SURVIVING IS JUST THE FIRST PART
By: Jill Gurfinkel
Also found on: The Thyroid Survivors Network
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Over the years, I have heard my fair share of what I like to call “WTF statements” said with the best of intentions by well-meaning friends. Yet, these statements, no matter how well-intended, instantly make me wish I had stayed home, rather than the hours and fists-full of pills it took just to get me out of the house.
While I know I sound dramatic, I know I am not alone! In fact, anyone with a chronic illness has been the recipient of these statements, and like me, they immediately feel their eyes roll to the back of their heads, wondering why they bothered in the first place. Trust me when I say this: some things that are really better left unsaid!
“But you don’t look sick?” “You look great so you must be doing better?”
Really, is that so? These types of statements are so infuriating because they cast doubt on whether the person with the illness is as sick as they claim simply because you think they look too good to be that sick. It also begs the question: What is a sick person supposed to look like? Exactly how bad should we look in order for you to take our illness seriously? I always wonder about that.
You may see the makeup, the hair, or the clothing, but do you know how much time, effort, and pills it took for that person just to get out of the bed and attempt to function? Or how many more pills it will take just to get through the day? In fact, you may not realize that the person who you think looks too good to be sick is the same person who was totally wiped out by something as simple as a shower!
Those of us with chronic illnesses are absolutely brilliant at putting on a smile, regardless of how we feel at the moment. We wear that smile like Teflon because it is often easier than dealing with a litany of questions we are often asked about the current state of our health. Sometimes, we can’t even do that, and instead, cancel whatever “things” we are supposed to be doing because we are simply too tired, or in too much pain, or just too foggy to get through a simple conversation.
We become masters at controlling exactly what the outside world gets to see, even if it means covering up how we feel with lashes and lipstick! So, while we may not wear our illnesses on our sleeves, it simply means we refuse to let our illnesses define who we are!
“Why don’t you just do yoga?” “You would feel so much better if you worked out!”
Yep, I hear those statements all of the time and I always want to reply “Don’t you think I’d be working out if I could?!!!” Before you say that working out is good for everybody, let me remind you that some illnesses actually prevent a person from doing something as simple as yoga, even if you cannot actually see the manifestations of the illness itself. In fact, the person might not have a limp, or a cane, or crutches. Rather, they could be in terrible pain all of the time or fighting an illness that causes them to be completely wiped out for days after the simplest of workouts.
Let me be clear- if you can work out, do it! It is one of the healthiest things you can do for a healthy body. However, if you suffer from an illness or chronic condition that causes you to be bedridden for days simply because you worked out, perhaps going to the gym is not right for you, right now.
More importantly, to those friends who think you are helping your loved one who has a chronic illness by telling them to start working out, consider this is an intervention. It’s actually time for you to stop judging us by what you think we ought to be doing. Instead, respect the fact that we know our bodies far better than you, and if we are avoiding things you think we should be doing, there must be a damn good reason why.
“Should you really be eating that?” “But isn’t that bad for you?”
Guess what- we are human too! For some odd reason, having a chronic illness often leaves us with a target on our backs where people feel completely justified to say things they wouldn’t dare say to “normal” people. It’s true. We see it all the time. I have been to a party where I was enjoying all of the same things everyone around me was enjoying. The only difference was that I have autoimmune illnesses and no thyroid, and, thus, people feel it is somehow acceptable to say whatever the heck they want regarding what I eat, drink or do.
Newsflash: If I wanted your input, I would ask for it. If I haven’t, then keep your two cents to yourself!
Understand that people with chronic illnesses just want to be like everyone else and enjoy ourselves, even if that means enjoying a diet pop, having a piece of sugar-laden dessert, or simply a cocktail or two. That doesn’t mean we won’t deal with the consequences of our decisions, but rather, the consequences are sometimes worth it just to feel normal for a moment or two.
While I know people often have the best intentions when warning me that having a Diet Coke is bad for my health (which is absolutely true), the fact remains that no one wants to be judged or face a litany of unsolicited advice every time we try to just enjoy ourselves. Trust me on this one: it is better to bite your tongue and allow that person to enjoy the moment. You truly have no idea how long that person looked forward to having that treat, or how hard it was just to be out with friends. So, just let them enjoy in peace!
So what the hell should I be saying?
It’s simple, actually: nothing. Just being there and telling that person you love them no matter what is priceless to your loved one who is dealing with a chronic illness. No judgment. No unsolicited advice. No attempts to sell them the latest essential oils or supplement programs as cure-alls for their ailments, and spare them the preaching of whatever you heard on Doctor Oz (insert eye roll here)! Just unconditional understanding, respect, and love. That’s it!
No one is looking to their friends to solve their medical mysteries and we certainly do not want to be judged for failing to live up to your preconceived notion of what we should look like or should be doing. We just want you to love us as we are, even if that means acknowledging that you see us struggling.
Like you, we all want to be accepted for being the beautifully flawed humans that we are, regardless of whether we are feeling our best or worst. Simply saying “I see you, and I’m here for you,” is everything to the person dealing with that chronic illness and is tired of being judged for not living up to everyone else’s expectations.
So, while we know most advice offered is from the heart and because you only want the best for us, you really have no idea what you are talking about unless you have dealt with the same illnesses we face every single day! I know this may seem harsh, but I say this with the best of intentions!
Jill Attenson Gurfinkel is the Founder and Director of Thyroid Survivor Network
In November 2012, after the removal of half of her thyroid, Jill was diagnosed with both Papillary carcinoma and the rare form of thyroid cancer called Hurthle Cell Carcinoma. This resulted in another surgery just five days later to remove the remaining lobe of her thyroid, and radioactive iodine treatment (“RAI”) a few weeks later.
Jill has had her fair share of struggles since her diagnosis, but with the benefit of groups like the Thyroid Survivor Network support groups, she has been able to get her life back and thrive! Jill hopes to use her experience in order to support others suffering from thyroid disease and to raise awareness to create better health care for the entire thyroid community. Check out her blog for a healthy dose of positivity, laughter, and inspiration! You can also read about her journey in the Huffington Post article “The 6 Injustices of Thyroid Cancer,” by Jodi Meltzer.