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Chronic Snarkopolist: Healing Emotional Wounds
Hello my loves!
So many people have shared their vulnerabilities with me and I have always been grateful and humbled by how beautiful they are. The other day someone reached out and let me know that the work I do as a patient advocate sharing my stories as a patient is also valuable. It made me feel good. We are all necessary.
Meanwhile, it always amuses me how other people seem so perfectly normal and beautiful when they share their stories. Yet doing so often makes me feel so anxious and lacking. I sometimes push people away before they can truly get to know me. Or I hide behind humor or my intellect because of the vulnerability I feel.
Life is so much easier to talk than actually live! I was reading and sharing with doctors important research about how chronically ill patients feel. It included everything we discuss, from physical pain, loss of relationship, lack of connection, to financial problems. Never when I shared this “expert research” did I say, “I have felt this way too.” It was just easier to disconnect and report facts. Even though I live in fear that I will never be really smart enough to outrun my own illnesses and be a truly wonderful scholar, though that is my dream and goal.
There is not enough self-control in the world to control an illness inside our own body. Yet we might try. One friend once told me, “Don’t be damsel in distress Melissa.” And that voice resonated so much more than every single advice we give each other about, “asking for help when we need it.” The fear that I am too much or too overwhelming and make too many demands has followed me through life. I fear being a damsel in distress needing rescued and pitied. This fear has far outweighed my abilities to simply ask for help or tell people I am in pain or don’t feel good.
Similarly, when I do ask for help, it is often gone on so long my problem or illness has spun out of control. If I had asked sooner, I could have gotten resources or connections and surrounded myself with support. Instead, I stick my head in the ground and think, “I am not damsel, I do not need rescued.” I judge myself harshly because I am so tired of being sick. I want so badly to be “normal.”
For instance, if I don’t FEEL like going out, I don’t have to belabor an entire story of a lifetime of illness on someone. I can simply say, “I’m feeling under the weather tonight.” Everyone knows what that means. Why then, might I gut it out and come home feeling worse? Or, why might I not ask my friends to stay in and do something low key that works better for me? They might. I generally don’t ask because I don’t want to be a burden or I fear being rejected. I loathe my own needs – both emotional and physical. I resent my illness. And I live in terror of being rejected for my needs and weaknesses.
The other day, I was playing with a friend’s cat and I took a ribbon because my friend only has a ball to throw. But my arm and hands and joints were hurting so badly throwing the ball was terribly uncomfortable. My friend didn’t understand why I would prefer to play with a ribbon and had never used a ribbon. They kept handing me the ball and saying, “My cat REALLY likes to play with this.” I finally put the ribbon away and threw the ball. It was excruciating. I was so angry at myself for not explaining myself. I knew I wasn’t feeling up to throwing a ball. I wanted to play and connect with the cat. Why then didn’t I simply say, “I know, but this is something less strenuous for me, even though you and your cat can usually play with the ball, I can’t today, even though it is so much fun.”
I’m trying to remember this. It is important to understand how I tick and how I fear being too burdensome. And add that to the mix of asking for any kind of help. Add to that fear of sharing anything about illness or using it as “an excuse,” for kindness or compassion. Instead, I allow friendships to be cut off or I disconnect and break away from people because I fear so greatly my own vulnerability. It is time to heal from the inside out. I truly believe it is possible. Sharing it here was a start.
I would love to hear your stories and strategies for allowing other people to know your needs both emotional and physical. I would love to know how you ask for help. How do you go about healing your emotional wounds associated with illness? Do you have fears of being too much or too little? Have you had successes? How do you heal them? Do you worry about letting people get to know you and see the “real you?” How you handle that? I would love to know! If we are all in this together, your stories and sharing is necessary and valuable! Please tell me! I must know!
I will see you same time next week! Kiss kiss!
-Melissa
Tags: being vulnerable, chronic illness blog, chronic illness column, chronic illness support, feelings, finding our way through chronic illness, learning to cope with emotions and life and chronic illness, learning to share our diseases with others, Learning to share the truth
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9 Responses to “Chronic Snarkopolist: Healing Emotional Wounds”
Leave a Reply to Melissa Travis
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Oh Melissa, your article above truly resonates with me and how I feel most days. Thank you SO MUCH for putting it into such eloquent words!
Hugs,
Linda 🙂
Dearest Linda,
You are so lovely to write in and let me know that my words resonated with you. I love to hear your perspectives as well. We are all in this together. We are all here sharing and healing.
xo
Melissa
Hi Melissa, this is a wonderful post. It resonates with me for 3 reasons:
1) as a decade long on-line community diary writer, I am constantly reminded that whilst scientific facts and metrics ‘float the boats’ of some, authentic personal voices can have far more power to touch other people’s lives, and online, they touch lives all over the world.
2) I work and study in the field of ‘organisational development’ and believe making a connection with people on an emotional level is critically important for learning, it helps the facts become personally meaningful for people and is the element that tends to inspire people the most.
3) Lastly, I am currently working for a new integrative cancer hospital in Australia that is going to open in a few years and one of our key principles is patient centricity. We have involved patients in every aspect of our design (from organisational culture and behaviours, to the environment and facilities within our building, to having an active and respected voice in their own treatment).
So, please trust your voice, you are making a difference to the health community and individuals like me who share your experiences. This particular story is the conundrum that many of us face, we want to be strong and independent and if we didn’t have a health issue that would be relatively easier. However, sometimes being honest about needing help and explaining why helps our partners, kids, families, colleagues and friends to understand where we are at.
Thank you x
Hello Angie!
Thank you so much for sharing this with me. Being authentic matters to me. I have been working very hard to integrate who I am (on and offline) and become authentic and real.
Thank you so much for commenting! And please continue to reach in and share and heal here!
So much love!
xo
Melissa
Hi Melissa, speaking the truth seems so easy, yet it is one of the hardest things to do. Why is that? I do not have the answer. But, I do know I do not want anyone’s pity…I want honesty. If you cannot handle what I am going through then tell me. Alas, it is not so easy to speak the truth.
I try to speak from the wisdom of my heart while listening to the intelligence of my head. It is not easy to tame the brain because it is so used to making all the decisions and does not want to let go of the control its had all these years. But, reading your story reminds me we all have similar struggles that we experience on a daily basis.
Thanks for sharing, again, who you are from the inside out.
☮ ♥
Monica
Thank you so much Monica! It is so much comfort to know that others are on this path of healing and sharing and listening to their hearts too as we heal together!
I’m always so grateful when you reach in and share with me and with the rest of us your story and experiences here. I’m learning again and again how to speak up and share but knowing it is a collective experience helps.
So much love!
Melissa
What a beautiful, vulnerable post. I’m not sure where the fear of asking for help or being a burden comes from. For me, I think a big part is my German-Russian prairie-stoic upbringing in North Dakota. (Which is not in any way to be interpreted as blaming my parents, whom I adored and will miss as long as I live.)
While I don’t have a chronic illness (yet!), recovering from breast-cancer surgery was a real eye opener. I had to learn to let people, especially my husband, help me. Even then, he wanted me to wake him up in the middle of the night if I needed to get up, and I couldn’t do it. I always tell people asking for help is like a 10 on that famous pain scale.
I don’t know how we get over it other than to just keep practicing until we get comfortable. And a corollary to that is I learned how to say what I’m feeling in general more, things like “I appreciate you” and “I like you.”
I was writing my company’s shareholders’ report that year and realized how much I appreciated our CEO and executive team letting me write it my way and not micro-editing me to death, so I e-mailed them and told them that. I’m sure they all probably thought I was nuts but then I figured they also all have wives, daughters-sisters, moms–they can probably handle it 🙂
Bless you and keep the great stories coming!
Dearest Jackie,
Thank you so much for your comments and sharing your perspectives too! Yes! It is like a 10 on the pain scale isn’t it! Where is the “too much” and where is the “I can do it” and where is the “sure, I can use a hand?” 🙂 I’m so happy you understand! And I’m so grateful you are able to write in and tell people how much you appreciate and love them! This is a big deal too!
I’ve been feeling it important to access those areas in my life as well. The thank yous and gratitudes as NECESSARY to me. Those are also “speaking up.” Those are also using our voices to say how we feel!
Thank you for this lovely comment!!
x
Melissa
Oh my dear Melissa, your post hits home. The questions at the end are especially relevant to my life and my fears, frustrations, and “overwhelmability”! I have Hashimoto’s disease along with some of the other unpleasant symptoms and disorders I commonly lump together as it’s “cronies.” Before diagnosis and treatment, and in serious pain and depression, I withdrew from everyone and everything that is precious to me. I figured the illness was all in my head and I just needed to slow down, take a deep breath, and to pull on my big girl pants and get over it. I totally didn’t want pity and I wasn’t going to allow anyone to rescue me! But you’re right–there’s not enough self-control in the world to do it myself.
My husband is the one whom I’ve hurt the most. He sees the physical, emotional, and mental breakdowns, and often is the target of the resulting verbal venom. He feels so helpless and frustrated when he can’t just fix me, esp when we’ve made plans to do something and I have to cancel last minute because I just can’t muster the strength and energy, or am too tired or wired to put on a face like everything’s OK. I’ve told my husband that when I get emotional or about to have a panic attack, to just stop everything and ask me if I’m OK, or sometimes just give me a hug. It seems to throw something in my spokes and diffuse whatever is going on inside this brain! I don’t want his pity, but I don’t want him to leave me behind on the times when I can’t “run with the big dogs” at the moment (I am typically very active, outgoing, commonsensical, and competitive. It bothers us all when I can’t or don’t want to be!) I told him I need him to be calm and patient when I’m “having a moment”–it seems I just want someone there to basically shield me from the world as I catch my breath, then to encourage me (but not push! it’s hard to explain that to him too!) to get back on the horse (or get some rest…THEN get back on the horse). I don’t want pity but I don’t want to be pushed! I want someone to come alongside and say, “I don’t feel sorry for you. But we’re going to get through this together, and you ARE going to be okay.” (Sometimes he’s GREAT at this. Sometimes, not so much. But it’s a process and we get through it 🙂
My older sister suffers from chronic illness as well, both of us in our early 30’s. We take turns crying and encouraging each other. But never pitying. 🙂 She sent me a story once about the point we come to when all you can do is “hang tuff and pray hard.” So often when I don’t feel like or am not able to hang tuff or pray, I shoot her a text msg that says “please ph (pray hard) b/c I don’t feel like ht (hanging tough)!” It’s just nice to let someone know what I’m feeling and know I’m not burdening her and that she is in the ring fighting with me.
As the other awesome people who responded said, honesty and authenticity have become so precious to me as well. But I do definitely fear burdening people. I’m not afraid to tell people about my “hashi” anymore, because I’ve come to the point where I just want to be REAL! Hashimoto’s is not WHO I am, but it definitely plays an influential part in my life. I don’t want anyone to see me as a victim (or damsel!) and I hate it when I feel like I’m complaining, but I try to share with them my achievements, like when I’ve had a pain-free day! If they respond saying they didn’t know that I usually had pain, I tell them I accept the compliment that they don’t think I’m a complainer 🙂 I apologize to people whom I feel I’ve avoided and ignored and then don’t hold on to my regret. I give what I can, thank people for their patience. When someone asks how they can help, I tell them to keep an eye out for gluten-free dessert ideas for me. It’s simple and seemingly insignificant sometimes, but people keep me in mind…and sometimes an amazing gluten-free peanut butter and Hershey’s kiss cookie is soothing for the soul, and more theraputic than either of us expected. 🙂 Give people simple ways to come alongside you. It keeps you tied to them, but not burdensome. They enjoy being able to help you out.
Basically, I think we all need a patient advocate in our lives. 🙂 Thus the reason we love Dear Thyroid, right? Find someone you can guiltlessly rely on to be the one who can help you hang tuff and pray hard, and that picks up that slack when you just can’t. Then you don’t have to feel like a burden to others.
I better shut up and get back to work, but I’ll leave you with my 2 favorite pieces of advice:
From Shakespeare’s ‘Much Ado About Nothing’ Scene 5, act 2, SERVE GOD, LOVE ME, AND MEND.
And of course…HANG TUFF, PRAY HARD.
Blesings,
Kristy with a K
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