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Don’t Let Chronic Illness Steal Your Sparkle! – by Ashley Boynes

Do you approach everything from a bitter or dismal place because of your condition? Is there are a dark cloud surrounding you at all times? Do you take everything “the wrong way” because you are so on-edge and defensive of your illness? Is your main “identifier” that of a sick person? Has living with chronic illness or disability stolen your sparkle and tarnished your self-esteem, dampening your outlook on life?

If any or all of these statements are true, you may need to regain your sparkle and realign your perceived identity with who you REALLY are inside!

I have said it before and I will say it again: don’t let your illness define you, and whatever you do, don’t let it “steal your sparkle.”

I recently posted a tweet asking how Juvenile Arthritis affected the lives of any “now-adults” who were affected with JA in their childhood or teenage years. The overwhelming response, that I could relate to, was that it hurt self esteem, made them feel isolated, and for some, even caused anxiety and depression.

Arthritis – or any life-altering diagnosis – can change one’s path at any age. However, just because it changes our path doesn’t mean it needs to consume our life or change who we are. Don’t let it steal your sparkle!

It is proven that the emotional release of journaling your feelings, or using other coping skills, can result in the decreased sensation of pain. So can “venting” online, or talking about your feelings with a support group, friend, church group, or doctor. Additionally, positive  and “happy” thoughts release endorphins in our bodies that are considered natural pain relievers!

I’ve said before that I believe that positivity breeds positive things, and, likewise, negativity breeds negativity. Of course, being positive, in most cases, isn’t going to change the reality of  your situation. You’re still going to have RA, fibro, MS, lupus – whatever it is that you suffer from. But, how you LOOK at your situation is up to you. You can realize that it is your CHOICE whether to spend life moping, dwelling on your situation, and being unhappy. You can LET the disease steal your sparkle – or you can refuse to! You CANNOT choose whether or not your body responds to treatments, or whether or not you face multiple diagnoses and complications. You CAN choose to be happy in spite of it! I’ve had some new, important diagnoses, and some annoying, painful new symptoms – but  despite all of that, I’ve been happier than usual lately just because of opening my heart and allowing myself to get my sparkle back. You can do this, too. It may just take practice – changing thoughts, changing habits.

A recent rheum chat on Twitter posed the question on whether not pressure to appear positive can make us feel self-conscious and actually have a negative effect on the patient. Sure, if you worry THAT MUCH about your self-image and you lie or pretend to be feeling optimistic when you aren’t, it probably does have a less-than-positive outcome. So my advice is to not fake it. Honesty and realism are KEY!!! Be authentic, but, still try to be optimistic and positive. Don’t pretend to be happy and upbeat when you are not – but learn to filter your thoughts and feelings and to let go of the bad ones. Yes, we all need to vent, share, and relate to others who are going through what we are. We all seek that empathy: but complaining 24/7 is only going to cast a negative shadow upon us. People will begin to view you as a victim, and your identity WILL then become your illness, which will in turn lower your self-esteem.

If you choose to look on the bright side of things, people will respect you for it. You will be viewed as strong, inspiring. Will this change how you PHYSICALLY feel day-to-day? Probably not! Does this mean you will never have a bad, painful, or ugly day? Obviously not. However, it can boost your self esteem and make you feel much better about life! Wouldn’t you rather be viewed in this light rather than that of a victim?

For example, I get a huge reward from encouraging others. Even if I am still laying in my bed at noon because I am having a bad day, if I can inspire a friend or encourage a fellow “spoonie,” my spirits are lifted and my heart is happy, and I’m grateful for that interaction.  I’m not a hypocrite. I share when I’m having a bad day – but I don’t overshare – and I try my best not to complain … because EVERYONE (chronically ill or not) has their own problems, and, to be honest, most probably don’t care all THAT much about mine!

Even if you are naturally a “Debbie Downer,” why not just try the opposite approach for just one day? If you feel a negative thought or “gripe” coming on, quietly think it to yourself, and move on. Only share the good stuff. Encourage others. Focus on positive thoughts and affirmations. If you do this over time, you may just “fake it til you make it” and notice that a positive lifestyle is a lot better than piling negative thoughts on top of an already-negative situation.

Sure, this all may sound very preachy, and you might think, “well, if she has THAT attitude, she must not have it as bad as me.” If you want to think like that, then think what you wish. That is an example of being both negative and unsupportive. I don’t think that there’s any competition, and it shouldn’t matter who has it worse. Naturally, people will read this and actually get ANGRY at me for my positive attitude and encouraging others to be positive. I’ve gotten the hate comments before  from these aforementioned negative folks – I mean, the NERVE of me trying to still live a happy life despite my conditions and wanting others to be able to do the same! 😉

Instead of adopting that toxic point of view, we all should bond together to encourage one another, and build  up each other’s self esteem instead of tearing one another down! We should all make an effort to lift the spirits of fellow patients who may be suffering – after all, we’re all in the same proverbial boat together!

We should also do things to make ourselves feel good when we’re feeling bad. What do I mean? Take time to journal, read, knit, spend time with pets, play games on the computer, walk, paint, meditate – whatever it is that helps us cope and makes us feel at peace inside. Rest when you need to. Focus on YOU!

By doing simple things like this, and making a conscious effort to rise above negativity, we can LITERALLY reduce physical pain in our lives. It isn’t a cure by any means, but it can decrease our response to the pains that we already have and reduce the sensation of pain. As 2011 approaches, why not make it your New Year’s resolution to give it a try? After all, it can’t hurt (pardon the pun.)

Simply put, people who complain want empathy. That is only natural. I want empathy and compassion, we all do! It is human nature, and it is OK. To never whine when you’re in a situation like we are in would be unnatural and dishonest. An occasional complaint is nothing to feel guilty over – and we deserve that empathy and compassion, that’s for sure.

However, this is a fact, too: people whine ALL THE TIME want people to feel sorry for them. This negative attention breeds low self-esteem and a poor self-image. These factors can lead to further withdrawal and depression. Depression can lead to pain and can further exacerbate physical symptoms. Think about it. Instead of “why me?” think, “why not me? I can handle this.” Try not to let your condition define you.

Make a CONSCIOUS EFFORT to, for once, NOT talk about your health in social situations! Sure, it’s bound to get brought up but, again, it is your choice. Talk about it when you want and to whom you want, but don’t make it your main topic of interest, and, don’t overwhelm every person you encounter with tales of your health woes. Pick and choose. Be realistic about who cares and who is actually interested. Don’t bombard those who wouldn’t care to hear it, even if they do care about you. Have a place where you CAN vent. For me, it is online. I use my social networks as a support system. I’ve joined the INSPIRE Joint  Support Community for arthritis, and multiple Facebook pages, as well as participating in Twitter chats relating to my conditions. I also am not ashamed to admit that I see a therapist who specializes in patients with chronic illness, and it helps immensely. I also force myself to read inspirational stories, and positive quotes, and to think about what I’m grateful for each day. As silly as it sounds, this stuff helps, too! Give it a whirl!

Changing the way you think or act is not going to change your truth. Preserving your “sparkle” won’t make you 100% physically healthy. You have whatever disability or condition you have, and until there’s a cure, that’s all there is to it. But, changing the way you think, act, and speak (or type!) can change the way others perceive you. It can also change the way that you perceive yourself and your illness – and that is the most IMPORTANT part!

Just some food for thought!

I created this affirmation today, adapted from a quote I’d read, that I’d love to share: “Vulnerability is my strength. My flaws make me human. Pain means I’m alive. I love me just as I am.”

What would YOUR self-loving affirmation be? Please, leave a comment and share and good luck in your quest towards optimal health and a better life for yourself – mind, body, and spirit! Let’s move together towards achieving all of those goals as we wrap up 2010 and move into 2011! Be kind to one another – and be kind to yourself!!

I can’t wait to hear your thoughts and your affirmations! 🙂

Stay Well,

Ashley Boynes

Don’t forget! If you want to warm up your heart during these chilly winter months and do some good for the holiday season, simply text the word ACTION to 27722 to donate $10 to the Arthritis Foundation, Mid Atlantic Region’s Million Dollar Campaign for Arthritis

7 thoughts on “Don’t Let Chronic Illness Steal Your Sparkle! – by Ashley Boynes

  1. Great post! I’ve been trying to think more positively, and it really does help. (Even with making the job I hate more bearable.) I do tend to be a “negative Nelly,” especially on my down days, but it’s getting better. Thanks for the reinforcement, and don’t let the folks that jump on you for looking for the good get to you!

  2. Ashley,
    Again you have brightened my day!
    I do find that helping others brings me joy. I am part of the Speakers Bureau for AF. Volunteering gives me energy. Not to mention the amazing people I have meet along the way.

    The Holidays are hard, and your post has reminded me not to forget my “Sparkle”.
    Thank you and may you have a Sparkling day!

  3. It’s so good to hear someone with a positive attitude – we all feel down about things sometimes, but do we want to turn into shriveled-up-angry-people for the rest of our lives? I don’t – and I’m glad to see there are other people out there spreading the positive vibes :o)

  4. Awesome article, Ashley! Having just come out of a huge flare where I really struggled to be positive, I can really relate to this and found it really helpful! Thanks so much!! Sparkle On!


  5. Great Article Ashley! Way to put our grief in a positive way! As a Pastor, I am SUPPOSED to teach/preach joy & actually LIVE it! God really helps me, and my family understands and supports me as well. I have a wonderful church family who is 100 % behind me as well. It is great to be surrounded by people who LOVE & SUPPORT you in the hard times! Ashley: you have been a wonderful inspiration to all of us who hurt & are going through soem ‘tough’ times! I have 11+ auto-immune diseases, and have had 2 Neck-fusion surgeries in the last year, but God has SEEN ME THROUGH & wonderful friends that I have here on sites like this! God Bless you Ashley & ALL my friends who are trying just to get through ANOTHER day!

  6. Lovely photo and sincerely and well-written post. I share many of the points you raised.
    Great energies for your advocacy! Keep getting well by what you are already doing, thinking, feeling!

  7. Thanks for this inspiring post. I have just found out I may have MS and am having a very hard time coming to terms with it emotionally. My fear and worry is worse than the symptoms. Your post has made me feel better. I know I am not alone.

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