Living with an invisible illness

I know this is a bit of a stray from my normal posts here. But, this subject is very personal for me and, I know, many others.

Many debilitating illnesses and diseases out there can be observed by others whether by symptoms, tools necessary to get by or, even sometimes just by name. People with an oxygen tank, a cast, a bald head and no eye brows all trigger a sympathy and understanding in people. These things legitimize an illness with something we can see. But, many of us are suffering in silence or disbelief on our own because what we battle within ourselves isn't seen by others with outward signs and clues. Whether it's a mental illness like depression, a disease like Lupus, a hormone imbalance like Cushing's Disease or something truly new and not understood yet by the medical community, so many of us a trying to deal with an interrupted life that outwardly no one else can validate. I'm one of those people.

I'd never been happier or more complete. I was finally happy with my physical self. I had my dream husband. We had bought a house, which was a lifelong dream of mine. It was a fixer up, but that was fine. I loved to fix things and this really meant we'd make it our own. About 6 months after we moved in, I got sick. It was bad, like really bad. I still remember the vivid fever dreams I had and the constant hot and cold my body was experiencing at the same time. After being out of work for a week with the bug, I went to the doctor to called it the flu. He gave me some antibiotics for the pneumonia that sounded like it could be developing in my chest and told me to rest.

2 weeks went by and I still felt totally drained. I felt the same mentally and physically weakness and exhaustion that most people experience when the flu just starts to turn around. I felt that groggy, disconnected feeling that you feel with the conflicting day time and night time flu medications. It was generally more like I was taking the night time version during the day.

I had no choice but to return to work. Sitting at my desk trying to focus was like trying to play chess with a hangover after a red eye flight and 3 hours of sleep. I'd find myself not really reading the words in front of me but just following lines of text left to right, losing track of the purpose. My eyes were so heavy I'd doze off. All of my breaks were spent napping. I'd get home and fall asleep almost immediately for a few hours. I'd get up, eat, shower and go to bed for the night. During the times that I was pushing myself to do physical things, my muscles would quickly give out, rendering themselves useless.  I likened it unto the old fashioned punishment were someone was forced to hold buckets of water out at arms lengths for long periods of time. When you put the buckets down, you muscles are just exhausted and unable to function properly. But, this was my whole body. My chest began to hurt. It felt like I had an elephant sitting on it most of the time. This made it feel like like the littlest most basic tasks were a rigorous workout, causing my heart and lungs to overwork themselves.

I spent over a year complaining about these ailments to my multiple doctors, who in the interim, prescribed me loads of antidepressants and anti anxiety pills and referred me to specialists that made zero sense to me. First, they put my a trial of every anti depressant in the book. Despite me telling them that I still wanted to to participate in the things I enjoyed and that I wasn't avoiding them. They were sure this was just a simple case of the blues. Next, I was put on ambien. My body didn't seem to know when it was time to sleep and when it was time to wake up. So, they figured I was getting proper sleep and proper times. The ambien should fix that. Then, they did a slew of EKGs and pulmonary tests because of the chest pain I was experiencing. My heart rate was really elevated, but everything read fine. They were convinced the chest pain and difficulty breathing was actually an anxiety disorder. So, they put me on depressants. They tried Clonopin and Valium. I hated those. They made me even more tired and did absolutely nothing for the pain and pressure in my chest. Sometimes they helped me not care about it, but there were still periods of hours, if not days, of the sensation that didn't cease.

Finally, they made a diagnosis of Chronic Fatigue Syndrome. They really hesitated, but they put me on stimulants usually intended to treat ADHD and I began to feel like myself again. At least there was an improvement. After just over a year at the maximum legal dosage of Amphetamine, there was a drastic shortage for the drug on the market. Being without it was hell. I was unable to stay awake or do anything. I was sleeping about 18 hours a day in total if not more.

I was switched over to Vyvanse and again gained back a fair ability to live. This seemed like a miracle for a couple years. When I started growing a tolerance to this, my doctor went back to thinking this was a psychological issue. Despite their diagnosis, the doctor was questioning my symptoms, my experience at life. I felt ignored. I felt devalued. I felt crazy. I tried a couple other doctors, knowing my doctor should care not just for me but about it. They refused to prescribe the medications I HAD to have to just function at all.

Meanwhile, I'm losing the ability to care for myself. My health and even hygiene are suffering because of the physical limitation I'm now experiencing. I have to avoid driving because of my tendency to be so tired. I can't stand for any length of time, let alone walk or exert myself without feeling light headed, dizzy and like my heart is going to leap out of my chest. I'd even gone to the ER with severe chest pain.

The ER doctor legitimized my experience, stating that I seemed to have an auto immune disease, but nothing life threatening so she couldn't do anything further.  There was inexplicable swelling in my chest around my heart and lungs, but she didn't know why. When I went back to my GP as a follow up, he told me that figuring out what was going on with me was 'beyond his pay grade'.

Because no one can quantify or justify how I'm feeling, they won't help me address it. Because there are no tests, cure, medication or even treatment for Chronic Fatigue Syndrome, it's a truly invisible disease. Many doctors don't know about the disease or are misinformed about it. It wasn't even until very recently that the CDC has recognized the disease and in an attempt to have it taken more seriously renamed the disease as Myalgic Encephalomyelitis.

Despite it becoming more recognized in the medical community, the general population still doesn't get it. They think it's a PC term for lazy or tired. I can't even count how many times I've tried to explain my disease to someone and they've said they think they might have it too or that they get that way sometimes. Generally, they think it's a bullshit excuse given by lazy, fat people.

My own family doesn't understand or believe my diagnosis. They believe it's laziness. They believe I'm being tested by God or am cursed or even possessed. They constantly remind me that if I were to refuse to be tired, prayed and read the Word, I'd be fine. They think I just need to push through and get off my ass. They tell me to go to bed earlier, quit relying on the poisons the doctors prescribe and get right with God. My own flesh and blood invalidate my experience and suffering because they can't see it. They can't quantify it was a positive test and a clean spirit.

I think a big part of the stigma and disregard for the disease is the original name. CFS is so much more than not having energy/ feeling fatigued. That's something every human being faces, especially with age. But, when it's mental and physical and nothing helps - no amount of sleep, naps, caffeine, vacations recharge your batteries, it's more. It's debilitating. No joke, no exaggeration, debilitating. There are now ALWAYS things I can't physically do without collapsing and the risk of cardiac event. I can't walk my dogs. I can't exercise. I can't clean. I can't do anything that elevates my heart rate. Not I don't want to or I don't like to. I can't, as in it's not an option. Often, I can't focus. I can't move much and sitting still makes me both stir crazy and sleepy. I have a very hard time staying awake or focusing on a movie or book.

Living with this disease is like being in solitary confinement, in prison inside yourself. I feel trapped inside myself all the time. Losing my ability to do so many things, I'm reliant on a small handful of people that love me and care. I can see their frustration, and sometimes even, disbelief in what I'm experiencing. I don't blame them. I've always been independent. I don't like people doing things for me. It makes me feel weak; like a failure. But, I am. I've become a burden to those that I love with little to nothing to offer in return.

Being unable to live your life, to be a burden and disappointment to others and all because of something invisible, something unquantifiable is hell. It's extremely excluding and lonely.

It's not just me and not just CFS/ME sufferers. So many people suffer in silence of diseases that you can't see or relate to. We don't question the existence or presence of other planets and galaxies or magnets or gravity. We can't see them. Most of us can't explain them in any real capacity, but we validate them. We don't question them.

Next time you meet someone, even talk to someone with an invisible illness, don't invalidate them. If you haven't been diagnosed with the same, don't try to relate your everyday life to their experience unless it's with pure sympathy and pity. Otherwise, it feels like your experience with an invisible disease is little, minor things. Please be a decent human being; ask if there's anything you can do to help. Ask them if they want to talk about it and just listen- without advice.Those with invisible illnesses are usually suffering alone. But, we are suffering, whether you see it or not.