“You want to love me
Underneath it all.”
-From the Gwen Stefani/ Dave Stewart song
“Will you see my cousin?”
My good friend’s very worried about her cousin’s deterioration. She has seen a couple of doctors and seems to be getting worse. As so often happens, she has managed all her responsibilities well until now, when she all of a sudden feels her world is falling apart. A disease several months old has become an emergency.
“I know you’re busy, but she’s in pain… Could you see her soon?”
Of course. She can move right to the top of the line. We’ll get her in.
I came in early to see her; so did my staff. She’s tall; elegant; slender. Striking. The kind of woman who owns a room five minutes after she walks into it. The kind of woman who knows that she owns the room. She’s a successful junior executive. Lives with her husband, and their two kids, and there is his child from another relationship who’s often around. She takes care of work and all of its meetings and travel; school; after school stuff; church; volunteerisms; household. And yes: she manages to look beautiful and be loving at any and all times.
What can I do for you?
There was this back pain for years; she somehow managed to ignore it because she was busy. The past two months she has seen a rash; then joints and muscles that she never knew that she had began to hurt. It was hard to leave her bed in the morning. When her fingers began to turn and she felt completely drained by two in the afternoon she realized that something was terribly wrong.
She saw a doctor. All the blood tests were normal. She was told to take Advil. She saw a specialist; more normal tests. He suggested another specialist.
Her children are upset: mom does not cater to them as much. Her boss has more work that needs to be finished by yesterday. Her husband, God love him, tries to help: he cooked mac and cheese one night. One. And he wonders if there’s anything wrong with him, because she’s not quite as sexy as she normally is.
The third doctor will see her in two months. She’s despondent. This is when her cousin, who’s in health care, called me up.
After five minutes of listening to her I know what she had. A brief exam confirms my suspicion.
You’re sick. You need stronger medicine.
“But the negative blood tests…”
They’re always negative in this condition. Which makes it hard on the patient. She feels crummy and no one seems to know what’s wrong.
She nods.
To make matters worse, the rest of the patient’s world will not stop making demands on her. Children don’t get it; bosses have deadlines and no time for understanding. And husbands are generally clueless; they’re used to everything being done for them.
She begins to cry. I can tell that it’s not from physical pain.
I understand how you feel. Alone. As long as you’re healthy you can do all of the things expected of you; when you slip there’s nobody there to pick up the load.
More nods; more tears.
You’ve been sick a long time. Your back pain was the first clue; it’s just that you had things to do and no time to think of your pain. You’re the rock.
Now there’s a veritable gale of tears; sobs; she feels that she cannot stop.
You’ll be OK. Your prognosis is good. We’ll have to become good friends; there are a lot of visits and procedures down the road. Many potential side effects. But people like you do well. The kids will be happy; your boss will give you promotions. And your clueless husband will get his wife back.
She smiles.
“Thank you.”
I just told you that you have a serious illness that will inconvenience you, and you thank me?
She smiles again. She knows that I’m kidding.
“You listened. I don’t care how bad the news will be; I just need to know what it is, and that I’m not crazy.”
Words that I’ve heard hundreds of times in the past. If only someone would listen. If only the people who depend on me would understand. If only someone, anyone, can look underneath the beauty and the striking efficiency to see a struggling soul.
We rarely want to see the weakness in the people that we love. We don’t want to deal with their annoying habits, or their mismatched clothes, or their occasional illnesses. By expecting to always see the same characteristics that make us love them we miss the opportunity to solidify the relationship. Had her boss realized there was a problem, and helped her lighten her load, he would have gained a loyal employee for life. Her children and her husband did the same; they now will have a lot of ground to make up.
Do you really love me underneath it all?
It was 1999 when I got my diagnosis of autoimmune disease. I had known for years there was something wrong; migraines, rashes, joint and muscle aches, fatigue, fevers, nausea, etc. I was relieved to finally get a diagnosis. I cried because my life had to change. I cried because my husband’s life had to change. Even though I have my husband’s support, I still feel guilty that because of me he doesn’t have his “beach buddy”, or that he misses out on activities like float trips that we used to enjoy together (the sun is no longer my friend). I would be there for him if he needed me, just as he is here for me. It is so difficult to know that I’ve changed the outcome of his life, even though it seems to bother me more than it does him. What does matter is that we are still here, still going through this together.
I’ve been there. The loneliness has to do with the incomprehension of the people around you. When you look “good” most of the time many people don’t understand how hard it is inside of you, the need to be accepted with your shortcomings. The other day I was having lunch with my two loving sisters. I asked for a ginger aile with a drop of wine, just a drop for a flavor. The theme of my sickness came around, I told them that I was on metrotexate and excersizing. I was feeling fine most of the time, but there are times when I know the feeling of the sickness coming back. I was telling them that a very deep fear comes back to my mind when I have to pray to God to handle it. All of a sudden, both of them at the same time say….”and you are drinking…? with Metrotexate? you can die…it is a very toxic medicine. I had to answer on the spur of the moment to this very demanding questioning… “better if I die, rather than go through the pains again”, and the doctor says: “and what about us, you would live us like that”… (she is a smart doctor)…and without thinking it twice I answered: “you know, after all it is me who is hurting, not you, and I rather die…than be back in such an horrorific pain. As I write this note, tears are falling down my chicks, honest tears. When someone understands your sickness and your pain, that person becomes your real and truthful family. Thanks.
Thank God for your caring way. I guess I haven’t ever had a very serious illness. I’m not sure just how I would react. But to just know that there is a name and a possible cure is such a relief.
I think it is tough when you are hit with any kind of medical problem that can/does change your life as you like it. It is equally tough on everyone around you. I recently had a medical problem and I have been in good health my 72 years and i do not even take any medications. I tried to always have a positive attitude and surround myself with positive family and friends. But at times I did have a “pity party” (as I called it) because I was worried about activities that I could or could not do. But everything has gone well and I was able to do resume life as I knew it. I have many people to thank for helping when I needed them the most.
I had my wife Audrey write this reply.