Here’s a little rant; maybe some of you can relate.
Sometimes, I feel conflicted.
I want people to know about the illnesses that I live with. I want to inform, inspire, advocate, and educate. I want to spread awareness. I want people to empathize or understand what I’m going through. I want people to “get it.”
On the other hand, I hate that people often identify me as being the sick girl — but I get that it’s pretty hard NOT to, when I build a “brand” (for lack of a better term,) out of my online persona, Arthritis Ashley.
I guess I just feel conflicted because I want people to know that these illnesses are serious and that they can be debilitating and that they are complex and complicated and ever-changing. I want people to get how real it is, and how really difficult my life can be sometimes. BUT, at the same time, I don’t want people to pity me, or to look at me differently. I don’t want people to feel embarrassed of me, or embarrassed for me, if I talk about my conditions or need any special accommodations. I don’t want my sharing on social media or blogs to make people feel awkward. I don’t want these conditions to make me appear frail, weak, insecure, or “less than.”
The truth is, I’m not insecure about anything except the fact that I am “sick” and sometimes can’t do the same things that my healthier peers can do. I don’t want to be seen as weak or ill or less attractive. I don’t want to be seen as incapable or less able, even when I am incapable or less able in some areas.
I’m so much more than my illnesses, and while I want people to be aware of them, I don’t want them to define me. I don’t want anyone to put on blinders and not see me for who I really am. I am a WHOLE person… A WHOLE COMPLEX woman with many aspects to my personality, my spirit, my mind, and my soul.
My health conditions are a huge part of who I am, and they have taught me about compassion, empathy, tolerance, and patience. They have taught me about acceptance and grace, about humility and understanding. My health conditions have taught me self-love. They have also, at times, caused me to be at war with myself — after all, autoimmune illnesses ARE, esentailly, your own body being at war with itself. And sometimes that’s how I feel mentally and emotionally, too, when it comes to my health problems.
At times, I wish I had never “put it out there.” I wish I was one of those people who could just hide everything I’m going through, and not let anyone know. Then, no one would see my weaknesses! And I used to do that, to a point. But all it did was make me feel depressed, like I was carrying this heavy burden alone. And then I thought: I’ve always wanted to help people. When I was given the gift of a platform and a place to share my story both through writing and public speaking, I realized that I could, in a sense, help or inspire people just by living my life and sharing my truth.
When I get down in the dumps, a message from someone telling me that I’ve inspired them, or that I’m a blessing to them without knowing it, or when people call me strong or amazing, I’ll admit, it helps me to feel a little better about myself, and it reminds me of why I do choose to share my journey. I don’t think I’m anything special or that my daily life is anything significant. But, what I do have is a willingness to be transparent and share my journey with all of you.
I’d never name names or point fingers, but there have been, and continue to be, people in my life — some who are very close to me — who seem to think differently of me because of my illnesses, who are dismissive of my health issues, or who are embarrassed or ashamed, or think *I* should be embarrassed or ashamed. There are unfortunately people in my life — and probably in everyone’s lives — who are a little ignorant, intolerant, or judgmental, and can’t see the bigger picture or see me in a positive light. BUT: I’ve come to realize that I don’t need to be perfect, and I don’t need to please everyone. I’m finally comfortable with who I am, and, yes, it sucks that who I am is, in part, “sick.” But that’s not ALL I am.
I’m also a writer, an animal-lover, a church-goer, an exercise-enthusiast, a shopaholic, a volunteer, a Mensan, a health coach, a fashion-lover, a tea-and-champagne-connoisseur, and a pet mom. I am a fan of astronomy, and TV, and movies, music, and books. I love Justin Timberlake, and the color pink, and Oprah Winfrey. I like tattoos, and Starbucks; I like Barbie, and the Victorian era, and the Roaring Twenties. I adore NYC. I adore the beach. I love a good bonfire and a long boat ride. I have won spelling bees and bikini contests and softball tournaments and poetry competitions. I have done Zumba and reiki; kettlebell and horseback riding. I’ve hung out with celebrities. I’ve been on radio and TV. I’ve won awards and designed clothes and I’ve served the homeless, too. I’ve gone white water rafting and adopted an elephant and I have been to more concerts and donated to more charities than I can count. I’m getting two books published this year. I am a wife, a daughter, a sister, and a friend.
I also may have to watch my heart rate at the gym. I may walk with a limp. I may stay home for a few days a month because I’m always catching colds and the like. I may have to cancel plans because I am in a flare and the pain and the fatigue are unrelenting. I may have to leave a party early because my neck is spasming, or I have a migraine, or I can’t walk, or my stomach is upset, or any other random reason. I may sometimes seem “lazy” because I need to rest or I am experiencing terrible side effects from a medication. I get allergic reactions and dizzy spells frequently. I can be fine one minute and have all of my joints and skin on fire the next. I have blind spots and hearing difficulties. I have scars and bruises and, at present, a stuffy nose. I’ve undergone brain surgery and neck surgery and knee surgery and chemo. I’ve given myself injections and gotten more x-rays, MRIs, biopsies, and CT scans than I can count. I’ve been hospitalized multiple times, and I’ve been in the ER countless times. I’ve had a gazillion endoscopies, taken a gazillion medications, tried a gazillion natural and holistic remedies, and probably have more doctor appointments in a year than some people go to in their entire life.
But do those things make the positives less valuable? I don’t think so. I choose to value myself and my life more on that first set of attributes and achievements than the second. I applaud myself for going to the gym, and don’t judge it based on the fact that I have to be careful because of my rheumatoid arthritis and my tachycardia. I am proud of myself for awards that I’ve won, and the things I’ve accomplished, particularly because I am ill and it is difficult.
When it’s difficult, though, there is always something or someone to pick me up. I usually have a strong mental fortitude and a “never-give-up” positive attitude. But, occasionally, I wonder why I have to deal with all of this? And is sharing it the right thing to do? Then, I see that it matters.
Just today, I got some inspiring and motivating comments on my Facebook and Instagram that reminded me that I’m not alone in this, and that there are people out there who truly understand the daily struggle, and appreciate me all the more because of it.
To everyone else, I think it’s prudent to say, that what you “see” is what I choose to allow you to see. For as much as I share online, there is more that I battle with privately. I am not lazy; I am not crazy; I am far from unaccomplished. I may be ill, but I am a warrior. Sick doesn’t always equal weak, and living with an illness doesn’t take away value or beauty: in some ways, it adds to it. My life now has depth and dimension that it may not have had if I wasn’t forced to slow down, to focus on gratitude, and to grow and expand my capacity for empathy and compassion. Knowing pain and struggle makes you appreciate the good times all the more, and that makes the conflict all worth it. We who live and thrive will illness are not “less than,” we are not misfits, or undesirable, or worthless, or creatures to be pitied. We are just people, like you, who are dealing with our problems on our own terms — and if we don’t judge you based on your problems or shortcomings (particularly those of which are out of your control,) please do not judge us on ours.
Amen girl. 🙏
Hi Ashley, I understand, many disabled people growing up felt the same as you and many do now. It’s important to understand how to separate ourselves and our impairment from ourselves and our disability. I am sure you have heard of the Social Model of disability before – here’s a little taster: https://www.youtube.com/watch?v=0e24rfTZ2CQ I would strongly recommend that you read up about it, I can say that it definitely changed my life. Such a simple idea, yet so powerful and affirming. Best of luck!
I can relate to this 110%! You’re a huge inspiration by sharing your thoughts and struggles. Thank you Ashley!! I look forwar to your post daily. Amy
You’re too kind. Thank you! ❤