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.
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.
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.