The “Me” That People Never See

 

This was previously posted on The Mighty. You can check it out here. Note, sometimes titles are changed and posts are edited.

 

The funny thing about having an invisible illness is how many people think that we’re “faking it”. Faking being sick, faking needing rest…even faking needing medications. The truth be told, the majority of the time we really are “faking it”…just not like people think. We are pros at faking being well, or of being healthy. These illnesses have affected our daily routines, our quality of life, and even our relationships with friends and family. For that reason, we tend to grasp at anything that makes us feel “normal”.

When I’m able (or required) to get out of the house, I don’t go out in sweatpants and a t-shirt (although leggings have become a staple in my wardrobe). I dress up when I can, and if it fits the occasion. Any other time, I’m adamant about looking decent and matching my clothes and shoes. I’ve even been known to match my cell phone case to the clothes I’m wearing that day (ok, so maybe that’s overdoing it some lol). When time (and energy) permits, I wear makeup. It makes me feel better…more confident…and I want to be (or appear to be) a “normal” person…even if only for a little while. This is what people usually see:

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I don’t want people to see the very dark circles under my eyes caused by either pure exhaustion or from overdoing it on a “good” day. The only people who get to see the “real” me, the “sick” me, here lately, are my husband and my (step)kids…although I absolutely hate for the boys to see me that way either. I want to be a fun mom who can cook for them and play with them, but unfortunately I’m not always capable of that. Sometimes, even around the boys, the mask gets put on. I am a pro at wearing that “mask”. The “I’m healthy” mask, the “I’m happy” mask, and most importantly the “I’m fine” mask.

Normally, the “mask” is an easy, quick fix to appearing to be “normal”. I mean, really, who wants to look sick!?! These past two months, however, wearing that mask has been close to impossible. My doctor started me on infusions of a biologic medication that, in addition to my weekly injection of low-dose chemo (methotrexate), have succeeded in completely laying me out. Many days have been a struggle just to get up to use the restroom without almost passing out or almost throwing up.

For some strange reason, my sister texted me on one of those days to see how I felt. I had no answer for her other than to take and send the following selfie:

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This is me without the “mask”. This is me sick, nauseated, dizzy, in an obscene amount of pain, and completely exhausted although I had only been awake for a little over an hour. This is the part of me that I normally hide from the general public. This is exactly what I don’t want people to see…my weaknesses. It makes me feel vulnerable, and to be honest, worthless. I know better than anyone how strong of a person I really am. I shouldn’t feel the need to “prove” it to anyone by hiding my pain and fatigue. I know that. But I do it anyway…most of us do. We don’t want people to think that we complain too much or that we are hypochondriacs. So what do we do? We simply fake that smile, put on that mask, and adjust that crown…we manage to make it. Some days, that just has to be good enough.

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Being Judged…An Open Letter

This was originally featured as an article for The Mighty. You can check out that link here.  Note, often times titles are changed and content is edited.

 

By the nasty look you gave me, I’m assuming that my ability to momentarily get out of the scooter I was using offended you. Not that it is any of your business, but I needed that scooter to be able to get around the store to purchase groceries. Stores aren’t exactly set up to be accessible to people with mobility issues, so from time to time I have to get up in order to get a product that is beyond my reach. I’m also assuming that since I look “fine” you think that I am just being lazy by using a scooter. Well, here are a few things that you should know….

No, I do not have cancer and therefore still have all of my hair (thank God!). However I do have a couple of autoimmune disorders, and the treatment that I’m currently receiving has side effects very similar to those of chemotherapy. As a matter of fact, I am on a low dose chemotherapy that I inject myself with once a week. When that treatment stopped helping and my inflammation levels were sky high from my body attacking itself, the doctor added a new medication by infusion to my already extensive medication regimen. This drug works like chemo in that it kills cells…in my case, white blood cells (T-cells), the “military” cells that attack when you’re exposed to germs or bacteria. Because of this, my immune system is very compromised right now and I have to wear a mask in public to keep from getting sick. YOU and any germs you are carrying could cause the common cold to become a severe infection like pneumonia to me. This medication also causes severe nausea and extreme fatigue, just like chemotherapy does. There are some days that I can barely lift my head and body just to go to the bathroom (recently this has been most days).

With that said, life goes on. I still need groceries just like everyone else. When I’m having a good day and am able to walk around the store, I do. However with my body exhausted from the constant internal battle with my immune system and the constant pain, there are days that walking around the store just isn’t an option. And if I need something that I can’t reach, then I must stand up and get it.

Maybe it would make you more comfortable if I could afford a personal shopper to buy and deliver my groceries for me, but I can’t. Maybe you think I should sit there like a damsel in distress until someone walks by and then ask them to get the product for me. And maybe, if I were bald and “looked sick” you wouldn’t have thought twice about the fact that I was using a scooter. Well, I’m sorry to bust your presumptive little bubble, but there are many, MANY people who fight invisible battles with their health, and I am one of them. I will not apologize for being sick because it’s nothing I did to myself and I sure didn’t ask for it to happen to me. I also will not apologize for using a scooter in order to get around to get the things I need nor for having to stand up to reach something.

I am, however, sorry that you weren’t taught empathy for others. I’m sorry that you felt the need to judge me unfairly. But most of all I’m sorry for the next person who has to deal with your rude ignorance.

Welcome To My Blog!

Hello everyone! My name is Joy and welcome to my blog! The title “Chroniic Illness Chronicles” comes from my daily struggle with chronic illness as well as those of my husband, Chris. That’s right…my husband and I both deal with chronic illness, which is highly unusual. Normallly, one spouse is the patient while the other spouse is the main caregiver. In our house, however, we are both patients and caregivers. It is a very…unique…situation. Luckily, we both knew what we were getting ourselves into. As a matter of fact, that is what brought us together in the first place, and also what helped us in deciding to not only stay together, but deciding to make it official and get married.

Finding someone, be it a friend or relative who completely understands your daily struggle with being sick is hard enough as it is. Finding that in a partner/spouse is extremely difficult.  Luckily, we were blessed to find exactly that in each other: complete understanding (of the disease and emotions that go with it), support (both physically and emotionally, and empathy in what the other is going through. Most importantly, we found true love. It is such a beautiful thing and just…well, when you find the right person, you just know. 

We hope you enjoy visiting our blog, where we will share our illnesses, our treatment failures, and our treatment successes. We want you- as a fellow chronic illness warrior- to know that you are not alone in your struggles. We want you- the caregiver- to know that you are not alone in your struggles either, and also to know the importance of self-care in order to better care for and/or support your loved one or friend.  We also want you- the healthy person looking at this from the outside- to understand what life is really like for us: the daily ups and downs, the judgements we often receive from people like yourself, just because of our “invisible” illness. We would like it if, even if you can’t see what’s wrong with us, to learn that not every illness can be seen.  Please reserve your judgements and try to be patient with us. Our journey may be different from yours right now, but nothing in life is guaranteed. We certainly didn’t expect for this to happen to us…we didn’t ask for this, so please don’t make our already difficult lives harder. Most importantly, we want you to really see what we usually don’t allow others to see, and we hope it teaches you to not take things in life for granted. You were blessed with health, so live your healthy life to the fullest while you can. Be grateful for the gift God has given you, but never take it for granted, because that same gift could be taken away in the blink of an eye…just as it was taken from us. However, because of our illnesses we were blessed as well..with patience, and with gratitude for the good days. We learned how to not only stop and smell the roses, but to admire their beauty- their shape, their color, their mere existence…because one day we may lose the ability to do so. Take life in, experience it, live it, and share it with us. Let’s work together and teach each other. We don’t want your pity.  We simply ask for your understanding!

I hope you’ve enjoyed this introductory post and continue to come back and read more!