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“How are the aches and pains?”

 

There are two sure-fire ways to see who your true friends are: death and disease.

Okay, maybe not death because everyone and their dog will offer condolences. However, disease never fails.

Everyone will say “That’s so awful, please do not hesitate to ask me for help.” I am not going to get into why this comment irritates me (another series!) because only a fraction will follow through.

Ever since I was in the hospital, I saw the difference between true friends and those who said they were. There were the people who showed up at my doorstep, unannounced, with dinner. They were the ones who sat with me while I snoozed and got antsy from laying down all day.

Then there were the people who “freaked out” but did not check in on me for two weeks. FYI: If I was not better after ten days of antibiotics, I was probably dead.

 

These are the people who do not necessarily believe I am ill. Sure, I make jokes and poke fun at my illness. That is how I cope. I have to find it funny or it will destroy me. But what upsets me most is that people belittle my situation because of that. Do you think it is easy watching my body attack itself? Destroy my mobility, my eyesight, my organs? Is it that hard to believe there is something serious under all the jokes?

Being in the hospital was scary…no, let me take that back, waking up that morning, not being able to move from weakness, my head pounding so badly I could not even lift my head, my body sweating but shivering, not feeling pain but knowing something was terribly wrong….that was scary.  When I finally managed to fish my thermometer out of my bedside cabinet and put it under my tongue, I read the final verdict and freaked out.

102.5 degrees?! I never had a fever so high, even as a child. This was serious. My body was no longer capable of fighting infections, lowering body temperature, or keeping itself healthy. A fever this high, just like in cancer patients and all immunosuppressed patients, was life-threatening.

What was I going to do? All I wanted to do was lay there and sleep, close my eyes and hope it went away. I went through the motions, I called my doctor, I called work. I was all set to fall asleep again when my rheumatologist called me and said I had to go to the doctor. I was too weak. He told me I could not stay like this. I had to call 911 and get to a hospital.

I was lucky. It was only a sinus infection: one I already knew I had and was on antibiotics for. Annoying, but it eased my mind. Now all I had to do was recover.

I am not saying every person who knows about my condition needs to google it and understand what I am going through. I am saying these people should not bother to ask about my health if they roll their eyes when they see visible symptoms. Initially they seem caring but when it comes down to the wire their true colors show. They get annoyed, they act like my condition is a burden on them.  I am “crying wolf” or “asking for attention”. This is absurd! When my condition is visible I am suffering. When my condition is invisible, I am suffering. But when they finally notice, these people turn away.

I do not tell people because I want them to feel sorry for me or give me special treatment. I just do not care. I kept this disease a secret for almost three years! Now, it seems pointless to keep it under wraps.

It is lonely knowing I cannot count on anyone else. This comes with the autoimmune territory. It is lonely knowing nobody wants to understand what I am going through. I am alone, I only have myself. I am okay with that. My mother taught me how to take care of myself, be self-sufficient.

I may not need anyone, but it does not mean I do not want to feel connected to people.

After my hospital stay, I felt completely disconnected. I just saw blurs of happy people who just saw the one day stay (nbd, right? I’ve been in the hospital longer) and having to take  time off from work (lucky duck, I wish I could take time off work for being sick!)

I am glad this was a joke to those people. I am glad it was no big deal. I am glad they think it is an excuse for me to pull out when I feel like it. Here’s the truth: It was a big deal. It was my health. It was one more step towards my body falling apart: my body cannot take care of itself without assistance.

 

But, as my best friend says, I do not have to be around those people. I can find new people to hang out with. People who do not know about my condition. She says it sucks to know there are few people in my life who will stick by me but I cannot control what people think of me, I have to live my life to the best of my ability, believe in myself and distance myself from those who do not. My best friend will laugh and call me a “hater” and maybe it is true. I sometimes find myself having very little faith in the human race. People disappoint me because they are superficial, flaky and ingenuous.

After all, words without actions are meaningless, right?

 

Hi, my name is Monica and I have RA.

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