Brittany Rogers

@brittany-rogers | contributor
Brittany, 23, is from the Pacific Northwest. She loves to travel and has an amazing husband (and an ugly dog she adores!). She is convinced her cat is trying to take over the world. She is disabled from many an ailment which makes her a mighty Spoonie. She is an admin for the Inland Northwest EDS Support Group, and does community outreach with the foster care program in the state of Washington.

Hyper-POTS, Ehlers-Danlos: Not Responding to Messages Due to Anxiety

My phone buzzes once. Twice. Three times. My heart beats quickly as I wait for the buzzing to stop. I look down- four missed calls, two voicemails, five emails, and seven Facebook notifications. A wave of anxiety rolls over me looking at all the things I have missed, and I feel overwhelmed. What if the missed call was a doctor with bad news? What if my Facebook messages are friends who need advice I can’t give? What if I forgot something I was supposed to do? I haven’t checked my messages in days, what if I missed something, what if someone is upset I didn’t answer their call? What if, what if, what if. The stress takes over, and even though I know none of those things are likely, I put my phone away. Over 40 million American adults are affected by anxiety, and it can be caused by a multitude of things. People see counselors, practice meditation, take antidepressants or anxiety medication or do whatever they can to help manage the symptoms. I struggle with the general anxiety and depression that often comes along with being chronically ill, but I also have another type of anxiety. I have a condition called Ehlers-Danlos syndrome, which can come with many different comorbid conditions. One of those conditions is called dysautonomia. I have a type of dysautonomia called hyperadrenergic postural orthostatic tachycardia syndrome (or hyper-POTS). This syndrome causes many symptoms: nausea, dizziness, fainting, fatigue, migraines, brain fog, palpitations…and severe anxiety. Many people with POTS are in fact misdiagnosed with anxiety disorders first, as the symptoms are so similar. Hyper-POTS can cause something called adrenal fatigue. This condition can cause your body to not produce enough of certain hormones, which we rely on to physically handle stress. These hormones also control your fight-flight-or-freeze response, so when it is out of balance, it makes you feel on edge all the time. It is so hard to manage the symptoms of anxiety when you have these conditions, as traditional medications often don’t help, and talk therapy does little when the problem is a physical response in your body. When you couple the POTS anxiety with the problems faced by many with chronic illnesses – isolation, depression, anger, frustration, disappointment, physical pain, coping with the “sick” feeling all the time, managing doctors, medications, treatments, the constant uncertainty of how each day will go and trying to participate in “real life” – it can all be overwhelming. Overwhelming to the point you are frozen. I feel so frustrated with myself when I am overcome with anxiety, and guilty when I ignore and shut out the ones I love. And each day I ignore the things that are causing anxiety, they build up and the anxiety worsens. Sometimes it can take a week or more to come out of an episode. To start to function. To feel OK again. To breathe. So, I am sorry I didn’t answer my phone. It isn’t because I don’t love you or don’t care. It isn’t because I am mad or upset. I’m sorry I ignored your Facebook message – it does matter. It doesn’t mean you aren’t important to me. I hope you can understand that every day I am doing the best I can. It’s just that some days, pushing through is easier than others, and I am learning new ways of coping all the time. So on my bad days, please love me and be patient. I just need some time and space. Know that good days are coming, and know I love you. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Ridofranz.

How to Decide to Take Narcotics for Pain Medication

I sat there and stared at the pill in my hand. How could one little pill cause so much anxiety? I had swallowed a thousand pills, been on dozens of medications. But this pill was different. I knew that by taking this pill, I was signing a contract. I went to my husband, and started to cry. I fought so long for this option, but now that it was there, I reconsidered everything: did I really want to do this? I am what you would call an interesting patient. Mitochondrial disease, Ehlers-Danlos syndrome, and all their friends are illnesses I am far too familiar with. Chronic pain is my life — a ruthless dictator that controls my every move. Many a night I have sat up sobbing; a joint has dislocated in my sleep, or my nerves were sending fire through my body. My illnesses have taken so much — my ability to go to school, to work, to have a social life, even to do basic things, like sleep. I have tried every treatment available to find something to ease it, from physical therapy to acupuncture to meditation and biofeedback, all of which give little to no relief for me. Constant pain is unbearable. It is a nightmare you cannot ever wake up from. So I decided I wanted to try narcotic relief. I just needed some sort of reprieve, a chance to breathe. But as a chronic pain patient, I know there is no end for me. The pain will not get better with my conditions; in fact, it will only worsen for the rest of my life. Rarely does a painkiller work long term, as you build up a tolerance. Over time, the dose has to be raised until it cannot go any higher, then you try a different medication, and another, and another, and many may not work for you. If I started narcotics now, barely in my 20s, where will I be when I am 40? 60? 80? I had been on short-term narcotics for surgeries or when I had been in the ER, overwhelmed with pain. The pain relief was so wonderful, but as the medication wore off and the pain came back, it was so much worse than before. You learn to live with a certain level of pain, so when the thing that gives you relief starts to dissipate, it is like you are experiencing it for the first time all over again. I dreaded that feeling. So as I sat there with that first pill in my hand, I was filled not only with hope for some relief, but also fear. I have started narcotic treatment, and I will be honest: It has helped so much. I have had to try a number of different medications to find something that works, but it gives about 50 percent relief, and I have been able to do more than I have in 10 years. I have been able to work a very (very) part-time job, and finally get some sleep. I have to stop myself from doing too much still, because it isn’t a cure. I am still sick, I still hurt, I still experience all my other symptoms and ailments. When I push too much, I will feel awful for days. But every time I take my medication, every time I stare at that pill in my hand, my heart still stops for a moment. I am still filled with this fear. The fear of the unknown, of the future. Deciding to take narcotics is a serious decision, something that should not be taken lightly. I waited as long as I could, and I am proud of that decision. For me, it has been worth it, but every day I wish I could have managed to wait just a bit longer. Narcotics are a blessing, and a curse. I do not know where I will be when I am 40, 60 or 80, but I can only take it one day at a time. That is all any of us can do.

Ehlers-Danlos Syndrome: When Doctors Questioned My Symptoms

A few months ago, a friend of mine came across a cool project called “The Videoblogs Film.” Its purpose is to squish the taboo and negativity surrounding mental illness and to encourage people to speak up. They promoted a video contest called “ A Contest to Continue the Conversation.” So I got in touch with a few friends, and we made a short entry. We chose to discuss an issue that can be way too common for chronic illness patients, especially those with rare or invisible illnesses, which is being told it’s all “in your head.” I personally spent most of my life being told there was nothing wrong with me. Doctors pressured me to go back to school full time when I was a teen and told me I was being “dramatic.” After a while, it wore me down. It wore me down to the point that I asked myself, “Is this real? Do I really have these symptoms? Is it all actually in my head?” I was 21 before I got the answer for most of my issues: Ehlers-Danlos syndrome. I was told I was fine for 10 years when I knew I wasn’t. Other people wait much longer, and some people may never get the validation of a diagnosis. And everyone needs to know their pain and challenges are valid. Chronic illness patients, like myself, may also cope with depression and anxiety due to multiple reasons. The heartbreak of missing milestones with your peers or having to give up school or a career you love. Dealing with a body that is failing you and physical pain. The last thing you need if you’re dealing with anxiety or depression is to be told your chronic illness experience isn’t real because doctors haven’t figure it out yet. Hold on. Have faith. Keep going. What is happening to you is completely real. Keep fighting. Our video was selected as a finalist for the contest, and while we didn’t win, we still had a great opportunity to make a short three-minute film that you can watch below. We’ve been inspired to continue making these types of films to address all the various parts of chronic illness.   Lead photo source: Thinkstock Images

Losing a Father to Suicide: 10 Years Later

June 28, 2016 marked 10 years since my father’s suicide. Growing up, my dad was in and out of my life, due to his own struggles with mental health and addiction. There are many things that can be said about who my dad was and how he lived his life, but if there is one thing I am certain of it is that he always tried . Rehab after rehab, program after program, he fought his addiction, and fought to be in my and my siblings’ life. There is no doubt in my mind of the love he had for his kids and wife. The last 18 months or so before he died, he got sober and stayed sober. He took his medications, saw his counselors, and for those 18 months he was more present in my life than he had been in the seven years prior. During that time, I got to know him, not as the alcoholic who was in and out of my life, but as the man my mom fell in love with, the dad he wanted to be. I learned his sense of humor, we laughed, and we had those heartfelt talks 12-year-old girls need to have with their dads. I got to know my dad for the person he truly was, and I will always be so thankful for that time. It feels so bittersweet, knowing that time came only to be taken back as quick as it arrived, and this time, it vanished for good. My father fell off the wagon, and it was for the last time. I was 13 years old when I lost my dad. I remember every detail of what I did that day — where I was standing and what I was doing when my mom told me. They say when someone dies by suicide, the pain that person feels inside doesn’t disappear; it instead gets given to the loved ones left behind, the survivors. I have carried that pain with me for 10 years. After my father died, I could never imagine being in a place so dark that dying seemed the only way out. I couldn’t fathom being in a place where you truly felt things would never get better. I was angry he would choose to leave our family, to leave me. I thought I would never understand. Didn’t we matter enough? Wasn’t I enough to stay? I went through the “7 Stages of Grief,” peer groups, counselors, everything imaginable to help deal with the loss of my dad, and I had reached this place of acceptance. I knew it wasn’t about me; there was nothing I could’ve done, he just couldn’t cope with his addiction any longer. I felt peace for a long time. Then I fell ill. I watched the life I had built, the future I had imagined, and my health deteriorate in front of me as easy as sand slipping through my fingers. My friends, my job, my schooling, all of it just disappearing. I became disabled, and fell into a pit of depression. I have a degenerative chronic illness, and every doctor brought worse news. I could only describe it as the kind of tired sleep couldn’t fix, the feeling of truly “nothing,” just emptiness of what had once been so full. This dark place I couldn’t imagine before became a place I was so intimately familiar with. It became the place I lived, my unwanted home. My family saw the warning signs of suicide, and checked me into an inpatient facility to help with my suicidal thoughts. So I spent my 23rd birthday (April, 2016) in the hospital, trying to get to a place where I would feel better. I could write an entire other article about the things I learned during the 10 days I spent there, and I am grateful my family got me the help I so desperately needed. During a group session, a man sat across from me. He was in his late 40s and had been checked in for a suicide attempt. He opened up in group, and started speaking about his addiction and depression. He talked about his wife, his children, his job, and his struggles. For almost 30 years he had been struggling with his addiction, the addiction that had cost him everything, and he said he just couldn’t do it anymore. He couldn’t continue this roller coaster, the up and down of addiction, the struggles with his wife and kids. He just wanted to stop the pain. All he wanted was to stop the pain. I felt something click inside me. Hearing what this man experienced, watching him weep, seeing the similarities between my father and this stranger, I could for the first time truly empathize what my dad had been through. He fought his battle with his addiction, and he lost. I broke down sobbing, and felt this new piece of grief enter my heart. I spoke with my counselor that afternoon, who said we will experience grief again and again in different ways through different parts of our lives. This was just the newest stage for me. I missed my dad when I started high school at 14, starred in my first play at 15, learned to drive at 16, graduated and moved abroad at 18, started university at 20, and got married at 22. All of those times I wished he was there, just as I will wish he was there for the birth of my first child, and many other milestones in my life. I will always miss my dad, and I will always love him. It’s been 10 years, and I am still here. I am still here, and I am learning every day how to handle the loss my dad left behind. I am learning how to love the life I have and be grateful for each morning I wake up. I will never stop learning. In memory of Richard James Sheldon Rogers (February 2, 1963 – June 28, 2006) If you or someone you know needs help, visit our suicide prevention resources page. If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255 .  

Needing to Sit Down With Postural Orthostatic Tachycardia Syndrome

I have a genetic condition called Ehlers-Danlos syndrome. Like many chronic illnesses, this causes widespread pain. It also brings along its co-morbid friends, like postural orthostatic tachycardia syndrome (POTS). POTS is a disturbance in your autonomic system, causing symptoms such as: dizziness, fatigue, lightheadedness, fast heart rate, low blood pressure, nausea, anxiety, blurred vision, exercise intolerance and fainting. Heat also exacerbates my symptoms. While it mainly occurs when changing positions (laying to sitting, sitting to standing, etc.) I have found my POTS strikes whenever it likes. When I feel a POTS episode starting, my immediate reaction is to sit down so I don’t faint and fall over. I try to find a chair, a bench, or another piece of “appropriate” furniture. But, as my POTS is not considerate as to where I am at that time, I am known to randomly sit wherever I am. Middle of the kitchen floor, the shower, a parking lot, a shopping mall. I remember one time I was at the dog park. It is just a big grassy area with a walking track where dogs can wander off leash. It was an evening in the summer, still warm but not as boiling as the rest of the day had been. I was there with my little dog, letting her run around, when all of a sudden half way around — nope, I had to sit down. The park was fairly crowded that day, and I couldn’t get my heart rate to slow down. I was nauseated, dizzy and felt horrible. While my dog ran around near me, I called my boyfriend (now husband) to ask him to come get us. While I waited, two men in their 40s “lapped” me twice. The second time around they stared at me, and started to make rude comments. “What, the walk is too far?” “Enjoying sitting there? I know this is sooooo exhausting.” I was taken aback. I know I “look” like a regular, healthy girl in her mid-20s, but they had no idea what was going on. How could these two random men say these things to me? How could two grown men think that kind of behavior was OK? I was so upset at their harsh judgements. I left the park miserable and ranted to my boyfriend about how they could be so ignorant. Brittany sitting in the cereal aisle. I read stories far too often about people parking in accessible spots, but since their disability isn’t visible, they are judged unfairly — sometimes going as far as to leave nasty notes. I realize people will continue to judge those with invisible illness. We have no control over all the strangers in the world who don’t know better, but we can control how we respond to their rude stares and comments. We can control how we let them make us feel. So, I chose that day to no longer pay attention to the people who are judgmental, and when I notice them, I give them grace. They don’t know what is wrong, and no, they shouldn’t immediately jump to conclusions, but they just don’t know any better. And by giving them grace, I give myself peace. If my POTS happens to strike while I am shopping, I sit down — and if that means I am sitting down in the middle of the cereal aisle, so be it. I need to take care of me, and I am not going to let the opinions of others prevent me from doing so.

Taking Care of Spouse While Sick With a Chronic Disease

This past March, my husband fell ill. Really ill. We knew something was up, so we went to the doctor that morning, then the emergency room, and waited. And waited. And waited. Finally at almost 10 p.m. we were called back, where a doctor did an examination. They did some scans and what do you know: My husband’s appendix was a ticking time bomb. They called the surgeon, who took him into surgery within a half hour of the scan. He was nervous, so I comforted him. I called my mom who lives in town to come sit with me while we waited. I called my in-laws who live three hours away to let them know, and my father-in-law drove up so he could see him when he came out of surgery. And then, I waited some more. I have been to the ER many, many times as a chronically ill patient, usually for fluids, a bad reaction to a new medication, or sometimes even a dislocation I can’t get back in (anyone else think they should give out stamp cards? Nine visits and the 10th is free?) I’ve gone into surgery. But this was completely different. I wasn’t the one who was sick. It was my loved one. For the first time, I experienced the anxiety and frustration of not being able to do anything to make him feel better. That was usually my husband’s job. My job was too be sick. I hated being on the other end of things. All I could do was sit and wait. He came out of surgery, no complications, and was told to be on bedrest for a few weeks. He came home and felt awful, as one does after having an organ removed. He couldn’t sit up by himself, or reach the side tables by the bed. And then I saw the bigger picture, the biggest role reversal: He was sick, and I had to take care of him. I set alarms for every three hours and 45 minutes day and night so he could stay on top of his pain medication. I got him water, food and pillows and helped him take a shower — all of the things he usually did for me. And for a healthy person, that is exhausting. But for someone who is chronically ill? It is nearly impossible. My husband was patient and kind, never demanding or anything of the sort, and I could see how much he was struggling. So I pushed myself. I pushed beyond my limits, and kept pushing, until I finally broke down. I realized my husband not having any of his “spoons” didn’t magically give me more. I had the same number of spoons as before, except now I was stretching them, and borrowing all the spoons from the next day to keep up. I didn’t want to ask for help, I wanted to take care of my husband as he does for me all the time. I thought admitting I needed help meant I wasn’t a good wife. But one day I broke down crying. My whole body hurt, I was fatigued, I had negative spoons to pull from, and I just sobbed in the shower, trying to figure out how I was going to keep going for the next two to three weeks. How was I going to take care of him when I couldn’t even take care of myself? So I asked for help. I called my mom, and she came over to help with some things like preparing food that could be heated later, doing laundry and the dishes. My sister and brother also came to help at alternating times, getting my husband water or medicine or helping get his laptop up or whatever, so I could lay down and rest. So I could take care of me. I realized then that as a “spoonie,” it takes a village. You can’t do everything yourself, you are not a superhuman, and just because your loved one is ill doesn’t mean you are all of a sudden better. In fact, you will make yourself worse if you just keep pushing through. You will burn out quickly. I am so blessed I had family in town who could help me, and I am glad I reached out for help. I am thankful I realized I wasn’t alone. Never feel ashamed of asking for help, because those who love you will want to support you, and will be glad you trusted them enough to ask. The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Getting and Turning Down Job Offers While Sick

Back in September, I took a friend out to one of my favorite places for food and a drink. She was leaving for the Peace Corps soon, and it was one of our last opportunities to spend time together. We were there a few hours, each having a drink and eating some delicious food. When the time came to pay the bill, my card wouldn’t work. I was so overwhelmingly embarrassed, and kept apologizing to the waitress, who had been amazing all evening. I called my bank, who confirmed the money was in my account, and that I needed to order a new card. I felt stuck and did not know what to do. I explained this to our waitress, who wandered off to speak to another staff member. The waitress came back a few minutes later and told us the bill had been paid, we didn’t need to worry about it, thanked us for being such great patrons all evening, and wished my friend luck on her move. She was sincere and kind, and understanding that things like that do sometimes happen. She had paid the bill for us out of her own pocket without expecting a dime in return. I returned the following day and left her a note expressing my appreciation for what she had done, and the money to repay her. I spoke with the manager, telling him how amazing our waitress was, and that he was blessed to have such caring staff. I also left a resume, and expressed that I would love to work for a place that cares about their customers the way they did. Since December, I have received four calls from them, offering me a position. When they called the first time, I explained to the manager I was struggling with some health issues, and I couldn’t take the position. He told me that he would hold onto my resume and call me again next time they were looking for someone, and said he hoped I would feel well enough to accept in the future. And call me they have. They called again today, and I wanted to take the position so much. As much as I realize that waitressing would be too much, too hard for me to physically do right now or in the foreseeable future, it still breaks my heart that I have to say no. I want so badly to work, especially at a place like that. Working makes me happy. It fills my days with something to look forward to, to be excited about; it make me feel like I am doing something to contribute. And while I have mostly come to terms with the fact that I am too sick to reliably and consistently show up and be able to do what I am hired to do, while I recognize that is my reality right now, it doesn’t mean I am happy about it. Brittany working at a coffee shop. People tell me often how “lucky I am to not have to work” and “they wish they could be in their pajamas all day,” and I always say I would switch them in a heartbeat. Being sick is more than a full-time job — a job that doesn’t pay, a job that is isolating. A job with a boss who doesn’t care what else is going on, who gives you no breaks or time off. A job that is literally 24/7 and you hate, but can never quit. Those who are disabled are not this way by choice, and when I get to the point where I can’t work and have to file for SSI/SSDI, it hurts. It isn’t easy. It damages your pride, your sense of value, and your sense of self. I have not been able to work since April of 2015, but I have tried to, unsuccessfully, three times. I have interviewed and accepted jobs a half dozen times, only to call back a few hours later to say that I cannot realistically take the position, when I see how much just interviewing took out of me. I had to be told to apply for disability for over a year by my doctors and family before I swallowed my pride and applied. It felt like accepting defeat. So next time you are frustrated with your boss, your co-worker is being difficult, or you are feeling overwhelmed with work, just remember there is someone out there who is envious that you have the opportunity to work. Someone who would give anything to switch with you. The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.

When I Accepted My Disability

The day I graduated high school, I jumped on a plane to Italy. I traveled Europe working odds-and-ends jobs for two years when all of a sudden, it was back. This unknown illness had started to take over. The nausea, dizziness, migraines, flu-like symptoms and, my goodness, the pain. It had been four years since the symptoms had subsided. I had been told my fibromyalgia was in remission. But this time the symptoms were back and stronger than ever. I flew home to America to stay with my mom and sort out what was going on. After months and months and going from doctor to doctor, they finally diagnosed me with Ehlers-Danlos syndrome. Shortly after, the comorbidities were diagnosed as well: postural orthostatic tachycardia syndrome (POTS), MCAD deficiency, Chiari malformation and gastroparesis, just to name a few. Then one day at my doctor’s office, she handed me a handicapped placard for my car. I was stunned. Me? I am only 22 years old! I want to see the world! I want to finish university and do something with my life! Disabled? Me? I don’t need that! I immediately started to try and work again, only to be let go due to absences from my illness. I felt like I couldn’t work anymore — all the jobs I excelled in were gone. A few months later, my mother and I attended the Ehlers-Danlos Society Global Learning Conference in Baltimore. Flying from the far West Coast all the way to Baltimore was quite a trek, so we decided to spend a few days in Washington, D.C. and Pennsylvania. The day before the conference started, my mom and I went to one of the Smithsonian museums, and my mom insisted I use a wheelchair. It was boiling, my POTS had been bad, and I knew walking would be so hard, so I agreed. Brittany with some of the women she met at the conference. I was so angry and so resentful with myself. I felt useless, less than myself. I had to rely on someone to push me to an exhibit I wanted to see, when four years ago I was traversing Rome. I called my boyfriend that night sobbing. I had never felt like less. The following morning, we left for the conference. Pulling up, we saw cars decked out in zebra stickers and license plates, bags of huge pillows and heating pads, backpacks full of medications, protein shakes, and most importantly: people my age or younger grabbing their neck braces or walkers or wheelchairs or canes to get around. Throughout that conference, I met some of the most inspiring people, and I felt something I hadn’t felt since before I became chronically ill. I felt like I belonged. I felt like I was worth something. I felt understood. And that changed everything. After the conference, my mom and I went back into Washington, D.C. for another few museums. Only this time,  I was happy to sit in the chair. I didn’t feel trapped or codependent. I didn’t feel less than. I felt like just “me.” That day, I accepted that no matter what part of my “invisible illness” or “disability” could be seen, I was still me. And I was not alone. And neither are you. The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.