I read a great quote online yesterday, which prompted me to write this blog today. It was one of those posters that Word Porn posts daily on my Facebook feed, and instead of scrolling down past it like I do usually, this one caught my eye. Here it is…
This one really spoke to me, because I feel like I deal with this on a regular basis due to the nature of my disease. And this particular statement I feel like I’ve literally been living.
Rheumatoid Disease has plagued my body for three and a half years now. Endless years, it seems sometimes, that I’ve dealt with this indescribable pain, whom no one can fix. I’ve tried so many medical treatments, pharmaceutical and homeopathic. I’ve attempted every fad diet out there, all proclaiming to be the “cure-all” for my disease. You name it, and I bet I’ve tried it! Even going as far as using essential oils, sleeping with healing rocks, and attempting to meditate the pain away.
I have spent countless hours in frigid medical offices, waiting for yet another “check-up” appointment. Or another visit where my doctor will inform me that now do I not only have the worst case of Rheumatoid Disease for someone my age in Hawaii, but also of all their colleagues’ patients on the mainland as well. Gee, that’s some great news, I’ve always wanted to be the best at something. I could never have imagined it would be concerning a debilitating, incurable disease. I’m so lucky!
I’ve spent more time with my Rheumatologist and PCP than I have with some of my closest friends. Truth be told, that could also be said for most of my family members as well. And I’m not saying that’s something bad, it’s just my reality. My week’s schedule is usually broken down in three main priorities: first comes doctors appointments, then work related training/events/prospecting, then family time, and friends and social engagements can be worked in after that.
If you really look at my priorities, you can also see how important my health is to me. I’m 34, about to be 35 in one month. I don’t want my disease to define me, and to accomplish that, I need to work hard at finding a way to coexist with it. I have to figure out how to live with my disease in a way where it doesn’t rule my life and dictate who I am as a person. And to do that, I am 100% committed to finding a medical treatment plan that works for me.
My second priority is my financial independence. I now receive a small monthly siphon from Social Security, but it is nowhere near enough to live off of. So I had to find a part time job that I could do without hurting myself, or worsening my disease. That came in the form of direct sales with Rodan + Fields, which fortunately fits my needs perfectly. I work from home, hell, most days I work from bed, and I make my own hours. I’m my own boss, and have no one above me causing me stress. It’s almost completely social media and word of mouth based, and works perfectly with my retail background. I’ve only just started, so I’m not making any real money yet, but I will in time, and I’ll be financially secure for my future. And the best part is that I love my job. I love helping people, and making them happy. So, really, it’s a Win/Win.
My third priority is my family. No matter what is going on in one’s life, it’s always nice to have family to fall back on. Spending time with both sides of mine (I was a child of divorce, so I get two), is something I try to make time for regularly. Now, I’m not saying that my family relationships are perfect, far from it. But at the end of the day your family doesn’t change. You don’t get to swap them out if you have a fight, or don’t see eye to eye. With family you’re committed to the good, the bad, and the ugly. And I have dealt with all of those memories from both sides of mine.
Although, this is where the aforementioned quote comes in to play.
I understand that dealing with people with disease is hard for some. Knowing a friend, or even an acquaintance, who is going through an intense medical situation can be tough. Even dealing with a lesser medical situation, like maybe reoccurring headaches or acid reflux, can be hard for some to process. We don’t know how to react, or how much empathy or sympathy to have. It’s daunting for some people to deal with those who are sick. And even more so if we are talking about incurable diseases, cancer, or any other life threatening medical issue.
In my own medical journey I’ve actually lost friends because of my illness. Not because they were scared of “catching it”, Rheumatoid Disease isn’t contagious. But mostly because they were at a loss of how to handle it. They didn’t understand the disease, and why I was so sick, and why after all my treatments I wasn’t getting better. And instead of asking me about it, and attempting to understand what I was going through, or asking how they could be supportive, they instead pulled away. Yes, it initially hurt my feelings, but at the end of the day I have learned that I’d rather surround myself with supportive people. People who want to be in my life, not those who feel they have to be. I think that goes for pretty much everyone, healthy or not.
I’ve personally found, though, that support can be a double-edged sword. You would think that anyone going through an intense illness, like mine, would welcome support of any kind. Through the assumption that any help at all is still helpful, right? WRONG. Support and help is only helpful if it comes from a good place. However, in my personal experience, support is often not without strings.
I welcome and appreciate any kind of support towards my person, my illness, my newfound career, and my journey in general, as long as that support is given freely. What I mean by this is that it’s given without expectations of a reward, or a guilt-laden reciprocation. Just like the quote says, “I don’t engage in acts of kindness to be rewarded later,” I don’t want to receive support with strings attached. An example of this might be a ‘You scratch my back, I’ll scratch your back scenario”. Or making comments like, “Well I helped you with that one thing last week, so….”
No one wants to feel like they’re being used. But expectations put on support is just that. It’s support with strings attached, and I don’t want any part of that. If you need help with something, just ask. But thinly veiling it as “support” basically makes the receiver feel like shit.
If you want to do something nice for me, or anyone, then do it. Not to get something back from it, or to make yourself feel better by showing others how “supportive” you are. If you want to be seen as a good person, then do good things. And leave it at that. Be kind. Be generous. Be good. Not for others. For YOU.
Giving me support in my illness isn’t a competition on who can do it better. The best way to support me while I’m going through this hell is to just be there. Ask me how I am. Ask me if there’s anything you can do. Ask me if I need help. Ask me if I need a ride somewhere. And listen when I tell you. Listen to what I’m saying to understand, not to reply.
I feel like everything has become a lie recently. Like suddenly I’m this vessel to be used to make others look and feel better. Like “Hey, did you notice, I’m being supportive?” Or, “Look at this picture I posted of me being so supportive!”
Supporting me isn’t a competition. I’m a human being, dealing with an incurable, debilitating disease. I’m just trying to make it through each day, each week, and each month, without landing back in the hospital. I just want a life I can be proud of, and get up for each and every day. Want to feel good about yourself, too? Do something good without thinking about who it benefits, and I’ll continue to do the same.