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

by Ilana Jacqueline

  In this chapter, we’ve discussed the shame we feel about how we see ourselves and how we feel others perceive us. We’ve considered how focusing on the positive and familiarizing ourselves with our new bodies can help us cope with bodily shame. And, lastly, we’ve discussed how to cultivate a new attitude to increase confidence and acceptance.

  It’s never too late to start looking in the mirror with fresh eyes. Practice positive self-talk and take the bullying down a notch. In the next chapter, we’ll explore how others may react and respond to your illness and just how much your attitude about your disease plays a role in that.

  Chapter 3

  What They’re Going to Say About You

  Most people in your life may feel inconvenienced by your chronic illness. To them, the solution seems simple: just stop being sick! They may think of you as lazy, attention-seeking, weak-willed, or reckless. These perceptions seem to always be present in interactions with friends and family and are reinforced when you need to cancel plans, can’t make family dinners, or need to head home early from work. The pressure of committing to events is raised ten-fold. Will you be accused of being selfish if you need to cancel or back out? Will they think you’re uninterested or too good for their company?

  In this chapter, we’re going to discuss your relationships with other people, how your disease affects your social life, and how to use tools to handle miscommunications about your symptoms. We’ll explore how your disease informs the realities of your relationships and map out why those people in your life may not be ready to handle your situation. We’ll offer useful tools for opening the conversation and clearing the air, as well as helping you to determine which people you should be surrounding yourself with and who it’s time to take a break from.

  The Realities of Your Relationships

  A few years ago, I started following this woman Ally on Facebook. She was always in the hospital, and at the time, so was I. While I grumbled and bitched about the cold rooms and invasive procedures, Ally was literally having her head drained of spinal fluid day after day, with a smile on.

  Ally had been diagnosed with intracranial hypotension. As limiting as her outcome looked, and as often as she had to shave her head for brain surgery, she remained positive, almost mocking it in her own determinedly cheerful way. She would share pictures of her head in bandages, the piles of life-sustaining machinery surrounding her, and Disney princess coloring books and hand-made blankets that her nurses or friends had made for her.

  But I would always wonder, where is Ally’s family? The answer was disappointing, but not surprising. “Before my diagnoses, everybody thought I was faking it,” said Ally. Despite her constant headaches and vomiting, dizziness and balance issues, she struggled to obtain their support. Her mother wasn’t interested in helping her find answers from her local teaching hospital. She was only interested in taking Ally for alternative therapies, fearing any more complicated treatment might injure her further. The rest of her family failed to understand her condition as well. The constant comments included: “I wish I had a headache so I could stay home all day,” or “If you wouldn’t pass out all the time I wouldn’t be embarrassed to go out with you.”

  It’s not entirely surprising to see family members react to a diagnosis of an invisible disease with insensitive comments like these. Like Ally’s family, many can only make sense of the peripheral “perks” of disease. When they don’t see a condition as valid, they feel as though someone is taking handicapped privileges and exploiting them, and they feel the need to react accordingly. Sometimes the reactions are in the form of accusatory comments or ignoring the person in pain, and sometimes the interactions lead to hostility and fighting.

  Education will be your best and sometimes only tool in these cases. Dragging family or friends to doctor appointments and hospital stays and printing out literature from a disease organization’s website can give you a chance to start a conversation about your illness with them. Discussing how the disease affects the body, the long-term outlook of the condition, and what other patients in similar situations have done will help your loved ones better understand how they can support you.

  Unfortunately, Ally did not receive the support she needed from her parents. She said, “Once I finally had my first diagnosis, my mom did a little bit of research, but still was only interested in alternative therapy until the doctors told her it needed to be handled differently. Still to this day my dad isn’t aware of all the diseases I face, or the treatments I do. He still makes rude comments telling me how lazy I am and how disappointed he is.” Ally still wants support from her parents, especially during difficult surgeries and debilitating flares, but she understands that because her parents have never experienced anything like her health issues, they may not ever have the capacity to empathize.

  There are many patients out there who will never feel completely supported by family and friends. That great pillar of strength that’s supposed to help you through the hard times may not be there at the time your first symptoms hit. As you grow and learn more about yourself and your disease, you’ll be able to build your support system. Ally began to befriend student nurses who often worked with her doctors. She became a regular at the hospital and consequently found that her family of support was the hospital staff. She continued to grow support by making friends online and through her school. In the absence of her family’s understanding of her disease, Ally managed to create a wonderful team of support. We cannot back down from the idea that we are deserving of support and understanding in our time of need, but the reality is we might not get it from the people we expect it from.

  Dawn Wiggins, the licensed marriage and family therapist from chapter one, shed some light on why Ally’s family had difficulty coping with her disease. “For Ally, I would guess that the reason behind her unsupportive family not giving her the support she wants or needs is about feelings of powerlessness,” says Wiggins. “In my experience, most loved ones just want to solve the problem. When families don’t understand the illness and when medical science has a difficult time understanding and treating that condition, it leads to a feeling of powerlessness. Powerlessness is such a strong and uncomfortable feeling that many will do anything they can to avoid it.”

  So how can you tell if your family members or friends are feeling powerless? Wiggins says some clues this may be the case is when they are acting like they have the solution, try to control the situation, or are pushing their feelings onto someone else, like the patient or their spouse. These feelings and behaviors can ultimately cause some painful conversations, accusations, and an erosion of crucial relationships. In these cases, well-meaning family members end up hurting the people they care most about. For Wiggins, the first step in this situation is similar to what we covered in chapter one: “Most patients just want to be heard and reassured that our lives aren’t going to end as a result of our illness. My professional suggestion to caretakers and loved ones is to focus on acceptance of the circumstances as they are today and to understand that healing is a process, a continuous one.”

  As we have learned in the last two chapters, acceptance is something that you need to cultivate as well. You are the ultimate model for how people will treat you and your situation. The following are some tips for when a well-meaning person tries to help, but unwittingly provokes your anger and frustration by thinking they can solve a problem you can’t.

  Recognize this isn’t a personal attack; they are trying to help in the only way they know how.

  Acknowledge their support while politely letting them know that the way they’re going about it is ineffective.

  Give them ways in which they can help. For example, helping you get to the doctor, going on a disease organization’s website and reading up on the facts, and simply being there to support you emotionally during procedures or other moments when you’re in need.

  Unease About Your Disease

  Even my mother, my greatest supporter, at times felt her own sense of power
lessness to assist me. She told me that once when she was thinking that there must be something more to this that I wasn’t telling her, she rifled through my drawers and swiped her hands under my mattress looking for empty packets of laxatives. This kind of thinking was something I was often faced with. People would say:

  She’s probably taking diet pills.

  You don’t just have excruciating stomach pain for no reason.

  How many scopes has she had at this point? Ten? And they’ve found nothing?

  I can always remember my mom advocating for me, but there were moments I saw her doubt her own resolve. Maybe these symptoms were just psychological. She had to do something! In addition to all my specialists, she took me to acupuncturists, herbalists, chiropractors, and a series of psychologists and psychiatrists. Though her faith waivered in how much of my disease was physical, she still supported me in front of relatives, co-workers, friends, and teachers. She advocated for me in hospitals and doctors’ appointments. Considering the blurriness of my diagnosis, she took a considerable leap of faith and went to incredible lengths to combat her skepticism.

  However, in my family, the reality of my situation often got lost in translation. Most of my family members had different theories on why I was unwell. Sometimes these judgments were innocent. Other times, they were downright malicious. Here were some of their conclusions:

  I was doing this to myself because of my diet. (“She should be gluten free!” “She should be on Paleo.” “She needs to eat more, not less!”)

  I was taking too much/the wrong kind of medication. (“She obviously just needs to be on Xanax all the time.” “If she would just get off all those crazy medications, I’m sure she’d be fine.” “Can’t they just give her something to make her normal again?” “She really needs to get prescribed something to fix that.”)

  I enjoyed the daily life of a patient. (“Sure, I’d fake an illness too if it meant I got to stay home all day and never have to work a real job.” “Wow, she really likes going to those doctors’ appointments, doesn’t she?” “I think she likes all the attention she gets in the emergency room.”)

  There’s plenty to judge when you’re a witness and not the patient. Life-long diseases test your decision-making skills and make people around you confident that they could make better choices. The people in your life will have unease about your disease. They may express this through teasing, failing to be there for you, or arguing about your treatment plan. Learning how to recognize this unease, and understanding that it is a defense technique and not about your worth as a person in need of support, is a start to building the support system that you will most definitely need.

  The Fallout of Support

  When you find yourself sick, your relationships will undoubtedly be tested. There comes a time when you will have no choice but to mindfully examine your friendships. Who will step up? What role will they play in making that relationship even stronger? Who will raise you up? Who will let you down and why? It is a bummer to think about, but it is common for people to let you down. Feeling powerless doesn’t feel good, and your family and friends will do their best to avoid it. The most likely result is that their support for you will fall away.

  How does that work? What does this fallout look like? When someone first gets severely injured in an accident, the people in their world rush to give support. Who wouldn’t want to be there for a friend or family member in need, incapacitated and probably depressed about having to postpone their life for a few days or possibly weeks? The second time someone gets injured, the support system tends to rally just a little slower, providing a little less encouragement, and they may even jokingly question if that person is intentionally getting into accidents for the sympathy, the days it will leave them out of work, or a variety of other excuses.

  Having a chronic illness works the same way. Let’s take Joey’s story as an example of how this fallout of support can happen. At twenty five years old, my older sister’s boyfriend, Joey, was diagnosed with a rare form of pancreatic cancer. I remember the feeling of my stomach dropping as I listened to her breaking the news over the phone. I raced to show my support, to do my share of research, to make calls, send care packages, and be an ear for venting frustrations. I had been a patient in crisis, and I knew exactly what to do. Two weeks later, none of Joey’s or my sister’s friends managed to show any sign of support or comfort. My heart broke for them again. Why weren’t people popping out of the woodwork to be there for them? My sister asked me on the phone, “Exactly what part of ‘My boyfriend has pancreatic cancer’ do they not understand?” I knew my sister had great friendships with people all over the country. Didn’t they know what a crisis this was? That’s when I realized that, no, they probably didn’t. They probably had no idea what this could be like. They were young adults who most likely had never known someone that was their age with cancer. They didn’t know if what Joey needed was support or privacy. They probably had no idea what to say, so they said nothing at all.

  Sound familiar? Support is not an instinct. It doesn’t come naturally to people who have never experienced that level of disaster. It doesn’t mean they don’t care, that they don’t want to care, or that they’re “bad people” for not diving head first into the water to fish you out. While some may try ineffectually (and sometimes offensively) to support you, others may completely vanish altogether. What they say about you isn’t fueled by you or your disease, but rather, it is greatly influenced by how small and ineffective they feel in the face of something so large and ambiguous that they have no power to make better.

  People Need Information and Experience to Effectively Show Support

  In most cases, the people in your life will not be able to fully relate to what you’re going through. They may not have a chronic illness. They may not have experienced being a caregiver or an emotional support for another patient in their lives. Help them to help you by communicating what it is that is happening, how you’re feeling about it, and maybe even linking them to some resources explaining what your condition is and how it progresses. Most importantly, let them know that their support is key to you getting through this. A statement like that will empower them to go the extra mile, learn about your illness, and feel like they have an important role to play in your recovery.

  They Need to Understand the Diagnosis. Consider sending them links to a website that might explain it more plainly. Sharing these kinds of informative articles on social media can also help friends get a clearer view of what’s going on behind the scenes.

  They Need to See What Has Changed. Before Joey’s diagnosis, he was your average Seattle-based twenty-something. Then, he lost thirty pounds in a short amount of time, could no longer work, and had to take time off his day job. He felt pain across his back and abdomen from where the tumor was pressing on his spleen and liver. But Joey still looked like Joey. How could anyone really notice a difference in him?

  They Need to Understand the Treatment. On his first day of chemo, everyone in Joey’s sphere of support was on pins and needles. We’d all heard what kind of aggressive treatment he was about to receive. We knew that he would likely feel sick and nauseated, and be drugged and in pain. We were informed. There were plenty of people in Joey’s life who cared for him, but how could they know how critical a day like that could be if they didn’t really know much about how chemo works?

  They Need to Know That They’re Needed. After weeks of radio silence from friends and relatives, my sister finally allowed me to set up a donation site to help Joey afford some alternative treatment options to deal with his side effects, help cover some living costs while they took off work to navigate treatment, and make sure they had back-up funds for emergencies. I created the site and put up a detailed story of what had happened so far in his treatment and what the next steps were. Within two days we raised several thousand dollars, most of which came from their friends and family. But what came with each donation mattered most. The notes of love and support came floo
ding in, and with them, notes of regret for not understanding the gravity of the situation sooner.

  A Diagnostic Mouthful: When They’re Ready to Listen, What Do I Say?

  Learning to talk to your family about your disease is one of the largest hurtles you’ll encounter. Educating them about your disease can sometimes feel like trying to teach advanced trigonometry to a four-year-old. But, learning to communicate on this topic is the best way to avoid misunderstanding and to assuage their lingering feelings of powerlessness.

  You must communicate with people who have their hands over their ears. When people you love don’t understand what is really happening, you may find they don’t stick around. I’d even recommend over-communicating with them! Write an email. Send a letter. Make a phone call. Write a status update. Spell it out with chocolate frosting. Embarrass them with a singing telegram.

  What happens when you’re confronted about your disease and asked to explain it and you freeze? Where do you even start? It can be kind of crazy how long you could go on about what your disease has done to your life without mentioning how. Your disease can feel like an insurmountable thing to describe on the spot. I know mine did. Let’s break it down by looking at some of the major impacts your disease has on your day. Here are some questions to get you started thinking about how you would respond:

  Do I wake up feeling good? Or, do I wake up feeling like I haven’t slept at all?

  Do I have to take multiple medications before getting a move on in the morning?