Emily Filmore

@emily-filmore | contributor
Emily A. Filmore is the author of “The Marvelous Transformation: Living Well with Autoimmune Disease,” which centers on her experiences with chronic illness. She is also the author of the “With My Child” series of children’s books about family and the co-author of “Conversations with God for Parents” with Neale Donald Walsch and Laurie Lankins Farley. She is currently a Board Advisor to Myositis Support and Understanding and was one of the Founding Directors.
Emily Filmore

Adjusting to Life After the Vaccine When You're Immune Suppressed

I don’t work due to my cluster of diseases, at the forefront being dermatomyositis, my body riddled with weakness, rashes, fatigue and pain. I’ve been immune suppressed for much of the past 26 years. I know my pandemic experience was somewhat unique. My husband was fortunate to be able to work at home for the past 53 weeks and four days. I immediately started sewing masks, free for friends and family, when we shut down. I stopped counting at 300 masks. Our wonderful son and his partner brought us our groceries; we had everything else delivered. After the initial quarantine we ventured out in public a little, in the summer lull, but quickly retreated as the numbers of cases started to climb. Since then, we avoided indoor public spaces with two exceptions, my doctor appointments, and our daughter’s practices at the ice rink. Even those were tenuous, I had virtual appointments when possible and she only skated on sessions with fewer than five people for the majority of the pandemic. She periodically completely stopped practices for weeks at a time as the numbers of cases escalated. Family members visited with us outside, no matter the weather, masked, distanced, joyously, unabashedly and unreservedly grateful to be together however we could…all to keep me from getting COVID-19. My family did everything they could to keep me safe, and I am infinitely grateful. I was privileged to be wrapped in a cocoon of love, masks, cleansing wipes and sanitizer. If you want to understand love and compassion, look into the eyes of your 4-year-old nephew as he puts his mask on because, “Hold on, Auntie. I hate ‘rona, I need to get my mask on, so I won’t make you sick.” There was no fear in that statement, only a declaration of pure love and protection. It showed the understanding of the situation we were living in, and his role as a loving family member protecting someone from the outside world. We (by “we” I mean my unflappable husband and daughter) spent months wiping down everything as it came into the house. Then as the scientists learned more about transmission types and prevalence we relaxed. We still use sanitizer like water. We still wipe our faces and arms with baby wipes when we leave public places, although now that I am fully vaccinated I am feeling a little less nervous about every surface I touch. Which brings me to coming out of my cocoon… This week, after 53 weeks, my daughter traveled to skate at a training facility in another state for a week of training and my husband went back to the office for the first time. It feels really abrupt and I have to admit I’m nervous. I think I will miss the relative safety of the cocoon my family built around me. Although I guess looking back over the past couple of weeks it really isn’t so abrupt. They made “an emergency” road trip last week to get her new skates when hers broke down suddenly. I picked up take-out by myself. I walked into a couple of stores. I hugged my little nephews. I ate dinner with my friend who is also fully vaccinated. All things that felt impossible and unreachable a couple of weeks ago. This morning as my husband and I ate breakfast together before he left for work, while we texted with our daughter as she woke up to get ready for her first day of training at this new facility, I was suddenly overwhelmed with the feeling that my cocoon of safety was gone. I had a rush of feelings: gratitude, fear, anxiety, sadness, excitement and shock that we are moving forward. A cold puts me out for weeks. A sinus infection gives me “walking” pneumonia. I’m participating in the Johns Hopkins study to monitor antibodies in vaccinated chronic illness patients and when I got the email stating that my body had made antibodies in response to my first shot I crumbled into tears of joy and liberation. A part of me never believed, even with our precautions, that I would survive this pandemic; the knowledge that my body was trying to mount a defense, no matter the size, is encouraging and gave me great relief. I am happy and excited to be moving forward. I mourn deeply for those we have lost and sincerely hope we, as a people, can learn lessons from this pandemic about how to treat each other; but I am worried that many will go back to normal as if it never happened. I know my experience of being safely cocooned is not that same for everyone, but I imagine others with chronic illness and with immune suppression will experience some level of processing of emotions as they and their loved ones re-enter the world as well. I hope by telling my story it helps to normalize that it is OK to be scared, to even miss the time of being “stuck” at home, to whatever extent you were. I know that even through all the anxiety, pain, sadness and anger I felt, for the past year, I felt an immense amount of gratitude for so many things and emerging is not easy. We can only control the things we have control over, so we will continue to mask (double mask in crowds) and do what we can to stay safe, but it is nice not to be so afraid anymore.

Chinyere Amobi

COVID-19 Revealed Society's Disregard of People With Chronic Illness

As the number of COVID-19 cases in the U.S. increased by the tens, hundreds, and then thousands last March, I and many others in the chronic disease community knew what to expect. I have lived with lupus for more than a decade and an autoimmune blood disorder for the last four years, so I’m used to avoiding gatherings or visits with people who have obvious symptoms of infectious disease. Because I take immune-suppressing drugs to control my condition, I’m already cautious about my outings during flu season and know how to slyly dodge a handshake from a person who has just sneezed or coughed. So wearing masks and social distancing made sense and almost felt natural to me, at least at first. What I was really dreading was that my health and wellbeing as a chronically ill person would soon take a back seat — and that’s exactly what happened. My monthly medication supply, once deemed essential, would be delayed and withheld, and the medical team once so vital to my life would be impossible to reach. If the COVID-19 pandemic has taught me anything, it’s that the U.S. has a complicated relationship with chronic disease. It seems that many cannot conceive of the fact that a person can appear healthy and lead an active, productive life while also living with a long-term condition that has challenging, life-altering symptoms. Many don’t fully grasp that they or someone they love is actually living with a chronic illness right now that leaves them at higher risk of COVID-19 complications. That eagerness to overlook the needs of chronically ill Americans is reflected everywhere — from dinner tables to media coverage to ostensibly progressive health care systems. This chronic disregard leads someone like me to the conclusion that this country has trouble viewing chronically ill people as important, productive members of society. And it shows. Especially now. The way the media covered COVID-19, and the way that audiences responded, were big indicators that Americans viewed chronically ill people as unimportant, especially in the early months of the 2020 hellscape. The pandemic may be a golden age for science and health journalism, but not for the comment section. The comment sections of many news articles were brutal. With each new article about someone who had died from COVID-19, the commenters would erupt with accusations. “Way to bury the lead! This person had diabetes.” Or a frequent one: “Stop fearmongering! Why wait until two paragraphs in to mention this person had chemotherapy last month?” The underlying message seemed to be that the death of an already sick person from another disease wasn’t news. That because the person was already battling disease, their death from this new, mysterious illness was unremarkable, unsurprising, and thus, not a reason to pay attention and change behavior. People seemed all too eager to prove to themselves that they needn’t worry. The same could be said for the reaction to elderly deaths. “Not us.” Over time, it became clear that COVID-19 was a disease that would threaten all of our lives, once the obituaries of middle-aged pastors, young bus drivers, and new mothers became too numerous to count. My experience with getting health care during the first half of the pandemic was a practice in anger management. When Trump hailed hydroxychloroquine as the new miracle cure for COVID-19, my stomach clenched. Not only because I knew there was no evidence base to declare hydroxychloroquine as a cure-all for COVID-19, but because I knew the drug I’ve used for years — the most common and effective treatment for lupus in the last several decades — was about to become unavailable. News stories referred to hydroxychloroquine as a “malaria medication,” erasing the countless individuals who take the drug daily for lupus, rheumatoid arthritis, and other serious conditions. My insurance provider’s handling of the drug’s supply was shocking. After repeated attempts to get ahold of my rheumatologist and Kaiser Permanente’s pharmacy, I received the following message: “As you may have seen in news reports, hydroxychloroquine has shown promise in treating COVID-19 infections…Please do not contact your doctor about making an exception for refills…Thank you for helping those who are critically ill. You are helping us save lives. We appreciate your understanding…” I did understand. The urgency of acute illness eclipsed the need for preventative and long-term care. I was left to see which would come first: a dangerous flare-up of my conditions, or an increased supply of my drug. One night I was up until 11 p.m. arguing with pharmacy techs about whether I could in fact survive 40 days without my daily medication, as they said my rheumatologist had indicated. I didn’t hear back from Kaiser’s rheumatology department for weeks, despite my many efforts. In the end, I was able to access my regular supply of hydroxychloroquine after the drug lost its luster and studies failed to reveal any significant improvement in severe COVID-19 disease or survival. While the anxiety of that temporary crisis passed, the sense that my health and well-being could suddenly be deemed unessential remained. The stories of lupus patients around the country reveal that like me, many were suddenly cut off from their medication with no emergency supply and little explanation or consolation from their health care provider. My case of lupus is considered mild; I can’t imagine the fear experienced by lupus patients with severe kidney and lung damage from the disease. As I sit writing this, my parents are staying with my husband and I in Southern California. They just got their second dose of the Moderna vaccine this weekend, through a community campaign targeting high-risk people. My husband, a professor, became eligible for vaccination last week as part of a state expansion for people in education, and just got his first shot. My chronic diseases were left off the list of conditions eligible for vaccination in California as of March 15, after Governor Newsom expanded his previously age-based priority list to include those with a narrow list of disabilities and conditions as eligible. Ironically, the fact that I work for a university will make me eligible for vaccination before my status as someone living with serious chronic conditions. As I and many others at high risk of severe complications from COVID-19 anxiously wait for inclusion, only my faith and my husband’s extra efforts to keep me safe sustain me. I’m not holding my breath for our health care system.

Emily Filmore

COVID-19: How Anti-Maskers Hurt Vulnerable Americans

We take our shoes off, we go through metal detectors, we do so many things that “infringe” upon our previously understood everyday freedoms. But we agreed to them, bought into them and accepted them as necessary, for safety. Yet, anti-maskers can’t put on a mask because it infringes on their right to walk around without a piece of fabric over their face. Guess what? The longer the coronavirus is untraceable (that’s right, we aren’t asking for eradication, no one thought we would get eradication), the longer we alter vulnerable people’s lives. The longer it is untraceable, not trackable, running rampant, these anti-maskers are infringing on my, and so many others who are similarly situated, rights to leave our houses safely, to go to the doctor, to get blood work done, to go to the grocery store, to even go to a park without being scared. “If you are vulnerable, just stay home, let the rest of us live our lives.” OK, I’ll play their game. Let’s pretend that the fact that I got an autoimmune disease, as a reaction to mono, at 19 years old, and am immune suppressed, through no fault of my own, means that I am expendable and should lose my right to freely be out in the world so that the anti-maskers can refuse to put a piece of fabric over their face. I’ll continue to stay home. I’ve only left my “bubble” (meaning risking exposure outside of my immediate household) once as of writing this. And that was with minimal risk for a walk at a park with wide open space. We only encountered a few people, social distanced and we wore masks. Until then we’d stayed home, in our yard and driveway; only even venturing out of the yard a total of three or four times but never leaving our immediate neighborhood. I have a 14-year-old and a husband. What about their freedom to live their lives outside of the home? If they leave the house and come home, they jeopardize me. We can’t afford to get me separate housing until there is a vaccine. Besides, is it in the American lists of freedoms that autoimmune disease, which has already robbed our family of so much, also means I should have to give up watching my child grow up, in person, so that anti-maskers can refuse to wear a piece of cloth? Neither of them, my husband or daughter, asked for me to be sick, either. Are they also expendable? Did they do something wrong to deserve for their rights to be abridged because they have a sick family member? Do they not have the same rights, as the rest of America, to freedom of movement? Is someone else’s freedom to potentially spread germs while asymptomatic more American than my daughter’s right to leave her house? Than my husband’s right to go take a licensing exam required by his job? Is your right to go party at the Lake of the Ozarks more important than my blood work (which my doctors have deemed unsafe to do at this point)? Are the “privacy” rights of the Republican legislators in Pennsylvania to hide that they are quarantining because of an exposure — or their refusal to wear masks day after day in meetings after the known exposures — more important than their colleagues’ rights to protect their families, including one legislator who donated a kidney mere months ago? In how many households across America is this being played out where a vulnerable family member’s health is dictating a lack of engagement (or lowered engagement) with the world, to protect against the virus, because some Americans have decided masking is the new unpatriotic, conspiracy plot? It’s unpatriotic to be selfish. “Ask not what your country can do for you — ask what you can do for your country.” — JFK *Yes, I know a very small percentage of people have legitimate medical reasons to not wear a mask, why is the “stay at home if you are vulnerable or uncomfortable” reasoning not applying to these vocally loud people for their safety? Hmmm. Oh yeah, mostly, the people with real medical reasons are not the ones raising hell over the masks. If the people who legitimately can’t wear masks were the only ones not wearing them in public we would still lower transmission rates drastically. Drastically. Side note, HIPAA does not prevent you from giving a medical reason to a grocery store clerk or a home improvement store greeter as to why you refuse to mask. HIPAA only applies to your medical providers and insurance companies. The ADA also doesn’t apply to your situation if you are making up a bogus disability or medical condition to avoid wearing a mask; and the ADA law only requires “reasonable accommodations.” Meaning: if they offer to shop for you, it suffices. The Facebook posts claiming to have the answer to get out of wearing a mask, by claiming a fake medical reason, are bullshit and spit in the face of people living with disability and illness every day.* I remember many reopeners, now, anti-maskers saying that the government should back off and open the country because people would be respectful and caring. The argument was Americans would be responsible for each other and wouldn’t endanger each other because people care about fellow citizens. In fact, my own governor used this as his reason, over and over, for delaying closing the state and later, as part of his reasoning reopening the state. If only the government would stop over-stepping; businesses should be able to open; free capitalism and good people would police this themselves. Except that’s not what has come to fruition. The reopener movement turned into the “boycott Costco” movement. Businesses who are opening and requiring masks are being told it’s not their place. Greeters trying to enforce the mask rules have been shot by angry anti-maskers. Fights have broken out. The conservative sentiment that capitalism will allow for the safety of our fellow Americans without a nanny state has failed. So”if you are vulnerable stay home” doesn’t work. But masking does. But from what I’ve seen, America is not the land of the “free” it is the land of the “me.”

Erin Migdol

Chronic Pain Patients Respond to Vox Podcast About Pain Acceptance

In the wake of the opioid crisis, medical professionals’ fears about prescribing opioid painkillers have risen — to the extent that some doctors have turned to “pain acceptance” as a treatment philosophy. But chronic pain patients are speaking out about how dangerous that could be for their quality of life. In November, Vox published a podcast detailing how “pain acceptance” is “gaining traction” among American doctors as a response to the opioid epidemic. The movement is “kind of just what it sounds like,” said narrator Sarah Kliff, who lives with chronic pain herself. “It means asking patients to live with a certain level of pain — for months, years, or even for the rest of their lives.” The podcast features Jane Ballantyne, a controversial doctor who champions pain acceptance. Kliff said that as Ballantyne watched problems from opioids, like the side effects and risk of addiction and dependence, grow, she started questioning the “assumption” in pain treatment that doctors should get their patients to zero pain, which is why they were prescribing opioids. Ballantyne wondered, what if we stopped aiming for zero? “There are approaches that involve not becoming too focused on the pain, thinking of living with the pain rather than thinking you can’t live with the pain,” Ballantyne said. Ballantyne acknowledged that she has been criticized for her philosophy, which she first wrote about in 2015. “[The response] was so personally aggressive and showed such lack of understanding of what we were actually saying. It was interpreted as cruel and unsympathetic and you don’t understand what people are going through,” she said. The podcast concluded with the stories of two chronic pain patients — one who had tried “pain acceptance” and experienced some success, and another who remained skeptical about the philosophy. The podcast prompted a backlash from people with chronic pain, who argued that saying a level of chronic pain is “acceptable” essentially abandons chronic pain patients. Rather than tell them they need to accept their pain, they need more pain relief options, doctors who are willing to fight for them, and less stigma against using opioids responsibly. Many pointed out that they’ve actually already accepted and learned to live with their pain (and even done the techniques Ballantyne suggests, like meditation and physical therapy), but that doesn’t mean they don’t still deserve help reducing their pain. — Gale♿????‍???????? (@chaoticqueer) November 15, 2017 Untreated pain often leads to depression and suicide. Any doctor that thinks that’s preferable to a low risk of addiction is breaking the hippocratic oath.— Brian who wants the nazis gone, jack (@TheBrianest) November 15, 2017 Managing pain is multi-modal. The goal for me is the highest quality of life with the minimum medication. I like being clear-headed AND I like to be functional. It’s a daily balancing act of which medications are one component.— Andi Cougevan (@AndiCougevan) November 14, 2017 With painkillers I get 4hrs of sleep a night, with a 20% chance of “pain nightmares” where it’s just monsters ripping you to pieces as your brain tries to deal with the pain.That is with treatment, without it I’m bedridden.— Jat (@KatastrophicImp) November 15, 2017 If you’ve never had chronic pain, this is truly a highhanded and rather evil thing to even contemplate.— Sue Stone (@knittingknots) November 15, 2017 Chronic pain isn’t a one size fits all… I’ve accepted my autoimmune diseases and chronic pain, I accept that this is my life and I will keep fighting. I will not accept not having treatment because I need a quality of life, so I can run, so I can have a life.— Mel (@Meljanx) November 15, 2017 Same here. On them, we’ll I’m still sick. But I am able to work full time and take care of my 3 kids (though not alone). Adding school within the next year too. Pain meds are just as needed as any other medications I’m on.— Roma (@findingmygay) November 16, 2017 I try to accept my pain so that, as my therapist would say, I don’t have an additional layer of suffering, i.e., psychological suffering. That doesn’t mean that the physical pain and suffering shouldn’t still be treated. Right now, the latter isn’t for me.— Beth Morton (@beth_morton) November 15, 2017 Meditation is one tool people should have access to. So are pain meds.— Hope R. Henderson (@hoperhenderson) November 15, 2017 Though politicians and medical professionals often suggest cutting opioid prescriptions as a solution to the crisis, studies show the majority of people prescribed opioids for chronic pain use them responsibly and do not become addicted and report a lower quality of life and worsening pain with opioid restrictions. Opening photo courtesy of Pexels

Emily Filmore

What to Do When You Have a Chronic Disease and Sex Is Hard

February is the month of love. Chocolate-covered strawberries, roses, sensual massage oils, lingerie, and champagne — we see reminders of romance and, yes, sex everywhere. When you are dealing with the effects of chronic illness — pain, physical limitations, and fatigue which are not in your control — they can impair your sex-life. Unfortunately, during the Valentine’s season, for people whose ability to have sex has become difficult, the simple objects associated with romance can produce guilt, shame, and sadness. People who struggle with their health may report feelings of inadequacy, fear of their partners leaving them, and feelings that their lives have become all about their illness. Even in the absence of sex, partners spending a little bit of extra time paying mutual attention to their relationship can be very rewarding. It’s important to remember that sex isn’t the only avenue to intimacy with your partner. You can work together to find other ways to be close. There are the obvious alternative modes of sexual expression; I’ll leave those to your imagination and ability. Let’s discuss the non-sexual, intimate expressions you can share. It might be important to have an up-front conversation, before embarking on this intimacy experience, though, setting expectations and understandings for outcomes. Some people find that as they increase intimacy their desire for actual sexual intercourse also increases, so being frank ahead of time that these interactions are being shared for the joy of the interactions themselves, not to lead to sex, so there aren’t hurt feelings or disappointment on either party’s side later will be helpful. Here are some intimacy-provoking activities you might want to try with your partner: • Leave love notes for each other in unexpected places, like taped to the bathroom mirror, in your lover’s lunch, folded up and left on his pillow, tucked away in a clothing drawer you know she will open the next morning, or on the dashboard of your partner’s car. • Go for evening strolls together (if you are able). Or sit outside and look up at the night sky holding hands. • Engage in active eye contact. When people are first dating, they can’t stop looking at each other, but after being together for a while, it seems that eye contact fades. Set aside time each evening to sit and truly look at each other. • Make a point to kiss each other upon entering and leaving a room… every time. • Commit to constant, consistent, touch for an hour per day. Sit together, holding hands, massaging/stroking each other, and staying physically connected for an hour while you talk to each other. • Share a glass of wine, cup of tea, piece of pie, piece of cake, bowl of hummus and veggies – whatever you both enjoy. While you do so, share stories about your day with each other. • Laughter is a wonderful bonding experience. Have a joke telling contest; each of you can research jokes, or make up jokes and tell them to each other. No matter how cheesy they are, collapsing into fits of shared laughter will be intimate and loving. • Cook a meal together. There is something about the close quarters of a kitchen, the shared work of cooking together, and warm smells of wonderful food that induces feelings of intimacy and bonding. • Be playful with each other. Tickle each other, be silly, and be lighthearted. • Cuddle in bed while reading a book, listening to music, or watching a movie. • Sit together and talk… about your day, not about bills, the kids, or your health. Talk about your dreams, your desires, things you like and dislike about the world, places you would like to visit, etc. Make a shared dream. The heat and passion of a new relationship fades. I think long-term happiness is truly about choosing to be with your partner every day and finding new ways to express your love and commitment to each other, through every vicissitude of life. Finding ways to be emotionally and spiritually passionate about your partner, through steps like outlined above can be far more fulfilling, and less likely to fade, than physical attraction. In my book, “The Marvelous Transformation: Living Well with Autoimmune Disease,” I share my relationship with my husband, and how we manage to support each other emotionally, physically, and spiritually, despite my disease. I believe one of our greatest strengths is that our love for each other can transcend how often we have sexual intercourse. The power of our union is achieved, instead, in how we wake up every morning committed to making sure each other feels loved, happy, fulfilled, cherished, and appreciated. I hope, through these tips, you and your partner can approach the month of love with renewed vigor, without fear, and perhaps even take a new approach to your relationship throughout the year, rather than just at Valentine’s Day. We want to hear your story. Become a Mighty contributor here . Lead photo by Thinkstock Images

Emily Filmore

How to Support a Loved One With a Chronic Illness

My husband, Scott, and I wrote this post together to address a recurring topic of conversation in health support groups. And that issue is the difficulty of spouses, partners, parents, siblings, children or friends of people with chronic illnesses to accept the realities of their loved ones’ health situations. This is often compounded for people with so-called invisible diseases such as myositis, fibromyalgia, multiple sclerosis, chronic migraines and other autoimmune diseases because no matter how bad patients feel on the inside, no matter how weak their muscles, no matter how much fatigued they feel, they often look normal to the outside world. I asked Scott to share his thoughts below about how some spouses, significant others or family members don’t understand, or worse, doubt the experiences of their chronically ill loved ones. “I can’t imagine being mean or dismissive of Emily when she isn’t feeling well. I think people who do that must either not understand the full extent of their partner’s illness, or they’re acting without thinking. It frustrates me to hear about other spouses and family members who treat their sick loved ones this way because I think you would both be happier if you took time to the time to educate yourself about their condition. It seems like it must be coming from a place of ignorance or lack of understanding about the disease. Being kind and knowing they aren’t making it up comes with more knowledge. If you’re with someone, you need to have the right attitude and ask yourself, “Why would your spouse make this up?” When I met Emily and found out how sick she was, we encountered a lot of confusion about her health. We saw multiple doctors who didn’t know what was going on or what to do, but I never thought she was faking her illness or thought about blaming her or being upset with her. I knew if it was hereditary, it was out of her control. I also looked at her lifestyle and knew that she wasn’t doing anything to cause it. But regardless of lifestyle, I realized that no one deserved to be that sick. So I decided early in my relationship with Emily that I would be supportive and hope it would be something that could be resolved. After I realized that it wasn’t going away, even before we were completely committed to each other, I always had hope that she could go into remission. When we started to get serious, I still had to make a conscious choice, along with the decision to be together, that if I stayed with her, it wouldn’t be fair to be together and hold her health against her. I had to decide that I would accept her health status, whatever it was, because I wanted to be with her. So I deliberately decided that I wouldn’t resent her for something she couldn’t control. And in the end, I decided the best thing I could do was to be loving and supportive to help her through it because I loved her and wanted to live my life with her. That’s not to say it’s always been easy. Emily’s illness has affected me, too. I have struggled with our financial difficulties. I handle any physical activities that she can’t do. I do a large majority of the housework on top of working long hours. And I have to take the extra time to do things for her when she is acutely ill like running errands, getting medications, rubbing her when she’s in pain, sitting with her when she’s scared and going to doctor’s appointments or medical procedures, all of which have interfered with my work. Plus, I worry about her on a daily basis. It’s frustrating and exhausting to watch her go through treatments that start to work and then stop working unexpectedly or cause side effects. It’s frustrating to know that we will never know all of the answers. I wish I could change it all and take it away for her, but I know I can’t. But what I can do is be kind and supportive and not make things worse by being rude, dismissive or angry. She asks me all the time if I made a mistake by marrying her since her illness has stolen so much from us. When I look back, I wouldn’t want to change a thing because it would have altered the good things in our lives. We have a beautiful daughter, and we also share our home with our wonderful nephew. I have a wife who loves me just the way I am. And in spite of her health, we have a beautiful life. I agree with everything Emily wrote in her book, “The Marvelous Transformation: Living Well with Autoimmune Disease.” And that is the lessons we have learned and the gifts we have received from her disease. We have learned a lot about gratitude, we learned to slow down and enjoy life, we embrace humor and we have learned to appreciate each other and treasure our time together. I hope other people will read this and choose to be gentler and kinder toward their loved ones. I hope you will remember they didn’t choose their circumstances, but you can choose to help make the situation better instead of worse with a little bit of thought and tenderness.” Follow this journey on emilyfilmore.com .

Emily Filmore

Making Sure a Chronically Ill Friend Doesn’t Feel Left Behind

People with chronic illnesses aren’t sheltered from reality. They know their lives have made a dramatic shift. The majority of them had full, happy lives prior to becoming sick. That means they’re mourning much of the life they unwillingly lost, including the friends who decided it was too much work to maintain a friendship. I teach people to concentrate on the positives in their lives and to practice gratitude for the friendships that have survived because those people are their true friends. To understand that a chronic illness doesn’t have to lead to chronic unhappiness, we need to realize our new lives don’t have to be emotionally wrought with pain, even as our physical bodies might be. Patients often question how to maintain a social life with their heathy friends. They also question how to avoid feeling left behind when their health interferes with activities their friends engage in as life moves on for everyone else. One of the worst things someone with chronic illness can do is make a mistake in the balance between keeping a social life and overextending themselves. Misjudging their energy and strength can lead to more relapses of symptoms or worse. Here are some helpful hints for how friends of people with chronic illness can assist in maintaining friendships, while still doing things that will be enjoyable for all people involved! 1. A visit to a chronically ill person’s house to talk can mean just as much as a lunch or coffee date out. For a big treat, stop by on the way over and grab a surprise cup of our favorite coffee or a frozen yogurt. We can have just as intriguing of a conversation sitting at the kitchen table as at a diner or coffee house, and we will be much more comfortable. This will keep us from being sequestered from your lives, yet keep us from the trials of going out. 2. We are really proud of you for that marathon (5K, swim-a-thon, bike trip, hike, ski trip) you just completed! If you see a sad look flash across our faces, it isn’t jealousy — truly it’s not. It’s the utter sadness that we know we will likely never get to experience that accomplishment with you and wishing we could join you. But please, please share away. We want to be part of your life, and we want to know your joys. Don’t hide them from us. Please don’t be offended if it takes us a second to catch our breath before we belt out a hearty, “Congratulations! I’m so happy for you!” 3. We’d love to go shopping with you. We still like to do the things we used to do, and we don’t want to lose all of the shared times we had with you. We only ask for your patience with our pace and your understanding when the trip is abbreviated due our pain, fatigue or weakness. We can always look at it as an excuse for an extra-long lunch — dessert included. But either way, please treat us tenderly if the day doesn’t go as planned. 4. We miss our nights out on the town. We remember “dancing on the ceiling” and not “going down ’til the sun comes up!” But unfortunately, these days, nights like those might end with us at the hospital emergency room. If you have a great girls’/guys’ night out planned, it would be nice to include us for dinner before you go on to party. That way, we can still feel a part of your night life, but be back home in our comfy clothes before it’s time for our next dose of meds. We can still “party like it’s 1999” at dinner! 5. We can’t join in leisurely bike rides, hikes and nature walks with you like in the past. Consider going with us on car rides to see the fall foliage or on a short walk at a park with a nice, flat trail. Or join us for a picnic and enjoy the scenery from the convenience of a picnic table. We can still enjoy nature, but it will just be at a slower pace! 6. Offer to drive if we’re going on a long outing. I know, for me, it takes a lot of energy to get ready, then driving takes more energy and the activity takes even more energy. (Heck, I’m ready for a nap after I shower and get dressed.) By the time I have to drive home, sometimes I’m so tired I’m scared to try. If you can offer to pick me up and drive to our destination, it takes away two of my responsibilities — aka two energy-zapping activities. Then I can spend more energy on talking and listening to you, enjoying our chosen activity and walking a few more minutes. 7. I really, really don’t care if you drink. My not drinking is not an indictment of your drinking. I’m taking medications that make drinking dangerous. And no, I’m not exaggerating that, nor am I making it up. You, on the other hand, continue to badger me about drinking. Now, that might make me mad. But you having a glass of wine, shot of tequila or a bourbon and Coke, while I have my Shirley Temple as we chat doesn’t offend me. Drink away! Live your life! 8. I’m not lazy, I’m ill. When I stand for too long, my body hurts all over and I get very tired, very fast. Please don’t think I’m trying to end the conversation if I say, “Hey, can we find a seat?” I probably want to continue talking to you, but I just want to do it in a more comfortable position — sitting down. We can resume our challenging debate about climate change protocols in Siberia once I’m cozily nestled in my lawn chair. 9. Some chronically ill people are unable to leave their houses, which is even more isolating. If you’re friends with someone who is housebound, you could offer to visit and cook dinner together and bring a bottle of sparkling cider or, if appropriate, wine. Bring a pretty tablecloth and a candle or small bouquet of flowers to set the table like at a restaurant. Play music in the background, so your friend feels they’re transported out of their house. Sharing an evening’s dinner will brighten their day and give them a short respite from the monotony that constantly being at home brings. 10. Treat us like a friend. I have heard the following from countless people: “I am a fallible human. I feel alone and scared. I don’t want to be sick, and I don’t want to miss out on life and the things my friends and I used to do. I will make mistakes as I work my way through this ‘new normal.’ I don’t want to be seen as ‘that sick girl/guy.’ I want to be seen, first and foremost, as me, the same person they have always known, just with some physical accommodations. If I cancel plans on my friends at the last minute, I hope they try not to take it personally. I hope they will take a breath and remember that even if I am smiling, I’m dealing with something they don’t fully comprehend inside. If I make a mistake, I hope they will tell me, with love, so I can do better.” In short, treat your chronically friend, like, well, a friend! 11. Please don’t make fun of me, call me a liar or doubt my sincerity. It hurts my feelings when I have to miss outings and nobody seems to care about the emotional impact. It’s so hard to admit that I can’t go to outings that sometimes I’m willing to sacrifice my health and go anyway. Admitting I can’t go is a big step that takes bravery. Please be kind and understand what a loss this causes me to feel. Again, treat me like you would treat a friend. 12. Sometimes it might seem that I’m self-centered, but I don’t mean to be. For instance, if it seems all I talk about is my health, and I don’t ask about you, it’s not because I don’t care. I may be scared about an upcoming result, or I may have been isolated and not talked recent events through yet. But that’s no excuse. Ask me when you get a turn to talk. Just do it with kindness, and I promise to give you the same courtesy. Allow me to treat you like a friend, including accepting my apology when I mess up. Know that friendships are vitally important to people with chronic illness, just like everyone else. We value our friends and we miss the friends we have lost to illness. We know it is a little extra work on both of our parts, but we want our friendships to be stronger than our bodies, which can happen if we work together. With a little bit of thought and teamwork, chronically ill friends don’t have to feel left behind. Follow this journey on emilyfilmore.com . Lead photo source: Thinkstock Images