This article was first published on the Center for Chronic Illness website on April 9th, 2020. The Center for Chronic Illness (CCI) is a nonprofit organization based in Seattle, Washington. CCI promotes well-being and decreases isolation for those living with ongoing health challenges through support and education. To learn more, visit the website. Most of the links on this post are informational, but a few are affiliate links to help maintain this website. The coronavirus that causes COVID-19 is affecting the entire world right now; however, it's impact on individuals varies greatly. Everyone is struggling without exception; however, one group that may be experiencing a serious impact is people with chronic illness. Often people with chronic illness are immunosuppressed and fall into the category of "people with underlying health conditions." Approximately 133 million people live with chronic illness or about 40% of the population, so many people are facing a significant challenge right now. No one expected coronavirus to happen, just like no one expects a diagnosis of chronic illness. If there is one thing I know about the chronic illness community it is that we are resilient. COVID-19 is definitely affecting people with chronic conditions in a negative way; however, there are ways that we are more prepared for this than anyone else. Here are some ways that people with chronic illness may be impacted: 1. Health Anxiety. Those with chronic illness frequently experience anxiety related to our health. Autoimmune and genetic diseases often flare up and get worse depending on numerous factors, so people often live in fear of when that will happen next. With coronavirus there are even more unknowns, which can cause an uptick in anxiety. COVID-19 is taking a toll on everyone's mental health, but when you are in an at-risk category that anxiety can be even more extreme and difficult. 2. Marginalization. When someone dies from the coronavirus the news reports that the person was either an older adult or had underlying health conditions. For people with underlying health conditions this creates the feeling that our lives don’t matter as much as people without health conditions. Throughout this pandemic many chronically ill people have been made to feel marginalized and unimportant due to their illness. This is an echo of the greater marginalization people will chronic illness feel every day. 3. Isolation. COVID-19 is finally shining a light onto how many people with chronic illness live their lives every single day. Isolation for the sick is rarely if ever discussed in the national conversation. It may be a good time to bring it into the forefront, now that more people understand how difficult even short-term isolation can be. Isolation is a common byproduct of chronic conditions. Sometimes people aren’t able to work or have lost friends due to changes in life circumstances. People may be bedridden or have little energy to leave the house. With coronavirus we run the risk of increased isolation due to not being able to have visitors and people taking extra precautions with those who are sick. 4. Access. Coronavirus is cutting off access to everyone, but even more so for people with chronic illness. People may be fearful of attending their regular appointments due to being exposed at a clinic; perhaps they have a medical emergency related to their illness and feel different access to the emergency room. Even a short trip to the grocery store may feel like a huge risk. 5. Understanding. People with chronic illness already know what it is like for our whole worlds to be flipped upside down. Often this happens when we get sick and is an ongoing process. We’re constantly adapting and adjusting to a new normal. For the first time, some people are discovering what it is like to have something interrupt their life and drastically change what they are able to do. We have been preparing for this for years. We were also likely the early adopters of safety precautions due to being at some level of risk. 6. Body Awareness. People with chronic illness have increased body awareness. We are aware of every little change in sensation, no matter how subtle. This can be a blessing and a curse during the pandemic, but let’s look at how it can be a blessing. It's important to know as early as possible if you have contracted the coronavirus so that you can self-quarantine to prevent others from getting sick. Also, so that you can contact your doctor for any instructions and rest, rest, rest. 7. Survival Skills. We understand what it is like to be forced to find alternative ways to get things done. Maybe we already know how to buy groceries online, because in the past we’d been too exhausted to shop. Maybe we have a big stash of medical supplies, supplements, and medications, because these are things we need on a regular basis. Maybe we are really good at entertaining ourselves in the house, because we don’t go out as much as others. All these things will be to our benefit the longer we are required to stay at home. 8. Perspective. Perspective is the most important factor in how to manage any situation. We cannot change what is happening around us, but we can change our perspective. Years of living with an illness has likely taught us how to cope with things you cannot change. Perhaps you’ve learned to take things one day at time and live in the present moment. Likely you have practiced accepting what is. This is a trying time for everyone and maybe a time in which we can learn important lessons. There may be some good that comes from this. If anything the greater world may gain a little bit of understanding of what it’s like to live with chronic illness. "There is a difference between solitude and isolation. One is connected and one isn't. Solitude replenishes, isolation diminishes." - Henry Cloud
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This article was first published on the Global Lyme Alliance blog on March 20th, 2018. Most of the links on this post are informational, but a few are affiliate links to help maintain this website. Treatment of complex illness if rarely linear and one of the hardest things to cope with is when you stop making progress. I wrote a blog post for the Global Lyme Alliance blog about this very issue. My numbers won't budge. Every month I go in for a blood test and every month I get an email from my doctor stating that my inflammatory markers are the same. The numbers are not so high to cause a panic, but they're not low enough to signal any real improvement either. I've tried everything from meditation to medication, but nothing seems to work. Each month I pray the numbers will drop and I’m devastated when month after month they stay the same. I've put in all the work; there's been no stinting. I’ve been in treatment for three years. I've changed my lifestyle, my diet, and most difficult of all, my mindset. But I keep coming up short. There's no doubt I'm better. My bedridden days are mostly in the past, and the pain that keeps me up at night (painsomnia, I call it) happens once or twice week instead of every day. Another marker of my improvement is after treatment my herxheimer reactions are greatly diminished. These are positive trends, but still I am not where I want to be. I want clinical proof that my recovery is real. I want to know unequivocally that I'm heading toward remission. I've been at this dreaded plateau for months waiting to break free. I anxiously await the day when my inflammatory markers take a dramatic drop. Your plateau may be different than mine. Maybe you, too, made big improvements in the beginning and now it's tapering off, or maybe you're stuck waiting for any minuscule improvement at all. Either way the lack of progress may be the hardest thing to bear. All this was weighing heavily on me. Then one day I started thinking about actual plateaus in nature. Consider for a moment you are climbing up a mountain and reach a plateau. You've done the grueling work of going up the mountain and now you are walking on level ground. You are still moving forward, that hasn’t changed, but you’re not increasing your elevation. Maybe that's what plateaus are in treatment—a leveling off that doesn't feel like progress, because you aren’t climbing anymore. But you have achieved an incremental improvement in your recovery. This bit of visualization changed the way I thought about my lack of headway, though there were still some questions I needed to ask myself— questions you may need to ask yourself as well: Q: Have I really plateaued or is my progress just going slowly? A: With Lyme disease the improvement can be slow . . . very slow. As they say, any progress is good progress. If you feel comfortable with your treatment protocol, you may need to practice patience and remember you are getting better. However, sometimes the progress is too slow and even if there is incremental improvement you may want talk to your doctor about exploring ways to speed up your treatment plan. Q: Have you hit a plateau before? What helped jumpstart my healing? A: If this has happened before, what was it that made the difference? Maybe it's a new supplement or an increased dose of medication. Maybe your thyroid or adrenals are out of balance and need attention. Try to remember back to what helped you before and try it again. It may help to keep a journal about what you think is and isn’t working for you. Q: Do I need to change my treatment or ride it out? A: As I said, with Lyme getting better takes time. Ask yourself if you think your current treatment plan is sufficient to to get you better. This is a good place to use your intuition. If you feel skeptical every time you meet with your doctor that might be your body telling you something. Q: If I plan to stay the course when will I know it's time to adjust? A: Give yourself a timeline—six months, nine months—for when you want to reevaluate. Verbalize your timeline to your doctor, so she or he knows what you're thinking. Ask if there is a test that can be run at that time to compare where you were before to where you are now. Q: Am I testing too often? A: If you're like me and your numbers aren't budging, maybe it's time to put more space between tests. This depends naturally on what is medically advisable. But I I did realize that the constant testing was causing me frequent disappointments, which weren't good for my healing. I have since decided to go from once a month to once every other month for my bloodwork and focus on other things in the meantime. Q: Is there something else I could do to move forward? A: A plateau is the perfect time to reevaluate your habits. Perhaps it’s time to add more nutrients to your diet or increase detox. Have you always wanted to try a complementary therapy? Now may be the time. Or are there other options? Q: Is this a good time for a healing pause? A: Have no doubts, recovery from Lyme treatment is a full-time job. It seems like there's always something else you can try, but is that the best thing for your body? This could be an indication that it's time to take a break from all the intensity and let your body rest at the top of the mountain. Take some time and ask yourself these questions. Get quiet and let your intuition speak. There are few doctors, medications, or therapies that can give us as much insight as our own common sense. Remember the image of the mountain and keep walking forward on the level ground of the plateau—the uphill slope may be only a few steps ahead. "There is nothing so easily remade as our definitions of ourselves." - Dinaw Mengestu This article was first published on the Global Lyme Alliance blog on May 10th, 2019. Most of the links on this post are informational, but a few are affiliate links to help maintain this website. Note: This post discusses self-harm and suicide. If you feel suicidal or a danger to yourself or others, PLEASE call 988 Suicide & Crisis Lifeline or text HOME to 741741 to reach the Crisis Text Line. You can also call 911, or go to your nearest hospital emergency room. YOU ARE NOT IN THIS FIGHT ALONE. May is Lyme Disease Awareness Month and Mental Health Awareness month. These matters are inextricably linked because there is now a mental health crisis among those with tick-borne diseases. As Dr. Robert C. Bransfield writes, "Lyme and other tick-borne diseases contributes to causing a significant number of previously unexplained suicides and is associated with immune-mediated and metabolic changes resulting in psychiatric and other symptoms." If you've been in this circle for even a short while, you most likely have heard about a fellow Lyme warrior who died by suicide. You may have even known the person or have once called them your friend. Sadly, it happens far too often. Statistically, those with any chronic illness are more likely to die by their own hand than those the general population, but for those with Lyme and other tick-borne diseases the risk is even greater. The reason for this is complex, but here are three important factors to consider: 1. Living with Lyme disease is hard. The fatigue, the aching joints and muscles, the headaches, the brain fog and other symptoms of Lyme disease are constant and debilitating. Moreover, most Lyme patients have insomnia and rarely get a break from the barrage of symptoms. This means the patient also has to cope with a great deal of uncertainty (anxiety) over his or her health— a very heavy burden. 2. Lyme disease treatment is notoriously challenging for a variety of reasons, all of which it helps the Lyme patient to be aware of. First, because Lyme and other tick-borne diseases are not accepted by the mainstream medical community, the psychiatric ramifications of such illnesses generally go unconsidered by most doctors. Second, because treatment is often long term, painful, and the patient may get worse before he or she gets better. Third, Lyme disease treatment is expensive and rarely covered by health insurance, even though patients are often unable to work while undergoing the process. 3. Lyme disease bacteria can infect the brain. Neurological Lyme disease affects thinking and behavior. Thoughts can become distorted and hopeless and often rise to traumatic levels. It's said that "depression lies," because people's nervous systems send them messages that they are worthless or a burden to others in their life. Lyme disease lies, too, since it fosters depression and its woes. What's important to remember is that you are not alone in this fight. There are millions of people living with Lyme and also people in remission who stay connected to the Lyme community in the hope of helping others. Naturally, as a therapist, I encourage everyone with Lyme disease to consider therapy. Ideally, you should make sure your therapist understands chronic illnesses and medical trauma. However, simply having an empathetic ear to listen to your story can be transformative. Often our friends and family don't understand how difficult it is to live with this disease, so a therapist can be a necessary support in this fight. But what if regular therapy isn't enough. What if you are in crisis right now and need help? How To Tell if You Are in a Mental Health Crisis: 1. Self-harming behaviors. Self-harming behaviors have many manifestations. They may look like self-injury, such as cutting or burning or they may manifest as the patient purposely not taking important meds, or taking too much of something that can be harmful. 2. Suicidal thoughts. Thoughts about suicide are a sign of something very serious taking place and require immediate attention. Take note if your thoughts are increasing in frequency and intensity—If the trend is on the rise this can determine the level of intervention you need. Feelings of suicide should never be ignored. 3. Suicidal plans or behaviors. Having a plan to complete suicide or engaging in behaviors, such as saying goodbye to loved ones or giving away possessions is a medical EMERGENCY. Call 911 or go straight to your nearest emergency room and tell them what is happening. 4. Your intuition. Do you feel like you need immediate mental health care? Therapists, outpatient, and inpatient programs are all more accessible than ever before. With tele-health becoming more popular, you may even be able to see a psychiatrist or therapist through a secure video chat platform. What To Do in a Mental Health Crisis?: 1. Call 911 or go directly to the nearest emergency room. People who survived suicide attempts report that the time between considering suicide and making an attempt is only about an hour. That's a very small window. Seek help at once. Many of us who have Lyme also have negative perceptions of emergency rooms, but during a mental health crisis the focus is not on treating the Lyme disease. Doctors need to observe you and assess your suicidality. Most importantly is that you are in safe and contained place where you can get help. 2. Call or text a suicide hotline. Suicide hotlines, such as the 988 Suicide & Crisis Lifeline are free, anonymous, and available 24/7. These hotlines can also help you find information about local suicide crisis resources, such as voluntary inpatient and outpatient programs. 988 Suicide & Crisis Lifeline: 988 Crisis Text Line: Text “HOME” to 741741 3. Reach out to a trusted loved one. Opening up about mental health can make one feel ill at ease and vulnerable, but talking to such a loved one can help you immediately. Ask this this person to help you get the care you need. How To Prepare Yourself for a Mental Health Emergency: 1. Remove firearms from your home and lock up lethal medications. 2. Make a contact list of crisis phone numbers, local resources, and trusted friends or family members. It's a good idea to let these people know in advance that they are on this list, so they can be prepared to rise to the occasion if necessary. 3. Print this article out, fold it up and keep it with you always. You never know when you may need to consult it. Always keep in mind, you don't have to go through Lyme disease all alone. If no one sympathetic is near, search the internet in your area for Lyme or chronic illness support groups. If you can't find such a community where you live, please dig deeper. There are thousands of people creating safe spaces and raising Lyme-suicide awareness online. You deserve to heal. You deserve a life free of Lyme and its many debilitating symptoms. You deserve to be seen and heard. You deserve to be treated with dignity and respect in your illness. The world needs you and you need the world. "Here are the two best prayers I know: 'Help me, help me, help me' and 'Thank you, thank you, thank you.'" - Anne Lamott |
WelcomeI'm Kerry (She/Her/Hers) and I am a licensed therapist, group facilitator, poet, writer, & speaker. This is a place to acknowledge and validate our suffering and trauma, while also learning how to turn toward aliveness and spaciousness. Categories
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