Chronic Illness: On the Outside Looking In

lonely-thought-nature-alone-in-ocean-seaside-sky-sun-rays-free-hd-90675Sometimes chronic illness leaves patients on the outside looking in. When I was younger, I sometimes had to leave social events early due to my bipolar bedtime. Other times, I just didn’t go. Now, I have autoimmune issues to worry about too—lately, I’ve spent many days at home because cold and flu season is upon us.  And that swollen foot due to mosquito bites scared me. Recently, a friend of mine got engaged. I know because I saw the pictures on Facebook. I called to congratulate her but apparently she changed cell phones. I got a “wrong number” response. Since I got Myasthenia Gravis in 2008, some friendships have fallen by the wayside. My friend visited me at my house when I was initially diagnosed. But after many years of illness, patients get fewer visitors. Our relationship was no exception.

When Loved Ones Forget That You’re Still Sick

When you’re dealing with chronic illness and you’re young, sometimes it feels like life is passing you by. I’m lying here in bed while my Facebook newsfeed is filled with engagement rings, sonograms, and wedding pictures.   When illness is represented in movies, there is typically a neat beginning-middle-end storyline. Either the patient is cured or dies. For people with incurable illnesses, there is no end. Sometimes our loved ones forget that we are still struggling or they get caught up in the busyness of life. As I blogged about in 5 Reasons People Abandon a Sick Friend, good people can fall prey to Dunbar’s Number. The brain’s prefrontal cortex is limited. Basically, a person is only capable of handling 148 meaningful relationships at one time. As people experience major transitions (moving away, going to graduate school, getting married), some friendships fade away. On the flipside, some of those friendships resume later in life.

Today: Plans Interrupted

photo-79Today, I had my bags all packed for a road trip to see my good friend, Cynthia, who is undergoing chemotherapy. As I previously blogged about, I’ve been with her through two chemo sessions at Cancer Treatment Centers of America. We actually connected through this blog and met for the first time at CTCA.  I “vacationized” our last hospital visit. I brought leis, gave her a facial, did her makeup, and we took fabulous vacation pictures. Cynthia called it our “Maui Vacation.” Today’s visit was especially important since it is Cynthia’s last chemo session and her birthday. I was armed with a birthday cupcake, balloons, party sunglasses, and whatever you call those horns people blow on from the party store. As I was getting ready, Cynthia called me to tell me she had a bad fever. Translation: I shouldn’t come.

Not On the Outside This Time

As someone who has fibromyalgia (yes she has fibro in addition to cancer!), Cynthia understands my constant autoimmune struggles. I felt defeated at first. It felt like my illnesses (I have five: bipolar 2, polycystic ovarian syndrome, Myasthenia Gravis, asthma, and psoriasis) took yet another important event away from me. Even though intellectually I knew it was not true, I also felt like I let Cynthia down.  But Cynthia promised that we would indeed celebrate her birthday together. Today was the first time I ever did Face Time. Despite my absence, Cynthia and I were able to see each other over our iPhones. photo-80The CTCA Kitchen baked a delicious chocolate cake for her. While she was eating her cake (for the both of us), I was eating her cupcake. We swapped stories about our struggles, blessings, and laughed over girl talk (stuff I can’t blog about).

Sometimes Illness Doesn’t Win

So, yes illness has taken away some of my relationships. But today I was reminded that illness doesn’t take away everything. Indeed, there are some bonds too strong for illness to break. If I didn’t have these five illnesses, this blog would not exist. And I would be deprived of the joy of knowing Cynthia. I wish that every sick person would know what it’s like to have a partner on his/her journey. I wish that each person reading this would not always be on the outside looking in. That is why I started this blog and our Facebook page.

–Your Stylist, Jessica Gimeno 

Related: 4 Tips for Avoiding Social Media Depression

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JessicaGimeno

Hi, I have five illnesses--bipolar disorder, myasthenia gravis (neuromuscular autoimmune disease), polycystic ovarian syndrome, asthma, and psoriasis. Most of the organs in my body are affected. I'm dedicated to being a stylist for sick women. As someone who has experienced changes in my appearance due to my 12 meds (including Prednisone), I know how hard it can be when your face and body change overnight. (In fact, because of treatment, between 2008 to 2010, I went from a size 0 to a size 10. While I lost the weight, there are permanent changes in my face and body, which I've grown to appreciate.) My blog will also help women deal with other issues like surviving chronic pain and fatigue. Healthy people can also use this blog as a window into what life with illness is like. Let this website be a place where we can draw strength from each other despite our illnesses and find solutions to our everyday challenges!

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