Surviving and Thriving With an Invisible Chronic Illness_How to Stay Sane and Live One Step Ahead of Your Symptoms

by Ilana Jacqueline

  Check In: Make sure there is never too long of a gap in the conversation. Keep your buddies nearby via text messages, phone calls, Facebook, etc. For me, writing a blog about my journey was my invitation for support. You don’t have to write a novel about your disease, but consider writing a Facebook status and letting others know when you’ve checked into the ER or have been admitted to the hospital.

  Make the Plans: Don’t leave it up to your friends to set a date. Take control by making low-key, realistic plans for your energy level. Maybe go for a quiet night out at a restaurant whose menu you know you can eat from. You can even invite friends over to watch a new release on Netflix or to create a new recipe together.

  Why Are You Not Making Friends?

  There are some very universal reasons that chronic illness patients struggle with making friends. We struggle with shame and worthiness. You may think, Who would want to be friends with someone who cancels plans, spends long periods of time in the hospital, and is constantly in some amount of discomfort or pain?

  Shame is a natural reaction to having an illness. For many people, shame sneaks in without a name or a face and completely alters your perception of yourself. It is the most hazardous factor in preventing you from connecting with other people. Shame makes you hide things and pretend things are fine when they’re extremely painful. Not only are social situations difficult to get through, it becomes harder and harder to believe that being with other people can be enjoyable. How lonely! When I think about failures in friend-making when I was younger, I know it goes a lot deeper than not sharing the same interests. You might lack the confidence to share yourself with others when you don’t know how or when to “reveal” your disease.

  Before I knew what my disease was, I was hiding it. Keeping my symptoms quiet and concealed around other people was my marching order. Do you ever feel like that’s been your experience? The truth is that my disease made me feel very different from other people. I always had this chip on my shoulder and felt like I could never take things to the next level. I couldn’t get close to people because I felt that eventually I would flare up and let them down. It took me many years to find the strength to even try to be someone’s friend. It took even more time to learn that unlike for other people, keeping and strengthening those friendships was going to take effort and commitment. But, having those lonely stretches without a social life gave me more strength to pursue and appreciate my friendships when I finally did have the opportunity to connect with people.

  Making and breaking plans is a common theme for people with chronic illness. It doesn’t change much from being a sickly ten-year-old to a sickly twenty-four-year-old. Finding the right restaurants to eat at, deciding on activities that won’t require much activity, and having to cancel last minute for things you can’t really control makes it tricky to maintain close friendships. Uneasiness with your disease is extremely obvious to others. When you start to get comfortable about your condition, you’ll put others at ease as well and it will be easier to make friends and maintain those relationships.

  How to Start Making Friends

  If you’ve been off the social stratosphere for way too long, to the point where you’re having intense conversations with your dog or crying into your birthday cake while your mom watches on, it’s okay, it happens.

  Getting back in the saddle after a long flare-up can feel like you are attempting to meaningfully converse in another language when you only know how to say, “where is the bathroom?” You may have completely lost confidence in yourself and your ability to make friends and that’s expected. Here are some reminders and ideas of ways to connect with people.

  Draw on Your Current Contacts: Check in to see how old friends are doing. Use your social networks to send messages and see if they might want to get coffee soon. Remember who you used to hang out with in healthier times and reconnect. Ask how their lives have changed since you last spoke.

  Be Kind: Seems obvious, right? Make a conscious effort to be kind. Compliment a stranger. Make a comment to a classmate or coworker about their presentation during a meeting. Congratulate another mom at the park for keeping her cool when her kid went all “Exorcist style” on the monkey bars for not being allowed to have candy. Kindness invites kindness, so don’t be afraid to notice someone’s better qualities.

  Reach Out: During my first year of high school, I spent the first week or two having lunch by myself. I had homeschooled the year before and now finding myself in a crowd of other teenagers felt really jarring. Then, out of the clear blue, a girl tapped me on the shoulder and asked me to come and sit with her and her friends. She did it with such confidence and nonchalance. Why after all these months had I not asked another person if I could sit with them? Reach out. Just ask. You very well may be the only person excluding yourself from a social life.

  Get Their Contact Info: Once you’ve made a connection with someone, make sure you ask for their phone number and let them know you’ll text them soon to hang out.

  Don’t Fear Spontaneity: If your symptoms are mostly under control for the day, and a conversation results in an invitation to hang out, go for it! Seize the moment to socialize as often as your body allows you to.

  Where Can You Meet People?

  Patients with chronic illness do not have a monopoly on loneliness. Everyone goes through periods of time where they outgrow old friends before finding new ones. It’s difficult, especially in your adult years, to effortlessly slide into a group of people who you can connect with. But there are places to make friends. I’ve provided some ideas below to get you started.

  Meet Friends Online

  One of the hardest questions is “Where are all the people?” They weren’t in my living room. They weren’t at my doctor’s office. My first foray into finding new friendships came from the internet and connecting with others who had a chronic illness. The positive aspect of this was that I no longer had to hold back and hide the symptoms of my disease. I could share my challenges at leisure. The downside was that often, besides our diseases, we really had nothing else in common. Sometimes these friendships tended to turn into merely sounding boards for complaints about our diseases.

  In the earlier days of my diagnosis, I would do online searches of the main organizations for my disease and set up an account to get in their chat rooms or forums. Later, I discovered a huge and ever-expanding series of Facebook groups for people with chronic illnesses. Many communities had 5,000 members or more who were all reading and responding to posts in real time. The benefit of this was checking to see if things were normal. People would pop in and ask questions like, “Is it normal for my heart to be racing this fast?” In a few seconds, there would be fifty responses from other patients who had been there before.

  Sometimes I’d get brave and ask to go to lunch with someone from an online group who lived nearby me. These lunch dates were very reaffirming since we shared similar daily realties. I started to wonder though if I would only be able to connect with people with chronic illness. How would someone who wasn’t ill know how to be a friend to someone as complicated as me?

  As we discuss different kinds of support later in the book, you’ll see the incredible value of finding friends in similar situations, but certainly they were not the end-all, be-all to my social needs. In the meantime, virtual friends can provide streaming support on those quiet nights at home.

  Make Friends at School and Work

  School and work may be the easiest venue for finding new friends. You’re already with people your own age, who at least have an education or career in common with you. There’s plenty of opportunity to talk at lunch, before classes and meetings, and during breaks. Even at the height of my disease, during my last year in college, I managed to make a very fragile friendship with a girl who sat behind me in class. Once or twice we tested each other with flashcards in the cafeteria before tests. Because I had to leave school, I thought I had lost a potential friendship. Months went by, and then by happenstance she ap
peared at a house party my boyfriend had dragged me to and we were able to reconnect.

  That’s the thing about friendships. They don’t always start with a flash and a bang. Sometimes they come in the form of acquaintances you see every now and then and grow to become strong friendships. Be open to all opportunities by being kind and open with everyone you interact with. You have nothing to be ashamed of by putting yourself out there. Co-workers might not immediately seem to have the same after-work social life as you, but give yourself time to get to know them.

  When You Make a Connection

  There may be no better feeling in the world than the one you get sitting across from someone who you fully connect with. It’s like taking off too-tight sneakers after a long walk. There is an incredible relief and appreciation for the moment. You weren’t sure if the opportunity to connect would ever actually come again and it did! You broke through! Despite the wall that your disease can build around you, you found a window, popped your head out, and waved to someone on the other side. Things are looking up. Now that you have made a connection, there are a few things to be mindful of.

  Make Plans You Can Keep

  After the friendly flirting and Netflix queue comparison, you’ve finally landed a friend-date! And, since you likely just met this person, you probably haven’t told them all the details of your disease. The thought of making plans seems like an insurmountable challenge because you want to appear normal and do normal-activity-level things for someone your age, eat normal every-day food like someone your age, and discuss normal age-appropriate life experiences, but you don’t quite fit into any of those bubbles.

  Different diseases present different challenges to hanging out. It’s not something the healthy have to think about. But you do, so let’s knock some things out of the equation right now.

  Eating spicy foods when it upsets your stomach? Don’t do it just because everyone else wants to order the chili! Getting in line for the new rollercoaster when your worst symptom is vertigo? Don’t do it. Intense physical exercise like endurance hiking or fast-paced aerobic classes? Find another activity.

  If it makes you feel any better, I’ve learned all this from trying to pretend that I’m on the same peak physical level as my friends. I nearly dislocated my ankle (twice) while ice skating, went to see an IMAX movie in the middle of a migraine flare, and even had something as simple as a slice of pizza ruin a perfectly good evening.

  You don’t have to cater to the wants and whims of your disease, but throwing caution to the wind in your effort to feel like one of the guys or girls will end badly. Believe me. Aim for a mid-week hangout with close friends by inviting them over for foods that require low-impact prep (i.e., frozen finger foods, chips, and salsa) and drinks. Invest in some board games or suggest an on-demand Bravo marathon. This sort of night gives you a chance to control the activity level. If you can aim for a smaller, less strenuous night out, you’ll have more energy to focus on making a lasting connection with your friends.

  Inevitably, even the most clever and capable of us will make a colossal social snafu. Don’t be afraid to brush aside the compulsion to be just like everyone else. Maybe you can’t enter the pie-eating contest, but there’s something for everyone at the county fair.

  Get Over Your Guilt

  There was no question about it. If I was going to have a normal social life, I needed a major shift in attitude. The first thing that had to stop was the guilt. It was eating me up inside every time I had to cancel plans. At some point, I swore off making plans completely. After that lonely period, I made a resolution to do the opposite. I decided to make plans at every opportunity offered to me, even when I wasn’t hundred percent sure I’d be able to follow through with them.

  If living with a chronic, progressive disease taught me anything at all, it was that life is too short to feel bad about things you can’t change. Nobody wants to be that asshole who backs out at the last minute, but sometimes it’s the only way to stay connected with friends when a good deal of your life is tests, doctors, hospitals, and nights on the bathroom floor. It also became obvious that people were reflecting my attitude back at me. If I felt horrible about making and breaking plans and made a huge show of apologizing and berating myself, they felt equally horrible. If I brushed it off and said we’d try again, they mirrored my fluidity.

  These days I have a group of girlfriends who I hang out with regularly. At this point they already know my whole story and then some. They’ve been very understanding and take it in stride when I’m not able to make it out every time we make plans. It would have sounded crazy to me just two years ago if someone had told me I’d have a lot of friends and I’d hang out with them enough to maintain those friendships.

  You may think you’re the only one who is tired because you have a chronic illness, but even “normal” people with “realistic” amounts of energy get tired during the week. I used to beat myself up about not always being able to go out with friends, until I realized that their relationships, landlord issues, and work drama were pretty fatigue-inducing as well. Don’t let your fatigue isolate you.

  How to Reveal Your Disease

  In my mind, I basically have a secret identity. When I meet new people, I try to stay cool and act normal, but underneath my dress and cardigan there lies a ridiculously good-looking body wrapped up in a Holter monitor and a hospital gown. When getting to know the new people in your life, it’s important to remember not to take off your dress and cardigan at the dinner table. Even if you do feel antsy about letting your secret identity be known immediately, breaking the news about the impact of your disease on your life is a delicate process. It takes thought, precision, and almost no partial-nudity. This would be a great time to use your elevator pitch. Be quick, clear, and upbeat. Still not sure what to say? Check out these five tips for the big reveal.

  Reveal That You Deal with an Illness on a Need-to-Know Basis: Before revealing your situation to them, ask yourself: Is the topic of my disease bound to come up between us eventually? Do I have any obvious signs of this disease that they might start to build their own (and possibly incorrect) assumptions about? Will this person be affected by how this disease affects me? Consider whether you’ll be making plans with them or working side-by-side on projects at work. If you feel your symptoms may interfere at some point, it’s okay to give them a heads up.

  Lastly, ask yourself: Do they care? You don’t need a pat on the back and someone to call you their personal hero every time you say, “I have a serious illness.” But, if someone in your life has already expressed prejudice against someone with disabilities or seems to otherwise be incredibly tactless, it might just be better to let him figure it out (or not) on his own.

  Don’t Overshare: Sometimes we get so used to having to explain our disease, we accidently overshare. We don’t want to have our listener internally screaming—“way too much information!” Save it for your friends in med school who are no longer shocked by any function of the human body.

  Be the Reaction You Want to Have: People are going to follow your lead when it comes to the state of your disease. If you’re frustrated about it, they will be frustrated about it. If you’re sad about it, they’ll be sad about it. If you’re cool about it, they’ll be cool about it. People can sense your uneasiness about your condition. If you haven’t come to terms with it yet and are still in a phase of mourning your old life, you may not be ready to reveal your experiences and open yourself up to possible judgment. You’ve got to love yourself with or without the disease if you’re going to expect someone new in your life to do the same.

  Make it Common Knowledge: What’s easier than having to explain to everyone you know that you have a chronic illness? Having the internet do it! Don’t be that guy who tweets about his medications all day long, but try posting on your social network periodically about how you’re coping with your disease. This can help break the ice when you see old friends in person and could lower the shock factor with new acquaintances. />
  The Friend Who Gets It

  If your friendships have been superficial or fleeting, just remember that true friendships do exist. They are built and maintained with effort and patience, and you will find yourself in the right ones. I’ve had my fair share of blank social calendars, but I’ve had my lucky days too. Once upon a time I had this best friend, Nikki, who got me on a real, deep personal level. Like on the kind of level where I might say in the middle of watching a movie, “I’m going to need to leave the movie now so I can go home and lay on my bathroom floor and die.” And, then she would just nod, grab her purse, and say, “Let’s go.”

  I thought this was because she too had an invisible chronic illness that she already knew by name and had already dealt with the first few years of emotional hurdles. While she was by no means cured when I met her, she still made plans, went places, and had a wild personality that her illness just couldn’t dampen. Although she was often bedridden and on the other side of the bathroom door, she always had friends nearby. The more I watched her deal with her problems, the more I wanted to be just like her. But what was it that made her so Nikki? It was an equation that would take many terrible episodes of her disease to witness.

  It wasn’t that she didn’t feel her disease or acknowledge that it was there. She just didn’t hate herself for it. She didn’t blame herself. For most of my life, my disease was this intangible monster that I was somehow supposed to keep locked in the closet while it howled and rattled the doors. Things like that never disappear. Shame was all it really needed to grow and I was feeding it every day. Nikki knew no fear and no blame.