Going from a mostly "invisible disability"in winter to a "highly visible disability" in the summer

 

 

Our weather in Virginia this Spring has been colder than normal, so I was so happy this week when we finally warmed up enough for the official start of shorts weather for me.   During the winter I wear long sleeves and pants, so for the most part unless you know me, you would not know I am disabled.  Sometimes I limp when my feet are hurting me, but lets face it in today's world a lot of people have feet problems.

I use handicapped parking every day when I go out, even when I am having a good day and not limping.  Why?  Well if I want to continue to have a good day, I have to limit my walking.  So that I can get the most out of my day, I have to pace myself and if I park further away in the parking lot, then I have to limit my walking in the store, while I am shopping or wherever I might be.  My feet sometimes will turn while I'm walking and I have to be able to get back to my car as soon as I can, because it is so painful to walk.  If all the handicapped spaces are taken and there are "for moms with small children" or "employee of the month" sorry I'm going to take it, as both of those groups can walk okay.

Now bathrooms when there is a line are still tricky for me.  I love when the handicapped bathrooms are separate from the regular ones, because I can go straight to it; however, if it is together with the regular bathrooms and their is a line I really feel I should be allowed to go straight to handicapped behind other people that use handicapped.  My dilemma is I cannot bring myself to speak up and ask who is in line for just the handicapped stall and if no one, walk on by all of them to go.  Standing still is extremely painful for me so normally I just suffer in silence.  I have to use handicapped and you would understand why if you ever had to pull up my compression hose or see me do my gyrations to get them up.  They are 50lbs of pressure, so they are very tight and do not go up easily.  I have this issue all year long, so not really a difference weather people can see my disability or not.

I wanted to bring up the two topics above, because I am disabled and in the winter, while my arms and legs are covered, most people do not know I am disabled.  There are millions of people that are disabled, but you can not see any physical sign of their disability.  They have the parking passes because their doctor has given it to them based on their diagnosis and they do have to be renewed every couple of years, to make sure the disability still exists.  Like anything else, some will get these passes fraudulently, but the point is you can't see all disabilities so making an assumption that anyone that hops out of their car parked in a handicapped space is scamming the system would be wrong.  I hear comments sometimes in the winter, you know the ones where they are loud enough for me to hear, and I always want to tell them I would give up my parking pass anytime if my disability would go away with it.  This is not a perk of being disabled, believe me, but a necessity that I am thankful for all the time that I have to help me through my day.

Well, what a difference shorts and a short sleeve shirt make,  I kind of get a whoa that's right everyone can see my disability the first day out after the winter coverup.  I made a choice when I was first diagnosed that  I would not cover up my compress hose, like others have told me they did because they were embarrassed by them.  Wearing my hose is more comfortable in shorts, as opposed to having long pants over my thick compression hose, so I love when the weather changes and allows the shorts to come out.  Just the first day out in shorts is a kind of shock with all the questions and stares, then it is no big deal and it is not a bad shock, it is a good I can share what lymphedema is when people are curious and ask.

When you child asks "mommy what is wrong with that person"  I am really OK with you coming up and asking or allowing them to ask me and I will explain it in their terms or you can explain that sometimes people have medical problems and need different things.  I always feel so bad for the child when a parent says shhhh we don't talk about that or quiet them down, instead of answering their questions.  I had to explain to my kids what was wrong with me and of course I expect your child may have questions.  To be honest it makes me feel weird when someone shhh  a child and they are pointing at me, instead of answering the child's question.  I am me and I am just like you with a medical problem and don't you remember a time when someone pointed to you as a kid and whispered, well it is the same thing when your child points and ask a question, but you shhh them and hurry away, address it and move on and your child will be better for it.  Along the same lines, if you have a question, ask me.  Most disabled people are more than willing to answer a question as to why they have something on or what they have, because when you do you allow us to share information that you will file in your mind and may pull back out for a friend or family member that might have the same systems.  My disability is less heard of so not many people know about it, so when I can educate someone about it I love to share the information.

I am sharing on this blog with hope to bring up things that you may think of but don't want to ask someone with a chronic illness or by sharing make it easier for you to ask someone with a disability a question that you have because this blog makes you comfortable asking.  I welcome any questions you may have about lymphedema or living with a chronic illness.

Lisa