How do you cope?

My name is Sommer Rabellino, I’m 28 years old and I have Lupus, Fibromyalgia, Sjogdrens Syndrome and quite possibly a few more things I don’t know about. I’ve been sick and in a flair for almost 4 years.

Okay, this isn’t some medical version of AA. I’ve just found healing in talking about the things that affect my body. The diseases I have are not widely known and seriously need attention.  Today’s blog is more about my progression with the effects of telling people I’m sick.

I can give you all the definitions and list all my symptoms but all you really need to know is that having even just one of these diseases or any other autoimmune or chronic pain disease is like playing roulette, except instead of numbers you insert a different variation of symptoms.  Then you get to play multiple times throughout the day because that’s how often our symptoms can change from bad to worse to better again. No patient reacts the same to environmental triggers; no patient’s symptoms are the same; no patient’s medical treatment plan is the same.  I guess we’re all unique like snowflakes but look exactly the same when lumped into a snowman.

I hate to admit this, but I’m actually starting to enjoy studying the responses people have when I tell them about my diseases and there subsequent crappy symptoms. Now don’t get me wrong, I do not tell people to evoke responses to observe. Getting people educated about Lupus and fibro is why I talk freely about my health. Some patients stay very private about how their body betrays them. There is nothing wrong with that, I’m just not one of them. If you have a question, I’ll answer it to the best of my ability. The more people know about these diseases the more support the diagnosed receive. That is why I talk to people about my health issues. Plus, there has always been some level of comfort for me when I talk about it. However the therapy of that comfort has evolved. Sort of like the stages of grief I suppose.

Until recently, I hated listening to people’s responses to my bodies disabilities. Somewhere over the last few months that reaction has changed. Now I savor the response, it tends to tell me a bit about the person I’m talking too. During the process of the education I’m not focusing on the reactions of the person I’m conversing with. The enjoyment doesn’t come until after the situation has passed and I have time to dissect the conversation.  To be honest, this is a whole new development in the way I process the typical ‘I’m sick and these are the things I go through’ conversation.

When I was first diagnosed, talking about my symptoms and the diseases were, in a way, a type of therapy. More than that though talking about it with others helped to educate me. People would ask questions I didn’t know the answer to so I would go look it up. There were so many issues already clouding my mind that many questions had yet been conjured by my brain. I bought a lot of books and wrote a lot of questions for my doctors. It helped. I thought I had accepted the hand I was dealt. Looking back now, I know I had only accepted that I couldn’t change the diagnoses, not the way my body was betraying me.

I started using my lectures as a way to vent.  I wanted the piteous reactions people normally give. I sadly felt entitled to them.  The ‘I’m so sorry’ is the most common response. I wanted to be sarcastic and say “why yes you should be, you are healthy after all.” That was a time with a lot of self-loathing and depression. I suppose the snarkiness I wanted to express came from anger as well.  I can’t forget to mention the constant complaints that came out of my mouth. No one was ever nice enough to tell me to shut up, suck it up and move on. Somehow I came to that conclusion on my own. I’m surprised I didn’t drive my husband insane. But one day I woke up and got sick of hearing people’s pity. I know their just being polite. What else are you supposed to say,  “Glad I didn’t get your lot?” Nonetheless, I didn’t want to hear it anymore.  So instead of wallowing in my own misery, I shut down. I didn’t want to deal anymore.

I went on autopilot. I learned as much as I wanted to about the diseases and answered questions to the best of my knowledge without any thought or judgment about the very things my body was doing. It was a coping mechanism I suppose. I just shut off and distanced myself from the situation. I turned into a hermit, stopped socializing, spent my life in urban fantasy books. The idea was that if I removed all the normal stresses in life that my body would calm down and stop betraying me. My symptoms stayed the same. My doctors called my flare ‘stable’.  Since I didn’t get sicker I suppose my theory worked for a while. Then I pulled my head out of the clouds and started getting angry because I wasn’t getting better and my doctors didn’t see a problem with that. After 2 years of spending my life in a cave and being passive to my health I decided I needed to take a different path and try something else.

Anger is helping me gain bits of myself back. It doesn’t sound healthy, yet it’s waking me up slowly.  The awakening is causing me to accept who I am and who I don’t want to be anymore. Instead of the tunnel vision, with me on one side and me on the other, I started to see how my sickness was affecting others. For 3 years my illness was all about me. I never really thought about how it made others feel. My anger at my health and what I was letting it turn my life into simmered hot enough that I pushed through some of the brain fog that clouded me every day and started assessing all the different aspects of my world. That’s when it hit me that I’d neglected others reactions because I was so focused on my body’s betrayal. At this realization, I felt like a heel. Having never been a self-centered person I couldn’t believe my own narcissism. People would tell me I was being an idiot, that I had every right to be focused on myself given the circumstances. The only problem with that is: I focused on the negative. I was being passive, letting the diseases have their way with me. I thought I had no choice in how my body treated me. When I started getting angry I realized what a fool I’d been. I couldn’t let this rule me. I wouldn’t let this tear me apart. It was time to get proactive rather than reactive.

Easier said than done, yet it is helping. It’s a pin in my ass and when I sit down to give up I yelp and jump back up, figuratively anyways. I still have my moments of moping and narcissism but who doesn’t?

So one thing I enjoy a bit now is how people react. I’ve spent some time rewinding past conversations with people I’m close to. I dissected their reactions trying to figure out why they reacted the way they did. I did this because some people’s reactions hurt me in the beginning. They showed little interest in my illness and the consequences of it. These were people who were close to me, who had loved me my whole life and I couldn’t figure out why they didn’t want to learn about it. After time the conclusions became clear and it gave an insightful look into how some people cope with bad news.

There are a few that don’t know quite how to process my situation; they don’t know how to cope with my issues. They really have no reaction because they don’t know how to respond. There might be a blank glazed look in their eyes for a while, than they will fill the need to say something and then ask my favorite question, “Isn’t there a cure?” My secret sarcastic side says “Really? Do you think I would have spent the last 4 years being sick every day, lose my career and change my way of life if there was a cure?!??!?!?”

It is a good question though.

I do have 3 diseases; there might be a cure for at least one right? No. The lack of knowledge on the diseases is really disconcerting. But that is a topic for another day.  These people who don’t really react, who don’t ask many questions do it as a way to cope because they don’t know how to in the first place. Ignorance is bliss. It still hurts to know that people I love don’t want to know anything about something that affects every aspect of my life. But now that I understand their reactions I can learn to accept it as a part of who they are and know it’s just how they deal with something difficult.  Good thing I didn’t inherited that coping mechanism, it would have certainly put me in the hospital had I not educated myself. Not understanding what your bodies triggers are can make you even sicker.

Then there are those people who are truly intrigued. They ask question after question to better understand  and you can see a gleam in their eye telling me their wheels are turning, processing the new information. Those are my favorite. I can still be asked questions I don’t know the answers to and have to do some new research. It also tells me their interested in really understanding what makes me sick. They want to know what kinds of things I go through. Knowledge is power and their questions show a need for answers. Their interest may purely be for understandings sake or it may be because of the level of care they have for me, or both. Either way that level of need to know makes my heart warm.

Then there are people in the middle. You know they care because they always ask how your feeling but never quite know what to ask about the diseases because they simply don’t understand. They consistently see us and we look fine, so the details about what are body is doing conflicts with the image they see of us. There is a reason why Lupus, chronic pain and auto-immune diseases are called ‘invisible diseases’.  It’s because they are. We learn quickly to put on a mask when were around others. We roll out of bed, get dressed, paint our faces and walk out the door with our armor, a big smile. Then we pretend we feel fine. For some of us the only way to feel fine is to pretend.

What most people fail to miss is the extra heavy under eye makeup, which masks the purple under eye circles from lack of sleep or consistent pain, or both.  The crinkles around the eyes, maybe tightness around the mouth from the stress of whatever pains were trying to cover up. Light hugs rather than tight ones. The days when hugs are painful seems to affect me the most. The idea that simple touch brings tears to your eyes because of the pain is…emotionally draining. Maybe our speech isn’t as enthusiastic as usual, we might even slur or consistently forget words or restart sentences. We sit more often than stand. We often turn down active outings. We don’t eat much of the food on our plate. We yawn a lot. Maybe have a limp in our walk, or just walk slower than usual. I could go on but I suppose I need to keep some of our secrets. The point is: there are clues to how we are feeling even when we do our best to cover them up. There are some people who can’t physically see why we feel sick therefore we can’t be sick. There is no way to truly convince them of the severity of the illness unless they wanted to come live with me for a few months. Instead I take away the knowledge that they wont really understand without physical manifestations and I hope that will never happen.

So I’ve found some clues about you. Clues to how you’re feeling when I talk to you about my health. Clues to how you deal with bad news. It’s not much in the grand scheme of who I am and the constant attack my body has against itself. But I’ve found a new light at the end of the tunnel and my face isn’t there anymore. I still want to help people understand these diseases and now I have a new tool to help me do it. I don’t have to get upset if I don’t get a particular reaction or if you issue certain statements. Because now I better understand why you react the way you do and accept the coping trait you use.

I’m no psychology major; maybe I’ll take some classes. But I do know this. I’m healing, albeit slowly. And telling you about what ails me is helping me to do that. It truly makes me feel better knowing that I’ve educated one more person in the world about these invisible diseases.  So thank you for reading and hopefully clicking some links below to learn a little about auto-immune and chronic pain diseases. If you have any questions, feel free to ask. If you want to tell me about your reaction, I’d like to hear about that too.

butterfly from Canada

PS

Thank you to Jackie and Daniel for helping to reveal what had been a subconscious process until now.

 

 

Links:
Understanding Lupus

http://www.medicinenet.com/fibromyalgia/article.htm

http://www.sjogrens.org/

Auto_immune_disease

http://en.wikipedia.org/wiki/Fibromyalgia

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2 thoughts on “How do you cope?

  1. You are doing a great job of expressing the complex issues you face with your lupus, sjogrens and fibromyalgia. Finding people who WANT to know about what is really going on instead of the socially acceptable version is an important part of building your support network. The ones who love you unconditionally don’t have to be convinced, they just care and want to support. Those are the ones that matter. Those that refuse to believe you are sick, never will. I advise you to accept them, forgive them, and move on past them. You have the seeds of the power in your post about being a victor and not a victim, proactively making life with lupus, etc. the best it can be for you. Great start up blog… keep at it!

    • Your advise is most welcome! I know some of the things I talk about in reference to my health make people uncomfortable. But like you said, I’m not aiming for socially acceptable. I’m aiming for reality. I’m in the stage of accepting peoples reactions as they come regardless of what they are. Now that I understand them better, I’m able to move on and not take them personally. Thank you so much for reading and responding!!! cheers!

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