guest post! | “but you don’t look sick!” – living with multiple sclerosis

This week is Invisible Illness Awareness Week!  I’ve been blessed by many of my amazing friends who want to share their stories to help us all gain a bigger perspective on what it really means to live with a variety of invisible illnesses.

My friend Meggs has Multiple Sclerosis, and does her best to keep active and take an active role in managing her disease.  She also lives as a person with MS and without insurance.  She shares her story of some of her experiences navigating the world of invisible illness in the last year.

meggs headshot

Since I was diagnosed with Multiple Sclerosis in early 2011, I’ve come across more than a few people who are (unintentionally) ignorant of what it’s like to live with a disease that has symptoms nobody else can see. I think one way to let you in on what it’s like to have this “invisible” disease is to share some of the most frustrating things people have said to me since I was diagnosed and the things I wanted to say in response but didn’t:

  • What they said: “You don’t look sick. Are you sure you have MS?” What I wanted to say but didn’t: “I can’t see your brain. Are you sure you have one? Yes, I’m sick. Yes I have MS. I’m sorry if my face isn’t falling off as an outside indicator that there’s something wrong with me. I shouldn’t have to look sick for you to understand that I have lesions on my brain. Ugh!” I may not look sick, but I feel like a big ol’ pile of poo sometimes. MS is a disease that has so many symptoms it’d take me an entire day to explain to someone how it affects my day-to-day life and why they can’t see my symptoms. I walk around about 30-40% of the time with a super annoying and sometimes painful tingling sensation in the entire – yes ENTIRE – left side of my body. Not to mention the shooting pains, vision issues, dizziness, and muscle fatigue.

  • What they said: “I know [so and so] has MS, and she balances a career and a family and an active social life quite well. When are you going to go back to work and why don’t you go out with your friends more often like [so and so]?” What I wanted to say but didn’t: “[So and so] has medical coverage and a treatment strategy that she has worked out with her neurologist. [So and so] has the benefit of accessible health care and medication at her disposal. Were I able to afford the fees to procure a neurologist in order to gain access to meds and treatment plans that would allow me to go back to work I would be working instead of spending countless hours trying to find resources to get back on my feet. As of this moment without meds to manage my symptoms I’m kinda out of luck. And I don’t go out with my friends more often because I’m tired. Fatigue is a vampire. And not the sexy ‘True Blood’ kind. The ugly ‘Nosferatu’ kind. Furthermore, I am NOT [so and so]. Thank you; please drive through.”

  • What they said: “Oh my GOD! That’s horrible! Are you gonna die from it?” What I wanted to say but didn’t: “Oh my GOD! I know! I sure hope not!” If I had a nickel for every friend or acquaintance that has told me some horror story about a person dying or having their livelihood stolen from them because of MS… well, I’d probably have a dollar or so. The fact is I don’t know which type of MS I have or what my general prognosis is because I don’t have access to health care that will help me figure that out. I found out about my disease thanks to the compassion and ingenuity of a few really awesome people who work with homeless and indigent programs in my community. I would prefer not to be bombarded with sympathy and remarks like this because all they do is make me want to punch people walls.

All in all I try to have a sense of humor about things and laugh it off when I’m able. I guess it’s one way of coping with the fear and the anger I’ve felt since I was diagnosed. The truth is most of my friends and family will never understand how it feels to live with Multiple Sclerosis… and I’m thankful for that. Hopefully one of these days I’ll be able to find some affordable health care and a treatment plan that’ll work for me. Until that day comes, I have hope and a positive attitude and a great online community to reach out to when I need advice about how to deal with the things I’ve got to face in the days ahead. Thankfully, I also have a mental filter that keeps my mouth shut when other people who don’t even really know what MS is find it necessary to step in and fix me with their advice and their lectures about how I should be handling the disease. Otherwise I might have not only Multiple Sclerosis, but also the need to stretch a thick piece of silver duct tape across my lips everywhere I went. Now that would be something to explain!

Megan is also a survivor of childhood sexual abuse and sexual assault as an adult. She has been diagnosed with Post Traumatic Stress Disorder, Generalized Anxiety Disorder, Mild Obsessive Compulsive Disorder, and depression. She blogs about her healing journey at I Tell My Truth.

Thanks for sharing your story, Meggs!