Erin Migdol

@erin-migdol | contributor
Erin is the former senior editor and chronic illness editor of The Mighty. She joined The Mighty in 2015 and previously worked at Inside Weddings magazine, Mic, and The Huffington Post. She was also the features editor at The California Aggie, UC Davis' student newspaper. She is honored to be a part of the Mighty community!
Erin Migdol

7 Things You Should Know Before Starting Radiation

Is it possible to hear the words, “You need radiation treatment” and not feel completely overwhelmed? As if hearing the words “you have cancer” isn’t scary enough, deciding to undergo radiation treatment adds an entirely new layer of uncertainty to your cancer journey. What is Radiation Treatment? Radiation is a form of cancer treatment that utilizes large amounts of high-energy particles or waves to target and kill cancer cells. Radiation kills cancer cells by damaging their DNA, making it impossible for the cells to keep dividing. Radiation therapy can be delivered two ways: externally or internally.In external beam radiation therapy, a large machine emits a beam of radiation directly at your cancer. In internal radiation therapy, radiation is delivered to your body internally. This may be with a “solid,” i.e. capsules or seeds, that are placed in your body near the tumor (brachytherapy). Or, liquid radiation may be delivered via an IV line or injection. Both external and internal radiation are considered “local” treatment, because radiation targets the cancer cells with as little effect as possible on the rest of the body.Radiation is used to treat many kinds of cancer, such as breast, thyroid, brain, cervix, and prostate cancer. Depending on the type of radiation you receive, the treatment may be delivered in one or two appointments, or you may be required to go to a treatment center several days a week for a couple of months.Chances are you didn’t know much about radiation treatment before you found out you needed it, and now that you’re faced with it, may not have an idea of what to expect. We asked our Mighty cancer community to share some “must-knows” that can help make radiation a little more bearable. Check out their advice below, and let us know in the comments if you have any additional tips and tricks to add. 1. Don’t brush it off as an ‘easy’ treatment. If you don’t have to do chemotherapy or surgery, you and your loved ones might be tempted to breathe a sigh of relief that you “only” have to do radiation. Or if you also need other treatments, you might find yourself dismissing radiation as the “easy” treatment. But it’s OK to feel sad, scared or anxious about your upcoming radiation treatments. You don’t have to downplay the challenges of radiation (and there are many!). All cancer treatments are difficult in their own way — it’s not a competition.“Don’t brush it off. I have heard people say ‘it’s just radiation.’ It’s a form of treatment and you need to self care. Rest, hydrate and slather your area that’s being radiated. I had my worst panic attack while doing this. It will suck at times but you will get through it.” — Annmarie Otis, Stupid Dumb Breast Cancer 2. Make sure you have snacks on hand. The catch-22 of cancer treatment is that you need to eat a nutritious diet full of protein, carbohydrates and healthy fats in order to give your body the energy it needs to fight and recover; however, the treatment itself can make eating unpleasant thanks to side effects like mouth sores and nausea. Talk with your doctors about which types of food you should prioritize, and be sure to have some of your favorite snacks in easy reach while you’re recovering after treatments.“I always had a full bottle of water before brain radiation, and a granola bar and almonds afterwards. I got tired as the weeks went on.” — Donna C.“Stay hydrated and eat your protein. You will be tired like never before, be kind to yourself!” — Theresa F. 3. Find an activity that lifts your spirits. It’s all too easy to spend your time between treatments ruminating on your anxieties and fears and feeling like your only identity now is “cancer patient.” But having something fun to focus on besides cancer can help distract you and also remind you of all the facets of your personality that cancer can’t take away. Find something you love to do regardless of cancer (read science fiction novels? watch your favorite sports team? listen to Broadway musicals?) and keep doing it throughout your treatment.“Each and every week before my eight chemotherapy sessions and six weeks of radiation, I chose a kickass song and danced and sang to it — capturing my ungainly efforts on video… As my hair thinned and my energy faltered, these videos kept me focused on the road ahead and also helped me show the world I was more than my diagnosis.” — Deborah V. 4. Be prepared for the side effects. Radiation therapy comes with a list of possible side effects including fatigue, hair loss, nausea, vomiting, headache, and skin changes. In addition, “late effects” such as memory loss, eye problems, sexual problems, and hearing loss may show up months after treatment has ended. Although it may be tempting to simply “think positively” and hope you don’t encounter them, you’ll feel less blindsided and more in control if you’re already well-versed on possible side effects. Talk to your doctor before treatment begins about the side effects you may experience and how to deal with them.“You [may] have more side effects than expected. I was nauseated and would vomit after treatment. Also I had an awful metallic taste in my mouth the whole time.” — Samantha M. 5. Use soothing ointments at the radiation site. External radiation can cause the skin around the target area to feel sore and painful after treatments. A healing cleanser applied to the skin helps soothe irritation and dryness. Make sure products are fragrance-free and approved by your care team before you use them.“Depending on where… load up with MooGoo!” — Kellie L.“Aquaphor is your friend!” — Theresa F. 6. Figure out the most comfortable clothes to wear to treatment. Depending on where your radiation is targeted, you may be asked to put on a hospital gown before each treatment. However, as Mighty member Jodi W. pointed out, you may be able to negotiate a specific outfit that makes you feel more comfortable and also allows your radiation technologist to access the required area. Even if you do need to change into a gown, it’s a good idea to wear loose, soft clothing that won’t irritate the radiated area after treatment to your appointments.“When I started radiation for my breast cancer, I hated being so exposed and was very depressed. For some reason, changing into a hospital gown bothered me, too. My radiation oncologist suggested I wear a tank top and not a gown. So I wore my radiation outfit of a cardigan, tank with shelf bra and yoga pants. I would get on the table, pull the tank down and when finished I would pull my tank up, put my cardigan on and leave. No having to change. For whatever reason, that helped me so much mentally.” — Jodi W. 7. Practice mindfulness to calm yourself before treatment. Sitting in a doctor’s office, waiting to be called back so you can get radiation delivered to your body? Terrifying. Starting off each appointment filled with anxiety won’t make anything easier, so consider meditating or practicing mindfulness before treatments. Mighty contributor Esther Brandon shared these instructions for centering your mind before treatments: Sitting in a chair waiting for an appointment or for treatment, I would take slow intentional breaths, moving into a seated posture with my feet firmly on the floor, my back straight, my belly soft, creating space for my breath. I would notice any sensations in my body, if my heart was beating quickly or my stomach was churning. I would notice if my mind was jumping from thought to thought. I would breathe, in and out, and would notice the feelings, sensations or thoughts settling like waves gently breaking on the shore. For more insight into radiation treatment, check out these stories by our Mighty community: Dear First-Time Radiation Friend An Open Letter to My Radiation Therapists After Breast Cancer Treatment To the Radiation Treatment for My Mom’s Cancer

Erin Migdol

How Flat Affect Can Make It Hard to Express Emotion

Medically reviewed by Johnny Williamson, MD In conversations, we expect people’s faces and voices to react in certain ways in response to their (or our) emotions. If you share exciting news with a friend, you’d expect your voice to go higher, a smile to form and your face to exhibit interest and energy as you share your news. But if you don’t exhibit these nonverbal cues, and your face and voice continued to appear neutral even if you do want to convey some enthusiasm, your friend might feel a bit confused. You don’t seem excited… but are you? This illustrates the challenge of experiencing flat affect, a symptom of mental illnesses like depression, post-traumatic stress disorder and schizophrenia, as well as brain injury and other neurological disorders. People with flat affect may speak in a monotone voice or wear the same neutral or sad facial expression even though they are experiencing other emotions. It’s little-known by people who haven’t experienced it, and can lead to misunderstandings and negative assumptions. Flat affect can be a frustrating symptom to live with and a confusing one to interpret if your loved one is experiencing it. But by talking more about this condition, hopefully, we can reduce the stigma associated with it. What Is Flat Affect? Flat affect can be a symptom of several conditions, including depression, schizophrenia, post-traumatic stress disorder, and brain injury. It can also be a side effect of medications. The term describes a lack of emotional expressiveness, particularly in the face and voice. People with flat affect still have feelings, they just don’t physically express them like a typical person. Deborah Serani, Psy.D., psychologist and author of “Sometimes I’m Sad,” told The Mighty common signs are: Very restricted facial movements Low or monotone voice Lack of physically expressive movements Poor eye contact Disinterest in others or activities Appearing aloof or detached Kathleen Kurucz told The Mighty flat affect makes it difficult for her to hold a conversation with anyone. Whether the topic is serious or not, there is no expression in her eyes and face that shows she is paying attention, even though she is. “I just can’t respond to any verbal communication. It’s in my head and gets stuck there and won’t come out like it’s supposed to! It’s very frustrating to be like that! That just throws me deeper into my depressive state,” Kuracz said. You may notice that your flat affect becomes stronger when your other symptoms worsen. For example, loved ones may even be able to recognize that you are going through a depressive episode because of your flat affect. “My husband and mother could always tell when I was entering a depressive phase when my voice became dull and my answers to questions were monosyllabic,” Janet Coburn told The Mighty. “It was an important clue.” What Causes Flat Affect? Serani explained that apathy, which is a lack of emotions and interest in life, is a common cause of flat affect. Apathy is a common symptom of schizophrenia, depression, and other neurological conditions. In addition, antidepressants, antipsychotics and other medications can cause flat affect as a side effect. Brain injuries can also interfere with how you display emotion. Drug intoxication and withdrawal are often associated with flat affect as well. We don’t know the exact process that causes flat affect, but Serani said it’s caused by dysfunction in the frontal lobes and associated pathways of the brain. The frontal lobe is involved in motivation, planning, attention, speech, personality, and reacting to feelings of others. Treating Flat Affect If your flat affect is a symptom of depression or PTSD, treating that underlying condition will likely treat the flat affect as well, Serani said. Similarly, if your medication is causing flat affect, adjusting your dosage (with the help of your doctor) may improve it. However, Serani cautioned that if flat affect is caused by a brain injury, dementia, or schizophrenia, it’s not likely to improve. Therapists can help you cope with the challenges of flat affect, perhaps even working with you to learn strategies that help you respond to others’ emotions. How to Support Someone With Flat Affect While not being able to express your emotions fully can be frustrating to live with, sometimes the bigger challenge is coping with other people’s responses to you. Friends may not realize your demeanor is a symptom of your illness, and assume you really are uninterested in them and unenthusiastic about what they’re saying. If you have someone in your life who displays the symptoms of flat affect, remember that their lack of emotional expressiveness does not mean they don’t care about you. “I wish people understood that I fully process what they say to me and that I am not uninterested nor insensitive,” Bastien Essono told The Mighty. “The lack of expression is not necessarily a lack of emotion or comprehension.” Keep in mind that even though your friend may not seem like they’re struggling, that doesn’t mean they don’t want your support. Sophie Munoz pointed out that people often think she’s being brave and strong and doubt when she needs help, simply because she’s not behaving as they think she should. “My words are more important than my facial expression and vocal tone. By ignoring my requests for help, it just makes me not want to ask for help,” Munoz said. By reading this article and educating yourself on flat affect, you’ve already taken the first step towards better supporting your loved one. In conversations, you can also help your loved one by asking questions about their feelings if you’re uncertain, Serani suggested. In addition, consider using physical touch in your communication, if your loved one is open to it. “This can be a way for you to connect more deeply if your loved one experiences difficulties with emotional expression,” Serani said. Ultimately, it’s best to simply try to be mindful of how flat affect manifests and that it’s not something your loved one can control. “Your loved one isn’t being difficult, aloof or non-responsive on purpose,” Serani said. For more on coping with mental health challenges, check out these stories from our Mighty community: The Technique That Helped My Schizoaffective Disorder Recovery How This Little-Known Symptom Impacted My Schizophrenia Recovery 15 Things You Should Know About People Who Have Concealed Depression

Erin Migdol

10 Best Shoe Brands for People With Rheumatoid Arthritis

Rheumatoid arthritis can turn everyday tasks into exhausting battles. The right pair of shoes is crucial — but can be surprisingly hard to find. Rheumatoid arthritis is an autoimmune disorder in which the body’s immune system mistakenly attacks the lining of the joints. This causes inflammation and pain in the hands, knees and/or ankles, as well as inflammation in other body parts like the eyes, heart, mouth and blood vessels. It’s common for RA to have a particularly painful effect on the feet. Jennifer Gerres, a podiatrist in Washington, D.C., told The Mighty RA can lead to the loss of the plantar fat pad (the fatty cushion of the foot) causing painful calluses on the balls of the feet. Bunions, which are bony bumps that form at the base of the big toe, and hammertoes, in which a toe bends abnormally in the middle, may also develop. These can rub against shoes and become irritated. As a result, it is critical for people with RA to find shoes that don’t exacerbate these symptoms and cause more pain. Gerres said if you have a loss of the plantar fat pad, your shoes should act as shock absorbers. If you have bunions or hammertoes, she recommended making sure your shoes are wide enough and deep enough in the toes so there are no areas that experience pressure or rubbing. Many people with RA wear orthotics, which are shoe inserts designed to give your foot more support. When buying new shoes, Gerres said it’s important to make sure your orthotics fit well in the shoes — your feet shouldn’t slip out of the shoes, and the combination of orthotics and shoes together shouldn’t be uncomfortable. Don’t wear any shoes that lead to an increase in foot cramping or fatigue, Gerres cautioned. “The shoe should be comfortable upon first wear. There should be no areas of rubbing or pressure, as this can lead to calluses or skin breakdown (and possible infection),” Gerres said. As anyone who has ever bought shoes knows, not all shoes provide the type of support and comfort that RA requires. You may not fully realize how uncomfortable your new shoes are until you’ve taken them home and worn them a few times. It can be helpful to know of some comfortable brands to seek out first when shoe shopping. One Mighty member reached out to the community to find out some of their recommendations: what are your favorite shoes? We wanted to find out even more great shoe recommendations, so we asked our Mighty RA community on Facebook to share their top brands. Discover their answers below. Gerres also said in addition to the brands listed below, she’d also suggest Vionic, Abeo, Spenco, New Balance and Altra. Share your favorite shoe brands in the comments below! Here’s what our community recommended: 1. Hoka One One “I’m on my second pair of Hoka One One tennis shoes. My Superfeet orthotic insoles fit well inside. I love how wide the footbed is and how flat the sole is.” — Jamie C. Buy the Hoka One One Akasa shoes featured above for $140 from Hoka One One. 2. Skechers “My mom bought me a pair of Skechers memory foam sole tennis shoes. They are slip ons, so I don’t have to bend over to get them on, nor do I have to try to tie laces when my fingers are swollen. I’ve used them through both hip replacements and I absolutely love them!” — Katherine H. “I’ve tried several different brands but Skechers are my favorite!” — Tina M. Buy the Skechers GoWalk Lite shoes featured above for $70 from Skechers. 3. Asics “I work in an animal hospital, so I’m on my feet all day. I wear Asics, with a pair of good rigid insoles. I have RA and plantar fasciitis.” — Heather S. “My doctor swears by ASICS and Brooks.” — Claire S. Buy the Asics GT-2000 8 shoes featured above for $120 from Asics. 4. Merrell “Merrell! I have the Merrell Moab 2, and have taken the insoles out to wear in my Converse when I don’t wear the Merrell shoe. It’s quite perfect for my flat arches.” — Kelsey M. Buy the Merrell Moab 2 shoes featured above for $100 from Merrell. 5. Nike “I wear Nike Air Force 1’s and my orthotics fit in them perfectly. I found that the sole is very cushioned and has molded to my feet. I have them laced up to the second hole and tied to be slipped on.” — Lizz M. Buy the Nike Air Force 1 ’07 shoes featured above for $90 from Nike. 6. Drew “Drew has extra-wide with layered cushioned insoles that can be removed for orthotics. I have their sneakers, dress clogs, and walking shoes.” — Melissa R. Buy the Drew Kalm boots featured above for $194 from Drew. 7. Columbia “Columbia hiking shoe Redmond V2 for women. I wasn’t planning on getting shoes when we went to the employee store where they had a sale. They were a relief for me right when I tried them on. They are shock-absorbing on any surface and they are waterproof. One always needs to try, of course. There is never a one fits all, but it’s good to get ideas.” — Anja D. Buy the Columbia Redmond V2 shoes featured above for $90 from Columbia. 8. Crocs “I have a pair of Nike Airs that help with daily tasks but I swear by Crocs. Only other shoes I’ll wear. My feet mold nicely to them and if my feet swell they still fit comfortably.” — Corinne T. Buy the Crocs Classic Clog shoes featured above for $44.99 from Crocs. 9. Birkenstock “I have to wear Birkenstocks and have their orthotic. Unable to walk without them.” — Marianne A. “I swear by my Birkenstock (original footbed)—the arch support takes the pressure off the nodules in my feet.” — Maggie R. Buy the Birkenstock Arizona shoes featured above for $140 from Birkenstock. 10. Dansko “My Dansko tennis shoes are my work shoes when I’m on my feet for long periods of time.” — Maggie R. Buy the Dansko Harlie Charcoal Metallic Suede shoes featured above for $115 from Dansko. For more insight on living with rheumatoid arthritis, check out these stories from our Mighty community: What You Need to Consider Before Disclosing an Invisible Illness to Your Employer Fighting the ‘Stoner Stigma’ as a Medical Cannabis Patient We Need to Talk About Patient Guilt in Healthcare

Community Voices
Community Voices
Erin Migdol

What to Consider Before Telling Employer About Invisible Disability

When Alexis* goes to her office and gets to work, there’s often more on her mind than just the task at hand. Thanks to her rheumatoid arthritis and peripheral neuropathy symptoms, sometimes she needs accommodations to help her be successful at her job, like time off to go to doctor’s appointments or the ability to stay home during a bad flare-up. But because her illnesses are invisible, no one at work will come to her and ask what accommodations she needs to be successful. She has to decide if, when and how to reveal her health challenges to her employer. The prospect of disclosing such personal information, without knowing if you’ll get support in return, can be scary and confusing. “[I wonder], will this keep my employer from considering me for good job opportunities,” Alexis told The Mighty. “Will someone decide I can’t do something without consulting me about it? Will people think I am just making an excuse for being absent from work when the pain is too much?” Anyone living with a chronic illness or disability has to figure out what accommodations (if any) they need from their workplace in order to do their job effectively and without compromising their health. But when your illness is invisible, and you have to choose if and how to tell your supervisor about your health needs, you may not know exactly how to approach that conversation. Going in with a plan of attack can make the whole process easier. Keep reading for some important considerations to make before starting a conversation with your workplace. Your Legal Protections Before telling anyone at work about your disability, make sure you know how your company is required, legally, to respond to your disclosure. If you live in the United States and work for an employer that has 15 or more employees, you are protected under the Americans With Disabilities Act, in addition to any state laws that may apply (which override the ADA if they provide greater rights). Under the ADA, employers must provide reasonable accommodations — in other words, changes to the way the employee does their work that allow them to perform the essential functions of their job — to employees with a disability. If you live outside the U.S., you may have specific laws that dictate the protections you are afforded at work. Be sure you understand them before disclosing your disability. Linda Batiste, principal consultant at the Job Accommodation Network, which is funded by the U.S. Department of Labor’s Office of Disability Employment Policy and provides guidance about workplace accommodations, told The Mighty that when an employee discloses a disability to their current employer, the employee must first clarify why the disclosure is being made. Some employees just want their employers to be aware of their disability, but don’t need anything at the time of the disclosure, Batiste explained. “When this happens, the employer should document the disclosure in a confidential way, but nothing else likely needs to be done,” Batiste said. However, if an employee says they disclosed because they need an accommodation, the employer should begin working with the employee to come up with an effective accommodation, Batiste said. The employer might ask the employee to fill out paperwork or request medical documentation to verify the disability and need for accommodations. In the job interview stage, the company should not require you to disclose a disability, though some employers will give you the opportunity to voluntarily disclose your disability (possibly because they have policies in place that incentivize them to hire people with disabilities). You’re not obligated to tell a potential employer about your disability in an interview, though you can if you want. Employers must also provide reasonable accommodations for the application process itself, if necessary. If you need accommodations in order to apply for the job, you should ask. If you have received a job offer and are considering whether you should tell your potential-future-boss about your disability, know that any information about a disability revealed during the post-offer stage of employment cannot be used to rescind a job offer unless the information reveals that the would-be employee could not perform the essential functions of the job with or without accommodations. Deciding Whether or Not to Disclose If every employer responded to an employee’s disability disclosure with complete and utter acceptance and a quick approval of accommodations, it’d be easier to decide whether or not you need to disclose! But as many people with invisible disabilities have discovered, employers don’t always respond in the most supportive manner. Employees are left weighing the pros and cons of disclosing: the possibility that you’ll get accommodations that will make your job easier vs. the possibility of being met with suspicion, insufficient accommodations, or your boss and coworkers changing how they treat you. Every person’s situation is unique. There’s no one-size-fits-all answer for whether or not you should disclose an invisible disability at work. It’s up to you to weigh your health needs with the requirements of your job, workplace culture, and supportiveness of your boss and human resources department. Just remember: it’s your responsibility as the employee to start the accommodation process. “ If the employee doesn’t initiate the conversation, then in most cases the employer won’t have a duty to provide an accommodation,” Batiste said. Jennifer Bell, who has worked in retail management and in public sector roles while living with chronic fatigue syndrome and migraine, told The Mighty when she is applying for a job, she worries she’ll be rejected if she discloses her disability, especially if employers see gaps in employment on her resume. Even when she’s thinking about disclosing while in an existing job, it can be scary not knowing exactly how her employer will react. However, if you have a great boss, you may have less to worry about than you think. Bell said she’s disclosed to bosses who worked with her to come up with a plan and made it clear her contribution to the company was worth the trade-offs. For her, disclosures that turned negative often occurred when she disclosed early and without knowing everyone involved. “ If you know your boss quite well and have a good existing relationship, that’s a really good basis for feeling like you can disclose,” Bell said. Liz Allen, a lawyer, public policy strategist and speaker who lives with Lyme disease and co-infections, told The Mighty while she’s had good experiences disclosing to an employer (including one that led to the ability to order lunch every day from a restaurant that offers autoimmune paleo-friendly food), she’s also had some negative experiences. She said these typically go hand-in-hand with being exhausted, in pain, unsure of what she really needs, and walking into the conversation without confidence, in addition to a boss who wasn’t open to certain accommodations. “M ostly [negative disclosure experiences] involve me crying because I’m so emotionally stressed and don’t think I deserve the accommodation, and also I don’t actually ask for what I need, but rather less than what I need,” Allen said. How to Help the Disclosure Go Smoothly So, you’ve decided you want to tell your boss about your disability. Keep these tips in mind before starting the process: Be prepared. Before starting a conversation, Batiste recommended thinking through why you’re disclosing, how much information you want to share, who you are going to disclose it to, and how you’re going to disclose. She suggested putting your request in writing, so you can control exactly how the disclosure is made and what you say. Don’t give too much detail that isn’t relevant to the workplace. “Employers just need enough information to verify that an employee has a disability and to understand why an accommodation is needed,” Batiste said. If you’re in the interview stage, use this time to interview them, and get a sense of how accommodating they might be. Consider asking what experience they have working with employees with health issues and how they’ve put plans in place to help them succeed. “ Someone who really understands this will have success stories to share or will seem like it’s something they really want to make progress on,” Bell said. If they don’t seem interested in accommodating people with disabilities, perhaps this isn’t a company you want to work for. If you can, wait to tell people about your disability until you’ve gotten to know them and they’ve gotten to know you and your work ethic. “ Not everyone is going to be understanding or supportive, especially if they assume you’re going to cause more work for them or be unreliable when they need you,” Alexis said. If you wait until you are well-acquainted with your boss and coworkers, you might be better able to anticipate how they’ll respond and what accommodations to ask for. However, don’t wait so long that your work begins to suffer. Go to your boss with an idea of the accommodations you need. “ Sit down and write a plan for yourself, come up with ideas for what would help and also what’s in it for them? Remind them of the benefits to the workplace of this plan/added flexibility,” Bell advised. “They might not adopt your plan word for word, but you can give them a really good starting point.” Be prepared for your boss to ask you follow-up questions. “I f your boss had no idea you have a disability, he or she might be surprised and might have some questions,” Batiste said. Employers are allowed to ask only relevant questions, such as medical documentation, your functional limitations, your accommodation ideas and whether other options might work. Consider telling your coworkers, too. “You will normally not be forced to disclose to your peers, but it can breed distrust if they see you getting flexibility that they aren’t,” Bell pointed out. “So have a think about how you want to have those conversations, if at all, and make sure your manager is clear on your wishes.” Document everything. Once the disclosure is finished, Alexis suggested documenting evidence of the quality of your work, as well as any conversations you have in which you feel your employer is linking your condition to a decline in your performance or to their decision to not give you opportunities, promotions, etc. You will need this documentation if you ever need to take legal action against the employer for not providing the accommodations you require. If nothing else, remember this: You deserve to work in an environment in which your disability is accommodated and supported. Allen said: You deserve to be accommodated. Believe that. Know that. Internalize that. Go in confidently. You have legal protection and you deserve to be on a level playing field with your peers. Your company wants you to do your best work, the accommodations merely help you do that. Ask. Ask. Ask. * name has been changed

Community Voices

Feeling good, this is new

I'm feeling pretty good today, and I was feeling pretty good yesterday too. I had an exam this morning that I only started studying for last night but I did really well. I was supposed to have a paper due for another class yesterday, but I emailed my professor and explained my situation about changing my meds and he gave me an extension until tomorrow night, and I'm almost done with that. I had my first appointment doing pilates based physical therapy yesterday morning and it went really well, my #ChronicPain has drastically decreased already. They were familiar with #MyofascialPainSyndrome and could see exactly what exactly was wrong. They started teaching me how to adjust my body, how to properly stand to minimize pain, etc. Today for the first time I felt like I had my pain managed pretty well. And it's amazing the effect on my mood, being in significantly less pain. I have severe #Depression with #Chronicsuicidality but I'm doing both regular therapy and DBT and I'm finally starting to change some of my self talk and how I treat myself. It's so new for me to even think about myself in positive terms, and for the first time I'm really assimilating the idea that I am going to keep living, and that I /want/ to keep living. Thoughts of suicide first appeared when I was 11/12, and I'm turning 22 this month. Idk, it's surreal. Sorry to ramble so much, just thought I'd share that I'm feeling pretty good!

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Erin Migdol

What to Know After Hidradenitis Suppurativa Diagnosis

The first time you heard the words “hidradenitis suppurativa (HS)” was likely the day you were diagnosed. It’s not a condition people tend to know about unless they live with it themselves, which means the newly-diagnosed may feel overwhelmed and confused as they’re leaving the doctor’s office. HS is an inflammatory skin condition that causes bumps and boils to develop on your skin, which then burst and leak fluid. Though there’s no need to feel ashamed of having HS, it’s common to feel some embarrassment and avoid talking about it — which is unfortunate, because talking about HS helps demystify the condition, show others with HS that they aren’t alone, and spreads accurate information that can help people live more comfortably with the condition. Because there’s no one better to hear from when you’ve just gotten a difficult diagnosis than someone who’s “been there, done that,” we asked our Mighty community to share the advice they wish they heard when they were diagnosed. In addition to finding a dermatologist who is well-educated about HS, perhaps your fellow HS warriors can help you feel more confident about managing this chronic illness. Here’s what our Mighty community told us: 1. “I wish I had been told that stress and hormones (my two biggest triggers) can be triggers instead of being told that it was just weight and smoking.” — Katie M. HS is believed to be caused by malfunctions in the immune system, which overproduce inflammatory proteins. This creates pressure in the layers of the skin, leading to the development of painful abscesses and nodules. While some factors may make a flare worse, like stress, hot climates, tight clothes, smoking, and weight, none of these factors cause HS. If you’ve just been diagnosed, it’s a good idea to start noticing if any factors seem to make your flares worse, and talk with your doctor about ways to mitigate them. 2. “Don’t worry about gauze and bandages if your HS is in an awkward area — the important thing is to contain the drainage the best you can, even if that means pantyliners in your armpits and period undies or even diapers for your groin.” — Melissa W. When abscesses and fistulas rupture, they ooze pus that, naturally, will leak onto your clothes. To keep your skin and clothes cleaner, you’ll want to keep absorbent pads, towels, etc. handy. As Melissa W. above suggested, you might not need a complicated setup with gauze and bandages — menstrual pads and incontinence products can work just as well and may be easier to carry with you and change as needed. 3. “Your best friend is a very strict hygiene routine, and learn how to sterilize the area and clean open wounds.” — Annastasia L. Abscesses and fistulas can become infected, especially once they open up, so it’s imperative that you know how to keep all your troublesome areas clean. Make sure to get some pointers from your doctor about the best ways to wash and sterilize your skin and any open wounds. 4. “I wish I had heard this: ‘Prepare yourself mentally to cope with this physical condition because you will need that mental strength more than anything else. And be prepared that this will get much worse over time.’ I believe some honesty from the doctor would have hurt at the time but prepared me in the long run.” — Donna S. We’re not going to lie: the symptoms, lack of a cure and the stigma of HS can be tough to live with. Mistakenly believing there’s a “quick fix” might lead to disappointment down the road if you’re still struggling. Don’t hesitate to seek out friends, family, support groups and even a therapist for help coping with the mental health effects of HS. 5. “You are not an exception to keep on shaving. It will only make things worse and create more tunnels. Find a new way to remove the hair.” — Gabriella B. HS typically occurs in parts of the skin that have hair follicles, so it might disrupt your typical hair-removal routine. As Gabriella pointed out, shaving can be quite irritating to your skin, and downright impossible when the area has an abscess. Waxing, laser hair removal and/or using an electric trimmer may be less irritating options; or, you could stop shaving altogether. 6. “Do not let doctors or anyone else try to tell you it isn’t HS, or convince you that it’s caused by not being clean, or being overweight (common scapegoats). Quite a few doctors are inexperienced with HS. I was once told I couldn’t have HS by a general practitioner because ‘You only get HS in the armpits. If it’s in your groin it’s an infection from not washing properly.’ It’s bullshit, and you have to be your own advocate sometimes — even if the thought of going against an authority like a doctor seems counterproductive.” — Melissa W. Although HS isn’t rare, it can take years to get diagnosed and even longer to find a physician who knows how to treat it. Many medical professionals simply aren’t educated about HS. So there may be times when you have to push back against an incorrect or outdated idea of what HS is and how it’s treated. Remember, just because one physician doesn’t understand it, that doesn’t mean you have to keep seeing them. Fight for the care you deserve. 7. “I really wish someone had told me years ago to look at food, track [what I’m eating] and see if any cause flaring. For many of us, diet is a game-changer for quality of life.” — Kristi F. It can be difficult to pinpoint specific foods that are triggering flare-ups, but if you do have any food triggers, it’s well worth the effort to figure them out. Talk with your doctor about your concerns and keep a food diary to start the process. 8. “Don’t wear underwear! It only irritates it and makes it worse!” — Megan S. Tight, restrictive clothing can irritate the areas of the skin where bumps congregate, like armpits and the groin area. There’s no shame in skipping underwear and opting for soft, breathable, flowing fabrics. 9. “Some days you just won’t be able to function with HS, and that’s OK. I mean, it’s super inconvenient, but don’t beat yourself up over something uncontrollable. Adapt the day the best you can and keep moving forward.” — Melissa W. Ultimately, there is no cure for HS and no definitive treatment that works for everybody. Some days, you may just flare for no discernible reason. That’s OK! It doesn’t mean you did something wrong. Try not to feel guilty on the bad days. 10. “I wish I would’ve been told that it wasn’t my fault it was happening to me.” — Umiaks S. There is no reason to blame yourself for your HS. Even scientists still don’t know exactly why some people develop HS. What we do know is that it has nothing to do with your hygiene habits or any lifestyle factors — none of these things could cause your immune system to malfunction. Anyone who tells you that you caused your HS, or that you alone can cure it, doesn’t understand what HS is. 11. “You are not alone and this does not define you.” — Kristi F. Living with HS can feel so isolating. You might feel like you can’t talk to anyone about what you’re going through and feel embarrassed about anyone even knowing you have HS. But there are so many others out there going through the exact same challenges. You’re not fighting this battle alone. And it’s important to remind yourself that you have so many great qualities that make you fun, interesting, and worthy of love. There’s more to you than just HS! Check out these articles for more advice and support from our Mighty community: A Letter to the Person Diagnosed With Hidradenitis Suppurativa A Day in My Life During a Hidradenitis Suppurativa Flare-Up What Medical Professionals Often Get Wrong About Hidradenitis Suppurativa

Erin Migdol

11 Things People Wish They Knew When They Were Diagnosed With RA

The moment your doctor first said the words “rheumatoid arthritis,” a million questions probably went through your head. What does this mean for my future? Will I be able to work or raise a family? Will I ever feel like I did before my symptoms began? Rheumatoid arthritis (RA) is an autoimmune disease in which the body’s immune system mistakenly attacks the joints and other parts of the body. This causes painful inflammation in the joints as well as the eyes, mouth, skin, lungs and blood. Other symptoms include fatigue, stiffness and low-grade fever. There is no cure, but there are several medication options and lifestyle habits that can help (such as diet, exercise and reducing stress). Every person with RA has a unique experience, and not even a doctor can tell you exactly what your journey will entail. But sneaking even a glimpse of what other RA warriors have experienced and learned since they were diagnosed can help you feel more prepared for the roller-coaster ride of RA. We asked our Mighty RA community to share what they wish they knew when they were diagnosed with RA — bits of knowledge that might have made their path a little less bumpy, or that would have reassured them and shown them that what they’re feeling is completely normal. Consider the following list your RA cheat sheet. If you’ve just been diagnosed, you’re now ahead of the game. 1. RA is about more than the joints. Because RA includes the word “arthritis,” many people assume the condition only targets the joints. However, RA is an autoimmune condition that causes inflammation not only in the joints, but other body systems as well, including the eyes, skin, mouth, lungs, heart, and blood. Fatigue and low-grade fever are also common. “[I wish I knew] how many other things apart from joints are affected. I really thought it just meant having a few stiff joints like you normally hear about arthritis but it’s so much more than that, it affects almost everything.” — Natalie P. 2. Young people can get RA, too. Again, because of its association with arthritis, people often dismiss kids who exhibit RA symptoms. Doctors might have told you your symptoms were just “growing pains” or misdiagnosed you with another condition. Not only is it possible to develop RA as a child or teen, but it’s also common enough that there’s a name for it: juvenile idiopathic arthritis. An estimated 300,000 kids and teens in the U.S. are affected by JIA, according to the Arthritis Foundation. “[I wish I knew] that young people could get it too. I kept being told I couldn’t have those issues because I was ‘too young for that’ and I ended up internalizing that idea. I wish someone told me illnesses don’t care whether you’re young or old, they’ll still get you.” — Nicole S. 3. Medications can dramatically affect your symptoms. Some people find that with the right medications, their symptoms are drastically reduced, giving them the ability to lead a relatively “normal” life. On the other hand, certain medications can have absolutely no effect or make you feel worse. The point is, it’s important to take medications seriously. Don’t stop taking them without a doctor’s approval, and know that if a certain medication isn’t working for you, there may be another that will work. “I wish my doctor had expressed the severity of everything and that if we found the right med combo that I had a chance to go into remission. Twice I quit the meds due to side effects and I wish a nurse or someone had called me and told me the importance of the meds and staying under a doctor’s care.” — Meredith I. 4. A less-discussed symptom of RA is fatigue, and it’s so much more than “being tired.” Many people with RA find that fatigue affects their quality of life just as much as the joint pain. Fatigue can make you feel like you’ve run a marathon even though it’s only noon and prevent you from working, spending time with friends and exercising. People who don’t live with chronic illnesses may think you’re “just tired” and will feel better after a nap, but fatigue typically isn’t resolved with a few extra hours of sleep. “Not everybody will understand about the rest days or the fatigue that strikes.” — Julie R. “[I wish I knew] that I would experience unpredictable episodes of extreme fatigue that extra rest and/or sleep will not cure.” — Genevieve M. 5. Healthy lifestyle habits aren’t a cure-all but can have a positive impact on your well-being. Lifestyle habits don’t cause RA, and changing up your eating or exercise habits won’t cure it. However, some find that eating a well-balanced, anti-inflammatory diet, quitting smoking, prioritizing sleep, reducing stress, and staying as physically active as possible helps minimize their symptoms. Talk with your doctor about strategies that make sense for your body. “Growing up I wish I had known more about implementing a healthy lifestyle (eating the right foods, staying in shape, etc.) when I was younger and it wouldn’t be as hard now.” — Montana F. 6. RA is not your fault. Let’s say it together: You did not cause your RA! In fact, scientists still don’t know exactly what causes RA, though factors like gender, age and family history can contribute. Rather than spending energy feeling guilty about what you “must have done” to “cause” your RA, it’s more productive to focus on managing the condition as best you can. “[I wish I knew] that other kids had JRA as bad as I did, and that having the disease wasn’t my fault.” — Alyson K. 7. You can have RA and not test positive on the diagnostic tests. There are a few blood tests physicians use to help diagnose RA. These tests look for the presence of antibodies that signify you have high levels of inflammation in your body. These tests include rheumatoid factor, anti-CCP, ESR and CRP. These tests, combined with your symptoms and imaging scans, contribute to an RA diagnosis. However, just because you do not test positive for RA, does not necessarily mean you don’t have it. If you still exhibit the symptoms of RA, you might have seronegative RA, which means you don’t have the antibodies that usually indicate seropositive RA. Make sure you see a rheumatologist who understands this possibility (as well as the possibility of testing positive for RA, but actually having a different autoimmune disease like Sjogren’s syndrome). “Wish I knew my bloodwork didn’t have to be positive to RA.” — Danielle F. 8. It’s not uncommon to be diagnosed with other autoimmune conditions, too. If you have one autoimmune disease, you are at risk for developing another (or two). Experts think genetics may be at least partially to blame since one gene could be linked to several different autoimmune diseases. Exposure to environmental factors could be another trigger. About 25% of people with autoimmune diseases have a tendency to develop additional autoimmune diseases, according to research. “[I wish I knew] that I could be more prone to other autoimmune diseases as well. I am at three now.” — Dani L. 9. RA medications can lower your immune system. Since RA causes your immune system to attack healthy tissues, some drugs treat RA by targeting the parts of the immune system that cause inflammation. As a result, a common side effect is a weakened immune system and greater susceptibility to illness since you’re less able to fight germs. If you’re taking medications that lower your immune system, you’ll want to take steps to avoid coming into contact with germs; for example, by frequent hand-washing and staying away from people who are sick. 10. RA is a life-changing diagnosis. If anyone suggests that RA is “no big deal” or can be “easily cured,” they must not know anyone living with RA. Far more than “just” joint pain, the condition often forces you to limit or alter activities you used to do with ease. It’s only natural to experience some anxiety and/or depression while you come to terms with your diagnosis. There’s no shame in reaching out to friends, family, therapists and/or online support groups for help. “I wish I knew my life was going to change completely. Most people don’t understand what RA really does to a person. I have found people that think and they have told me that RA is curable. It’s very frustrating trying to explain them. They think they know more than my rheumatologist.” — Janeth G. 11. A good rheumatologist is essential. No two people with RA are exactly alike, and one medication can work amazingly well for one person and have no effect on someone else. That’s why it’s important to find a rheumatologist who is willing to try different treatment options and approach your relationship as a partnership. “Settling” for the first rheumatologist you meet, even if they aren’t enthusiastic about finding the best treatment for you, could mean you miss out on helpful disease management strategies. “I wish someone would have told me that a relationship with my rheumatologist was a beneficial step in my care. Finding a rheumatologist who believes we are a team and hears me out is so important to my overall care. Knowing me as a person and not just a patient humanizes my appointments.” — Elaine W. Check out these stories for more insight on RA from our Mighty community: 10 ‘Hidden’ Symptoms of Rheumatoid Arthritis We Don’t Talk About We Need to Talk About Patient Guilt in Healthcare 8 Rheumatoid Arthritis Triggers You’re Not the Only One Experiencing

Erin Migdol

11 Things Everyone Gets Wrong About Schizophrenia

Most people have heard of schizophrenia and have a picture in their heads of what it looks like — but few people truly understand what life with schizophrenia is really like. Schizophrenia is a chronic mental illness that causes disruptions to your sense of reality (this includes symptoms like hallucinations and delusions), reduced expression of emotions and feelings of pleasure, and cognitive challenges. Schizophrenia is often sensationalized, meaning symptoms like hearing voices are emphasized while other common symptoms, like difficulty concentrating and expressing emotion, are rarely discussed. As a result, people tend to have an inaccurate idea of schizophrenia and may make assumptions that lead to misunderstandings and stigma. By talking openly about the misconceptions people have about schizophrenia, and the truth behind this misunderstood condition, hopefully we can help those in the schizophrenia community find more support and compassion, and less judgment and fear. We asked our Mighty community to share something everyone tends to get wrong about schizophrenia, and the truth they wish people knew instead. Let us know in the comments what else you wish people understood about schizophrenia, and share this article to help educate others. It’s time to bust these outdated myths. Here are the truths that our Mighty community shared with us: 1. Portrayals of schizophrenia in media aren’t always accurate. When schizophrenia is portrayed in movies or TV shows, it tends to revolve around violent imagery, psychiatric hospitals, and the overall sense that individuals with schizophrenia are dangers to society. If all you know about schizophrenia is what you see on TV, you might think hearing voices, delusions and hallucinations about wanting to hurt others or yourself are the only symptoms, and that everyone with schizophrenia experiences these symptoms in the same way. In fact, schizophrenia is associated with a wide range of symptoms, and many people with schizophrenia live typical lives. “I think there’s a general misconception that schizophrenia is like what’s portrayed on TV. Unfortunately, Hollywood’s version can fall very short in terms of depicting the vast spectrum of severity and symptoms that this illness encompasses.” — Kelly W. 2. Schizophrenia isn’t caused by “sin.” Like other mental illnesses, schizophrenia is sometimes believed to be caused by the individual’s own “bad behavior.” Of course, this is completely untrue. The exact cause of schizophrenia is unknown, but experts believe a combination of genetics, brain chemistry, and environmental factors contribute to a person developing schizophrenia. It is not a “punishment” for something specific you chose to do. “That schizophrenia is due to sin or God’s punishment… which is what my pastor thinks. That archaic way of thinking needs to disappear… the cause of the illness needs to find more public awareness.” — Nicole E. 3. People with schizophrenia aren’t inherently “dangerous.” Perhaps the biggest misconception about schizophrenia is that people living with it are scary and a danger to others. However, studies have shown that people with schizophrenia are actually more likely to be victims of violent crimes than perpetrators. “It is wrong to think people with schizophrenia are dangerous. People with schizophrenia think differently so they need a chance to be understood.” — Heidi M. “People believe that schizophrenic people are dangerous and they confuse them with psychopaths. People assume that they are going to harm them and that they are somehow controlled by evilness! Which is far from the truth.” — Ermolia P. 4. Hallucinations and voices feel very real to the person experiencing them. When someone without schizophrenia is watching or interacting with someone experiencing schizophrenia-induced hallucinations, it might seem obvious that the hallucinations aren’t real. But the hallucinations and voices do feel extremely real to them — they are really hearing and seeing things. As you would expect, this can be very scary. As Mighty contributor Josie Thorhill described: My hallucinations followed me wherever I went. I thought the world was a scary place. I thought bad people stalked me, that they were trying to kill me. I couldn’t sleep at night. I couldn’t understand how everyone else was okay all the time. I lived in a nightmare. “Schizophrenia doesn’t make someone dangerous. It doesn’t make them violent. But everything is very real! While you may not be able to see the hallucinations or hear the voices, to the schizophrenic person it is all very, very real! And can truly be terrifying! Learn about it, give a little love and compassion. Some of the best people (who are brilliant, talented, loving, inventive, kind) have schizophrenia. Trust me, you’ll learn something!” — Sabrina M. “To the person with schizophrenia it’s all real, it’s not hallucinations, it’s not being ‘crazy,’ it’s truly their reality.” — Jenn C. 5. Schizophrenia is not the same thing as dissociative identity disorder. Dissociative identity disorder (DID, formerly called multiple personality disorder) is often confused for schizophrenia, but the two conditions are distinct. In DID, the individual develops different personalities, each with their own mannerisms and backstories. A person with DID may or may not realize when they are switching between different personalities. Most people with DID have experienced trauma, which may cause them to start dissociating. With schizophrenia, the individual does not adopt different personalities. Instead, they hear voices and perhaps see other “people” who talk to them, without “taking over” the core personality. Unlike DID, schizophrenia is not caused by trauma. “People think schizophrenia is multiple personalities.” — Abby B. 6. People with schizophrenia still have feelings, just like anyone else. This should be obvious, but we’ll say it anyway: People with schizophrenia can still feel happy, sad, anxious and get their feelings hurt, just like anyone else. They still have likes and dislikes, hobbies and passions and want to live a normal life. It’s important that people see their loved ones as more than just “schizophrenia.” “Everyone thinks we’re violent people but we’re not. I wish they knew that we might be a little different than they are but we’re still people with feelings just like them who just want to be accepted.” — Roxanne B. 7. Many people with schizophrenia are unaware of their diagnosis. A common symptom of schizophrenia is an inability to understand that you have the condition. This can make it extremely difficult to accept treatment because you simply don’t believe you need it. If you’re ever confused about why a person with schizophrenia might not want to take their medication, consider how difficult it would be to follow a treatment plan if you think the doctors are trying to give you medication for an illness you don’t have. “People don’t understand that half of those with bipolar or schizophrenia suffer with anosognosia, which means they completely lack awareness of the illness. Imagine having cancer and doctors want you to do surgery — chemo but you refuse because you don’t believe you have cancer. So stop judging by saying why don’t they just take their meds or get off the street as often they are unaware of the illness. Get to know some of these people, they are some of the nicest, kindest individuals you’ll ever meet.” — John R. 8. Schizophrenia causes “positive” symptoms, symptoms those without schizophrenia usually don’t have, and “negative” symptoms, the absence of characteristics usually present in people without schizophrenia. When most people think of schizophrenia, they think of what’s known as “positive” symptoms. This includes delusions, hearing voices, hallucinations, paranoia and distorted perceptions — behaviors that aren’t present in healthy people. However, schizophrenia also includes “negative” symptoms, such as the inability to initiate plans and express emotions — a lack of behaviors typically seen in healthy people. “Schizophrenia isn’t just made up of positive symptoms, like hallucinations and delusions, but negative symptoms too such as lack of motivation and attention difficulties, which are just as hard to deal with.” — Joseph R. 9. Hallucinations themselves aren’t always scary. Based on schizophrenia portrayals in media, you might think hallucinations always consist of scary figures trying to convince you to hurt yourself or others. While many people with schizophrenia do experience terrifying hallucinations, you could also hallucinate things that aren’t inherently scary. As Mighty contributor Lukas Allen described: Sometimes the voices say good things or bad things, sometimes different voices say different things, or one voice says helpful and unhelpful things. Split them apart into good and bad, light and dark, and — most importantly — as useful and useless. “Sometimes the hallucinations aren’t bad at all and it can seem like you’re talking to a normal stranger.” — Julia C. 10. If a person with schizophrenia hears voices telling them to hurt someone, that doesn’t mean they will do it. While people with schizophrenia may hear voices encouraging them to hurt themselves or someone else, research shows they aren’t more likely to be violent than anyone else. “Even if someone has delusions where they hear someone/something telling them to harm others, it doesn’t mean they’ll act on it.” — Sam C. 11. People with schizophrenia are strong for facing their symptoms and challenges every day. It takes so much strength to keep fighting through every day with schizophrenia — especially considering the stigma and difficulties accessing support and effective treatment. If you have schizophrenia, know that you are strong for all that you cope with on a daily basis. “I wish people with schizophrenia knew how strong and inspirational they really are. I wish everybody knew the battles they face daily and the mountains of (what may be to some people) little accomplishments they achieve. The world would be a much nicer place with just that little bit of understanding.” — Kerry D. For more insight on the reality of life with schizophrenia, check out these stories from our Mighty community: How I Manage Disturbing Thoughts How Hiding My Schizophrenia Made Me Feel Worse and Increased Stigma 9 Things I’d Like You to Understand About Schizophrenia