Mar 4, 2009

Feeling Good About Yourself Despite Lymphedema

I have been remiss in updating this blog, but I will try to remedy that. I received a couple of emails recently asking about or referencing self-esteem and coping with lymphedema. It reminded me that the struggles I have are shared by other people and the best thing we can do is support each other and help each of us learn to take the best care of our bodies that we can, but most of all, be kind to ourselves!
Here is an excerpt of an email I received recently:

. . . In denial for so long, I hid myself, covered my self, lied to myself, ignored the truth, never confided in no one, secretly tried to get help, refused to get help, disappeared in the spring and summer time (the time for shorts, skirts, and sandals), stayed away from church (dressing up with heels), sucked in relationships (insecure and hid my feet) till now where I am tired of tormenting myself and being prisoner to my own jail of depression.

I have come to the conclusion I must be who I am. I have hid myself for so long, how do I come out of the open without all of the confusion and questions that I know will take place from others? Most of all, how can I reclaim my femininity? How can I rebuild my self-esteem? How do I dress and be sexy too?

This is part of my response, but I want to hear from others about this issue.

I can surely relate to what you've written. For most of my life I didn't know I had lymphedema. I thought I just had "fat legs." I always felt like I wasn't as pretty as other girls. I thought if I exercised more I could improve them. It wasn't until I was a grown woman that a doctor finally told me I had what he called, "congenital edema." It was a relief to know that it wasn't something that was my fault, but he also told me there was nothing I could do about it. I believed what he said and lived for about 15 years with my legs slowly becoming worse and worse, but not doing anything because I didn't think there was anything that could be done.

It wasn't until my legs became extremely swollen that I finally realized that there must be SOMEONE who could help me. I searched online and I found a website written by Amy Williams. When I saw the photos of her legs I almost cried with relief to know that there were other people out there and they were having success treating their lymphedema. It opened up a new world of possibilities for me.

As far as accepting the fact that I will never have "pretty" legs. Well that's just hard. Somedays I'm stronger and I can say that it's okay. I'm still a great person, and I'm beautiful despite the fact that I look "different" than what our society's standards say beauty is. I think that we can tell ourselves how shallow it is to be concerned with outward appearances, but at times it's harder for our emotions to line up with what our head might know.

I am fortunate in that I have a husband and daughter that are very supportive of me and try to help me feel okay about myself when I feel self-conscious or depressed about my appearance. Right now I'm still wearing the bandage wrappings. I know that when I'm out in public, people do look and sometimes I joke with my daughter about my "fashion statement." I really hate not feeling like I can "dress up." I wear a dress to church, but I usually try to find long skirts that will cover my bandages and clogs that I can just slip my feet into. It's not my ideal, but for now, it's the best I can do.

Hopefully, I will eventually have my leg size reduced enough to wear compression hose. I look forward to that because I think that even though they may not look completely "beautiful" they will allow me to feel and dress more "normally."

One thing that helps me keep going when I feel down is thinking about how bad my legs were when I wasn't doing any treatment. My legs had gotten so swollen that they were literally bursting. I had wounds that just seeped fluid all day long - it was disgusting. I would also get infections in them and they would hurt. It was soooo hard to move - to walk- to lift my legs up to put my pants on, or pull them up onto the bed at night. Now, even with the bandages I can walk so much better! My daughter
just mentioned the other day that she noticed I can walk faster than I used to. When I think back to all that, I don't want to stop wearing the bandages. I feel strong enough to walk around the grocery store and think, "Hey, stare all you want because my other choice is to be unhealthy and miserable. I'm not going to let some puzzled looks or rude stares stop me from doing what I have to do to feel better."

Being in this situation has blessed me with humility and it's also given me a bit of wisdom. I think I used to be more judgmental about people - of course I didn't think so at the time - but now I have a real understanding about not jumping to conclusions about people because I don't know what's going on behind the scenes. I think lymphedema has made me a more compassionate and better person. I would liked to have learned these lessons without feeling self conscious in a dress or a bathing suit, but like you said, "we have to work with what we have."

I am honored that you wrote to me, I don't know if anything I've said will help you except maybe to let you know that you aren't alone. I hope you can find some good people to surround yourself with - people that will support you and encourage you when you need it. I think with my husband, I'm the one who thinks about it and he doesn't. I worry about it for nothing!

When you find a good physical therapist who can teach you how to wrap your legs to reduce the swelling, or if you are able to get fitted for compression hose, you will start to feel that you have some control over your body and that will give you some confidence and acceptance. One thing I've realized is how much time I've spent hating my body - what good did that do me? I let myself miss out on things because I thought I didn't "look" right! What a bunch of garbage! I want to live life and not hide myself away. I wouldn't think that a person in a wheelchair should stay at home, I wouldn't think that a person with a deformity shouldn't go swimming because they didn't look "pretty" in a bathing suit, so why to I think those things about myself? I'm probably harder on myself than anyone else is! Sure, there are still times when I'm tired and I just don't want to deal with it - but that's normal - we can't be well-adjusted superpeople all the time! We need to cut ourselves some slack and be kinder to ourselves!

I also think it's practice. At first when I went out in public with my legs bandaged I was so insecure. I felt like EVERYONE was staring at me. Then after I'd been doing it awhile, I was able to relax a bit and realize that most people are concerned with their own lives. They don't care what I'm doing or wearing. They might shoot me a passing glance just like they look at anyone they pass. I've never had anyone say anything mean (to my face at least)! And if people are going to be jerks, well, we can't control that. There will always be jerks, no matter how beautiful or "perfect" you are!

The most important thing is to find lymphedema therapists in your area. Oftentimes there are also lymphedema support groups where you can meet people who share your difficulties and can support and encourage you. If you need further help finding a therapist, I recommend the Mayo Clinc. That is where I finally went to get treatment and they were SO helpful! I don't live near there, so we did have to travel and it was an expense, but it was worth it. If you can't do that, I know there will be Lymphedema Therapists somewhere near you. Getting treatment is so important. I wish I had gotten treatment 15 years ago - the sooner the better!
I hope I don't make it sound easy because it's not, and I am not immune to being reduced to tears when I try on a piece of clothes, or I just get tired of having to wear bandages 24-7. It's not that we "get used to it" we just have to "keep on keeping on!" So, do you have any words of wisdom? Any encouraging advice or any practical tips! We all need to hear them! Please leave a comment and share with the rest of us!