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I Am Not 'Lucky' That My Illness 'Could Be Worse'

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I have always been a positive person. I’m an eternal optimist, always holding onto hope, always looking to focus on the silver lining no matter how cloudy life gets. Sometimes I put pressure on myself to keep that up – partly because I just prefer it to being sad, partly because I feel like a hypocrite when I don’t and partly as a matter of self-preservation. Even (or especially) since illness has become such a big part of my life, I find reasons to keep my smile, things to be grateful for daily. I feel like I’m supposed to say I’m lucky, it’s not that bad for me…not compared to others.

definition of the word lucky

When I was finally diagnosed (after eight years of trying to figure out what was wrong), I googled sarcoidosis and the first thing that came up was the Bernie Mac Foundation: started by his wife after he died from this disease. I haven’t died, so I’m lucky – it’s not that bad.

In the online groups I frequent, I see post after post about people hospitalized due to their illness. I haven’t been hospitalized, so I’m lucky – it’s not that bad.

At events I’ve attended, I’ve met people who must travel with portable oxygen tanks. I haven’t required oxygen, so I’m lucky – it’s not that bad.

A friend of mine was misdiagnosed with lung cancer and treated with toxic chemotherapy for years before being correctly diagnosed with sarcoidosis. I haven’t been misd– well, I haven’t been misdiagnosed with cancer (rheumatoid arthritis, lupus, psoriatic arthritis, Still’s disease and undifferentiated connective tissue disease, but not cancer) and I’ve only had low-dose chemotherapy treatment, so I’m lucky – it’s not that bad.

I feel like I’m expected to say that I’m lucky because it’s not as bad as it could be or as bad as it is for some others: I haven’t died or come close to dying from my illnesses. But is that really the standard we should use for “luck?” Yes, I’m grateful to be alive…but lucky?

selfie of a woman with glasses and a purple scarf

Am I lucky that I am in physical pain literally every waking moment of every day?

Am I lucky that I need a cane to walk even short distances?

Am I lucky that there have been weeks or months when the cane wasn’t enough, and I needed a walker? (Yes, I’m glad that I don’t need the walker at the moment, but am I lucky to live with the fear that it can get that bad again at any time, with no warning?)

Am I lucky that I cannot travel longer distances without a mobility scooter?

Am I lucky that I can no longer use the main entrance to my apartment building because the steps are too painful on my ankles and knees and leave me wheezing and out of breath?

Am I lucky that I live with debilitating fatigue that no amount of sleep (or coffee) can alleviate?

Am I lucky that I have to cancel more plans than I keep – or just don’t make them at all – because I am not physically up for a night out?

Am I lucky that most people do not recognize one or more of my conditions, so instead of compassion, I often get judgment and lack of understanding?

Am I lucky that I “don’t look sick,” so people (including friends, family, former coworkers and even doctors) often don’t believe that my symptoms are as severe as they are?

Am I lucky that I am no longer able to work because managing my health has become a full-time job?

Am I lucky that I require 20 pills a day and three injections a week (in addition to a number of complementary/alternative therapies) and am still in pain every day?

Am I lucky that I gained 100 pounds as a result of that medication, only to be told to lose weight by the same doctors who prescribed it? Am I lucky that this weight gain continues to exacerbate my symptoms?

Am I lucky that my disease can progress to affect any organ in my body, and could potentially lead to portable oxygen, hospitalization or death?

Am I lucky that there is no cure for my illnesses, and the treatments can cause as much damage as they mitigate?

Given that my symptoms began in my early 30s and the life expectancy for my demographic is over 80 years, I could be struggling like this (or worse) every day of my life for 50 years. This hardly seems like a situation anyone would call “lucky.”

Even as I write this though, I’ve been fighting the urge to point out the positives, and there certainly are some. I will not say I’m lucky to have these illnesses (and neither should anyone else), but given that situation, there are things that I am fortunate – and grateful – to have.

I am fortunate to have a husband who is so loving, caring and supportive of me and my illness, and I recognize that many in my situation do not. He is my best friend, my protector, my entertainer, my source of comfort and strength. But this is not pure luck – I met him as a child and got to know him throughout my life. Because of the man that he is and our chemistry together, I chose him to be my partner in life, and he chose me. Together, we have worked to develop our relationship into what it is today. I am grateful that he is by my side, but he also knows that I would be by his if the roles were reversed.

I am fortunate to have a mother who is always trying to learn more, to understand more and to do whatever she can to support me. She may not always know the right thing to say or do, but she wants to, and that is what matters most. She is there whenever I need her, always looking for any way to help. But this is not pure luck – she made me, after all, and as the apple didn’t fall far from the tree, we have cultivated a strong relationship over the past 42 years. I am grateful to have one incredible parent, and hope that she is proud of the child she raised me to be.

I am fortunate to have a team of doctors who continue to work for me and with me to figure this out.  They listen to me, believe me, communicate with each other and do not give up until we get the results we want. But this is not pure luck – I spent years (decades, in some instances) going to the wrong doctors, the ones who did not listen, did not care, and made me feel like my problems either were not real or were my own fault. I am fortunate to have the right doctors now, but continue to do my own research, ask questions and stay on top of my own health care. I am grateful to have this team now, but know that I am the manager, and may have to bench someone and recruit a replacement at any time.

I am fortunate to have such great friends in the chronic illness community, as these illnesses can be so isolating. These people are my brothers and sisters – we understand each other at a level that no one without an illness (no matter how well-intended) truly can, and we can laugh and cry virtually together (no matter how far apart we are) about the twisted ways we are affected. But this is not pure luck – I actively sought out online support groups and became active in the ones that resonated with me. I am grateful to have connected with so many of these members, and hope that they also see value in finding me.

I am fortunate to have empowering experiences in advocacy, as these help to fill a void left by all the things my illnesses have taken away.  Speaking up about my illnesses – for myself and for others like me – has given me a purpose that I thought could only be filled with a career serving others. But this is not pure luck – I began writing about my experiences while I was still able to work, and continued to seek out opportunities to use my voice to help others and not feel so helpless myself. I am grateful to have found this niche, and to have my efforts received as positively as they have been. My only hope is that my words can bring comfort, relief or validation to others who are struggling and bring awareness and understanding to those around us.

This post originally appeared on Float Like a Buttahfly.

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Originally published: May 8, 2017
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