Fighting to Not Let Judgment of My Health Decisions Bother Me
My whole life I’ve always been judged or misunderstood for one thing or another relating to my chronic illnesses, and my whole life I’ve been fighting to not let it bother me.
When I was 15 and diagnosed with epilepsy and all my friends were learning to drive, I was judged for not driving. Now, at almost 28 years old, I am still fighting to not let it bother me. People still ask me all the time why I don’t drive, why I don’t have a car or even why I still live with my parents. I’m always open and honest with them – I’m not ashamed or embarrassed – but judgments still come.
When I turned 21 years old and couldn’t drink and party with my friends, I was judged and interrogated then too. I tried hard to not let the peer pressure get to me, but unfortunately I did and it caused me to have many seizures, which should have never happened. Luckily, over the years the peer pressure has mostly subsided, but I still get questioned to this day as to why I don’t drink. I’m OK with people asking me any questions, but I should never be made to feel like I’m doing something wrong, and sometimes that’s the way it seems.
I also can’t stay up too late, or if I do I can’t wake up too early, because sleep deprivation is a seizure trigger for me. I’ve explained it time and time again to people who are close to me, but it seems it goes in one ear and out the other. It’s another thing I’m always explaining and always having to advocate for myself when it comes down to it. Whenever making plans I plan accordingly and prepare for any distractions. I’m a heavy sleeper, but sometimes people don’t understand or maybe forget about my “situation” and think about themselves and decide to wake me. It’s frustrating to say the least, especially since I’ve worked so hard to get to where I am now.
Another thing that is a seizure trigger for me is stress. In my opinion I’m great at handling stress. I’m a nurse and for any nurses out there they can tell you it’s an incredibly stressful job. Fortunately for me, I love it. It’s what I’m passionate about. On top of being a nurse, I’m also continuing my education and, of course, dealing with chronic illnesses. Life can get pretty stressful at times. I get pressure at times to pile on more things, and when I don’t I get judged. It’s frustrating at times because I know how much I can handle and I’ve been thriving. It drives me up the wall when people act like they know everything I’m dealing with, as if they’re inside my body. In reality, they have no idea.
Furthermore, people often question why I don’t work that often and I tell them I have chronic pain, but they seem confused when they see me smiling. They don’t understand that my body can only tolerate so much and that I’ve gotten really good at hiding my pain, or rather dealing with it in order to enjoy life. I don’t blame them for not understanding…they couldn’t possibly understand it without experiencing it.
They also don’t understand that having multiple chronic illnesses is like a full-time job. They don’t know how many doctor appointments I go to a week or that I do weekly physical therapy and daily exercises. It’s very time-consuming. Even when your chronic illnesses are well managed it takes a lot of work to get them that way. They don’t seem to understand that and just judge instead. They think when you’re “better” that you’re magically “cured,” but chronic means long-lasting – potentially never going anyway. So even on my good days I always have to advocate for my health and keep it in mind. I can never put my health on the back burner.
Recently I’ve found out that diet influences my chronic pain a lot. I’ve gone gluten-free, dairy-free, caffeine-free and I’m avoiding processed foods as best as I can and trying to limit my unnatural sugar intake. It’s just another thing I’m judged/misunderstood for. I don’t have Celiac disease and I’m not lactose intolerant, so when I eat around other people they try to convince me to have gluten/dairy. I tell them it’s for health reasons and they assume I’m on a diet. I’m not on a diet. I know when I feel my best and it’s without those foods. This is a lifestyle change. It’s how I’ll be eating for the rest of my life, because I want to be healthy and pain-free, or as pain-free as I can be.
My whole life I’ve been judged or misunderstood for the choices I’ve made. I’ve been made to feel guilty and like I’ve done something wrong, all the while I’ve only done what’s best for me. I’ve taken care of myself and have come a long way because of it. I want to feel supported for the choices I’ve made and proud by my loved ones. (Some are proud and some are supportive…for which I’m very grateful for). I’ve worked so hard to overcome so much in my life.
I have epilepsy (I’m now 10 months seizure free and still going – my record, by the way), I had a renal bypass for a rare syndrome called nutcracker syndrome, which I’m recovering well from, and it’s been a year since my surgery and so far it’s been a success. I also have pelvic floor dysfunction, which causes me muscle spasms from my back down to my thighs and also in my abdomen. My pain is slowly getting better with weekly physical therapy, lots of doctor appointments with many different specialists, doing daily exercises and stretching, being on muscle relaxers and diet changes. Unfortunately it’s a slow journey and I’m not able to exercise with the exception of walking and swimming, but not too quickly otherwise I’ll have a major setback.
For anyone else who’s been made to feel like your decisions were wrong or selfish or you were made to feel guilty or were judged for them, my words of advice are: no one knows you better than you! You know your body better than anyone else and while we may have medicines and doctors and all kinds of specialists and physical therapists, the real people who are going to get us better are ourselves! Advocating for ourselves and taking care of ourselves. Do what you feel is right in your heart. No matter what you do in life you will always be judged. So if you’re going to be judged, let them judge you while you get better and stronger and then show them how much you kick butt!
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Thinkstock photo via MistakeAnn.