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When People Criticize How I Manage My Illness but Don't Offer to Help Me

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Being chronically ill with Lyme disease is not a fun time. My weeks are filled with expensive out-of-pocket doctor visits, blood work, battles with insurance, scheduling and rescheduling appointments, submitting paperwork and in between all of that trying to eat on a super restrictive diet, take my medicine, detox, deal with herxing and side effects in addition to my illness and find some sort of pleasure and enjoyment. It’s not an easy task, especially when your illness affects many parts of your brain. It’s a full-time job in and of itself and it isn’t something I chose, nor is it fun.

Being so sick and debilitated comes with its own daily battles, like trying to do basic things that were once easy and effortless but have become extremely difficult. Showering requires energy and safety to ensure I don’t have a seizure, pass out from my orthostatic hypotension or fall over because of my severe nerve damage and weakness. Making food for myself is at times a task that isn’t possible because my motor skills need work, planning and organizing the food requires my brain to be able to think and process information and it also requires energy, sometimes that is too little to be found. Having to make phone calls to insurance is something I wouldn’t wish on anyone, and it can be downright exhausting. I also require mobility aids at times because I have severe pain from nerve damage as well as issues with my brain being able to coordinate or sustain long-term movement. Walking super slow for five minutes is now something that is incredibly liberating because I’m able to, yet it causes severe pain and my brain eventually decides when it’s too much and my brain and my body shut down, putting me also at risk for having a seizure due to the overstimulation.

So to the people who don’t offer to help in any way, yet feel they need to criticize me, please have an awareness of what you are doing. This is not new. I’ve experienced this throughout my journey. Everything from my treatment choices (telling me antibiotics will kill me despite having no success with natural methods and spending a fortune on hyperbaric oxygen therapy) to my need for mobility aids to the words I write to the food I eat. I don’t see these people offering to come help me get from my couch to the bathroom, or to cook me a meal when I’m too sick and debilitated to, or to pay my medical bills or to help me relearn how to walk again, yet they feel the need to criticize what I do or how I do it. I’ve learned to let their comments and opinions roll off my back because are they paying my way in this world? No. However, I think it’s important to point this out so maybe people will have a better understanding.

Living with chronic Lyme disease is downright debilitating and extremely expensive. It costs a fortune just to keep me alive and functioning at a low level right now. So, please reconsider your criticisms. Some of us have really debilitating lives we are trying our best to navigate, with little to no outside help from anyone. We have an illness that is often not recognized, experience ignorance and lack of care from the medical system and face battles you wouldn’t ever want to fight.

Getty Image by tommaso79

Originally published: May 21, 2018
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