Today’s show – Ladies Who Lyme: Exploring Illness and Relationships – touches on how sometimes relationship baggage comes from the illnesses that plague our bodies. How do we talk to parents, friends, and romantic partners new and old about what it’s like to live with a serious or chronic illness? Ben and I, who have known each other for almost twenty years, still have ongoing conversations about how he can understand and help me in times of pain and sickness as well as times of relative health (he is the best friend a gal could ask for as far as being open, loving, questioning and giving).
So on top of the discussion we’re having on the show, Allie and Erica of SufferingTheSilence have shared even more of their personal experiences with us, plus ten loving suggestions for how those with illness can foster stronger relationships with loved ones new and old.
Breaking Our Silences and Building Relationships
by ALLIE CASHEL & ERICA LUPINACCI
Co-founders of SufferingtheSilence.com
We met in seventh grade, during rehearsal for our spring musical – The Pajama Game. We were fast friends, the kind of friends who told each other everything. We’d leave school, go home, and sign on to AIM to talk about the 10 minutes we’d been apart. If you imagine a typical middle school suburban friendship, that was us. We were impossibly close. And as we got older, we stayed just as close. We did theater together, went to parties together, travelled, had sleepovers. There wasn’t anything that happened in high school that we didn’t know about, or experience together. But through all that time, there was one thing we didn’t discuss.
Both Erica and I have both been living with chronic illness for most of our lives. In 2009, during our senior year of high school, I experienced my first onslaught of neurological symptoms of late-stage chronic Lyme disease only a few months before Erica was first diagnosed with Lupus. And though we now know how many similarities there were between our illness experiences, at the time, we really never talked about what it felt like to live with disease.
Unfortunately, our story is actually a fairly typical one. Many people living with chronic illness struggle to find ways to discuss it with the people closest to them in their lives. We spent years without supporting each other in ways that we now wish we had, and we’ve decided to make up for lost time.
So now, we talk about this a lot. Once we started talking about illness with each other, with our families, with our colleagues, friends, and partners, we became more and more open about discussing our illness experiences; and we also learned a few tricks of the trade.
Here are our Top 10 Tips on how to break your silence, and use your story as an empowering tool to help strengthen the relationships most important to you, and build new relationships while living with chronic illness.
- Explain what it “not feeling well” actually feels like.
Talking through the actual medicine and biology of your disease might seem boring, but it can also help people to better understand what’s going on in your body. You know those times when you are at the doctor and need to explain what exactly your stomach pain feels like? Try to use those words and descriptions with your loved ones so they can try to imagine what your experience is like.
- Speak up on your bad days.
We are always trying to keep a happy face on and seem strong, but in any intimate relationship (whether it be romantic or not) it’s helpful for people to know when you aren’t feeling well. Though you may not “look sick” at the time, it’s important for friends to know when you are and see the contrast between your good and bad days.
- Ask for help.
Sometimes, people in your life want to be there to support you, but they don’t know how. If there is something a friend or loved one can do to help you out, let them know! Have them come sit and chat with you during an infusion, or ask if they can meet you at home after a hard doctor’s appointment to talk through test results. People always are always happier to get involved when they have tangible things they can help you with. And sometimes, we just need to ask.
- Be honest about your limits.
Unfortunately, our bodies do not allow us to do everything we want to do. We often reach our limits way before our loved ones. If you are aware of your specific limits, speak up so that both you and the people you’re with can be conscious of them. Whether it’s during sex, how late you can stay out, or the amount of stairs you can walk up, it can be nice when others are aware and checking in to see how much you can handle.
- Refer to the Spoon Theory.
Trying to explain things like your energy level, the amount of effort it takes for you to get through each day, or why you have to cancel plans last minute can be really challenging. It sounds simple, but this theory really helps people to understand the day-to-day life of someone living with chronic illness.
- Plan activities that everyone can enjoy.
We know that it can be challenging to stay close with friends when so many group activities involve going out, drinking, and staying up late. Planning activities that are achievable when you aren’t feeling well can be a great way to stay close to friends. Invite someone over to watch your favorite show. Or if you are up to it, meet up for a cup of tea to catch up or try a relaxing yoga class.
- If someone says the wrong thing, try not to get angry.
If someone says something that feels judgmental or shortsighted, try not to get angry with them. Instead, use it as an opportunity to tell them more about your experience. If they aren’t open to learning more, that’s also important to note! Coming to terms with the fact that not everyone will be able to understand and empathize with your experience is an important part of pursuing supportive and understanding relationships.
- Seek out people who can empathize with your experience.
Until we started work with Suffering the Silence, we very rarely talked with other people living chronic illness. Since we have become a bigger part of that community, it has been incredibly helpful and healing to talk with people who truly understand what we are going through, and speak the language that comes along with our diagnoses. There are so many ways to connect with people online in this community. If you haven’t already – give it a try.
- Try not to spend too much time on relationships that aren’t helping you to heal.
We all have people in our lives who just don’t understand, or who don’t care to understand what it is that we are going through. Spending time and energy trying to convince people to care is not always worth it. It’s never easy – but letting go of toxic relationships helps make room for new relationships, which can be as supportive and open as you want them to be.
- Say thank you and acknowledge what helps.
Make sure to take the time out of every day to thank someone who has been there to support you. Whether it’s your nurse, your doctor, partner, boss, mom or neighbor. It’s especially helpful to acknowledge the specific acts that help or support you the most. By saying “I appreciate you checking in throughout the day” or “I appreciate when you offered to help me with my laundry”, they’ll know these are the type of things they can continue to do in the future. Always remember to make sure they know how much you appreciate the little things (and the big things) they do.