Alopecia World
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Non Alopecian Thoughts
Sorry about the scattered nature of this (it's late and I'm not really sure why I'm still awake). I've had some thoughts over the past few days regarding supporting my sister with alopecia.
At times my sister is sure she is going to go completely bald. I say to her that even though it definitely could happen - she could go bald - there is also the chance that she will not. If she does, we'll get her a great wig - if that's what she wants. It's all about her. She doesn't have to change herself for anyone.
From what I have seen, part of torture of having alopecia is that you simply don't know what's going to happen. It is completely unpredictable. However, I have always believed in the power of positive thinking. I don't want this to be misconstrued as denial on my part, or a denial of the condition, or that I am denying her feelings about her condition.
I just do what I can to help out. Sometimes I really don't know what to do. I try to do small things. She wanted to see a specialist, which she couldn't afford as a full time student, so I paid for that and her cortisone injections. I have bought her nioxin, and hair extensions which she is really enjoying. I have also tried to help in ways not related to her hair. We went and had a nice massage a few weeks back - which was also a good way for me to release some stress! This is just something you have to play by ear. You have to help a little more on the bad days and celebrate harder on the good days.
I try to learn as much as I can. I read a lot and am very interested.
It is hard for the non alopecians too, I guess. It is hard to watch your loved ones go through difficult times. Many of the feelings I have about her alopecia are the same as those I had after our father had a stroke earlier this year. Sometimes you can't help, and you have to accept that as well. You just have to take it day by day.
At times my sister is sure she is going to go completely bald. I say to her that even though it definitely could happen - she could go bald - there is also the chance that she will not. If she does, we'll get her a great wig - if that's what she wants. It's all about her. She doesn't have to change herself for anyone.
From what I have seen, part of torture of having alopecia is that you simply don't know what's going to happen. It is completely unpredictable. However, I have always believed in the power of positive thinking. I don't want this to be misconstrued as denial on my part, or a denial of the condition, or that I am denying her feelings about her condition.
I just do what I can to help out. Sometimes I really don't know what to do. I try to do small things. She wanted to see a specialist, which she couldn't afford as a full time student, so I paid for that and her cortisone injections. I have bought her nioxin, and hair extensions which she is really enjoying. I have also tried to help in ways not related to her hair. We went and had a nice massage a few weeks back - which was also a good way for me to release some stress! This is just something you have to play by ear. You have to help a little more on the bad days and celebrate harder on the good days.
I try to learn as much as I can. I read a lot and am very interested.
It is hard for the non alopecians too, I guess. It is hard to watch your loved ones go through difficult times. Many of the feelings I have about her alopecia are the same as those I had after our father had a stroke earlier this year. Sometimes you can't help, and you have to accept that as well. You just have to take it day by day.
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Comment by Tony on September 11, 2008 at 12:05pm
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Alopecia was new for all of us at one time or another. I'd dare say that none of us were, or are, sure what would happen or when. To this day, there are good days and the not so good. Please know that your support is important even if at times you feel that you don't say or do the right thing. Somedays, there nothing you say or do will be right in our eyes. Know that it's not personal. We need you more at those times than ever. Even if we don't say it, knowing that someone is there for us, standing right there beside us, is more important than you might realize...
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Comment by Sharon on September 11, 2008 at 2:11pm
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Hi there. I agree on this being a wonderful blog. When someone you love is affected by any illness you are there for the ride in good and bad. All you want to do is to make things better for them and support them, this can be really emotional for everyone. It sounds like you are doing a fantastic job, being supportive where you can. Our family unit has become so much closer since Nicole developed alopecia nearly 4 years ago. Our son is also very supportive of his sister in a quiet way (he is the only one allowed to pick on her lol), but in saying that is has changed the dynamics of our family, we have been so focused on making sure that everything is ok with Nicole, we worry about the impact on how this affects our son, so we make sure that he gets alot of one on one quality time (usually fishing lol) with Dad.
Anyway take care and keep being the awesome support person that you are being, your sister can't ask for anymore than that, she is very lucky.
Sharon
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Comment by kastababy on September 11, 2008 at 9:22pm
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Thank GOD every day for brothers and sisters like you who love and protect you alopecian siblings. I don't know what I would do without mine! :)
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Comment by Jols on September 12, 2008 at 7:49am
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hahaha
everyone is gorgeous ... jols is my SISTER HAHAH .... i love u joli!
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Comment by rj, Co-founder on September 15, 2008 at 1:34am
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As a non-alopecian supporting my alopecic and adorable fiancee, I commend you for your sensitivity and compassion and assure you that your noble and joyful labor of love will never be in vain. :-)
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