To love or not to love?
It was May of 2017 when I first found out I would be getting a PICC (peripherally inserted central catheter) line. I didn’t want to tell my partner, fearing it would change the dynamic we had. I vividly remember telling myself in the mirror, “nobody’s going to love you with a PICC line”, and fully believing my reflection. There were nights when I would sob in my pillow, wishing this wasn’t my reality, praying for magic that could turn me into a healthy 21-year-old.
The following months were a period of adjustment, but I slowly regained my confidence, making peace with the device in my arm. During this time, my partner's support was unwavering, reassuring me that my illness did not abate our love.
Months later, a job took me to a new city where I found myself single again. I tried to hold onto that confidence I had just worked so hard to acquire in my previous relationship, but still struggled with how I would learn to build the courage to tell new partners about my disease.
Loving someone requires so much extra effort, vulnerability, and communication. As poet Sylvia Plath quotes, “If you expect nothing from somebody you are never disappointed.” My chronic illness consumed all the mental energy I had, and the idea of devoting some of that energy elsewhere was something I struggled with. I had to decide: let my guard down or be alone.
I have been able to fall in love again, and have come to realize that Lyme is a part of me, and probably always will be, but Lyme is not me. Over the past few years, I have become increasingly familiar with the ins and outs of loving with chronic illness. During this time, I have come to understand three fundamental elements crucial to making a relationship work while fighting chronic illness:
- Be honest. Be candid about your experience and disclose the day-to-day challenges you face. When you bottle up how you feel, it manifests in resentment toward your partner. Help them understand. Walk them through what you’re feeling, even if it might feel like you’re complaining. Odds are, your partner would rather you be upfront than conceal your pain.
- Ask for help when you need it. My superhero tendencies kick in and I think I can do it all. Sometimes you simply cannot. Maintaining open dialogue and asking for help is crucial. The reality is, a relationship is between two people, so ask them for help when you freakin’ need it.
- Give yourself some extra love. Dealing with a chronic illness is work in itself, and if you give all of your love to someone else, you may find yourself feeling depleted. Remember to always check in with yourself and your needs, because at the end of the day, your health is a priority. There are many ways to do this, from taking a bubble bath, to going to a yoga class, to treating yourself to something special.
Loving someone while battling chronic illness isn’t always going to be easy, but in my opinion, it is beyond worthwhile. It takes time to understand your needs, especially in the context of love. Be patient with yourself, and your partner. Every relationship is intrinsically unique and it takes time to figure out what works best for you. To love, or not to love: that is the question. I say love.
We sat down with leadership at KeepTruckin, a Chronically Capable partner, to find out what makes their workplace inclusive for chronically ill and disabled employees.
Period cramps are the leading cause of missed school and work in women under 30.
Internships are crucial for gaining the necessary skills and experience to embark on your professional journey. Not only are internships a key milestone during college, but they also represent a unique opportunity to gain experience when changing careers or reentering the workforce.
Do I have to disclose my disability to my employer? What accommodations am I entitled to request? Can I be paid less because of my reasonable accommodation? So many questions might arise as you go through the employment process.
There are simply no excuses for not hiring chronically ill workers. Doing so would detrimentally reduce your available talent pool.
Let’s start by getting this straight: you do not have to disclose anything about your health to an employer. If you wish to disclose, you’re allowed to disclose at any point in time, whether that be during the interview, during the negotiation process, once you’ve started, or even three years into your job.
This year is the 30th anniversary of the monumental passage of the ADA and the 75th annual National Disability Employment Awareness Month (NDEAM). Prohibiting discrimination against people with disabilities in buildings, transit, schools, planes, and work enviornments, the ADA finally recognized people with disabilities as the valuable members of society that they are, following years of discrimination and opression prior.
Living with a chronic condition is incredibly time- consuming. Whether it’s frequent doctor appointments, blood draws, treatment schedules, or taking the time to rest, our days are jam-packed to the brim. I know this first hand as I’ve struggled with Lyme disease since 2015.