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Tired of everyone telling me it will all grow back
Ok, so I feel a bit rotten saying this, but I'm tired of people telling me "So and so had alopecia and their hair all grew back and never came back again." I know people mean well, but we all know that it doesn't always work out that way.
I've been dealing with this and trying to accept it for the last 2 months. I also had eczema all my life and know that it is a condition that goes in and out of remission. I fully expect the same with the alopecia and I'm fairly sure I will be really shocked and devastated each time it happens. Even if it does grow back, I bet I will never stop checking for spots.
The other thing is wig shopping. Am I really selfish for not wanting anyone to come with me? I just feel like I will be pressured to be ok with it when in fact I know that it will be emotional. I don't want people to tell me not to have feelings about this stupid condition.
I haven't actually said anything to anyone, and I know they are just trying to be supportive. Most days I am ok, but sometimes I just feel angry.
I think my reaction has more to do with being angry about this stupid condition.
Replies to This Discussion
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Permalink Reply by Janet on
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I hear the same things as well. I was born with excema, I know how that goes too. I went wig shopping by myself, I knew what I wanted, I didn't need anyone telling me what I wanted for 'hair'. And it was quite emotional, I was lucky because the shop owner has universal alopecia, she understood. Some days I go through not thinking about it and then some people say stupid things like 'wear a cap when we go out in public' or 'can't you comb hair over your bald spots'. Most of the time I go places alone so nobody has to be embarrassed by the lack of my hair. I haven't worn my wig yet. I don't know when I'm going to shave my head yet either.
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Permalink Reply by Debbi Fuller on
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People are trying to make you feel "better" but agree that it is not exactly the right way to go about it. The longer you've had it and the worse it is, the less likely it will grow back - but you know this. Just try to accept that they mean well and give them the benefit of the doubt. As for wig shopping, if you have someone you can REALLY trust to tell you the TRUTH, then bring them. If not, then go by yourself. Never feel pressure to buy one just because you feel desperate or because the salesperson or someone else tells you that you look great in it. If YOU don't like it and feel comfortable in it then it will be a waste of money. Your opinion is the only one that really matters. Try not to be too angry about the condition. Yes, it seems unfair and it is upsetting, but it can also teach you some really great lessons about life. Like what's REALLY important, who your friends really are, what hardships others have to deal with and who you really are as a person. The younger you are, the harder it seems it is to answer these questions but even some people with some years on them have trouble with this. it's natural to feel sad and angry but over time you have to reach a place where you accept it, even welcome it as a part of life. I know, that sounds really Pollyanna, but it is often true. I would not EVER want my hair back. Seriously. My life is better for having had alopecia. It's a choice. Try to make the right one.
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Also I have to say, what an outpouring of support here! I just joined myself recently and haven't really posted much, but to see so many people come out and talk to Rose about how they feel is wonderful. Good luck, Rose! I'm still in the "I think my hair will grow back a third time" phase now and I'm good with that hope. I think we all have bad days where we're angry about it. I am desperately worried about my children, at 8 and 5. So far they are fine. I wouldn't wish alopecia on anyone and it's not one but a series of hard roads I've had to walk. I guess strength of character is a good outcome ;D Hang in there, Rose, we're all there with you.
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Permalink Reply by Cristy D on
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Does anyone have effective responses to the following without sounding annoyed or angry? "I know Suzie's hair grew back just fine". "Oh you can't really tell that much". "It's because of stress".
Maybe more in line of coaching people on what IS helpful to say?
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Permalink Reply by CBrown on
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"Suzie was pretty lucky; unfortunately, this disease is difficult to predict, so she may or may not be able to keep her hair in the future because the disease may cause it to fall out again."
"If you can't tell that much, that means that all of my hard work to cover the missing spots is working pretty well. It does take a lot of work and I know it's not perfect, and it's a source of stress for me when people notice the problem areas."
"The hair loss is not caused by stress. Actually, it's stressful to lose the hair."
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Permalink Reply by Solange De Santis on
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I like your responses, CBrown!
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These are great responses and what I was looking for. I'll give them a try. Thank you.
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Permalink Reply by Maura on
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It's not pleasant, it's not fair, and when people say, "oh well, it's just hair", they wouldn't be saying this if it was THEIR hair! The comment "it will grow back" is not based on fact. It is just a placating comment because they feel like they have to say something to be supportive.
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Permalink Reply by Sara and William on
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The stress comment is my personal hot button too. I don't have alopecia, my teenage son does. Started when he was 6, it comes and goes, sometimes it's just spots, right now he's totalis (or very nearly). I hate ALL Stress comments. No, I don't have a home that's so stressful that I made my kid's hair fall out!!!!!! Talk about feeling judged!
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Permalink Reply by Amy on
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Found out I had alopecia 6 months ago. Did a couple of things and never saw a doctor for medications or injections as my son (a GP), told me that that should be the last resort. So I was prepared for a full hair loss and ready to go shopping a wig.
In the meantime I went about changing my diet to be healthier, cutting back on sugar and flour, and incorporating three times a week smoothie comprising of coconut water, aloe vera, avocado, bananas, turmeric, lemon, chia seeds and cilantro. I started also taking a supplement that is rich in resveratrol two months ago. This week I can feel thin hair growing on the bald spots which otherwise were really smooth. There was even hair growing on my receding hairline. So I hope the hair will continue to grow.
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Permalink Reply by Cissie55 on
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Hi Rose,
My name is Cindy and I've been coping with Alopecia for almost four years. I'm 60 years old and I lost my hair after the death of one of my sisters. I also have had eczema my whole life and thyroid issues. I feel very much like you do. I still have a hard time accepting it. My hair came back once and I was ecstatic only to get it to the point of a cute short style and then lost it again. I knew in my heart that when it came out that time it would never return. I was right! Then went the lashes and brows.My advice to you is get some cosmetic tatooing done if you can. I had eyeliner & eyebrows done and I have several very pretty wigs. It's a terrible and unfair disease and I hate it, but have to cope. My family is supportive and loving. It's just me?? You don't have to accept it. Everyone says bald is beautiful......well, I don't agree! & I don't have to. It's not so do the best you can each day. God Bless
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Good for you, Cissie55, for expressing your honest opinions and feelings. I, too, had my eyebrows tattooed and felt somewhat better about my appearance. I had them touched up once because the color gradually fades. Eyeliner, I'm a little squeamish about. To those who say they wouldn't wish their hair back and alopecia is a good thing that happened to them - well, mazel tov, but I can't say the same. I'd like my hair back in a New York minute and alopecia has not been a positive force in my life. (AU for 18 years with no regrowth at all.) Best regards!
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