Life lessons

Here are the posts I’ve written pertaining to the social and emotional struggles of living with chronic and/or progressive disease. These span across several years, from various states of mind, the newest posts at the top. There is anger; there is denial; there is compassion; there is acceptance.
I hope you find what you need.

A Very Special Way of Life:

“I’m not used to living this kind of life. It’s so different from what I was supposed to have, so different from what I was used to… When you tell people these things, they immediately pity you and interpret it as a bad kind of life, or a sad kind of life, “oh you poor thing…”But I feel neither sad nor pitiful.”

“Of Course It’s Easy for YOU” Syndrome:

“So how do you respond when someone looks at something you’ve worked your ass off for and thinks you only got it because the odds just fell into your favor? How do you process this inherent invalidation of all your struggles, and what does it mean about the person who said it?”

There’s this friend I have…:

“I’m proud of them for getting out of bed whenever they have the option. I’m proud of them for not giving up on life after it turned out so drastically different from their plans. I’m proud of them for continuing to try new things whenever they have the capacity, and for acknowledging, accepting, and loving themselves whenever they DON’T have it.”

Coping with Chronic Illness: Your Life Is Not Over:

“The first thing I believe most people want to know when they get sick, is that their life isn’t over. You’re scared, and you think your life cannot possible continue unless it continues on the path you were already on before the illness arrived. I offer you my compassion. Things are going to change, but I assure you, your life isn’t over.”

How Did It Get Like This? I Was Not Raised to Be Peaceful.:

“Like Mara trying to mislead the Buddha, I could practically hear the voices of my family in my head as I tried to deprogram my former brainwashing:

Who are you to think you can do this? Who are you to think you have what it takes to find your own peace? Who are you to investigate what YOU want to know instead of trusting what you were taught? Who are you to take enlightenment into your own hands? Who are you to think you are even worth it?

Creativity and the Fear of Being Forgotten:

“I realized that I wanted to paint and produce art, not out of a genuine desire and love of the process, but out of fear of not leaving something behind more than memories. That was a difficult pill to swallow, but finally everything made sense. I was frustrated because the act of painting, in that moment, was no longer about expressing joy, but controlling anxiety.”

Advance Directives and Treatment Planning, Part 2 of 2: It’s YOUR Body and These Are YOUR Choices:

“You don’t have to do what’s ‘expected’ of you, when it comes to your health. Whether that concerns end of life care, medical treatments, or prescription options: If you want them, and you think they’re worth the risk–and they all have risks–then try to get them. But don’t feel pressured to get them just because someone else thinks it’s right, because your doctor thinks it’s right, or because other people wish they could have it, if it’s not really what YOU want for YOUR body and YOUR life.”

The Choice of Someone With Progressive Disease to Stop Treatment, Part 2 of 2: The Call to Start Living:

“Would I blame myself in the future, for not taking action right now to ‘fix’ it? There’s only a tiny possibility it could make things better, temporarily, but it’s just another way to prolong the inevitable. The loss of life that I would experience trying to keep up with everything involved in ‘fixing’ this, is not worth any benefit I might gain in health, later on. I do not want that for myself anymore.”

The Choice of Someone With Progressive Disease to Stop Treatment, Part 1 of 2: Wrestling With the Universe:

“I knew what I wanted, but I felt guilty for wanting it. Probably as a remnant from my more religious upbringing, I actually felt like God would be angry with me for my decision. I automatically felt like choosing to live without fighting disease, would be choosing to die, so how could The Universe possibly support me in that? I felt like I couldn’t trust myself anymore.”

What all could you do if you just changed your expectations of how to do it?:

“I’m not going to stop doing things just because I can’t do them the way I used to, or the way I want. The end result is still possible, I just have to achieve it in a different way.”

What do you really want your good health for, anyway? (Don’t wait):

“There is no longer a “things I’ll do when I get better” category in my brain. … I realized that many of the things I wanted to do were still possible if I just went about them a different way and stopped waiting for that imagined “better time” in the future… A future I’m not even guaranteed to get.”

The Darker Side of Relating Christianity to Chronic Illness (rewritten October 2015):

“The Christians I encountered literally blamed me for this disease. They told me I must have been doing something wrong in my life for this to be happening, and said God was ‘allowing satan to punish [me]’ for it.”

“All is well, and has been, and will be”:

“This year I learned that looking forward is still looking away from the present. … I’ve been noticing that now it no longer serves me to see this ‘attack on Lyme’ as a battle to be won, where anything other than eliminating the bugs is a failure. … I have to redefine what ‘winning’ means to me.”

Unpopular Opinion? The Taboo of Gratitude Within Chronic Illness Communities:

“I find it better to realize that having anything to help us through disease is a miracle, because we are not, in fact, entitled to it, but blessed that we got sick in a place where anything at all could be done for us.”

“‘Just try harder’: The Health Bootstraps” (via this ain’t livin’):

“…It suggests the patient is in control of the illness, and should be able to beat it by trying harder. …Anyone who does’t [sic] ‘try harder’ is thrown away like so much garbage and deemed unworthy of assistance, and the mectric [sic] used to determine if someone is trying hard enough is always based on the views of an outsider.“

I am not my body:

“I am not my body because I am not the sickness, the weakness, the pain, or systemic dysfunction that prevents me from doing what I attempt on any given day. I am not my body’s shortcomings. I am not what my disease does, whether physical or mental, and I will not feel guilty because my body is sick.”

Having Determination Does Not Always Equal Curing a Disease:

“You can’t say being motivated and refusing your circumstances–“I got better because I wouldn’t settle for anything less!”–is going to get everyone well, because it gives those who aren’t so lucky the delusion that they’re somehow responsible.”

Guest blogger: “It is healthy to talk about what you are going through”:

“I’m really tired of ‘not talking about your illness’ equaling ‘being a stronger person.’  No. … Illness is not something to be shoved away and ignored like it is dirty and shameful.  No.”

My Life IS My Advocacy: Pay Attention to How I Got This So You Can Avoid It.:

“Pay attention to how I got this, and how hard it is for me to get my health back, so you can avoid it. Know that I was just like you, once. Know that I didn’t think it could’ve happened to me, either. That’s the biggest advocacy I can do.”

Thoughts on Emily Collingridge and Being Judged for Our Disabilities:

“It’s awful being reminded–and now, of all times–that there are people out there who think you, as a human being living with a disability, are inferior, weak, and lazy, for the sole reason that you dare to exist without also inspiring them.”

How I Forgave the Doctors That Called Me “Crazy”:

“All in all, the stage of acceptance known as ‘anger’ doesn’t really ~just go away~ like some of the others. The resentment and anger at all the doctors who could have helped you sooner had any one of them just not been so determined to say it was ‘all in your head’; the anger at those who said there was nothing wrong with you…”

Letting Go of Society’s Expectations (…and Bartonella):

“I have fought too hard to get to this point, and I don’t want what society says I should be doing to dictate what would actually be best for me. I reject the idea that my only purpose in getting well should be to immediately resume the life I once had, or try to get it as close as possible.”

Guilt Be Gone! (via Chris’ Companions of Lyme):

“I keep telling Cee it’s not her fault.  She didn’t go running into a hot bed of ticks with a Bite Me sign on her.  She didn’t plan to be in pain for years and almost die just for the fun of it.  It happened.”

Fireflies, Coyote Arias and Friendships Adrift (via My CFS Life):

“I’ve been struggling a lot again lately with feeling marooned. In my spirituality, I am increasingly aware that I am intended to live differently, and that it is both grace and blessing. That doesn’t make it easy – this feeling of being left behind.”

I’m sick and disabled AND I’m allowed to have some enjoyment in life.:

“It brings up every bit of elitist ableism we’ve suffered over the years that constantly tries to strenghten the divide between the sick “us” and the healthy “them”, in order to affirm the following: You can only do “sick people” things, because real sick people don’t have any fun… You are different, we are not the same, so be what I expect you to be.”

Battle of the Pills: What Managing Chronic Lyme Disease Really Looks Like:

“I feel ashamed that I need so many medications while the majority of people in my age bracket might take one or two, or maybe none at all. I feel scared at the reality that if you were to take them all away from me, I would crumble, my body becoming a non-functioning mess, encompassed by disease before it slowly withered away; it’s painful to be reminded of how much I need them.”

Self-Respect and Friendships: Standing Up for Yourself While Chronically Ill:

“If you leave a person when they’re down, if you don’t think they’re worth staying in contact with just because they’ve gotten a disease that makes you uncomfortable, don’t be surprised when they don’t want anything to do with you, whether they get better or not.

Tips on Managing the “Bad Days” of Chronic Illness:

“You wake up and find that you’re weak without even having done anything. Sitting up leaves you out of breath. Any attempt at movement is met with pain from every involved muscle and joint. You’re probably having a “bad day”! How do I deal with a bad day? I thought I’d share a bit, being somewhat of a chronic illness veteran at this point.”

Media Portrayals of Resilience in Disability and Illness:

“You’ve all heard the stories: Despite their disability, so and so did ________.  However, how often do hear about the people who are severely disabled to the point that they can’t do ________?”

“The times weren’t right, and I couldn’t talk about…” needing a wheelchair.:

“There are many people who get a wheelchair before it becomes a full-time necessity. … I am not one of those people.”

When You Do Everything Right But You Only Get Sicker:

“I am doing everything possible to beat this, and if it’s not enough, it’s not enough. I really have to stop feeling personally responsible every time my body fails me, and get rid of the idea that it’s somehow the other way around.”

To see posts I may not have had a chance to add here, yet, but still apply, you may view the Life Lessons category.

2 thoughts on “Life lessons

  1. I adore this new section!!! :) Wonderful the way you did this, with the summaries there … so very cool. This is something I look for … other people’s experiences and how they cope with this rollercoaster ride! Thank you for being YOU! :)


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