I’ve debated whether or not to write about this situation for over 7 months now. Part of me felt like it would only make a horrendous situation worse. Part of me felt like despite taking the high road for months, posting this to the blog world might be the first time I cross a line, and then I won’t be completely innocent anymore.
But ya know what?
This story is important.
And part of the reason it’s important is because this story is not uncommon. And under no circumstance, should this type of thing be happening. But yet it is. And not just to me, but to so many of my friends and fellow Lyme sufferers.
We have an ignorance crisis right now about Lyme Disease and advocacy and awareness is desperately needed.
Lyme patients are needlessly suffering a great deal more than they already are, and a big part of it is because people say and do things to those with Lyme that they wouldn’t dare do or say to someone with Cancer, or a more visible illness.
And while I hate making comparisons, because all serious diseases are uniquely challenging in their own way, I don’t know how else to make that point.
People with Lyme are some of the sickest, bravest and most resilient people I know. We have some of the most complex health problems and the most involved treatment protocols… and yet we suffer in silence and we’re routinely judged, doubted, and criticized because we don’t look sick.
People routinely question our illness, to our faces.
And I’m not just talking about acquaintances and strangers; I’m talking about people who intimately know and even love the Lyme patient, who know about all the treatment that their doing, and know that their life has come to a screeching halt while desperately trying to regain their health, still choosing to say ridiculous crap.
A few of my personal favorites over the years that were said straight to my face (and some of these were said by loving friends and family members no less!) are:
– “Did you ever think that your fine, and maybe all the treatment you’re doing is what’s making you sick?”
– “But you look so healthy… Your eyes are so blue! You need to fire your doctor, he’s clearly scamming you.”
– “It could always be worse right? At least it isn’t cancer.”
– “Oh yeah, I saw you went to Kansas for treatment, right? Did you see like a real doctor there or like a life coach?”
– “Earlier when I was getting froyo, there was a collection cup at the counter for a young girl with Lyme Disease in a wheelchair, you should be grateful you’re not that bad, eh?”
– “You must not be in that much pain if you’re laughing and smiling!”
– “I think you just need to get out more. Maybe you just need to get on a good sleep schedule, and force yourself to wake up and get outside and do some exercise and then you’ll feel better.”
– “I know a lot of people with Lyme, and you shouldn’t be this bad. What are you so sick? Are you meditating?”
– “I prayed about it, and God told me that the reason you’re not healed yet is because you’re not ready to be better.”
These are all prime examples of things not to say to someone with an invisible chronic illness.
(Especially the last one – don’t even get me started.)
And while internally I was screaming “are you freaking kidding me?!?” every single time I heard these types of comments over the years, I always took the time to mask my facial expression and politely and diplomatically respond. Because I am able to recognize that these types of comments are normally said by others who most likely mean well.
They’re said because someone genuinely feels bad, but also feels awkward, confused, embarrassed, or uneducated and thus words their question insensitively, or tries to offer a platitude in an attempt to make the sick individual feel better.
It’s almost guaranteed to do the opposite.
It alleviates the temporary discomfort of the speaker, and most likely makes the sick individual feel worse… Much like someone saying “It was God’s will, and God’s timing is always perfect” to the mother of a young child that just died.
Some people could really use a bit more practice in the empathy and “thinking before speaking” departments. Am I right?
But that’s just a fact of life.
I’ve found that in general, most human beings are pretty incompetent in knowing how to respond to other people’s pain, unless they’ve gone through a similar pain themselves. Which is unfortunate, but honestly, how would they know?
So I concluded that part of having an invisible illness is learning to smile at the insensitive remarks and brush them off. Or better yet, look for ways to find good intent.
I decided early on that unless I had a really close relationship with someone who was involved in my day-to-day, it wasn’t worth it to constantly correct others. Because I’m acutely aware of the difficulties and inconveniences that my disease demands. My activity, travel, and dietary restrictions alone put enough of a strain on my friends and family, and I never wanted to add another layer of difficulty by constantly asking those around me to rethink their insensitive remarks.
However, I’ve now learned that by staying silent, I was doing myself, and others suffering with invisible illnesses, an incredible injustice.
Because by keeping quiet, you’re only perpetuating ignorance. It’s better to compassionately educate someone than to let these comments slide.
And here’s why:
Almost a month ago, I had yet another brutal discussion with the two people, who I used to be close to, who have repeatedly attacked my integrity and dignity for the better half of a year.
Two people who I sacrificed my health many times for, in order to grow and maintain the relationship over the past couple years. I pushed myself to make it to important occasions, regularly did things that were beyond my body’s capacity for the benefit of the group, never corrected ignorant comments about my illness, and always gave the benefit of the doubt.
And 7 months ago, while I was too sick to leave my house – and subsequently had to cancel plans – they became enraged and took it upon themselves to question my integrity, the legitimacy and severity of my illness, the way I cope with my symptoms, and the treatments I choose to do.
Without ever inviting them to discuss my illness, over the past several months, they have repeatedly:
– Complained that I was “too positive” to be so sick
– Said I needed to “do more than just sit around all day and hope to get better”
– Declared that I should “accept the fact that I might be just as sick 15 years from now”
– Told me they had read up on Lyme and it was “very controversial,” so they “have a right to question my illness and my treatments”
– Asked me if I thought I would be better by now if I just took more “real medicine”
– Said they *laughed* reading one of my blog posts where I listed my symptoms because they “didn’t see heart attack on there, so it’s not life threatening”
– Asked “If it’s really that bad, then why even bother getting out of bed, why don’t you just roll over and pull the covers over your head?”
– Declared that I’m using my illness as an excuse to avoid things I don’t want to do
– Stated that they “just don’t believe me” because I’ve always looked completely healthy, and they’ve “never actually seen me look sick”
– Claimed that I must not be that bad since I’ve never been in the hospital (LOL)
– When I corrected them about the many times I was in the hospital with fatal infections, they said “how was I supposed to know that? And you haven’t been in the hospital recently, so obviously you’re not that sick”
– Said “Your symptom list is a joke, I have the same symptoms as you and I still go to work and have a normal life”(LOL again)
– Claimed “I get tired and have pain and you don’t see me complaining about it”
– Argued with me and said they “just don’t believe in that,” about my need to avoid certain things my doctors told me are medically necessary to avoid, that are vital to my healing and could negate the effects of my treatments
– Said I need to “get thicker skin” and “suck it up”
– Stated that they “don’t care how sick I am, it’s always rude to cancel plans”
– Said that they “question how smart I am” and therefore can make their own opinions about my disease
– Straight up said they’re “not interested in being educated on the topic”
And so much more insanity.
Literally SO MUCH MORE. I could double that list, but it would probably give away their identity.
These cruel, ignorant judgments used to be some of my worst fear for years (behind the fear of not getting better and the fear of dying.) I was terrified that those around me would:
- not believe me
- judge me as lazy
- question me because my abilities fluctuate day to day
- misinterpret how I conduct myself in order to manage my symptoms
- think I’m an entitled diva, for requiring or doing the things necessary to take care of myself
It loomed in the back of my mind in every social situation, and every interaction. Now, after what I’ve been through the past 8+ years, I should almost laugh when these things are said, because they could not be further from the truth. If anyone was magically transported into my body, for just an hour, I know wholeheartedly that they would be ashamed of themselves for their previous judgments.
While I don’t feel the need to defend myself on how inaccurate and ridiculous these comments are, they still feel like salt in a wound. It was beyond shocking, to spend so much time being considerate of others’ feelings only to have these same people sit across from me and spew these belligerent, horrendous things.
Things I know are not true.
The things I worked hard to convince myself, over and over again, that people weren’t thinking.
Said out loud.
To my face.
By people who should know better. People who I trusted. People who should know me, and should know why those statements are absolutely asinine… if they paid attention at all. People who literally have no excuse.
Years of giving the benefit of the doubt didn’t prepare me for when I received this onslaught of accusations and criticisms. I was stunned. I was literally too shocked to stand up for myself, and later when I did, I mistakenly accepted childish denial, insincere apologies and empty promises, thinking forgiveness and taking the high road was the right method.
Patience and compassion is always best, right?
Well, weeks after explaining why their comments were inaccurate and hurtful, they went back on their promises and the accusations only continued. I had had enough. I did everything in my power to draw very clear and firm boundaries to protect my already fragile health, and from there, the comments only got worse.
And THE KICKER:
To this day, all of the ignorant remarks have been repeatedly minimized and defended as simply “concern” and “attempts to understand.”
(Side note: if you truly believe that attacking and criticizing someone in a fit of rage is an appropriate way to try to understand someone, you have an immeasurable amount of personal development work to do.)
And last month, when the comments still continued in front of a third party, I was told that none of the above things were wrong, and that they will not only continue to say those comments, but that have a right to… because “Lyme is all a big controversy and they don’t have to believe me” and it’s all just simply a “difference of opinion.”
On top of all the hateful comments, lies, unending manipulations and suicidal threats that ensued after I stood up for myself, I was told that I’m the only one that has the problem. I’m making a big deal out of nothing and I’m just oversensitive. They would “happily move on and forget about it all, and accept me as long as I didn’t try to talk about it all the time.”
(Gee, they really make a strong case for persuading me to continue the relationship. How can I resist?)
I was repeatedly told that all they’ve done is “support and accept me.”
So guys, just in case you’re slow to realize it like I was – make no mistake…
This is abuse.
It’s verbal assault and it’s toxicity in its highest form.
Repeatedly questioning, skewing, discounting and belittling someone’s long term battle for survival – especially after that person repeatedly tells you those comments are completely inaccurate and hurtful, and asks you to stop – is psychological abuse.
And unfortunately, these types of comments are not at all uncommon when you have an invisible chronic illness. Almost everyone with late-stage Lyme has experienced this type of behavior to varying degrees – from doctors, friends, family and acquaintances alike.
It’s traumatic, to be dealing with a devastating disease that affects every hour of your life, that demands that you paint a smile on your face and push through immeasurable pain in order to keep some normalcy in your life… only to be told that you’re faking it, that “everyone deals with aches and pains,” and to be questioned, attacked and shamed by those around you for doing the necessary things to survive.
What continues to blow my mind is the need for people to see hair falling out, or a wheelchair, to believe that you have a serious disease.
Lyme Disease is called an invisible illness for a reason. Every single person I know with Lyme “looks” perfectly healthy. Vibrant even.
Yet I urge you to look closer.
Chronic Lyme patients are some of the sickest people I know. All it takes is sitting down and actually listening to all the treatments, therapies and lifestyle changes that someone with Lyme has tried, to realize that no sane person would put themselves through that torture if they weren’t desperately hoping for relief.
My illness may not be visibly obvious, like a wheelchair or a bald head would be… but if your paying attention AT ALL… you will see evidence of it in every single part of my life.
The worst suffering is hidden from you. Those are the days I do not leave my bed or the house, and do not answer my phone. But even in my best moments, my suffering is still there; it’s threaded throughout my life. It’s constantly right under the surface. You can see it in:
- The pain in my tired eyes.
- The way I let out an exasperated breath when you ask me how I’m feeling.
- The way I squirm and shift in my chair after only 10 minutes of sitting, due to the unbearable pain.
- The way I stutter and scramble to come up with an answer when you ask me what I’ve been up to since you’ve seen me last.
- The times I lay on the floor in public places, when no normal person would.
- The way I get up to “stretch” more often than an Olympic athlete.
- The way you catch me in another room, trying to discretely choke down a bunch of pills.
- The fact that I constantly wear work out attire, because other clothes are too painful.
- The way I smell like peppermint and other pain relieving oils when you hug me.
- The weird medical devices and contraptions I bring with me if I’m leaving the house for more than a few hours.
- The fact that I never leave the house without a massive amount of water with extra added electrolytes (which I’m constantly chugging) and emergency snacks, which are both an attempt to keep myself from passing out.
- The way I occasionally burst into tears when someone asks me if I’m okay, when my poker face fails because my symptoms are becoming unbearable.
- The endless lists of things I try to do, and things I try to avoid (that inevitably come up in conversation, because it’s impossible to hide some of them) in order to keep my symptoms at bay and give myself the best possible chance to heal.
Even from the outside looking in, it’s there in innumerable ways, if you’re willing to see it. And you could easily get a better, more informed picture of what it’s actually like, if you were to genuinely ask me. Unfortunately, most people never do.
And I get that. I do.
But I will never ever understand the type of person who thinks it’s okay to degrade and demoralize a fellow human being who is battling a serious disease, simply because it doesn’t make sense to them.
If you’re that person, and you think it’s appropriate to question and argue about someone else’s illness, and someone else’s suffering, you have a massive amount of soul searching and self-reflection to do. Point blank.
I’ve said this before and I’ll say it again: the worst thing you can do to someone with an invisible illness is make them feel like they need to prove it. Living with it is a hell you literally cannot imagine.
Ask yourself if you want to be a person that adds more pain to that.
If you’re annoyed that they aren’t better, inconvenienced by cancelled plans or dietary restrictions, questioning why treatments aren’t producing results, or wondering why they aren’t back at work yet… take a moment and put yourself in the shoes of the person that’s actually ill. Imagine how much worse it is for them. And then imagine what voicing those opinions does to someone who is fighting just to be able to take a shower, get dressed and feed themselves.
While you’re at it, take a second to remember how high-achieving and driven they were before they were diagnosed, and realize that people don’t halt their lives and throw tens of thousands of dollars at painful treatments unless it’s absolutely necessary.
This isn’t rocket science guys. It’s basic human compassion and empathy, and if you can’t find any in yourself, do everyone a favor and sit down and keep your mouth shut. People who are battling for their lives every day have better uses for their precious energy than to try to teach you how to be a decent human being.
Comments like these always sting, no matter how untrue they are. I got caught up in trying to educate, give second chances, and be the bigger person, and I didn’t initially see the situation for what it was.
But I have clarity now, and I realize that it’s not my job to blindly accept this type of behavior. It’s not my job to suffer in silence just because I don’t want to make someone else uncomfortable or bring the mood of the conversation down by speaking my truth.
I shouldn’t have to hide my reality, apologize and make excuses for other’s ignorance simply because I have a disease that others don’t understand.
And I’m forced to realize that sometimes, people actually don’t mean well. Sometimes, it has nothing to do with feeling awkward or not knowing how to say the right thing. Sometimes, it’s intentional. And there’s only so much benefit of the doubt to give, until you realize it’s a longstanding pattern of behavior, and has nothing to do with them “being in the heat of the moment,” or saying things they didn’t mean.
(When you say things you “didn’t mean” repeatedly… for months… You actually did mean them. Come on. Lets be real.)
I see now that these comments had more to do with the people speaking them than they ever had to do with me. And if someone acts outrageously and then repeatedly shows that they are incapable of apologizing, admitting that they screwed up, and doing something to fix it, but instead, chose to attack and blame you… They do not deserve to be in your life. No matter who they are.
I have been forced to, yet again, re-adjust the circle of people who I trust to have in my life. And it’s disheartening because I’ve already lost so many due to this disease. But for every loss of someone who couldn’t be there for me during my illness, I’m even more aware and grateful of the people who have been and are here for me, and the new friends and beautiful souls who’ve stepped into my life in this season.
And I will move forward with the freedom and complete peace that comes from knowing that another person’s toxicity, unfounded hatred, and extreme lack of compassion—although deeply disturbing —has no power over me, my truth, my worth, or my life.
And lastly, but most importantly – To anyone who’s ever been subject to these types of ignorant attacks… Darlings, I am so sorry. From the bottom of my heart.
And please hear me when I say this:
– You are not obligated to meet others’ expectations of what sick looks like.
– You do not have to hide or distort your disease or your truth to make others more comfortable.
– You get to decide how you cope with your illness, and that does not need to be justified.
– You’re allowed to be positive; it does not negate your pain and suffering.
– You’re allowed to grieve and mourn and be “negative;” it does not negate your incredible strength and resilience. On the contrary.
– You’re allowed to have bad days.
– You’re allowed to do things that people might judge you for, on your good days.
– You are allowed to know and abide by your body’s limits.
– You have the right to say no.
– You’re allowed to cancel plans.
– You have the right to do anything and everything necessary to heal, no matter what it looks like to others.
– You don’t have to prove your disease to anyone; people that request that are not people you want in your life.
– You have the right to remove toxic or abusive people from your life, no matter who they are.
– You deserve love, respect and support.
– It’s not your fault that your sick.
– You’re not to blame when people attack you, or judge you, or leave you because of your illness.
– You don’t have to apologize for something that’s out of your control.
– You don’t owe anyone an explanation for taking care of yourself.
– Keep your chin up buttercup, there are people that believe you.