View from the Chair: Dialysis and Invisible Disabilities

This blog post was made by Dori Schatell, MS, Executive Director, Medical Education Institute on October 16th, 2019.
View from the Chair: Dialysis and Invisible Disabilities

It is difficult enough to have one or more chronic diseases without also being harassed for needing accommodations like mobility scooters in stores or confronted about use of handicapped parking spots. Those with obvious disabilities—which may be signaled by mobility aids such as wheelchairs, crutches, or canes—often must contend with uninformed prejudices about their abilities. But, some disabilities are hidden, which gives rise to an entirely different set of challenges related to overestimating what they may be able to do.

Unfortunately, we humans tend to size up people and situations at a glance, and make unwarranted assumptions, like:

  • Young = Healthy
  • Attractive = Healthy
  • Ambulatory = Healthy

None of these may be the case. The truth is, we can’t see people’s pain. We can’t see their breathing problems. We can’t see how much energy they have left, or whether they feel dizzy. People on dialysis often hear, “But, you don’t LOOK sick,” which can be extremely frustrating, because it seems that their illness(es) are not taken seriously. Some are outright accused by family or friends of laziness or malingering, which is hurtful when they wish they could be as healthy and active as they may appear to be.

I asked the Home Dialysis Central Facebook discussion group about their experiences with invisible disabilities to illustrate the challenges, and here are some of the circumstances they shared:

  • I have neuropathy in my legs and arthritis in my hips and back, so I have a handicap plate. I walk in the store and pray for an electric cart to ride around in that works. If none are there, I just suffer through, leaning on a cart. I’m a strong person, so I’m not going to announce my agony. I have a wheelchair that my husband pushes me in if we go somewhere that requires a lot of walking. I’d gladly park in the back of the lot if only I didn’t have this pain!
  • Total knee replacement here. Get grief frequently.”
  • My husband gets short of breath, and we have had rude stares, like we shouldn’t park there. People are so ignorant.
  • My Godfather had lung cancer and bits of his lungs removed as needed. All of his limbs worked perfectly despite the time he spent in war zones in Europe. He had very little breathing capacity and used his placard when he felt he couldn’t get from a standard parking spot to his destination. He was harassed for not ‘looking” disabled.
  • I had horrible neuropathy and vertigo which made getting around difficult at best. My worst days are when my anemia and low Tsats are dragging me down. Those days, I can barely get from one room to another, and we have a small house.”
  • I have one [handicapped parking placard] because of fatigue, and because even though it doesn’t show, I have pain from 3 crushed discs in my back. I only use it if I’m in pain, though.”
  • I have severe arthritis in my knees, ankles, and feet. Most days I use a cane, some days I don’t. But there is NO day I can go more than a block or two unaided.”
  • My friend has Multiple Sclerosis. You would never know it by looking at her. But, she gets unstable at times…has extreme fatigue and dizziness. I have neuropathy in my feet, legs, and hands. My legs get numb at times and feel like I have weights on them.”
  • I have CKD and am on peritoneal dialysis, and I usually look and feel healthy. However, after a bout of severe anemia at the beginning of the year, and another period of fluid overload (+20lb.) with severe edema in my legs, I asked my doctor to sign the paperwork for a handicap placard, and he did without any questions. Now I am using the handicap parking spot on days that already start out with extreme low energy, knowing that 8 hours of work are not going to do anything to make things better. Same does apply for when I am in pain or have to haul something heavy from the car into a building. However, even then I make it a point not to take the last handicap spot and not park in the van designated spaces, as those for sure are for people in wheelchairs, etc.
  • Yes, I’m young, but I can’t feel the lower half of my legs and can’t walk long distances some days because of the 23 spinal surgeries I’ve had. It’s humiliating to have to ‘prove my disabilities,’ especially since some days I can manage fine, other days I can’t move my legs at all, and there are all kinds of shades in between. I get the placards, not the plates, and I don’t drive with them in place. I’d just pulled into a parking spot and was about to hang my placard when a man hit the hood of my car with his cane and shook his finger at me. I showed him my placard and then got out of the car and told him shame on him for assuming. I could tell he felt badly once he saw my labored walking. But, still I couldn’t believe it.”
  • I have orthostatic hypotension, and can’t walk very far without my blood pressure tanking. I often get obnoxious stares in grocery stores when I have to use the motorized carts or wheelchairs.
  • Kidney disease makes your legs weak from treatments. Back may hurt. Sometimes this treatment makes you feel ill or sick to your stomach. Also congestive heart failure. Fatigue. Diabetes with neuropathy and/or Fibromyalgia makes one’s legs hurt… I myself have multiple issues, and while I don’t have a parking tag yet, I have to use the mobile carts at times, and it is becoming more often.”

  • Metal in my neck and spine. Not visible, but makes walking very hard. See a young face, but inside, a broken body. Please don’t judge.”
  • I was fluid overloaded a few months ago when I lost weight. I had trouble catching my breath and could barely walk as a result. Had to take a break just to get into the door of the grocery store from my parking spot.
  • I am on oxygen, I have an invisible heart condition, neuropathy, lupus with lung involvement and severe joint pain, and the stiffness, pain, and occasional muscle spasms from imbalances from ESRD.”
  • I have CKD and Fibromyalgia. Some days I’m perfectly fine to walk further and park out some. Those days I’m happy to let someone else have the spot. If I’m having a bad Fibromyalgia flare, you can bet I’m using that spot!

This topic matters to me personally, too, as one of my daughters has hypermobile Ehlers-Danlos syndrome, a genetic collagen disorder. She can have various types of pain on any given day—nerve, bone, muscle, deteriorating neck discs. Her energy fluctuates. But, she’s young, looks fit, and goes to PT and the gym to help stabilize loose tendons and ligaments. So, I see what it is like for her to have a hidden disability. And, since she is an artist (and an introvert who would hate to be confronted in a parking lot), I asked her to develop a window cling for cars to help MEI raise awareness that people can have hidden disabilities. This cut-out version is her design.

It’s Invisible Disabilities Week from October 14-20. If you think these window clings can help you educate people or avoid unwanted confrontations (just point to the cling; no need to explain what the disability is), you can order two of them for $2 plus shipping from the non-profit Medical Education Institute, right here in our store, or call us at (608) 833-8033 for a bulk order.

NOTE: This car window cling does not replace your state’s disability parking tag or license plate.

Invisible disabilities can affect any of us at any time. The next time you see someone who does not need a wheelchair or crutches park in a handicapped spot, please consider that they may have a disability you can’t see. They may be in pain, short of breath, have trouble with balance, or this outing may use up their entire energy supply for the day. Please treat them with compassion—just as you would want to be treated if you had to walk in their shoes.

Comments

  • Dori

    Oct 17, 2019 5:14 PM

    Leong Seng Chen, you are always such a wise and gracious contributor to our Facebook community—and I had no idea that you have hearing challenges. Those are so very difficult, because they can be isolating. I’m sorry that it can sometimes be a struggle for you to get people to remember to write to you. But, I am very glad that you can connect with others and share your experiences and wisdom with us on the Internet.

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  • Leong Seng Chen

    Oct 17, 2019 3:29 PM

    I am Leong Sen Chen, now at 72, a much earlier retiree person, simply because I was a hearing impair person that no one liked to engage me for work or a job since then. Therefore I gradually lost my productive income for the family. I somehow had to rely on my wife to move on as my children were still small at that time & all were schooling while one was only at nursery home then.

    Then, 5 years ago at 67, I had end stage kidney disease (ESKD) that eventually tied me up at clinic or centre for haemodialysis treatment or therapy in order to move on along my struggling journey. Three (3) times on weekly basis & each session is a minimum of 4 hours as standard treatment or therapy. As I am ageing my nerves systme is too gradually deteriorate at the same time. No powerful hearing aids seem to help me much at all unless I go through complicated medical surgery of implant hearing device which is also no guarantee for medical successful too.

    Here most had been touching or talking about some other invisible disabilities yet sound like have not touched or talked about an invisible disability such as a deaf patient. I hereby like to begin with my humble approach on this topic, then!

    Been a haemodialysis (HD) treatment or therapy since October 2014. It is very difficulty for even the nurses or doctors to play an extra role by writing notes to me so that I can clearly & sharply know & understand their to & fro conversations especially with their healthcare medical instructions or advice. I trust & believe they don't mean not to do those extra mileages to help me up but rather take things for granted though! I had been trying to read their lips services & guess their meaning & value with much difficulties nevertheless. Not even my wife now living with me only that I can possibly know or understand her tone or gesture if not writing in words right in front of me. At times I am very very disappointed too but I am a very patient patient anyhow since day 1 of my haemodialysis (HD) treatment or therapy.

    I had encountered many accidents on the passages or walking path that cyclists just ignore me & or even knock me down if I couldn't picked up their warning or signal.

    Yesterday my wife accompanied me to a hospital for an echo or scan on my vascular heart conditional factors. My wife & I myself highlighted & stressed my hearing problem that I need writing for their instructions or advice during the procedure/process of echo.

    2 nurses attended me one after another for the echo procedures yet they struggled throughout the process till finally I raised my voice to request them to write down what they clearly & sharply wanted me to do during the procedure of my echo on my cardiac testing or scan.

    So quickly they began to know & understand or realize their mistake & wrote down in a piece of paper as such:- " Breathe all the way out & then breath out just a little bit & then stop & hold there for a while ". That's all I need to know & understand the most as hearing impair & or as a deaf patient. It was a flying color there onward! It took almost a hour for the whole procedure or process all in all.

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