"In order to write about life, first you must live it." ~ Ernest Hemingway

Category: chronic illness (Page 13 of 13)

False Assumptions

Be kind, for everyone you meet is fighting a hard battle. ~ Plato

“Honey, you’re so lucky. You should be grateful you are so young! You don’t have to take all these medications and deal with being sick all the time like the rest of us.”

Oh come the hell on, are you serious? The statement was made to me recently in a doctor’s office by a woman, maybe in her seventies, who is probably quite sweet normally. At that moment though, I just wanted to lunge at her and shake her incessantly. Not one of my finer moments I tell you! It was just myself and two other women sitting in a mini waiting room after our hearing tests; waiting to either see the doctor or take home the person we were responsible for driving there. I had made the mistake of looking up from my very challenging game of video poker and I guess the woman thought that was a perfect time to snag me into her “woe is me” session with the other absolute stranger.

I know, I know, the poor woman probably didn’t mean anything by it. Yes, you could say because I felt down and out that maybe I was oversensitive to her comment. But I have to say, it struck a nerve because it was just another example of how easily we make assumptions about people based on how they look. My autoimmune disease is what many in the chronic illness world would consider an “invisible illness” most of the time. Anyone who has spent more than ten minutes with me knows that in the past few years, I have logged in more hours in doctor’s offices and been on more medications than many people are in their entire lifetime. It is a fact I am not proud of and I can be well, a little sensitive about.

I really could have ignored the comment because reality was, my health concerns were none of her business. However I also felt strongly that I needed to speak up and educate this woman who made such a thoughtless comment to a stranger, however innocent it may have been. So in my head I quickly calculated if it was worth it to educate her about how looks can be deceiving or to just let it go because in the end, I would probably benefit the most from taking the path of least resistance. I decided to compromise. I turned to her and in the most patient voice I could muster, told her that I wished because of my youth that I was healthy and medication-free. I said to her that in actuality, I am currently taking six prescription medications, not to mention several other non-prescription ones because I have a chronic illness that has been difficult to get under control. Her response was simple. She just said “oh, I see” and then turned away to continue comparing notes with the other stranger. I could tell that I caught her off guard though as she appeared slightly embarrassed and I decided finally to just leave well enough alone.

What is the significance of this one simple interaction? Well, like I mentioned, it is a classic example of making assumptions based on what our preconceived notions are of people’s god given physical appearances such as age, weight, skin color and the like. This woman assumed that because I am young, that I am healthy as well. Kind of funny if you think about it because I am young and yet was still sitting in a waiting room for people having hearing tests! In relationship to medical issues, I have found that in this society, looking well is a disadvantage. I have not only encountered it personally, but have met many people who have also faced this challenge. If you have a disease such as lupus, crohn’s disease, depression, or fibromyalgia, there is usually not an outward sign of the fact that you are ill and/or have a disability. Wheelchairs are a concrete sign. So is wearing a scarf because you are losing your hair from chemotherapy. Being so fatigued that picking up three items in a grocery store makes you want to cry is not an outward sign. Crippling pain is not always an outward sign. I am in no way implying that people with no outward signs of illness have it worse or better than those that do. It does mean however that those with these invisible illnesses oftentimes have more explaining to do and well, that does seem to be a bit unfair; as well as tiresome and frustrating.

Now I am guessing that some of you are sitting there and wondering why a person with no outward signs of illness feels like they have to explain themselves anyways. Plain and simple, people just don’t get it sometimes and they can be pretty vocal about that fact. Doctors who don’t know much about autoimmune illnesses oftentimes don’t get it.  The government who determines if I am eligible for social security disability took almost two years to get it. For the most part, I am blessed that many people in my life realize that even though I may look alright, chances may be good that I may not be. The reality is though that I do have to explain myself on a regular basis. I have to explain why after being able to go to the gym one day; I may not be able to meet for a walk with a friend the next day. I have to explain why I cannot presently work. I have to explain the fact that after doing spending several hours volunteering in some capacity, I am down and out for a full three days. I know I look well most of the time. I actually DO feel well a lot of the time but when I don’t, it’s significant. It’s part of having a chronic illness.
While I was writing this blog entry, I thought of the quote from Plato that is used at the beginning of this entry and I decided to include it. I love it, but it’s not entirely accurate in this situation though because the woman in the waiting room was not being unkind. She was making assumptions based on her own ideals and preconceived notions. I think a better rewrite of the quote, for this blog anyways, would be: “Be thoughtful and think before you speak, for everyone you meet is fighting a hard battle.” Lesson here is that you don’t always know exactly what battles other people are fighting, whether they be strangers or even friends/family members. I know I have made assumptions about people based on their appearance or behavior and have been dead wrong. So today I am going to try and remember to think before I speak. I encourage you to do the same….

Photo Courtesy of Chuck Myers

Running A Race I Cannot Win

From the bitterness of disease man learns the sweetness of health. ~ Catalan Proverb

Most of the time I feel like I am running a race, maybe even more like a marathon. There are hills and conditions working against me. There are people cheering me on. I am not running to win; I am just running to cross the line and finish. The problem with this race though is that there is no finish line. This race never ends.

I was driving back from an appointment with my rheumatologist today and these are the thoughts that came to me. After three exhausting hours at the medical center where my doctor is located, I was just beat. I have this autoimmune disease called Sjogren’s Syndrome (well they are pretty sure I do anyways) and just when I think I am winning the race to get better, I get pushed back to the previous mile marker. I guess it could be worse though, I am just grateful that it’s not back to the starting line.

As far as doctors go, this new one is pretty top notch in my book. There are issues with communication amongst her office staff and her, but trust me, there are more stressful things to deal with than that when it comes to doctors. I was doing pretty well physically there for a while, considering that about two years ago, I was having a difficult time even getting myself into the shower. But I get so frustrated when I do better for a while and then I approach the hill again in the race. It is even harder when the hill is one I have not climbed before.
I think I have adapted so well to the race that I sometimes downplay when I am struggling. I don’t want to admit that maybe things aren’t quite as good as I would like. Once the doctor and I got talking today, it was clear that things are hitting a curve in the road. My asthma is flaring up from the extreme heat here in New England. I have had issues with sun sensitivity and rashes. Joint pain, although well controlled during the day, wakes me up sometimes during the night. Sores in my nose from extreme dryness. And the big granddaddy of them all, a significant hearing loss which is not getting better. Maybe autoimmune related, maybe not. I have gotten the impression from this doctor that she does not get excited too easily and she seemed concerned enough to want to get my hearing evaluated right away. Then, I left the office with a prescription for steroids (again), labs, and an x-ray.

I know that so many people have obstacles much bigger than I do in their race. I am very well aware of the progress I have made in my daily functioning and health over the past few years but the bottom line is: I don’t want to be in this race anymore. I don’t think that too often because I have had a numerous amount of blessings come from this illness. For just a day though, I want to remember what it’s like to jump right out of bed and start my day without pain. I want to be able to go to a job. I want to not have to cancel plans when I am sick. I want to go sky diving and zip lining. I want to be well enough to care for my parents when they enter their more senior years. I want to be healthy and well.

I guess the problem though is that with a chronic illness, you cannot look at it like a race because as I mentioned a few paragraphs previously, there is no finish line. It’s not like when I had cancer and I got treatments; then I was cured. There is no cure for Sjogren’s. There is not even an approved treatment for it. The best I can do is to continue to live each day as fully as I can to the best of my ability. I can keep writing. I can keep cherishing my friends and family. I can keep laughing. I can keep trying to make a difference in the world. Most importantly, instead of treating my illness as a race, I must treat it like a journey. One that I must approach gently, yet with determination, courage and laughter.

Photo courtesy of Chuck Myers

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