For Your Consideration… What to say when you are put down for “being your illness”

So I have been experiencing a lot of activity on one of my latest blog posts and I have also been reposting some others that are relevant to the struggle.

I have been getting saturated with great comments on those so grateful that someone is voicing their experience and giving credence to their experiences to their friends and family.

That said of course I get negativity once and a while (as we all do); but what really hurts is when it comes from someone within the chronic illness community. 

I see it too often (mostly on the Facebook feeds of others) attacking because someone’s experience is different than their’s, or they think the person is too vocal, or whatever….

Why do we do this? Why do we hurt each other? Why are we so narcissistic that we seem to think how we think or feel or our experiences has to universal and be exactly what everyone else’s experiences should be that has difficulty and is sick? Apparently this is a mindset that allows for zero tolerance or understanding that diseases manifest differently in different people and affect our minds, bodies and chemistry differently. Wow, what a concept!
So I offer up to you the following comment left on one of my posts (that was written to try and raise awareness and understanding),  and my re-buttal to this comment. I also want to ask you; the chronic illness community to join the conversation and share your experiences. I will ask that there be no attacks, swearing, name calling or ugliness, rather let us use this as an opportunity and platform to further raise awareness and keep the conversation and testimonies going.

Here we go..

Negative Blog Commentor:

“I have what is considered an invisible illness (a pretty freaky one), and honestly, at the end of the day, I can choose to live a normal, productive life. Are there challenges? Sure. But we all face challenges. ALL of us. Some are physical. Some are emotional. Some are psychological, financial, relational, career-centered, social… you name it. 
I’m uncertain as to why so many sufferers from invisible or even visible illnesses choose to be victims daily. It’s a choice to keep life in perspective, to keep moving, and to realize we’re not special because we suffer. Who doesn’t suffer? Did you know that the average person in the western world has, on average, 5 things going on with their body that could be/are serious? Illness doesn’t excuse us from life, so live it fully. 
Maybe you’re not datable because you insist on BEING your illness, 24/7. Is it all you talk about? Post about? Think about? Is there nothing more of you than your illness? Who wants to date someone who finds their identity in being sick? Do you bring your illness up every time you meet someone? Talk on the phone? Go anywhere? If you know to converse about nothing else, then you’ll stay single. 
Stop being your illness. It doesn’t make you special. It makes you common. Be the best parts of YOU… because you are not your Lyme, fibromyalgia, diabetes, epilepsy, MS, lupus, or any other invisible condition. You are YOU. Offer YOU. Potential mates don’t want to hear about nothing but your illness any more than you want to hear about all their exes, money issues, terrible living arrangements, bad pizza, or abysmal grades if you’re in school. Be you… stop being a victim.”
My rebuttal: 

“(Person’s name), I had to pause, think, stop and pray before responding because my immediate (fleshly) reaction was anger; anger that you have projected your own experience onto others without understanding that even though we all suffer chronic illness, the nuances, experiences, manifestations, brain chemistries, how we are individually effected, where the diseases have most effected us, our life paradigms, backgrounds… and SO much more differ radically! I cannot say this with enough emphasis. 
So first I want to praise you for your outlook and that you are “not your disease” (none of us truly are) and that you have the ability and will to live and thrive by fighting through. Not everyone is you. 
May I offer up to you for consideration that most of us want that very same thing. Who “chooses” to be a victim? Far fewer than you obviously think.

Maybe (just for the sake of argument) a very small minority that already have psychological issues or have an abusive background or “—–” might in fact use illness to further that inner victim mentally and to feed that need to get attention.

BUT! Most of those I have come across (by a landslide majority) who are suffering from chronic illness that has re-shaped their lives and the very essence of who they are… are desperate to be normal, to simply live and not be encumbered and isolated and in pain, fatigued beyond functionality….and missing out on life. 
I also want to let you know that having been chronically ill now for decades, and having experienced all the facets and manifestations (highs, lows and everything in between) I KNOW what it is like to be so physically and mentally (by this I don’t just mean mindset, but literal bacteria that has crossed the blood brain barrier affecting my mind in ways I had ZERO control of) sick that I was incapable of just “being me” or even having access to parts of my own mind or personality. 

I do understand that if you have not experienced this kind of illness you will have no comprehension, and I am honestly glad that you haven’t.

Consider yourself lucky, blessed, fortunate… there are many who are not.
I also want to add that no, in fact for the most part in my personal life I do not go around talking about my illness all the time. It is not the first thing I mention when I meet new people, it is almost never talked about among my coworkers, even with my closest friends we focus on other things, because I wouldn’t want to hear it all the time, why would they?

Again I also want to add that like I mentioned before my health goes up and down, I have about 2/3 of the year accumulatively that I am really struggling, and it’s in those times that I tend to write more about said struggle. But, I have good months where I feel much better and… guess what? I use it to my full advantage snd be as active as I can and as social as I can and LIVE and be me. I jump at the opportunity when my brain and body allow. And I am not alone. In fact it is pretty common for chronically ill people to overdue and set themselves back when they are feeling better because this is what they do desperately want. Because they know they are “not their disease”. 
So instead of judging others harshly, accusing, condemning, bad-mouthing and making great big assumptions that EVERYONE is exactly like you and your experience with a chronic illness, (because after all according to you everyone has a clear head, full access to their faculties, and an iron will to overcome anything and can’t possibly be so sick that they can’t just get out there and live) and should just pick up their bootstraps and “not be their illness”. 

Maybe do some reading and research, especially on neurological effects of Lyme and other illnesses that can cross the blood-brain barrier and/or mess with your hormones and other functionalities that make you “you” so that you can have a small piece of empathy for those that are less fortunate than you and desperately want to thrive instead of just exist.
*also I might add that I blog not to whine or “be my illness” but because I have deep empathy for the suffering and wish to give a voice and some comfort to those that have none. ”

The Crest Of The Hill

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I was told by my auto immune specialist a couple months into my Lyme treatment that most patients feel about 90% better at the 9-10 month point in treatment. I did not believe him at all. Sitting in that office, my body heavy from toxic weight gain and terrible water retention and inflammation, a throbbing ache in my joints and deep tissue pain in my limbs that had been there for years…I was tired despite getting plenty of sleep the night before, and a heavy cloud hung over my brain. My Naturopath also told me that there would come a day when I would quite suddenly start to feel better, that I would know the tide had turned……yeah right.

Well my autoimmune doctor was wrong, it is about 11 months. But yes, quite suddenly just within the last few weeks it is like an internal switch went on and my baseline energy/pain/cognition/mood….everything, is suddenly much better. I am still dealing with pain and swelling, but my weight suddenly started to drop off, I have more energy, I actually want to see people and do activities.

I think (for me) two things jump started the sudden turn around; about 6-8 weeks ago I had a DNA profile run to test the detox systems in my body to see what wasn’t working. This has been a persistent problem for me with my body having difficulty detoxing, and having to be on constant kidney, liver and other gland and organ support. My Naturopath made adjustments in my herbal and tincture regime according to the results of the test and this is when things started looking up. In case any of you are struggling in this area the test is run by Genova Diagnostics http://www.gdx.net/product/10038

Now this did start a slight upswing, but not a major one. The other factor is that I really started digging deeper with my relationship with God. I really had a faith crisis in 2012, I was just worn down by everything that was going on in my life, and this year I have been slowly working my way back.

 I just recently came to a place of real peace trusting Him, letting go of a lot of hurt and grief and disappointment, and I honestly feel my better health followed right behind.

 

So, I find myself in a different place all of a sudden in this journey of illness, where I am not well yet but maybe I am at about 80%. You would think I would have 100% positive emotions and outlook with this change, but what is taking me by surprise is that is not quite the case. When you have been severely ill for a very long time and just live day to day, you are in “survival mode”.you are looking down at your feet because that is all you can muster. But when wellness starts to happen it is like waking up from a coma, and the years that have been stolen from you, the life you haven’t lived, the ravages of disease on your body, kind of hit home. I am finding I have to reinvent my thinking because somewhere long ago I lost a lot of myself. That said, God has also grown me greatly in maturity and faith, and in that sense I am like a butterfly emerging from a cocoon. So now it is going to be one step at a time, seeing what God has for me, and still of course dealing with fighting the disease for another year, and realistically for the rest of my life as it lies in remission in my body.

Uphill?

I am going to very tentatively say (fingers crossed, wood knocked upon, God willing, with trepidation) I think I am in a bit if an upswing with my health right now. I do realize we never know how long the good times will last, sometimes mere days, sometimes longer. But I am waiting for the day when “the crash” doesn’t come. I have hope in looking to my one Naturopath who is in remission from Lyme and has been asymptomatic for many years. Someday it will be my turn.