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I used to be invisible

caprese
  • By caprese
  • Posted June 15, 2009 at 5:10 am · 15 replies
  • Shared with the public
0 Recommendations

but now there's a hole in my cloak of invisibility.

I used to walk around in crowds of people totally unseen, the usual invisible little old lady. But now people see my left arm, or rather, they see my compression sleeve and glove walking around. Lymphedema has made me into a walking sleeve, especially now that more of it shows with warmer weather. I see their eyes - they don't look at me, but at my arm.

Certainly, I'm developing a better understanding of what it's like to be different, and I'm learning to cope. How do others who are stared at - cope? Surely, I was better off invisible.

Explore topics in this journal entry and replies:

Cancer GERD Fractures Osteoporosis Lymphedema Breast cancer

15 replies

Loods

Hi Caprese,

I have been in a wheelchair since I was 5 years old, so have always been stared at. It doesn't bother me in the least, people are just curious, it's human nature.

I usually just smile and mostly I will get a smile back. People aren't intentionally rude even if it seems it sometimes.

It does annoy me though when people make assumptions. I overheard a couple of older women look at me and say "how sad, I'd hate to be like that" well I have a great life, I have a wonderful husband and loving family so there is nothing to be sad about!

Hold your head up, be confident and smile! We have just as much right to walk/wheel down the street as anyone else.

Kind regards

Loods

Gatekeeper

Hi Caprese,

My mom also wears a sleeve for Lymphedema. I hardly notice it. She manages to always find these light weight jackets with long sleeves. She found several that were just mesh in various colors. She doesn't have to wear the glove, so that probably helps, the sleeve is very close to her natural skin tone. She's been very active in bowling and just recently quit working part-time. At 82 I guess she's finally thinking she should slow down a bit. She still helps my 81 yo father broadcast HS sports.

Loods, good for you! I have a co-worker who's son woke up one morning paralyzed at age 12. I can't remember the name of the disease, but now 4 years later, he's training for the paralympic team in basketball.

Perhaps if one makes their personality bigger than their handicap, the handicap becomes invisible, not the person? Caprese, I bet your friends don't notice it. ;-)

Char42

Hey Caprese
My 88 year old Stepmom also has arm Lymphedema from a mastectomy done 7 years ago. She always wears long sleeves to hide her arm.
I wear white knee high support hose because of blood clots in my legs, plenty of stares as I am always in shorts. Now after 18 months I do not even notice, the looks and the grocery stores want to give me special help. I always decline as the support hose has nothing to do with my mobility. At first I took advantage of the special help. LOL
The support hose are not a fashion statement, just a medical need and I think at first I was more aware than people in stores etc.

caprese

Thanks, all of you, for your kind responses. I think my issue here was - amazement that I have gone from a relatively unnoticed person, to someone who is noticed for something that is not relevant. I am not my swollen arm.

Loods - thank you and of course, you are right. People are only curious - and truly, I do smile a lot. I'm a positive person - but just a bit taken back by this different image of me.

Gatekeeper - I loved meeting your mother through you. Thank you. She is a gal after my own heart - hope she doesn't slow down. And you're right - my friends don't notice.

Char42 - I'm also offered help which I don't need. Thank you for telling me about your experiences - very relevant for me.

I'm not complaining - I'm almost 78 - still working full time at a challenging job, live in a foreign country, and am happy to be independent and totally functional. How lucky I am - and you're right, oh so right, Loods - the crux of the problem is the assumptions I assume people make. Thank you all - you have helped me look at this a better way.

really

I had a trauma to my left arm when walking my dog 3 years ago. I had double compound fractures when lead to mulitple infections which also led to multiple infections. I had an external fixator on my arm for 9 months. (It looks like a halo at the wrist and anothe halo at the elbow with series of rods drilled into bones and they stick out of the arm). I was amazed at the number of adults who were say cruel hurtful comments to me. I also worn a Lymphedema glove for several months. I have lots of scars on my deformed arm and limited use. God kept bringing me into contact with people who had far worse medical problems than I did and they all had such inspirational attitude....it taught me a lot. I am self conscious about my arm, but as my friends say "if anyone has a problem, just tell them to get over it!". During my treatment, I have faced several times that it was unsure if I would live thru it.....so I know God has a purpose for me. Best of luck

caprese

Dear really,

I'm sorry for your sudden complex and traumatic problems with fractures and infections. We can never know what will happen to us. But you are fortunate you understand God's love, which gives you strength to overcome all of it. I know, now that you have through this, you will have a truly wonderful life. Bless you. And thank you for posting to help me.

deebelle

Glad to see some of us' seniors"finally posting. They say that older people are also the invisible ones. I guess people don't want to deal with what will happen to them in the future..if only they knew that some of this is positive and not all bad!

Hugs to you mature ones out there from another mature one in Virginia!!
and hoorah for all of us as we are indeed survivors!!

Dee

sdivas

Hello caprese, why do we care what people think of us? If we are going to be looked at and judged, we may as well be our best selves. We can't control what other people think. What is your best feature? Play it up. Walk or sit with confidence. Smile and say hello when people stare ... if they are staring in a negative manner, a smile usually will deflate their behavior. Invisible? We are only as invisible as we allow ourselves to be. I am not a member, but think of the women that are Red Hatters. These women refuse to become invisible. Whether we have an illness or a disability, it is only a part of who we are. Let's not define ourselves by words like invisible or define ourselves by our health concerns. Thanks for the post.

1022

Caprese, I once felt the same way. I was staying at home because I couldn't stand up straight and thought people would be stareing at me. I got a three wheel walker and it changed my life. It has given me my freedom. I have found more people to be helpful to me than looking at me and wondering what my problem is. I have osteoporosis of the spine. Life is to short to have others make you feel miserable. It is their ignorance that is their handicap. You will give more people with medical problems courage to accept themselves by seeing how extaordinary you are and special to the people around you. Good luck and good life.

nobonesaboutit

Dear Caprese,
I can't tell you the number of times people have asked my best friend if I'm her mother. Once a waitress asked if I was my husband's mother. How ill I've been has aged me so, I also have the humped spine and scars on my arms from arm infections that I'm sooo embarrassed of. My friends are wonderful to me, always saying I'm beautiful (HAH) but they are so kind. It is hard to be noticed for these things. My friends are all pretty ladies and I'm scrawney with a big belly due to my liver condition. We all have our stuff to bear. In nursing school I remember being taught with different conditions how a change in body image affects people. Over and over they said it til you just wanted to scream, but now I see why they said it in a personal way and how much it really does affect us as patients and just being people trying to get thru this life together. Good luck, just know there are others going thru the same feelings you're having.
God Bless.

Gatekeeper

Really wrote: "God kept bringing me into contact with people who had far worse medical problems"

I hate when that happens! ;-)

All the time with me too! I never can get a good complaint on that someone isn't always one upping me. Sheesh.

I tell ya I've got to start picking healthier friends/co-workers with healthier kids. :-) In the meantime I guess I'll make myself useful by being supportive and sympathetic for them.

caprese

Bless you! And you know what - in spite of myeloproliferative disease (MPD - see my website http:wmccollar.net), breast cancer and lymphedema - plus, you know, GERD, and high blood pressure - I am absolutely optimistic, love life! I know you're joking - I love your sense of humor. Thank you so much.

caprese

nobonesaboutit, Yes - there you have it - as you were taught in nursing school - a change in body image affects people. That's the truth of it. But one's own attitude - is the mastery of it. And when your friends say you are beautiful it's not HAH to them, and must not be to you. Your friends see you as beautiful because they know your whole person and love you. Thank you for responding to me. You're brave and a leader, and can give such great hope to others. Please keep responding to those in need. Bless you.

caprese

1022, You are right. You have given me incentive, and I can do the same for others. Thank you for taking the time to share with me. Bless you and may you continue to affect others with your courage.

betterbones

HI Caprese,
People are 'good material'. This is how I decided to react to their 'hilarious' responses to my accident. I was suddenly not at work (for almost 2 years while recovering) and rumors flew like so many wild geese. I heard I was much worse off than I was, they see me now, walking around (no physical evidence of the awful head- on collision I somehow survived) and they all assume I'm brain damaged. What I have is knee problems and osteoporosis - but I am working full time at fixing both of those things. However, even seeing folks, they assume I'm not the same (true, I'm appreciating life more and very 'in the moment' -- but they all just stare at me with pity. I understand they care, but I realized there is nothing I can do to change their perceptions except to be myself - happy healthy and gently assure them I'm doing great. Remember, what comes FROM us is the most powerful - i.e, when someone told me "You are in denial - I don't believe you're fine." I replied with a smile; " Is that what you think?" The person stopped and reconsidered. She then said - "I just don't know what to say." I gently said - "It's okay. Say hello and don't treat me like I'm damaged." She then understood.

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