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I am sure you have heard the phrase “A picture is worth a thousand words”, but not all of those words are a true reflection of the picture. Those of us who suffer from one or more chronic illnesses are often unfairly criticized and judged. If we are happy, we are accused of being”high” or not as ill as we claim to be. If we are sad, we are accused of being depressed. If we are experiencing a period of pain that keeps us from leaving the house, we are told that we need to get out. When we do get out those same people doubt the severity of our conditions. If we don’t share our story we are accused of hiding something. Those who only share the hardships of living with a chronic illness are accused of being attention seekers and those who only share their good moments are accused of not being sick at all. Then there are people like Yolanda Hadid from RHOBH (Real Housewives of Beverly Hills) that share both, the good and the bad, that really drives people crazy.
I recently watched season 6 of RHOBH on Hulu. First I want to applaud Yolanda for having the courage to share her battle with Lyme Disease with viewers. She doesn’t need the money, she could have easily declined to continue filming, but instead she made an invisible illness visible to the whole world. For this she is a chronic hero in my book. The behavior of her so called friends could be blamed on the producers creating drama, but the sad truth is that their shameful behavior is exactly what most of us with a chronic illness face everyday of our lives. Her “friends” not only doubted her diagnosis, they also discounted the severity of her condition. She was accused of having Munchausen syndrome (a condition in which someone fakes an illness for attention). Some said she was probably just depressed. Others couldn’t understand how she could be as sick as she claimed when she would post pictures of herself on vacation or having lunch with friends, and this my friends is the subject of this post.
Her “friends” said that her Instagram posts were confusing. They didn’t understand how she could post a picture of receiving a treatment one day and then one of her smiling and enjoying life the next. Instead of talking to her they chose to gossip about her all season long. They assumed that the happy pictures represented a healthy moment. I can understand why they would as typically when an otherwise healthy person becomes ill, they aren’t out enjoying life until they are healed. But waiting is not an option for the chronically ill. For those unaware, chronic means long lasting-without end. We must embrace every moment of joy or life that we possibly can, otherwise we would never live at all. Unlike most people we are not going to get better in 6 weeks, 7 months, or in 8 years. And in most cases our conditions will only get worse as time goes by. The chronically ill live different lives compared to our healthy friends and family. The amount of time we spend outside of our bedrooms, houses, or doctor’s office is minimal. Every outing comes with a price tag. The payment for enjoying the simplest of normalcy includes a spike in physical pain, fatigue, guilt, remorse, and more. Increased pain and fatigue result in spending more time in bed. We feel guilty when the fallout of a simple moment like when having lunch with friends causes us to cancel other plans. Sometimes our pain is so intense after an outing that we regret ever leaving the house at all.
What bothers me the most about this confusion is that these women would most likely be singing a different tune if Yolanda had been diagnosed with a terminal condition. If her doctors had said you only have a year left to live, those women would have been cheering her on and encouraging her to go out and grasp every moment of joy that she could. They wouldn’t have told her to stay in bed and wait until she was healed before going on vacation. They wouldn’t have suggested that she wasn’t dying when she chose to go out to lunch or spend time with her husband. Even more annoying is that her “friends” opinions were solely based upon their perception of a picture. If they were to have spoken to her instead of gossiping, she could have shared what was really going on. Instead of thinking that she must not be that sick if she was able to pose for picture with her mother on a yacht, they may have learned that the few minutes it took to stand and smile caused her to spend the rest of her day in bed. Or that it took all of her strength to attempt appearing normal for her mom, even if was just for a moment. Just because you see someone with a chronic illness smiling, it doesn’t mean that they aren’t in pain. My pictures from Disneyland only tell a portion of the story. Yes, I am enjoying that moment, but what you don’t see are my bowels being twisted and pulled in unnatural directions. You don’t see my physical pain. Most importantly you can’t see what happened afterwards. You didn’t witness how I cried alone in the restroom because my body wanted to crawl back into bed while I just wanted to have one “normal” day with my family.
A picture may tell a thousand words, but those words are meaningless and often misguided if the person telling the story doesn’t have the whole story. Instead of creating a distorted storyline for the picture, talk to the person. The chronically ill should ever be discouraged from going out and enjoying life. My prayer this holiday season is that my chronically ill friends will enjoy the season and do what they can without worrying about their friends and family doubting their illness.
Wishing you a day filled with many reasons to smile,
The Disabled Diva
As my mobility decreased over the years I had to find new ways to stay warm, whether I was inside and outside. Because I am physically moving less than I did before I find myself feeling cold more often, even in temperatures that never bothered me in the past. Because I am unable to walk briskly or do some jumping jacks to get my blood moving, I have had to come up with new ways to stay warm so that I could still enjoy cooler weather outdoor outings with my family and friends. As I scrolled through my Facebook feed this morning I noticed that many had posted pictures of snow and ice. While beautiful, those pictures chilled me to my bones. Don’t get me wrong, I like snow, I just don’t like living in it. I have lived in two states that both experienced heavy winter snow and God willing I will never live in that type of climate again. For me snow is something to look at in pictures or to visit once every five years for a day! Not a fan!! Anyways, the other day I was sharing tips about staying warm in the cold when outside and not having the option of warming up by moving around a lot with a family member and decided to share my outdoor and indoor tips.
Tip #1 Outside/Inside Fleece Leggings. These have been a life saver! Depending on the weather, I either wear them alone with a long shirt or sweater or I wear them under jeans or sweatpants. They not only help keep my legs warm, they also comfort the nerve pain in my left leg that is exasperated by colder temperatures. I have found that Ross carries the best quality fleece lined leggings for the lowest price. Most of mine are also water resistant. The outer fabric of my leggings are Lycra. Because of this I am able to ride Splash Mountain or The Grizzly River Run in Disneyland during the winter months. Water never seeps through to my legs and it just wicks off of my pants! Because they are warmer than traditional leggings, I can spend a good portion of my winter Disneyland days without a blanket over my legs. As for the cold evenings, yes we do experience some cold weather in Southern California, the combination of my fleece lined leggings and a fleece blanket over my legs while in my wheelchair keeps my limbs nice and toasty.
Tip #2 Outside/Inside ThermaCare Heat Wraps/ Bum warmers. These are great for when you need to warm up and don’t have access to a heated blanket or heating pad. I recommend these to my able and disabled friends and family all the time. However, I do not purchase the ThermaCare brand itself because I think they are over priced. You are lucky if you can find a ThermaCare 2 pack for around $5! Instead I purchase 5 heating wraps for $5 by purchasing a generic brand that comes 1 to a box from Dollar Tree! Not only are they cheaper, but they stay in place better than ThermaCare and the heat lasts longer!!! Heat wraps are fabulous for those who are attending outdoor sporting events or a late night at Disneyland! So remember this the next time you have an outdoor outing that will prevent you from moving around to warm up. Placing one near my neck and one on my lower back really helps keep me from feeling like I have ice moving through my veins. Bum warmers are great for keeping your rear end warm, especially while sitting in a wheelchair or any seat for that matter. It doesn’t matter how many layers I wear or how thick of a blanket I put over my legs, my backend is not covered and bum warmers solve that problem.
Tip #3 Inside Electric blankets, heating pads, and reusable heating wraps. Obviously these are indoor only options unless you will be somewhere with access to an electrical outlet or microwave. I tend to overheat while I sleep, so I prefer to not use a heated blanket or heating pad in bed. However, I like a little extra warmth as I am falling asleep. I achieve this with my Sootheze Kitty Collar Wrap. I warm my wrap up in the microwave prior to going to bed, wrap it around my neck or other area that needs soothing and drift off to sleep without worrying about being burned while asleep. I love how my Sootheze wrap relaxes and warms my neck!
Tip #4 Outside/Inside Move your body! It doesn’t matter if you are confined to a wheelchair or are able bodied, you need to move that body!! For the able bodied, get up and move. Walk briskly, do some jumping jacks, stretch, it doesn’t matter what you do, just move! For those of us that suffer from chronic pain and/or have to use a wheelchair for most or all outings, it is a little more difficult to get our blood flowing than it is for the able bodied, but it is not impossible. Here are a few ways I move my body while in my wheelchair. When my legs allow me to do so, I do leg lifts. However, I mostly move my upper body. I will do different arm movements like punching the air. When my muscles permit, I will do twists. Even if the only thing you can do is move your head, do it!!
Tip #5 Outside/Inside Fleece lap blankets or Snuggies. I go no where without a fleece lap blanket, even in the summer! On a cool summer night, the warmth of a fleece blanket on my legs is just what I need to keep the nerve pain in my leg at a lower level. I use my Snuggie, (the blanket with arms), in the car. This way the temperature can be set to keep the majority of passengers from sweating when I am chilled and they are not. My Snuggie is a generic knock off that I found at Big Lot’s years ago and I prefer it over the original brand. Mine is crushed fleece and has Velcro in the back around the neck to keep it in place.
Tip #6 Outside Gloves, hats, and scarves. I know this sounds obvious, but think about how many times you left the house thinking you wouldn’t need them to only wish you had them with you. Although I live in Southern California, we do experience frigid evening weather during the winter months. There are also times in the summer when the air is a tad bit too cool for me as well. Because of this I always keep a pair of gloves, a knit beanie, and a scarf in my care bag. (My care bag is sort of like a diaper bag, I keep items that provide me comfort when additional pain strikes while away from the house). In the summer I carry a lighter weight scarf and a heavier one in the winter.
Tip #7 Outside/Inside Goggles. Before you go thinking that I have lost my mind, here me out. When the air is cold and the wind is blowing, my eyes water like crazy. The same thing happens to me when riding several of Disneyland’s faster rides. Some of these rides are indoors, but the fans that blast cold air onto me drive my eyes crazy. I exit my favorite rides looking like I was terrified because of the tears running down my cheeks. To solve this I began closing my eyes on these attractions and while it helped, it also took away from the experience. Then it hit me…… GOGGLES!! I placed a pair of clear safety goggles over my glasses and voila, no more tears AND I could see and enjoy everything. A couple of friends laughed at this suggestion until I made them try it. Guess what? They loved it!!! I later realized that my goggles would also be great during period of heavy winds. While not the most attractive solution, it is a solution that keeps the cold air from making my eyes water.
Don’t let old man winter keep you from enjoying outdoor activities or outings this year. Prepare and plan so that you can make memories without freezing!
Wishing you a day filled with warm and gentle hugs!