Lymphedema in Public
The normal life that I wanted to return to after my cancer treatments
was denied me with my lymphedema. My new
normal life took some adjustment. Lymphedema
came with a set of difficulties both physical and mental. To be compliant with
compression garment wearing meant that I became visibly different. I lost a lot
of social comfort because I was marked with something that many, many people do
not understand.
It never occurred to me that I wouldn’t wear my garments in the
prescribed way. I was going to manage my
lymphedema to the best of my ability.
However, I can understand how a poor fit of garments would have made me
think differently, and I really understand how the reactions of others can put
patients off.
People are curious, sometimes in a kind way and sometimes out of
ignorance. Sometimes they want to know
what I am dealing with because of a personal reason and they are seeking
answers. Sometimes they don’t understand
that their questions make me feel like a circus sideshow.
I can’t do much about the reactions of others but it is a challenge to
cope with this. People respond to me in
strange ways but I know this is part of having lymphedema and wearing my
compression garments.
There are considerations that I adhere to that make this social
awkwardness worse. I don’t shake hands
in a normal right hand to right hand fashion because I won’t risk a hearty, firm
handshake. There is an interesting point
when I grasp the top of someone’s hand with my left hand. The other person can’t help but notice. Some will look confused, others take it in
stride. Sometimes I give a word or
gesture of explanation by lifting my gauntlet covered hand. The ball is in their court- I’m not being
rude, I’m looking after myself. The very
astute will extend their left hand and they get full marks for their
manners.
I’ve come to understand that when I am in public, that frequently
someone will enquire about my garments. Initially I thought I could let people know
about lymphedema but that’s fraught with hazards. Do I want to begin with a discussion of my
cancer? No. Do I want to explain lymphedema? I don’t have the time – look at how much I’ve
covered within these pages. Do I want to
be rude and abrupt? Sometimes, yes I
do. Sometimes I am angry that I’ve been
reminded of lymphedema.
My very worst incident occurred while I was having a great day with my
girlfriends on a shopping trip. A local
yokel came waltzing across to joke me into telling him about my ‘injury’. I get it.
There often is a humorous story involved, of the tripped or slipped
nature. He probably meant no harm. The fact remains that he wasn’t put off by my
first response. He had to continue. It put a pall over my day. I was unprepared, but I certainly gave the situation
a lot of thought and anger. I couldn’t
go back and tell him off, but I didn’t have to suffer this again.
So, I’ve developed a script of sorts to respond to inquiries. A very
common comment reflects that I look like I’ve been injured.
‘This isn’t an injury, it’s a condition’. I say and then I play it by ear after
that. I give brief answers, ‘I wear this
to manage a condition I have.’ Or ‘I
have a lymphatic issues.’
The knowledge that my public life will come with queries has caused me
much emotional stress. Isn’t it enough
that I live my life well? Do I have to
work hard at all my lymphedema related tasks and difficulties AND to deal with
other people’s ignorance as well? Yes, I
do.
I’ve been hurt by the intrusion.
I have felt self-conscious. I’ve
bemoaned the frequency that this occurs.
I’ve been quiet. I’ve overshared,
I’ve struggled. I’ve resented this
aspect of lymphedema as much or more than any other. It is so random and so out of my
control.
Recently I’ve discovered a couple of things about this emotional
problem. My imagination predicts that I
will have an incident of this nature when I am stressed, so it’s a stress
signal as much as anything. This insight
is useful and it let me understand something else. I’ve handled this in the past, and if
something should happen today, I’ll be okay.
I think I’ve turned the corner.
Wardrobe Issues
Basic tips surrounding clothing involve the avoiding of constrictions. I need a proper fitting bra, with wide straps
that don’t cut in. My purse cannot be large
and heavy because it is worn on the shoulder.
Again, nothing is as simple as it first appears.
I used to sort by appeal, color and price. Now I sort by the arm area of a garment.
When I was bandaging, it was like wearing a cast. I need a lot of room for that, and I only had
a few items of clothes that were roomy enough.
Luckily I was not bandaging during winter, because I think I would have
needed a cape like coat- provided the accommodation for the arm/wrist was large
enough.
Now my arm is encased by my compression garments. Any degree of
tightness can lead to fluid blockage and complications. Sometimes I buy in a size larger than I
actually need to gain ease in the sleeve area for my affected arm. Some fabrics will shed onto my garments,
others will not slide over. I have to
consider how warm a garment is, because I already have one layer on my one
arm. Too warm is not only uncomfortable,
the extra heat can aggravate my arm.
This is manageable. I do have a
decent wardrobe of ¾ length sleeves or sleeveless tops. I have some workable sweater jackets that
bridge the seasons. Buying clothes is another situation where I need to be
aware and proactive.
Doors
It’s a two handed world out there, even if there are some improvements
made for handicap access. Doors are not
the only physical challenge.
Our car, purchased two years prior to my lymphedema, has a standard
transmission. There is a slight benefit
in gas consumption and this farmwife knew how to use one. But with my hand in pain and the action of
shifting requiring both strength and stamina, driving the car was
difficult. I did so reluctantly.
That one accommodation for my lymphedema had huge impact on my
lifestyle. I didn’t recognize it initially
but I stayed home more. I was driven to
places but I didn’t ask for a ride in the same way as I would have driven
myself. The ripples went outwards from
this one change.
Only a person who is dealing with their new chronic condition is truly
aware of the impact. Many times, during
my first year with lymphedema I noticed changes in my life.
As I review this first year with lymphedema I do want to assure you
that many problems were resolved in time.
I did adjust. I do find my hand
or arm tires/aches/pains if the time of driving is long, or if I have to shift
gears often. I rest, I go forward, I
monitor how significant the stress is and I treat myself with kindness. Mine is not the life of total freedom; it’s a
life of realistic moderation. I have to
be happy with that. And I am.
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