Advocacy / Arthritis / Ashley's Health Diary / Awareness / Juvenile Arthritis / Personal Stories / Uncategorized / Wellness

Freedom: Making Choices and Living Judgment-Free with Chronic Illness – by Ashley Boynes

Martin Luther King, Jr. believed in FREEDOM. In choice. In equal rights. In humanity “getting along.” In the destruction of prejudices and discrimination, and the erasure of hate.

Yet, even in 2011, pockets of the population face discrimination, have their “choices” (or lack thereof) dictated to them, and face judgment, regardless of the leaps and bounds of progress we’ve made since King’s famed, “I Have a Dream” speech. We still have quite a long way to go. In short, some people still have a hard time getting along with, or accepting, others.

I have a dream. I’ll tell you what it is. I dream that, one day, people living with illness and/or disability will not be looked down upon. People with handicaps will have equal rights and opportunities. No one will be “blamed” for their illnesses. Those of us carrying the cross of chronic illness will not become further burdened by guilt or judgment. We will not be pitied or miss out on the beautiful things that life has to offer us. People will be sensitive with their actions towards us, and mindful when choosing their words.

Today, a health “guru” who promotes a drug-free, raw foods, clean lifestyle ripped into me for my personal beliefs regarding medicine. Before I proceed, let me state here and now that my views are my own and do not reflect that of the Arthritis Foundation or any other entity. What are my views? I believe in an integrative, and, I believe, quite modern approach to healing. Yes, I take some medications. But I’m down to a few pills a day – if that – when I used to take nearly 20. I “could” foreseeably live on pain medications, every day, based on the pain I face. Do I ever take them unless after surgery? No. So while I’m not “anti-drugs,” I believe in minimal usage only when needed. I’m educated enough to acknowledge that some conditions – RA for example (though there are many others) – NEED to be treated with modern medicine. Let me also say that I know there are exceptions to everything and that some people do not need the meds. I am on a biologic and an immunosuppressant and judging by past experiences of trying to go “drug free” – I DO need them. To each their own, is what I say – every person’s bodies and experiences are different. That being said, while I rely on some medications, I do not eschew other beliefs. I’ve done acupuncture and chiropractic. Massage therapy, a detox body wrap, mindful meditation, and biofeedback. I have seen naturopathic doctors and nutritionists. I believe in aromatherapy. I believe in prayer. I take supplements/herbs/vitamins in addition to my meds. I am gluten-free, and avoid soy and dairy as best I can. I have food allergies and avoid the “trigger” foods. Save for 1 or 2 guilty pleasures, I have a healthy diet and do not overeat. I exercise when I can – yoga, walking, elliptical, etc. So, I’ve tried a lot and I believe in a lot. So, I have an open mind. I am not afraid to share my opinions and I share them freely. I am an “open book” when it comes to my health and, while I have bad or “down” days, I encourage a positive mindset. For better or for worse, I try to promote a healthful lifestyle of wellness to my fellow “spoonies” and to advocate for people suffering from chronic illness/disability, especially the younger set. I am careful to not judge anyone’s choices. I am accepting of every lifestyle and am respectful. Therefore, it hurts when someone starts to put me down or be mean to be, simply because of who I am and how I handle my health.

For example, today, I was faced with the above-mentioned individual who said that my “advocating digs people further into the mud” and that “judging by my Twitter bio [which lists my conditions] there’s NO HOPE” for me. He said that “big pharma and the AMA must LOVE ” me. “What a gem you are!” he said to me, and also called me a “wolf in sheep’s clothing.” Why? Because I don’t personally believe in  all of his beliefs (Raw beef. No meds. We are responsible for our ailments, etc.)  and so I must be sending the wrong message! I am still sick, so I must want to be a sick person, and want you all to be sick with me! (his words.) I disagreed with him when he said that we cause our illnesses. I asked if I caused my conditions as a baby. He said no my mom did. I’m sure other parents of children with Juvenile Arthritis appreciate that. He apparently believes that we all cause all of our own health problems. Cancer, arthritis, ADHD, you name it. He said that if we “aren’t better” then we “don’t want to be better.”

Really? The amount of time, effort, and money that myself and my family have spent on BOTH traditional and nontraditional treatments and cures would speak otherwise. As would my devoting my life, pretty much, to advocating for health causes. When I politely pointed out that he was profiting off of his book just as he claims the medical field profits off of our illness, he lost it. He then sent me a judgmental, condescending email telling me that while I may be educated, I’m blind to what’s “going on around me.”

I’ve never spoken to or engaged with this man before today. Yet he judged me based solely on the fact that I have chronic health conditions, because, to him, that is a weakness and an unfortunate situation that I brought upon myself.

Well, “what a gem” this gentleman was. The irony is that, I do try to help others be well, and encourage people to NOT solely identify themselves with their illnesses. In fact, it’s pretty much my message every day, and with every blog. Sadly, I agreed with this gentleman on some things. I agree that diet plays a huge part in our health. I agree that SOME (*some* – not all) health problems are caused by habits. I agree that some drugs are dangerous and that some people use medications unnecessarily.

I agreed with some of it. Some. Not all. But, it really doesn’t matter – I am sick of people judging us. I wanted to write this blog as a way to stand up not only for myself but for all of you. And the fact that this hateful act occurred on Martin Luther King Day? The irony is not lost on me. There’s still racial profiling and discrimination out there in the world today, that’s for sure. It’s hard to rid the world of prejudice. But, I’ve seen another type of discrimination and it is discrimination and prejudice against those of us with health issues.

I’m not weak. Taking a medication didn’t CAUSE me to have an autoimmune disease. It wasn’t my parents’ fault. Not everyone with a chronic condition is dependent on medications. I’m not a waste of life or a loser because I’m sick. If you’re healthy and you’re opposed to traditional medicine that is great, that is fine, and I’m  honestly happy for you. I’m intrigued by alternative treatments, love learning about ALL aspects of health, and will continue my integrative approach – but you’re no better than me or than the person who practices a strictly traditional Western medicine regime. While I love to learn others’ points of view, sometimes, they aren’t welcome. If you aren’t  a doctor, I don’t want your medical advice. In fact, it can sometimes do more harm than good. Why bother yourself with what other people are doing? Focus on your life!

Here’s another good example of being looked down upon because of illness – this weekend at a party, someone said to me, “Oh it must be nice to be able to feel superior to others because you can’t eat junk food,” referring to my Celiac disease and inability to eat gluten. You think that I don’t WANT to eat a cupcake? I do. But I can’t. So I don’t. And, yes, thanks, it IS nice to eat healthily. The same person also said to me, in a very disdainful tone, “so, are you working a real job yet?” – Excuse me, but how is that their business? No, I don’t work full time because of my health problems. I don’t have what some people would call a “real” job. But, why cast judgment on me for it? Why cast judgment on ANYONE who lives with a disability? How does that serve you?

A woman I spoke to today – age 29, with RA – told me that a 70-year-old woman berated her because, due to her OWN condition, she was physically unable to help the elder woman stand up. The woman criticized her and said there’s no way she can really have arthritis. Another mother told me that someone told her that she was responsible for her child’s juvenile arthritis. It is sad. We have a ways to go in reaching optimal awareness about these kinds of conditions.

It just isn’t fair. My dream is that those of us who already deal with physical ails that many could not imagine, should not have to live with the added burden of outside criticisms, judgments, and prejudices.

My dream is that people living with any type of illness – REGARDLESS of how you treat it – should support one another, and build each other up instead of tearing one another down. There’s no competition. There should be no divide. My course of treatment or response to certain treatments may be quite different from yours. You might not like my choice to take a medication, get vaccinated, or have a surgery. You might not like my decision to see a chiropractor, practice Reiki, or go to a therapist. Guess what? It isn’t your body, your life, or your choice.

Get to know people before attacking them. Consider what a person may be going through before making remarks that appear rude or ignorant. Just because someone doesn’t have the same belief system as you doesn’t mean that you should bring them down. I didn’t bring this life upon myself – but I’m thankful for each and every second of it, and every circumstance that’s led me to this very moment – on my Mac, at Starbucks, with gorgeous winter sun shining in on me. I live a beautiful, blessed, and full life DESPITE of my illnesses, and with a mind of my own! I wish for all of you to do the same.

“I have a dream….” that there will be no more discrimination for those of us who have health problems. “I have a dream….” that labels and stigmas surrounding us will dissolve. “I have a dream…..” that people will become more compassionate, empathetic, and mindful. “I have a dream….” that people will be sensitive, think before they speak, and consider their words carefully, thinking of how they may be perceived by another person.

Let’s eradicate hate of all kinds. Racism, sexism, homophobia, religious divide, and discrimination towards anyone who is different. We ARE all different – but that’s what makes this world beautiful. And since we’re all different, we cope in different ways. We handle things in different ways. We have different choices, lifestyles, and treatments in our path towards healing. So don’t let anyone who isn’t open-minded enough to see these differences stand in your way!

Here’s wishing you all a judgment-free, healthful, and pain-free week!  Be well, and remember when making health decisions that it is YOUR opinion that matters most. Do not let negative people or naysayers sway you in any way. You are the master of your own destiny, no matter what beast you are facing. You are perfect as-is, and despite your health circumstances, you need to remember that you’re right where you need to be. “Be Kind to One Another!”

Thanks for reading, and please leave a comment!

Stay well,

Ashley Boynes

11 thoughts on “Freedom: Making Choices and Living Judgment-Free with Chronic Illness – by Ashley Boynes

  1. Wow, it never ceases to amaze me how people are so ignorant and mean spirited. Just because you do not agree with someones opinions doesnt mean you should berate them. Each of us have our own beliefs. What works best for me may not work best for you. We share information. That is what support is all about. You always say the kindest things and offer your opinions with such grace. Ive said it before, you really do inspire me. Thanks for all you do and say.

  2. Ashley, I admire the way you always seem to just “handle” everything without complaining. Reading your tweets always makes me feel like I complain too much, but not in a discouraging way, but rather in a motivating way that makes me want to go out and try that much harder to handle life as it comes my way. I love the advice you offer and the encouragement you provide and the additional resources you often cite so that others can go out and get other opinions.

    This bloke…ugh. His logic frustrates me. How can you even say that people choose this? I did not choose Crohn’s Disease. My parents didn’t choose it for me either (if they did, wouldn’t my two siblings also have it?). I wouldn’t wish this on anyone. I would say I’d like him to spend even a few hours in my shoes (especially if I were to be stripped of my vital meds) and see how awesome his life is then, but like I said, I don’t want others to have to endure this.

    Although you and I do not share the exact same diagnoses, I found an amazing ally and friend in you, one that I’m not sure I knew I needed.

    Oh, and I will not be eating raw beef anytime soon. That’s nasty.

  3. WOW! Ashley that was beautiful! I loved it!! When this all happened this morning, no joke, I was shaking, heart racing, palms sweating, LITERALLY seeing red. But, as I said this morning, “There will sadly ALWAYS be ppl just like him. That’s why God made ppl like US :D” I have learned to look upon these situations as a prayer opportunity. Clearly…the dude’s got issues, so I’ll pray for him. And as you say, not everything he believes is even wrong. And of course you are entitled to believe whatever you want. But don’t force your beliefs on me and DON’T talk down to me, my CHILD, or anyone else for that matter because they have a chronic, PAINFUL illness. I could go on forever….but I hope I made my point. Thank you Ashley for all that you do to advocate 🙂

  4. I think that some people are so bitter with their own lives that they feel they need to bring everyone down with them. Clearly he has some big issues.
    I have a friend with lots of chronic problems that started with JA when she was little. She told me the other day that her mother had a friend that treated her very badly. She used to accuse her of faking it, and tried to get her to try all sorts of alternative methods. One day, that woman finally realized that her very own alternative methods didn’t work- on herself! She ended up with severe RA and asked this poor woman for advice after shutting her down for so many years. One way or another this man will get his one day. I think you are awesome! 🙂 Don’t go changing, k?

  5. Ashley,

    Very eloquent words & valuable insights. I, for one, utilize integrative treatment methods. Unfortunately, I have also experienced (as many of us have) the ignorant & dogmatic views of those who believe that only one “truth” exists. If only we were so powerful as to create whatever condition we may choose. If blessed with that gift, I would choose a “super” body!!!!! Imagine how great it would be to be super-healthy and all powerful simply by utilizing the power of the mind!!!!! I have a wonderful question for the pseudo-omniscient person of whom you speak.

    How does he explain hypochondriasis?

    The limiting ideologies of the stale mind never cease to amaze me.

    As for those who don’t understand Celiac Disease and the inability (a blessing, I might add) to eat gluten & dairy, methinks they’re just a wee bit jealous of one’s ability to adhere to a more healthful diet, one that nourishes the mind, body & soul. It is clear that junk food, chemicals and pesticides permeate the consciousness of those souls who have no understanding or compassion for those of us who are faced with pain, fatigue and endless other symptoms. Yet, we smile and laugh and are truly happier because we know the value of working and contributing to the world as well as the diversity in being able to do so.

    You are truly a passionate & compassionate individual with a fabulous head on her shoulders and an amazingly adaptive and wondrous attitude. So much admiration & gratefulness for all that you do.

    Sue =)

  6. I believe in having a positive attitude as much as the next guy….really, there is something to it….but it will NOT cure me, and I had nothing to do with my becoming chronically ill since I was a young child and neither did my parents.

    It is hard to hold my tongue when people tell me I am only sick because I am doing this or not doing that…if they only knew what I went through to NOT be sick….trust me if you could will yourself better…I would have. All that I have managed to do when I do that is push myself too hard and end up in the hospital with a long road to recovery….

    Yes, my lifestyle has a lot to do with how I will feel day to day…but it is not the sole factor in my managing my illnesses by any means of the word….
    These are complex diseases….at least for me…there are no simple answers or trust that I would follow the course rigorously…

  7. I suffer from “invisible illness” and struggle with everything from gastroparesis, the ensuing severe body dysmorphia that accompanied the 175 pound weight loss & society’s reaction to the new me, which I guess me being gravely ill and most importantly skinny, makes me very socially attractive (except for the porcupine hair, of course, that’s my childhood baby joke on the whole world) when I was perfectly fine, fat, happy, successful & well-liked at my career any by my co-workers and had beautiful soft, round skin & I was a nudist- THAT’S how in tune to my big beautiful body I was and I loved it. It sucked sometimes having to find specialty clothes when I really got up there (size 6x was my very heaviest, but 5x was usual) and I would get winded so easily that this last summer during a relapse in my condition and the last 55 pound loss, I was almost darn near healthy and could run, swim, float the river, blood pressure went away as did bad knee. . .and my bride of 17 years loved me at a 6x, loved me even more healthy, and loves me now, all 175 pounds & baggy ugly skin hanging off this body apparently still belonging to me.) Thank goodness for clothes- much more readily available at a size 16 than a size 6x, thank you. But All that is for another memoir. . .I am here in the hospital (AGAIN) having worn everyone out with chronic illness piling up onto chronic illness, and unable to live even a fraction of the quality of life I used to- between my professional life, my love life with my bride, my interactions with patients I know will only get their hopes dashed by awful physicians…my energy level from these feeding tube feeds, being unable to eat even anything, healthy or otherwise, learning to live with this 1 foot dangling piece of life-sustaining plastic out of my PEG/J stoma where now I can’t even feed due to the pain and nausea are so bad. Referral to a digestive disease clinic in early February, then back to tackle the horrendous back issues exacerbating all of the other internal organ stuff. . . 7 herniations, 3 lumbar, and they haven’t done a cervical MRI yet- 4 of the herniations are also disc deciccations of the thoracic spine and 2 compressing the cord in the very spots going out to the belly nerves and chest nerves (where I get my worst pain at rest & at trying to attempt to eat anything). At least in the hospital my exhausted family can tend to themselves and get some rest for their own. I am definitely lonely and depressed and mad as hell that whatever clusterf&*k is causing me all these sorrowful, painful, horrendous symptoms, it is now affecting my family in negative ways as well, and though we made vows through sickness and in health, I think this goes well beyond the call of duty. The meds that give my body relief make my personality disappear. I never asked her to sign up for that when she agreed to be sick by my side.
    Really, what my instincts, my very vibrating hairs, my tender crab belly are all screaming at me to do is to hide- put the blanket over the hairs, the hard shell over that tender belly, some earplugs to try and drown out the screaming in my head, and pray until God checks me out SOON! Not that I wish to die, but in the absence of any direction or goal or strength anymore to even figure all that stuff out, I simply pray that if it be His will for me, that He let this cup of useless suffering for self and those self loves pass over her, but if it IS His will that she continue partaking of said cup o’ pain (because the God of my understanding has a sense of humor, thank you very much & I like to think I am very much made in that image) that He continue granting her the strength, insight, and discipline it will involve. Then I will continue to rest nightly in Your money-can’t-buy/nobody-can-take-away amazing FREE gift of Grace. . . undeserved mercy. And Lord, please let it merely flow through me, touching me most in these spots needing healing so badly, then Please my Lord, let it go through me out to others who might need to be in Grace’s healing power and aren’t even aware it’s there just for them because You love them so! We are such little worms compared to your mighty and beautiful Warrior & Guardian Angels who spend eternities fighting for you in perfect sin-less-ness and adoration. But that is precisely why You love us even more- for though You chose us long before the Universe was even created, you gave us what even the Angels of Heaven do not have- Free Will. Some choose that (I do daily, yet practice daily too, thanks to Your gentle heart lessons, and Your not-so-gentle heart lessons) over that incredible gift of grace- UNDESERVED MERCY! Unconditional love, similar to that which mothers and some fathers feel for their human children, imagine how much more You love Your own children! And when they go through all of life’s slings & errors, how much love You really must feel when they turn to YOU with their 1st amazing gift of Fee Will & use it to honor You by living as best our broken selves can and being as Jesus, Your precious Son would have us at the very least to strive to be. . .Bodhi Sattvas! Only Jesus was ever truly enlightened because He is the living God, not just one who raised a few from the dead and did some miracles our puny eyes could see~ LOVE is what God is. . .not a doctrine, a place, a practice, a religion or any other name. When any human acts in a loving manner towards another human being, THERE IS GOD because GOD=LOVE. No, we are not God, simply (if we so choose to allow it) the conduit for which God/Love can be allowed to flow! Random acts of kindness. . . look how much more mighty gentleness truly is! Gandhi won his entire country back from the British with NON-Violent opposition. God did indeed give us brains to figure things out, and the brawn to protect ourselves. I simply do not believe it is our inherent nature to be evil unless we make witting, and unwitting choices based on that first gift, Free Will. The good news is, nothing can ever truly keep you from opening that conduit of GOD/LOVE but yourself. The Buddhists call keeping this conduit open “enlightenment” I believe, as do some other religions. . . but I posit this is how the God of my understanding, my beloved Jesus, would have me live. In the NOW, at least putting forth the effort to fix my own brokenness enough to try and create the tiniest conduit of love/God to flow through me for I want nothing more than that absolute perfect feeling of connectedness…we think it’s with another human, and I suppose some of it is indeed that, but no, the majority of that good feeling is the conscious contact we just had with GOD through another human being, which Jesus was always trying to teach, along with other great teachers before and after His time. We are a stubborn lot with that gift of Free Will, but it’s certain to make our love to the good God of our understanding that much sweeter to Him than any Angel’s perfect song of praise! Oh how I ache for God to love me like that, and intellectually I know He does because I feel Him almost every day in my mind, but also in His gentle niggles to my heart. It’s just taken me a long time to learn how to listen back when I prayed- it’s not a prayer but a conversation and when I learned God could, would, and does talk back to me I felt more loved and special than ever.
    How do I know this is all true down to my roots so deep? Faith. Simple as that. My spirit did the leap of faith my flesh was too weak to make. And that gift of Grace was so worth the reward that I continue to make that leap of faith almost every day. Praise be to God! He loves you and through Him He can teach me how to love you too.
    Amy D.

  8. You’re a star and don’t let any-one tell you otherwise. I’m 34 and have had RA for 20 odd years and I wish I had been in the place you are in when I was your age.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s