To Everyone Who Has Made Me Feel Invisible Since I Got Sick: Thank You

I was never a popular person growing up, but I always had a few friends I could count on – ones I was sure would never leave, friends I would grow old with. Then, I went through a period of “sickness.” A “sickness” that, at the time, doctors thought was “just a virus and you should feel better in a week.” Well, that week would never end.

Here I am more than 10 years later and I’m confined to my couch today in a flare so bad I want to scream and cry. But, that would require energy I just do not have. Those friends I had have long since disappeared. No one wants to be friends with someone who is “sick” with an incurable chronic disease. No one wants to be around for you when there’s no chance you’ll “get better.”

Don’t get me wrong, I definitely have some good days, some days where I feel like I am “normal.” However, those days are usually followed by multiple days or weeks like today, where I am confined to my bed or couch. I can’t say I blame them for not sticking around. My illness has caused me to back out of more plans that I can count, it has caused me to flake, it has caused me to forget important dates (like birthdays) and it’s caused me to not always be the upbeat and bubbly friend I used to be.

It’s uncomfortable for people to see you go through these changes. It is uncomfortable for them ask how you’re doing, and have your answer be “terrible.” Or even worse, have your answer be “fine, I’m just fine,” when they know that is a lie. It is uncomfortable for people to know you’re not going to get better. It’s uncomfortable for them to see you struggle to walk, or to use a device to help you walk when your leg has quit working. It’s uncomfortable for them to be seen with you using your disabled parking permit when you “don’t look sick.” Trust me, I completely understand your frustrations and feelings of being uncomfortable more than you could ever possibly know.

 

So, to those people who quit asking me how I feel, who quit inviting me to events, who quit going out in public with me, I need to say thank you. You have made me realize that this is exactly why I can’t stay invisible, even though it may make people uncomfortable.

I can’t not talk about my invisible illness just because it makes other people uncomfortable. I have to talk about it because it makes people uncomfortable.

There is an entire community of people just like me – people who desperately need to be “seen.” People whose doctors have made them feel like they were just making it up, that because their illness couldn’t be seen, it couldn’t be real. These people are not making it up. These people are some of the most caring and empathetic people you will ever meet. These people are strong and fight their own bodies every single day. These people are great in numbers, but you wouldn’t know it because the subject of chronic and invisible illness makes people uncomfortable. So, no one talks about it.

To those people and doctors who have made me feel invisible: thank you. You have taught me I have to speak up, I have to talk about my illness, because if I don’t speak up for me, no one will. I have learned so much about myself through this process, and I find new strengths every single day.

To my fellow invisible and chronic illness warriors, you are not invisible. Stop apologizing for talking about your illness and speak up! You deserve to be heard. If we don’t talk about our illnesses, no one will. We are our best advocates, and hopefully one day we will all have a cure. But, a cure doesn’t start with being invisible.

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Thinkstock photo via finwal.