Fighting the Stigma of Invisible Illness
I typically write about overcoming, turning your disability or chronic illness into an avenue to reach out and connect with others who may be battling the same and offering encouragement that although we have chronic illness, we are not a chronic illness. We are so much more than that. I do believe that.
The experiences I have endured since being officially diagnosed with more than just migraines and gastroesophageal reflux disease (GERD) in my 20s have been simultaneously shocking, disheartening and, at one point, even caused me to take a step away from social media. I hope those who read this and aren’t battling illness will gain a deeper perspective surrounding our struggles. I wish that everyone who sees what I have been through can, on some level, relate with empathy but still know I will never stop loving life because of comments made not only by my physicians and their staff, but also my own family, supposed friends, peers and those who tell me they support me.
This journey is truly a difficult one. It is trying, exhausting, filled with judgment and labels, but if we don’t fight and advocate for ourselves, then who will? Who is going to spread awareness for our illnesses, incurable diseases and the battles we fight? Perhaps after reading you will gain a sense of camaraderie and comfort knowing you are never alone in your journey. There are many out there who have gone through these moments and aren’t afraid to be transparent through the good, the bad and the ugly.
To that, here are a few moments I have experienced and still do while living this chronic life and how I deal with them.
One of the illnesses I battle is called gastroparesis. It is extremely patient-specific. Some can still enjoy the pleasure of food while others, like myself, find themselves in the constant circle of weight management due to lack of nutrition. I also found prior to the GP diagnosis that my intestines do not function properly (IBS-CIC per one gastroenterologist’s notations). Overall motility is a daily battle accompanied by nausea, sometimes vomiting if I am not steady on my antiemetics, and even still I have my days when abdominal pain, malnutrition and the effects thereof trigger migraines and tend to send other illnesses into a flare, such as the neuropathy, fibromyalgia, colitis, gastritis and more.
Because of the stigma I face, comments made have been such as…
“Oh, but you don’t look sick.”
“Look, you’ve gained weight!” (Gaining “weight” only means I’m toxic and my body is in trouble.)
“You’re how tall and weigh how much?”
“Do you work out? You look so thin – you must work out every day!”
“You look like you’ve lost a lot of weight since the last time I’ve seen you. Are you OK?”
“Please help my friend. She is ghastly thin and we have to help her.”
“Here, are you hungry? Want something to eat?”
“If you just went to the gym you would feel so much better.” (Chronic fatigue due to malnourishment as well as spine and disk damage prevent me from doing this.)
All of those comments above were from both medical staff who clearly should know of my condition and alleged friends. Once, someone I knew was in the latest vitamin drink craze. She wanted me to try this pink drink. I met with her and I did try some. Mind you, I cannot consume anything red. It makes me sick. Prior to tasting this product, I filled her in on my health, multiple diagnoses and so on. She was overly confident this drink was my cure all. She went so far as to take a picture from my social media account and add me to a secret group for those who sell and use this product, unbeknownst to me until I received a tag. Underneath my photo she went on to say how sick and thin I was. She gasped at my weight being “disgusting” and “mortifying” and “they had to help me.” Wow! Was that her way of assisting the ill?
The comments were mixed. Some offered pity and concern while others felt the need to tell me what I wasn’t doing correctly and how if I just promoted “gut health” I would be cured. None of these individuals were in the medical field. The worst part of it all was after sampling this drink I wound up extremely ill, vomited for three days and wound up with seizures, as mine are linked to GP. Upon letting my “friend” know about my experience and reviewing the ingredients with my explanation as to why this product made me so ill, I never heard back from her about anything. Not getting together for lunch, not even if there was something else she wanted me to try. I tried to keep her business out of our friendship. I wanted to be a good sport. I knew it wasn’t for me; however, what took me by surprise was her hunt to get in touch with me only to drop me off at the nearest exit, so to speak, when it didn’t work. Unbelievable. However, without that experience I wouldn’t have realized her motive wasn’t truly to help me.
I am sure I’m not the only one with this experience.
The stares that come if I have a seizure, to offer another point of view, used to bother me. Attempting to hold on to the grocery cart or wall as my legs gave way right there in aisle five used to be a huge deal. Sometimes, I become so ill I vomit first and then seize. The ambulance rides and doctor visits and scans have taught me much. Aside from the celiac plexus block, a nerve block which has turned the seizures down from eight to nine a day to only when I’m severely ill or in a gastoparesis flare, I cannot do anything about them.
Now, if I present with seizure activity, I just leave it be. I hope my husband or oldest son gets to me quickly enough before I collapse and sit on the cold, dirty floor until I can regain some use of my extremities. From there, I limp and drag my body, curled up hands and all out of the store. If I am at home then I am most likely already on the couch, chair or in bed. Most often, my speech is affected after having a seizure so that has reframed what quite a lot of people think or how long they gaze upon me. I do not venture out alone. Many times I’ve had to use the electric carts just to make it to check out and get to the car.
There are so many ways that illness, whether it is invisible or visible, is misinterpreted by others. Raynauds makes my hands and feet turn purple which can make some people uneasy. Neuropathy makes my feet burn so badly I can’t stand for certain periods of time. Chronic migraines show up with weather change, malnourishment or being toxic from lack of motility. Trying to ask a 6-year-old on the spectrum to tone it down isn’t easy. Some days I’m stuck in bed until I can break it, but unless you have migraine, you will never truly understand that type of pain. Walking extremely slow or with a limp due to Ehlers-Danlos syndrome, spine/disc damage or not being able look upwards if someone is standing above me is difficult. I do not appear unwell to most onlookers so the lidocaine patches, pain cream, nerve blocks and so forth seem to be overlooked by even my own family members, just like most of my battles. I’m sure most of your battles.
I understand this was a lengthy piece; however, if it shed some light into even a day in the life of a person who lives with painful, chronic, debilitating and incurable illness, then that is advocacy and awareness. If this helped another feel as if they aren’t alone, then great, because you aren’t. If you picked up on any signs of chronic illness you can carry with you, I hope you will share them with others. I implore you that if you gaze upon another (of any size or weight) rubbing their temples, struggling to walk, sit and even stand, stuttering or having speech issues, or if you’ve noticed a difference in the presence of your friends, family, colleagues and so on, that perhaps you’ll think farther then judging based upon appearance. Maybe they are chronically ill? Maybe they feel judged or demeaned by something that was said and have separated themselves because of it. Changing one question truly changes our lives.
There are so many illnesses not mentioned here. Invisible has no face or mascot as to what we are supposed to look like. It’s all of us who struggle; all who fight. Hang in there. You’re never alone. Even when illness becomes visible, it doesn’t mean understanding necessarily comes with it. We have to resolve within ourselves to rise above the comments, frustration and even lack of education. We become stronger through the pain and the sting no longer resides. And when it comes again, with all unfairness, we choose to reframe ourselves and stand tall. That’s when we can bring awareness to an even greater extent and lead as patients who love with compassion towards those who have no clue. We can do it. Together, I believe we can. You are so much more than any word spoken over you! Share your story and make your mark. The world needs more of that.
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Thinkstock photo via vladwel.