Thank you for coming to read my blog. Before you read this post, you may want to read this post as this is part of a continuing series I am just starting.
I wrote this post in December of 2011. It was meant to be a stand alone post that I wanted to be posted on another blog because I was too afraid and upset to post it on my own blog. Although I did not want to put it on my blog I felt that what had happened to me has happened to thousands like me and it was a story that deserved to be told.
I am no longer afraid or ashamed. As I continue to write this series, I continue to take back my life.
My hope is that those of you with chronic illness will gain comfort from it, and those of you are not can feel what it is like, if only for as long as you read this, for those of us who continue to lose family and friends every day just because we had the misfortune to get sick.
I ask from you that if this post touches you, if you get it, whether well or sick, that you share it.
Thank you and be well,
This past summer I had been very sick with my Lupus. I was flaring, and the drug I am taking to suppress the disease was working too well, with me catching every little infection.
Lupus, like many Invisible Illnesses is so unpredictable. You can have a diagnosis and live a pretty long life and even be able to keep on working. Or you can get very sick from complications of Lupus and die. This summer I came close to the negative end of the spectrum.
Because of this, I realized that I wanted to make amends with the woman who had been my best friend for over 20 years. “Jennifer” was the type of person who called them as she saw them. She was as quick to give a compliment as she was an insult. She almost had “no filter”. She spoke her mind, whether it was good or bad, she would always tell you the truth. As we got older, a lot of people would tell me, “I don’t know how you could be best friends with her”. But her love and devotion to me was fierce.
I broke off our friendship in 1999 when I realized that I could no longer accept her value system or the way she lived her life. We had gone to college together. I, with the mindset of learning a career so that when I married I could always be financially independent, and if something ever happened in my marriage I could leave with my children and stand on my own. “Jennifer” did not have any such plans. After college she maxed out her credit cards and enjoyed life. She did not seek to use her degree. When I asked her how she was ever going to pay it off she told me, “I am going to marry someone to pay it off for me.” And in 1999, when she did find that someone, I finally ended the friendship.
But when I came close to death, I started thinking of the 20 years we had had from age 9 to 29, especially our childhood, high school and college, that were good, were, if fact, wonderful. I felt that someone who has been married for 12 years and is now a parent of a five-year-old had to have changed after all this time. For a few years, Jennifer had been in my “People You May Know” on Facebook. From time to time I would look at her Facebook and sometimes I would cry. I would see her trips to Italy, to London, her two homes. I wasn’t jealous of her, I was upset that in 2008 my body decided to quit on me and I had to give up my career. If I had not gotten sick, maybe I would have been able to take those trips too, and have a nice home instead of living with my family in a too small apartment.
And in August I finally pressed the “Friend” on Face Book with the message, “Can we try being friends on Face Book?”
Immediately Jennifer wrote me back, accepting my friendship. She wrote that she was so happy that I had done this. She had mourned me for twelve years and had never replaced me as a best friend. She had never been able to find the intimacy, the sisterhood that we had with anyone else. She told me that yes, she does have money but that she does not care about those kinds of things any more. We each had one child, both boys, when we had dreamed of having little girls our whole lives, and had both been amazed at how great having a son could be. Our kids were both starting kindergarten in the Fall. She had been keeping tabs on me for years through our many mutual friends.
She asked me why I had broken up the friendship and when I started to tell her some things, she told me she had never said them. I told her I wanted to live in the present with her and look towards the future and I said it was because I was so sick that I decided I wanted to reach out to her.
We decided to get together at a park that we had both never been to. Neutral territory. When we saw each other’s children it was like looking at a mini version of us as children, only the kids were boys. She started to cry when she saw my son. “Oh my God, he looks so much like your dad, don’t you see it?”
Jennifer picked us up at our apartment due to me not being able to drive too much because of my illnesses. I was wearing bandages on my knees and wrists due to joint instability. The day went better than I expected. Our children fell into step with each other as we had when we were little and my son had the best, most peaceful play date he had ever had. While they played we ate our picnic lunch. I filled her in on when I first became sick and how things were now, she had a lot of questions. I told her about my battle to receive SSDI and how horrific my trial had been. I told her about the support groups and Twitter and the friends I had made. People who were just like me, who had literally prevented me from taking my life when times were extremely rough. After the park she drove me home and I let her see my apartment, something my Anxiety never lets me do because it is always a wreck due to my being too physically ill to keep up with it. We made long term plans. I gave her my blog website, something I rarely do as I write under a pen name for my family’s protection. I was so happy that I decided to do this and hoped that we could move on with our new life together and start fresh.
We planned to get together again but both had busy schedules. We emailed and called each other.
In September I received the results of the exams that the Disability Judge had ordered me to take. I was shocked to see that major things, such as one of the doctors making me scream in pain, were omitted. Some things were out and out lies. They had written “yes” when I told them “no”. My husband wasn’t home and since we had become close again I decided to call Jennifer. I started to tell her what had happened and she said, “Wait. Can I say something? I have been reading your blog and I feel you are exaggerating your illnesses. I spent a whole day with you. You were fine.” “I took a pain killer that is stronger than morphine when you weren’t looking so I could continue to be ‘fine'”, I told her.
“I think you are not as sick as you make yourself out to be.”
“I have 15 diagnoses, are you saying that I am making them up?”
“No”, she sighed. “Emily, I think that you have surrounded yourself with people like you whom all lay in they beds with their hand to their head and say ‘Woe is me’.”
I had just received about the worst news one could possibly receive for a disability case. I called Jennifer looking for comfort but instead my shock only deepened. “So, you don’t believe I am this sick.”
“I think that something has happened to your brain. You are sick but I think the worst problems you have are mental illnesses that are making you believe that you are sicker than you really are.”
“Wow. That’s all I can say is ‘wow’. I reached out to you because I needed my best friend, because I believe that I do not have much time left and this is what you say to me?! I can’t do this!”
I hung up on her.
Twelve years had not changed Jennifer. She was still the same. Quick to judge, quick to decide what was right and what was wrong.
This may be an extreme case, Jennifer is definitely a person of extremes. But how many of us have had that happen to us with our family and friends? Our loved ones whom somewhere along the way must have gotten their degree in Rheumatology or Psychiatry and feel they have the right to judge us.
At this point in my life, I need people who are going to believe me. Maybe saying that I have 15 diagnoses sounds crazy, but that doesn’t make it any less true. And a person knows exactly how sick he or she is and if they do believe their life is to be drastically shortened, that belief deserves to be respected.
I have lost so many friends and family due to my illnesses and my continuing decline. I have three friends whom I know will stick with me no matter what, along with my husband and some family members. That’s all I need to be with me, no matter how bad it gets or how long I live.