“Your illness is a gift.”
“God has a plan for you.”
“Your pain has a purpose.”
“Everything happens for a reason.”
These are just a few of the very real things people have said to me since I was diagnosed with a chronic illness over two years ago. I think it was their attempt at comforting me in some way, to reassure me that while I may be going through hell, there is a light at the end of the tunnel, or so they think. Spoonies know that isn’t always the case.
“Some people have it worse."
“There are people starving in Africa so you shouldn’t complain.”
I’ve heard these countless times, too. It’s their way of trying to put things in perspective, trying to convince me that things can’t be possibly that bad. But this doesn’t help either. Because what I hear is, “Even though life sucks, you should be thankful you don’t have it worse.” Suffering is not a competition and gratitude is not something I am required to experience, just because things aren’t as bad as they could be.
The truth is, I’m not thankful for my struggle. I’m not grateful for the Lyme. I never will be. Illness has robbed me of years of my life, cheated me out of the future I was supposed to have, stolen friends I never thought I would lose, and destroyed my mind and body in ways I never could have imagined.
However, that doesn’t mean I’m not still grateful for certain aspects of my life. And so while I will never be thankful for my chronic illness, I do think it’s important to find gratitude for the things I do have in my life, both despite and because of illness. As a spoonie, this is what I’m thankful for this Thanksgiving:
1. My Mom
Growing up, my mom always said that “mother” is a verb. It’s not something you are, but rather something you do. And in helping and supporting me through my battle with chronic illness, my mom has definitely embodied the definition of a mother, living up to and exceeding the tasks listed in her job description.
When I first became sick and ended up in the hospital with tachycardia, she stayed by my side the entire time, sleeping on a cot and waking up with me every half hour to help me keep my balance as I walked to the bathroom. After “Lyme brain” became a very real problem, my mom started bottling up my pills for each day by meal so I wouldn’t forget to take them. Over the past two years, she has driven me thousands of miles to doctors in several different states in the search of answers and treatment. Every time I start a new medication, my mom researches it exhaustively, making sure she knows every possible side effect it can cause.
And, throughout it all, my mom has been a never ending source of emotional support. She’s held me countless times while I’ve cried, been a metaphorical punching bag when I need to yell and scream and blame someone for my pain, and has carried me on the days when I was too tired to fight anymore. She holds enough hope and optimism to make up for the hopelessness and doubt that plagues me.
Unfortunately, not everyone is fortunate to have a support system like I do. I know there are many spoonies whose families are not only unsupportive, but dismissive, ignoring their loved one’s pain and declaring they are merely being dramatic or looking for attention. They won’t pick-up their wife’s prescription on the way home from work or ask how their daughter’s doctor's appointment went, let alone argue with insurance companies or hold my hand through every medical test the way my mom has.
I am incredibly fortunate to have an amazing support system that has been by my side throughout my illness experience. I will readily tell you that I couldn’t have made it through these past few years without my family by my side, particularly my mom. I would never want to go through life, especially this part of it, without her in my corner. And, thankfully, I don’t have to.
2. My Doctors
All chronic illness patients have had their fair share of horror stories of interactions with medical professionals. The doctor who told you it was all in your head, the ER nurse who turned you away, the physician who doubted your pain and refused you the treatment you needed. Sadly, it is an unavoidable part of a spoonie’s existence and patients can go through dozens of doctors before finding one that takes them seriously.
I know this firsthand.
Fortunately, or unfortunately, I live in Connecticut, also known as the birthplace of Lyme Disease. This means that within a 1 hr radius of my home, there are at least 15 different Lyme-literate doctors. If I venture a little farther and make the 1 hr 20 min drive to NYC, there are dozens more.
So while I did have to weather the usual roadblocks of unsupportive GPs and disbelieving specialists on my way to receiving a diagnosis, I was finally able to find and undergo treatment from a competent doctor. And, when he told me he could no longer help me, had no more ideas, I was able to relatively easily find a new provider to continue my treatment.
It could be easy for me to dwell on the doctors who did me wrong, the ones who questioned my symptoms, called me crazy, and belittled my illness experience. I could talk about the psychiatrist who suggested I be hospitalized for mental illness or the neurologist who prescribed physical therapy.
But instead, at least for today, I choose to focus on the providers who break the stereotype of the narcissistic, uncaring, and dismissive doctor, but are rather kind, supportive, and give me hope. I remember the physician who told me, “It’s not all in your head”. I think of the doctor who held me while I cried, whispering, “We are going to beat this,” in my ear.
I recognize that not all spoonies are lucky enough to have so many doctors so readily at their disposal. Many have to wait months or years and travel unimaginable distances to receive the treatment they need and deserve. In this sense, I am extremely fortunate. And I don’t for a minute forget it.
3. My Spoonie Friends
Chronic illness is an incredibly isolating experience. It causes physical and emotional pain that many can’t comprehend and so, as a result, don’t believe. While some friends may be supportive in the beginning, the longer the illness drags on, the less understanding they become. The more dinners you have to reschedule, the more parties you have to miss, the thinner their patience becomes. And after they realize you won’t “get better soon”, they disappear.
I have unfortunately experienced my fair share of this phenomenon. Over the course of my illness, I’ve been abandoned by several friends, many of whom I considered to be more like sisters. They no longer called or texted or even commented on my Facebook page to see how I was doing. The idea that I could be forgotten and discarded so easily, left behind when I could no longer keep up, was heartbreaking for me.
As a result, my existence became increasingly lonely. With my parents at work all day, I would sit at home in a quiet house, the characters in the TV shows I watched the closest things I had to friends. I would speak about Matt and Savannah from the Today Show like they were old pals. My grandparents would call fairly regularly too. But, for the most part, it was just me and my illness.
That is, until my mom convinced me to attend a Lyme Disease support group held in my town. Begrudgingly, I went, in pajamas, looking and feeling like crap. And it was one of the best decisions I could have made.
At 18 years old, I was the youngest one there by at least 15 years, but it didn’t matter. For the first time in months, I was surrounded by love and support. They truly wanted to hear my story, listened to me detail the good, the bad, and the ugly, and gave me advice. It felt like I was with old friends, the horrors of illness connecting us on a deeper level.
A year and a half after attending my first meeting, I still go to almost every group and it is honestly one of the highlights of every month. These Lymies have become my friends and one of the biggest supports during my fight. From them, I receive no judgement and they never disappear when I hit a rough patch.
Many of our friendships have even extended beyond the bimonthly group. We text often, talk on the phone, have gone out to dinner, laughing until we cried, and on one occasion, even went to the movies.
I will forever be grateful I have these people in my life. Their companionship is a gift I don’t for a minute discount. They have helped to combat the loneliness and isolation so many spoonies experience and reminded me what it means to be a true friend. Because of these individuals, I am no longer as lonely as I once was. And that is something to be thankful for.
4. Little Joys
When I was my sickest, my mom encouraged me to find something each day that I was grateful for. But, living with such pain and sadness, I was doubtful I’d be able to do it. Trying to find the value in every day, every moment, seemed an impossible task. But still, I tried.
In a jar created for the exact purpose of finding hope and gratitude, I attempted to record one good thing a day. To say it was hard would be an understatement.
Some of the entries included things like:
January 4th, 2016: Mom surprised me with coffee from Starbucks
January 8th, 2016: Received a care package from my grandparents.
February 5th, 2016: Watched an amazing movie with my sister
I gave up on this idea by March 1st. It became increasingly difficult for me to find the good in each day as I became sicker, particularly in comparison to the life I thought I would be living. To me, my highs of receiving a surprise in the mailbox or seeing the latest blockbuster still felt like lows.
However, I still understood the importance of recognizing and allowing myself happiness in the rare moments where I could find it. While I no longer record them for posterity, I try to live in the moment and enjoy the feelings of joy when I can. I sense it on the days when I’m able to go shopping and treat myself to a new sweater. I feel it in the occasional cup of coffee, a beverage I should avoid, but a luxury I still afford myself from time to time. I appreciate it in the chocolate chip cookie I have for dessert every night because, even though I’m not supposed to have sugar, everyone deserves a little joy.
I’m thankful for these little joys. I’m thankful for the ring my sister bought me as a surprise, the cards my grandparents send me in the mail, and the fact that Grey’s Anatomy just came back from hiatus. These are all small things and while they don’t negate all the negative experiences of a chronic illness, they make each day even slightly more bearable. And we all deserve a little happiness, wherever we can find it.
There are some days where I cannot find things to be grateful for except the fact that I’m still alive and, even then, depending on how bad a day it is, sometimes I’m not even thankful for that. But I do think it is important on the days that I can and on a day like Thanksgiving, to stop and appreciate all that I do have. Practicing gratitude doesn’t mean I am accepting my reality or that each day isn’t a struggle, because it is. Rather, it is recognizing that even though I have a chronic illness and the fight to overcome it is hard as hell, without the things I mentioned above, my struggle would be even more difficult. And I’m thankful that it’s not.