"What matters most is how well you walk through the fire" -- Charles Bukowski

Sunday, September 18, 2011

Surrounded By Silence: Chronic Illness and a Lack of Support

"Things change, friends leave, and life doesn't stop for anyone" -- The Perks of Being a Wallflower, Stephen Chbosky

The Chronically Ill Friendship...

Lately I’ve been feeling empty and at a loss for words whenever I try to write a personal post. Part of this has been a slow sense of depression creeping up on me as I deteriorate more and as my friends dwindle out of my life more and more. Thursday’s rheumatologist appointment didn’t help either. 

Dr. S, who I love dearly, explained that because I cannot take steroids and I cannot be on medication to control my disease until after surgery, that I will continue to get worse and our goal must be pain management until my surgical incision heals. She increased the strength of my pain killers and discussed trying Ambien to kick my sleep cycle back to normal. I was also tentatively diagnosed with Still’s Disease, a systemic form of rheumatoid arthritis characterized by fevers, a pink rash, serious organ involvement (lungs, kidneys, spleen, liver, heart), seronegative blood results, and all the other symptoms of RA. I wait for my next round of   to see if my white blood cell count is elevated (tell tale sign of Still’s Disease) and if it is, then the diagnosis will be set in stone. 

Though it is not a huge change for me— the name of the condition does not change what I am physically feeling— it poses new concerns, and the day was draining and further disconnected me from my emotions.
My health aside, I have been struggling with some people in my life and feeling like I need to make some changes, rewrite the script, if you will. I have always been the go-to-girl for help. When I was in kindergarten I came home in tears because I learned of homeless kids in Borneo who did not have tents to sleep in, and I was determined to help. My compassion for others has always been one of my better qualities, yet it can also be a burden.

I promised myself when I was diagnosed that it was time to focus on myself, to be compassionate for myself first so that I was better able to then focus on my friends and family. I hoped that in light of my debilitating disease and my rapid decline in recent weeks, my friends would step up to the plate. Perhaps, volunteer to help out or just pop in from time to time. Or, even simply, to let me know that they were around or ask how my day was.

Yet despite how sick I’ve been, I find myself surrounded by silence. Not a single one of my friends (those of which that have the ability and aren't struggling with larger issues than their social life) that I have supported and consoled in recent weeks (and I’ve done a lot of it recently) has done the same for me. Those that went back to school I have rarely heard from and those that remain come to me for support, but do not often dish it out. I don’t think a single one of them realizes I’m bedridden or that I have organ involvement.

I could be bitter and angry ...and I admit, a part of me is bitter and angry, but I am slowly realizing that this is the nature of having a chronic illness at 19-20. Though I don’t think it should be that way. I believe that at such a young age, I am the first person most of my friends have in their life with a major illness. They have not yet learned how to give as an adult. My family friends, aunts, uncles, they have all experienced a friend or loved one with an illness. Experience does matter and so does perspective— perspective that comes with maturity and age.

My peers are worrying about the next exam, paying rent, how they’re going to afford their next pick up of weed, if their recent hookup is going anywhere-- typical of a college student. I’m here worrying about how I am going to physically get through the next eight hours. All of the things that once seemed important to me now pale in comparison. I don’t sweat the small stuff. I do not focus on the trivial, nor do I have the energy to.

I don’t think my small circle of friends will change. I do not actually expect that many of them will read this (only 11 out of the 50+ friends I sent my facebook link to actually responded), but I hope that this resonates with those of you that do read this. I also don’t take their silence too personally; it is a product of timing and maturity for the most part.

My point here is, if you know someone suffering from a chronic and debilitating disease, step outside of yourself. Don’t give them the “I wish there was something I could do” nonsense (most of the time it is nonsense). There is something you can do and it is very simple: be a friend. Offer to grocery shop with or for them, suggest an outing that is do-able and might lift their spirits, stop by and watch a movie, send a text and ask how the latest doctor appointment went, offer to accompany them to an appointment, stop by with flowers or send a card. If you see another tumblr user having a bad day, send them a simple “I’m thinking of you.” I like to send quotes that remind me to keep going.

Treat others the way you would like to be treated. End the silence and remember what matters in life. Give love and kindness and you shall receive it. 

Appreciate your health, take care of your body, and don’t forget to be a friend.

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