Alienation: The side effect of chronic illness

I've been living with an autoimmune disorder since the end of 2012. I'm not even sure which one exactly. I've only recently learned there are nearly 100 types of this disorder, and many other variations of it have yet to be defined. About one in five of us are living with this type of disease. Someone you know may have it, and you may not even be aware.

Before this disease showed up in my life, I was very active and highly social. While I've gradually become much more stable in my daily life, most days tending to healing, work and home is about all I have bandwidth for. When I break it down it sounds like I lead such a simple life. I wish, most of us wish (even if on a subconscious level).

Take today for example. My fiance and I had just finished breakfast. For once in a long time we actually had a whole weekend day with nothing on the calendar to tend to. I stood up from the breakfast table and suddenly I didn't feel so well. I couldn't quite put my finger on it, it was just a general sense that my respiratory and cardiovascular functions were out of alignment. I could feel my heart thump away in my chest and it felt as though I had to focus a little to catch my breath.

I laid down, and the sensation of my pounding heart intensified. I stayed calm, a challenge when one's body feels as though it may just fatally fail. After several hours of laying in bed, some of the time sleeping, some of the time meditating and some of the time just silently freaking out, things calmed down. My resting heart rate fell from 124 beats per minute to between 80-88. I felt kinda blah the rest of the day, and regarded the event as my body's unique way of letting me know it needed me to lay low this weekend.

My fiance and I were supposed to attend a couple of birthday celebrations tonight. I was looking forward to both of them. I was looking forward to seeing my friends. More and more I see less and less of my friends.

I honestly don't know what's worse, the seeming impasse I'm having with the healing process, which is anything but expeditious or linear, or falling out of bounds with my sphere.

It's hard to explain my body's limitations to people, and quite honestly I can't think of a less inspiring subject to regale people with. Whether I'm able to be social comes down to a couple of things for me. 1) Does it involve food I may have an adverse reaction to? 2) Do I have the wherewithall? Sometimes just standing and mingling takes extra effort, then add being authentic, engaged and interesting into the equation. I know, it's ridiculous to even read that I just wrote that.

There was a time I didn't want to really talk about this disease, partially because I may have been in denial about living with chronic illness, partly because it's such an uninspiring topic, but mostly due to the shortness of breath I had been experiencing. I could barely hold even the briefest of conversations on some days without becoming very fatigued.

I've been very quiet and contemplative today. This evening my fiance and I had a great heart-to-heart. I confessed how much I miss my friends and my sadness around this. I discovered the longer I chart this course, the more I relinquish hope of a full recovery. I acknowledged my fiance's suffering. He would love for us to travel, to visit our lovely seaside village in Mexico. We've not really left home for many, many months. My disease has made him a prisoner. Those are my words, not his.

Through his and my exchange, I gained clarity on what is going well. We are going well. He is an amazing support to me. He is the one who checks in with me regularly, gives me a wonderful sense of feeling cared for and loved despite no longer being the "life of the party." Our home is an amazing sanctuary. I love our home and what we've created it in. I love where we live. The peace and tranquility surrounding our home environment is beautifully idyllic. We have the cutest, sweetest most loving little Daschund. We have a loving and supportive family, well he does mostly. I have my mom, who I deeply care for and love.

There are so many questions yet to be answered. I wonder whether I'll truly ever recover my wellness. I wonder whether I'll be full of vitality daily and rekindle that unbridled enthusiasm for life. I wonder whether I'll ever have that comforting, familiar sense of normalcy around my life again.

I was sad today because I read an article written by a woman with autoimmune disease. It wasn't the article. It was relating to her sense of having become an imposter. I can deal with the disease. I've been dealing with it for about a year. It's the realization I've lost a part of my identity that's much more of a challenge to face. I can physically feel how much more serious I've become. Whereas I used to come at life so playfully.

My hope is, whether I fully recover my health, I can fully recover my self ...