I haven’t told many people

The summer before I got sick.

I haven’t told many people what’s wrong with me.

When I wonder why I haven’t told people, my mind wonders back to the time I first met this girl named Colleen. I was 19, and she was in her mid to late twenties. I was in college at the time. Truth is, I can barely remember any college friends’ names now, but recently, images and memories of Colleen keep resurfacing in my mind.

Before I tell my story, I need to first introduce you all to Colleen. She looked like a normal girl, blonde hair, kind face, mellow looking. Except, she arrived to class every Tuesday afternoon in a wheelchair. One of her friends drove her to class and pushed her up a ramp into the classroom. So, one day during the beginning of the semester, Colleen stood up and told the class about herself. She said that she was very lonely and was looking to make friends, which was the main reason she was taking the class. She shared how she was able to walk, but used the chair when alone due to severe fatigue and dizziness that came on unexpectedly. She shared how she had nausea every day, anxiety, depression, and low blood pressure. She shared how she often felt like passing out due to low blood sugar, so she had to eat in class but promised not to eat crunchy foods that would distract the class. She ended by saying she welcomed anyone to reach out to her who wanted to become a friend.

I introduced myself after class and we arranged to meet up for dinner. I was surprised when Colleen showed up driving her own car. Wait. She used a wheelchair, but could also drive and walked herself into the restaurant? Hmmm. Well. We ate at the Olive Garden, and Colleen didn’t say that much or seem too animated. She didn’t seem like she was having fun, and she spoke very slowly. Afterwards, we walked over to the local mall and browsed through some furniture. Colleen sat down on one of the sofas and asked if I minded if we just sat there on the sofas for awhile. I said sure, and we sat there with not much to talk about for quite some time. I felt awkward but tried not to show it.  Colleen was apologizing that she didn’t speak much at the restaurant. She said that she was feeling anxiety, and it made her weak and dizzy with an upset stomach. I said, “Oh I’m so sorry! I didn’t want to make you anxious at all!” I was trying my best to appear calm and cool, so that it would translate to her. But Colleen said that the anxiety was uncontrollable, and came on even when there was nothing to be anxious about. I tried to comprehend that, but couldn’t. Then Colleen said that she felt very tired and sick, and that she should head home. When we got up to walk, she walked extremely slowly and didn’t speak at all. I was concerned that she wouldn’t make it to her car alright, and that it wasn’t safe for her to be driving like that. I brought up my concern, but Colleen said that she would be ok once she sat down and relaxed in her car for a little bit.

I felt awful letting her leave my sight, and stayed in my car trying to watch for her, but I lost sight of her. I didn’t call her to see if she made it home ok because I didn’t want to seem too pushy, but I could barely sleep that night worrying about her. Later that week I called her and was so relieved when she picked up the phone. Whew! She was alive. We set up a time where I could go visit with her at her house.

Colleen lived downstairs in her parents’ basement. It was a nice house, but the basement was dark and gloomy, as there weren’t any windows. I felt trapped in there, and felt antsy because I wasn’t used to just sitting and talking. We sat down and made small talk. Colleen was telling me how she had hoped to meet a man in class, as her big dream in life was to get married and have kids. A few times during our conversation, she broke down and started crying. We talked about her symptoms, and she explained what it was like to have Chronic Fatigue. That was the name of her illness, Chronic Fatigue. She said that some days she was so depressed, she could barely get out of bed. I told her that walking outside in the sunshine always cheered me up, and she responded that she would love to go walking, but she felt so tired and sick that it was hard for her to do that.

Suddenly, a warning bell went off in my head. Wait. She was able to walk into the restaurant the other day, and walk in the mall, but she wasn’t able to go on a walk outdoors? I looked at my friend, who was much bigger and heavier than I was. I saw how gloomy and overweight she was, and thought, “Why, this girl is just lazy and depressed! She doesn’t walk, and lives down here in this dark basement. She has herself to blame. She is not trying hard enough.” I instantly felt myself withdrawing from her, and wanting to end the friendship. Colleen sighed, reaching into her jar of Hershey’s Kisses and offering me one. She said, “I know I’m not supposed to have chocolate, but some days this is all that keeps me going.”

“Ah hah,” I thought, “She purposely doesn’t eat well. She has brought on her weight and depression by herself. I don’t have pity for her anymore.” I took the Hershey’s Kiss but didn’t open it. I was worried that if I ate anything with her, I would end up getting nauseous, since she had mentioned that she was nauseous on and off every day. I figured she was one of those people that just got a stomach bug very often, and I didn’t want to catch her stomach bug. I made an excuse saying that I had to get going, and that I would call her so we could hang out again. I never called her again.

I went home and told my mom that I didn’t think Colleen had Chronic Fatigue. I shared my suspicions with my mom and told her that I intuitively sensed that Colleen was actually just simply lazy, and that she brought her problems on herself. I felt bad for her that she was concocting all this misery for herself just to get attention. Not my cup of tea. I soon forgot about Colleen and moved on with my busy life.

Fast forward fifteen years later. For my entire life, I had been super ambitious, super determined, a super achiever, always active, always busy. I’ve been blessed with a generally sunny, warm, positive personality and people have often remarked how calm, relaxed and chill I was. I’ve worked hard, achieved all my career goals, was successful, independent, in shape, healthy, very optimistic, and on top of my game.

Now stop the clock as soon as I turn age 33 and a half.  Take a huge black sharpie marker and cross a big huge X over my happy lifestyle, personality, stability, temperament, physical health, emotional health, and psychological health. Dig that X deep and firm, so that every positive trait and  positive aspect of my life flips over on the page to reveal the dark underbelly of the exact opposite trait.

I used to be fearless. I dreamed big and knew no limits. I rode on the back of motorcycles in the dark with strange men I didn’t know. I traveled on my own across the US and other countries, flying by myself and making plans on the spur of the moment. I left my hometown with a guy who promised to marry me, and I didn’t tell my parents. Several months later, he ended up tricking me into marrying him for his green card, but heh. I moved from Pennsylvania to NYC without knowing where I’d stay, and without having a job there. I was so psyched that I’d get a job as a teacher in NYC that I moved there by myself without telling anyone, got my own apartment, and was living there several weeks before I landed a job. My dream job at that time, the beginning of my career as a teacher. I didn’t tell my family until Christmas, three months after living there. They had no clue I wasn’t even in my hometown, and I hadn’t told them because I wanted to go out on this adventure by myself, without them warning me not to go. I was fearless. I was out to conquer the world.

But then suddenly at age 33 and a half, my fearlessness morphs and suddenly my body is trapped in an excruciating 24/7 battle with anxiety. I would describe it, but it still feels like such as alien existence that I can’t put it into words. Also, pinning it on paper would give me ownership of the condition, and I will never willingly claim this condition as something intrinsic to me. It’s not me. It’s so foreign and unlike who I really am.

Happy. I used to be happy. The only thing that brought me down occasionally was the fact that college was taking so long to complete, and every now and then I would break up with a boyfriend. But the boyfriend misery was remedied with a pint of Ben and Jerry’s. There was nothing that ice cream, especially mint chocolate chip ice cream, or coffee ice cream with heath bar pieces, or chocolate ice cream with Oreo… couldn’t fix.

Until the clock stopped for me at age 33 and a half. Suddenly I am crying over the slightest little thing, seeing darkness everywhere, lethargic and slow, walking into cars of oncoming traffic and not blinking an eye when a car grazes me, wishing I was dead, walking like a zombie, not able to appreciate the fine flavors of food anymore, not able to appreciate the beauty in colors, not interested in sex, lacking drive, ambition… basically… depressed.

Energetic. I used to be the energizer bunny. Go, go, go. Working full time as a teacher, finishing my master’s degree, dating 3-4 guys at once, rollerblading in Central Park, going out to dinners and clubs with friends, travelling, shopping, I rarely stopped to just sit and breath.

Then, boom. At age 33 and a half, I suddenly couldn’t get out of bed. When I went to walk, or lift my arm, or turn my head, it felt like 200 lbs were pulling me downward. When people spoke, I comprehended it in my mind minutes after they were done speaking, never while they were speaking. My words started coming out garbled, or backwards, or not at all. I wasn’t able sometimes to cook dinner, or walk. Sometimes I would go three days without showering because it took much energy to take my clothes on and off. I started getting nausea, hypoglycemia, low blood pressure (dizzy and passing out). Brain fog, loss of memory, bone pain, muscle pain, migraines and tension headaches.

The very cool part about this illness is that on some days, I feel completely normal and healthy for almost 3/4 of the day. This happens once every three months or so. The very uncool part of this illness is that people only see me when I feel good, and they assume that I feel good all the time, since they don’t see me when sick.

I know my family members and acquaintances judge me. Why wouldn’t they? They see me as acting healthy one day, and then hear me say I’m sick the next. There’s nothing out there in popular media or in the medical community detailing the actual reality of this disease. You don’t see TV shows talking about it, you don’t read about it in the news, popular magazines, or books. When I was young and fresh faced and new to the world, I had no clue what this disease was. Everyone knows about diseases like Parkinson’s, Lupus, cancer, MS, asthma, or epilepsy. When you have one of these illnesses, you are still respected. There are no stigmas attached to these illnesses. But there is a stigma attached to Chronic Fatigue. The general public still feels that Chronic Fatigue is a hypochondriac’s condition that lazy, depressed people take on themselves to gain pity. And the medical community doesn’t do much to change this perception.  Doctors will say to a person with Chronic Fatigue,”I can’t find anything wrong with you, so… you’re not sick. It’s all in your head.” In addition, the medical community in general does not go out of it’s way to bring public awareness to this disease. There are no popular brochures out there entitled, “What not to say to a person with Chronic Fatigue,” or “Myths and Realities of Chronic Fatigue.” You’d think that people in chronic fatigue communities would fight back to gain recognition and validity of this illness, but these poor people are so sick, they don’t have the energy to get out of bed, let alone fight the mainstream medical community.

So when a person has Chronic Fatigue, they will need to come to expect being doubted. They will need to understand that the average person will not believe they are really sick. Heck! When I was 19, I considered myself to be a compassionate, understanding person. I have always been drawn to the underdog, to the suffering, misunderstood person in the crowd. And yet, even with the depths of compassion I had, I read Colleen wrong. If a compassionate person will misjudge someone with this illness, think about what an average healthy person will think.

This is why I don’t tell people I’m sick. With Chronic Fatigue, it’s better to keep your mouth closed, because this is still an illness that only depressed, lazy hypochondriacs get.

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4 thoughts on “I haven’t told many people

  1. Dear AJ, I'm so sorry. This sounds horrific! Thank you for taking the time to describe the illness. I have a colleague with Chronic Fatigue and I never really understand what it meant. All the best to you! (Lovely photo, by the way.)

  2. My son was diagnosed with CF and Fibromyalgia when he was 14. Watching a healthy young boy become a depressed, overweight, completely different person is a hell I wish on no one. We found a Chronic Fatigue/Fibromyalgia center and had him treated there for a year and I believe it helped him, but he will probably be like this for the rest of his life. Thank you for sharing your story. I wish you the best.

  3. Thank you for your kind words! 🙂 I am glad my post explained the syndrome a little more. There's not much too much information out there describing the condition. All the best to you, also! <3 <3

    -AJ

  4. Jill, I'm so sorry your son came down with CF and Fibromyalgia. I really have compassion on anyone who gets the illness at such a young age. I am doing a program called Nutritional Balancing through Hair Mineral Analysis that is helping me regain my health. I feel this quiet confidence that I will be back to myself in time, so this gives me a lot of hope. Thank you for your warm words of encouragement! <3 <3

    -AJ

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