednisone or other immunosuppresives. Ah, the fun in heavy drugs.