Farah Musallam

@farah-musallam | contributor
Farah Musallam

Teaching Students With Neuromuscular Diseases: Parents' Advice

“Neuromuscular disease” is an umbrella term for several muscle-debilitating diseases that cause progressive weakness and degeneration of skeletal muscles used during voluntary movement. You may have heard of a few of these conditions — amyotrophic lateral sclerosis (ALS), Duchenne muscular dystrophy (DMD) or Charcot-Marie-Tooth disease, for example — but neuromuscular diseases remain unknown and misunderstood to the average person. It is unclear how many people are affected by neuromuscular diseases, but they do not discriminate and often affect a person’s ability to walk, talk, eat and even breathe. As we start a new school year, The Mighty teamed up with the Muscular Dystrophy Association to raise awareness about neuromuscular diseases and the challenges students and their families face when teachers and school staff do not understand their condition. We asked parents in our communities what they wish their children’s teachers understood about neuromuscular diseases this school year. Here’s what they had to say: 1. “Neuromuscular disease can affect how you concentrate because you are so tired. It can affect your handwriting to the point where you write in a messy way and can’t write for a long time at all.” 2. “I am not mean, aggressive, or rude, but I will advocate for my children, and sometimes, firmly. If my son is being bullied because he cannot run, I will fight for him. I am not your enemy, but I have to have thick armor in this world to protect my children. I know the job as a teacher is hard, but my job is hard as well. Please work with me and meet my son where his is on his journey.” 3. “My daughter wants nothing more than to blend in. See her, not just her wheelchair.” 4. “My son is wonderfully stubborn, smart and lovable. Some days are harder than others. Some days he’s super tired but can’t explain it because he’s nonverbal. He has a neuromuscular disease, but he is not the disease. What works for one student may not work for him.” 5. “It might take longer for students with muscular dystrophy (MD) or other neuromuscular diseases to get to class than others, so please bear with them on this. 6. “It’s not contagious. People [with neuromuscular diseases] are just like everyone else. They just want to be accepted and treated ‘normally.’ They may need some help physically, but they’re still real people with feelings. 7. “Have patience, compassion and seek knowledge for this disease.” 8. “We are not making excuses when our kids are too tired or anxious to attend or do their homework. You do not know our children like we do. They have anxieties we could not even fathom due to their bodies not cooperating with them.” 9. “I appreciate the concern greatly for his well being but don’t overthink his condition. It may sound harsh but a lot of people hear “disability” and think the person can’t do anything. My son is a wonderful, strong 10-year-old and he is very vocal. He would be the first to say if he can or can’t do something. These individuals including my son have been raised to be independent, and the minute you question them and withhold them from being able to make their own decisions, they feel not so independent and it also at times embarrasses them.”

Farah Musallam

How to Help a Friend With a Rare Disease

One of the most challenging aspects of living with or having a loved one with a rare disease is communicating how it impacts your life to others. After all, how do you explain something that even some doctors have never heard of? How do you make someone understand what they can’t see clearly on the outside? When it comes to balancing doctor’s appointments, and searching for diagnoses and treatments, maintaining friendships and a social life is a priority that often falls behind. So, we asked our Mighty community what they’d like their friends to know about how their lives with rare disease. Their responses show the uncertainty and isolation often felt in the rare community and the need to feel included and and understood. 1. “I miss being a social person. I don’t miss events because I want to but because I have two rare diseases that don’t have a ‘schedule.’” 2. “This is part of who I am now, but it is not who I am now.” 3. “I don’t want pity. I just want you to stick me with through the good and the bad. Please don’t abandon me.” 4. “Having a child with a rare disease (in our case, one that is fatal with no treatment or cure) isn’t easy. Unless a person has gone through something similar, it’s hard to understand how it affects the family. But, please don’t be afraid to ask us questions or offer to help!” 5. “I’m constantly worried people think I’m faking.” 6. “You don’t know someone who knows someone whose cousin’s child was just like mine and now after XYZ treatment, therapy, or herb he or she is fine. That’s just not our reality, as much as I appreciate your desire to relate.” 7. “Please don’t judge the path you don’t walk. These struggles are real. These tears of joy are real.” 8. “I would give anything for my kids to be healthy, but I love them just as they are. Sorry for missing coffee, again.” 9. “It’s OK if you don’t know what to say. It’s OK if you have questions too, but sometimes we just want to enjoy life and the cards we have been dealt. We don’t always have to talk about ‘it.’ We do enjoy everyday conversations just like everyone else.” 10. “I may seem ‘lazy’ on the outside, but on the inside, I am constantly fighting my own mind. Every day that I get out of bed is a victory for me.” 11. “My treatment is experimental. We’re just making it up as we go along.” 12. “I may always look upbeat and happy, but deep inside my head, there’s always fear and anxiety.” 13. “We are just like you but with extra precautions. My kids don’t know or quite understand they’re unique; they want to be just like other kids! I am more than happy to tell my kids’ story and answer your questions. We just want to be included and not shut out. It’s already isolating as is.” 14. “I may never ‘get better.’ I may never be cured; it may not go away. It’s a genetic disease I was born with. I might have good days; I will have bad days. I am always in pain every second of the day — that never changes.” 15. “I may not be the person I was before I was diagnosed. I may have to do things a little bit differently to accommodate how I’m feeling, but at the end of the day, my disorders will not keep me from living my life.” Are you affected by a rare disease in some way? What do you wish your friends understood about your experience? Let us know in the comments below.  

Farah Musallam

10 People With Muscular Dystrophy Explain Challenges of Finding a Job

M uscular dystrophy is a muscle debilitating disease that causes progressive weakness and degeneration of skeletal muscles used during voluntary movement. There are nine forms, and dozens of other neuromuscular diseases, including spinal muscular atrophy, ALS and related muscle-debilitating diseases. Each one of them is unique in their own way. Muscular dystrophies and related neuromuscular diseases can take away the ability to walk, talk, play and even breathe. It is unclear how many people are affected by muscular dystrophy, but it does not discriminate. According to the National Organization on Disability, 20 percent of Americans with disabilities are employed while 69 percent of people without disabilities have a job. While muscular dystrophy certainly comes with its challenges, people with MD are more than capable of working and having an impact. Yet, people living with forms of muscular dystrophy often have difficulty joining the workforce. We partnered with the Muscular Dystrophy Association to raise awareness about muscular dystrophy and the difficulty of finding work with a muscle-debilitating disease. We asked our muscular dystrophy community what they have gone through while trying to find work. Here’s what they had to say: 1. “ I was blessed to have great supervisors and co-workers who were always willing to offer assistance when I was having a bad day fighting my Hyperkalemic Periodic Paralysis. However, even with the support, it was extremely embarrassing to have a supervisor help me walk or aid me in the bathroom.” 2. “I have two BA degrees, but because I have Congenital Muscular Dystrophy, this has limited me in what kind of jobs I can apply for and be qualified for. I graduated with my second BA degree in 2013; I have applied to many jobs over the years, but hardly ever called back for a job interview. Most people do not always understand, I get frustrated and it is tough at times job searching when you have a disability.” 3. “When your disability is physically obvious, you’re automatically at a disadvantage. The second the interviewer sees you, they see your disability and they instantly start judging and making assumptions about you and what they think you can’t do.” 4. “Finding a job while having MD has become almost impossible. Especially with this job market. The need for insurance outweighs almost everything else.” 5. “My son has a BS in engineering. He graduated two years ago. He has sent many resumes out and has had some interviews over the phone. Sorry to say nothing ever comes out of them. He really wants to work and be part of something and do good. He knows the obstacles that come along with his illness. He struggles with the fear of being honest and telling potential employers about his disability. He knows they will have to know but prolonging telling them gives him hope. The hope that maybe they will see him for the person he is and what he can do and not what he can’t.” 6. “My son is 20 years old and has Duchenne Muscular Dystrophy. He uses a wheelchair full time and can’t find work. I would just like for him to have the same opportunity as others.” 7. “I have IBM and was diagnosed in 2010. I was already employed at my job for over 24 years. There were things that I could no longer continue to do like lift boxes or climb a step stool. So my supervisor bullied and harassed me. People can be mean.” 8. “I have been refused work because I am in a wheelchair. I do not doubt that for a moment but they disguise it as another viable reason, that’s just how it works.” 9. “Looking for help puts me at risk. I have stopped looking for help because the help requires me to label myself as helpless.” 10. “I have been overqualified for jobs and when I walk in with forearm crutches or roll in with my wheelchair, I never get the job. A year and a foot reconstruction later I walked in and got the job. I didn’t take it because discrimination is real  and happens every day.” What do you wish others understood about what it’s like to look for work when you have a muscle-debilitating disease? Let us know in the comments.

Farah Musallam

What You Should Know About Juvenile Arthritis (JA)

According to the Arthritis National Research Foundation, arthritis is the leading cause of disability in America. That means an estimated 50 million Americans, including about 300,000 children, deal with the pain of arthritis on a daily basis. It’s by no means an “old person’s disease.” Although the number of young people with arthritis is so high, the condition is littered with misconceptions. So we partnered with the Arthritis National Research Foundation to raise awareness about JA. We asked our communities what they wish the rest of the world understood about JA. Here’s what they had to say: 1. “It’s a battle that comes with its own set of dragons and other obstacles, and sometimes you will be down and out for a while. But that doesn’t mean you have to give up on your dreams.” – Victoria Steed 2. “I was 18 months old when I was diagnosed. It was a hard childhood, however, it made me the resilient determined powerfully positive well rounded person that I am today. JA is a horrible thing, but life doesn’t end, and don’t ever let anyone tell you that you cannot do something!” – Danielle Lindoff 3. “You don’t have to put limitations on us. We are aware of our physical limitations. We are just like you, so please don’t treat us differently.” — Carrie Folkerts 4. It’s not just achy joints; it’s doctor visits, missed school days and missed special events. Our kids still have to put up with bullying at times for having what is known as an ‘old person’s disease.’” – Gaby Baldenegro 5. “I am not my disease. I am not the medication, the canceled plans, or the wheelchair. I’m not the swollen joints or even the pain. I’m a survivor. What you don’t see is my fight to appear normal every single day. So please stop looking at my arthritis to define me.”  – Katherine Herrmann 6. “I think the hardest part as a parent is hearing him wish for ‘one day without pain.’” – Andrea Thompson 7. “Children are stronger than you think, and sometimes they are hiding some of the pain. It’s easier to hide and ignore the pain than to address it.” – Becca Duane 8. “It’s not just aches and pains! It is an autoimmune disease and can affect your skin, eyes, heart, lungs, and neck near the spinal cord.” – Courtney Smith Cooley 9. “Watching your child’s body turn on itself, and then watching them have to go through such grown up things like monthly blood draws, injections, pills and more pills, is completely heart wrenching.” – Jessica Ferguson Garcie 10. “Even though you look normal on the outside and try to keep up and do things with everyone else, you may be dying in pain on the inside.” — Linda Syrko-Shapach 11. “I was diagnosed at 18 months and I am 30 years old now. Kids, keep your head up, it gets better. Plus, your friends will love you for who you are, your disease doesn’t control you.” — Megan Vanellope Mueller 12. “I was diagnosed at 8 years old and I turned 40 this year. I want everyone to understand how amazing these kids are and how much daily life can be a struggle. These kids are some of the toughest and most resilient kids. People should take the time to get to know them and learn about their journey.” — Cat Hicks What are some things you wish others understood about living with  juvenile arthritis? Let us know in the comments.

Farah Musallam

24 Quotes That Show What It's Really Like to Live With Anxiety

Anxiety is something everyone feels every once in a while, which is why it’s easy to think it’s “no big deal” when someone has an anxiety disorder. But anxiety disorders can be daunting, and for the people who have them, they’re very real. So, we asked our readers who live with anxiety to take us into their head for a day — to describe what anxiety is really like. They’re haunting descriptions, and prove that although some anxiety is normal, it’s hard to know what it’s really like to live with an anxiety disorder unless you’ve been there. Here’s what they had to say: 1. “Anxiety keeps me awake at night; it keeps me as a prisoner in my home. Anxiety makes me feel like a failure; it has taken away my self-worth. Anxiety makes me feel uncomfortable and nervous. Anxiety has taken away friends, family, opportunities, my life.” 2. “Anxiety is like having new tabs opening very quickly [on your computer] one after another and not being able to close them or stop new ones from opening — but in your head. It happens while working, taking care of kids, driving, answering questions, and a million other things that people do in a day.” 3. “Anxiety is like an adrenaline rush without the actual roller coaster! Heart races, palms sweat, knees get weak. You have all the physical symptoms of a thrill ride but your brain has no actual event to tie the symptoms to.” 4. “It’s like you have no control; it’s feeling constantly uncomfortable in your own skin. It is isolating, lonely, and it’s soul-destroying.” 5. “My anxiety takes over my body. My breathing is irregular, my heart is racing despite minimal activity, and my muscles are tense unless I consciously relax them. My mind doesn’t shut off. I think about things that could go wrong, things that went wrong in the past, and things I have absolutely no control over. Despite having the knowledge that I cannot control everything that happens, I struggle with these consuming symptoms on a daily basis.” 6. “It’s like not realizing you’ve been holding your breath so you have to constantly remind yourself to breathe.” 7. “Anxiety takes you to a place where you’re outside of your body and cannot determine fantasy from reality. It’s debilitating, scary and downright gut-wrenching.” 8. “Picture a bunch of people loudly talking to you about everything you don’t want to hear — that’s how it feels in my head. Some days are better than others, but it feels like pure chaos on bad days, and it’s exhausting.” 9. “Anxiety feels like being the passenger of a race car driver while pleading to be let out. I close my eyes and take deep breaths at every endless turn.” 10. “My panic attacks make me feel numb and cold all over. I feel like I’m going crazy, about to die, my heart is beating too fast, and I can’t get air. I often have to get up and go outside to get fresh air.” 11. “It feels like being in fight-or-flight mode. Never being able to stop overthinking, overanalyzing, over worrying. It lets your thoughts run your life.” 12. “You feel like crying a lot because you have no control. Your life is not your own.” 13. “It feels like having absolutely no control of your emotions. Sometimes I feel like I’m watching myself work something up in my head, knowing I’m safe and fine, but not being able to control the panic creeping up my neck or the fear response. It’s horrible.” 14. “Your life is simply like a roller coaster ride. One moment it’s happy and fun, and then in a second whip around the corner, it’s instantly scary and overwhelming. It’s a 24/7 ride; the mind is always going, preparing for the worst, over analyzing things to the point where you learn to expect the worst. Anxiety consumes your life, especially when it affects someone you love dearly. Understanding it is truly difficult, but be patient. Reassuring they are loved and not alone is key!” 15. “I often thought of it as standing in a water tank. Sometimes you’re only in puddles, sometimes it’s knee level but still bearable, but there are days when the water level rises up too high and too fast and you’re struggling to stay afloat and breathe.” 16. “Anxiety is knowing however much you plan ahead, you still expect the worst to happen. Even if it doesn’t, you convince yourself it will next time; it’s a never-ending cycle.” 17. “It feels like your brain got switched from 40 mph to 140 mph and your body can’t keep up. You can’t breathe or think or run away.” 18. “Imagine being at the mall with your 3-year-old child but you turn around and they have disappeared. Imagine the level of panic you would experience. Some days every single thing feels like that. No rhyme or reason — it just does and you can’t turn it off.” 19. “It’s that battle-ready mode where you’re on high alert to literally everything around you, every worry and fear, but there’s a cage you just can’t get through. You just stand there frozen, mind racing, and your heart feels like it will explode out of your chest. In truth, it’s indescribable because everything just gets hazy and it’s hard enough just to remember where you are at times, let alone push past it. It’s the ultimate feeling of being alone.” 20. “It’s like walking through a field of land mines with one clear path, but with every step, the path changes and you have no idea when the mines will explode. Every step is uncertain; it makes you second guess everything in your life.” 21. “That split second before you trip when your breath gets caught up in your throat and you lose all control over what’s happening. That feeling right there, but it lasts sometimes for days.” 22. “I feel like I’m being drowned by waves and caught in a rip tide. I have to keep treading and swim diagonally towards the shore. You can’t get there directly.” 23. “It’s a knot in your chest that’s always there lurking waiting to creep in and put seeds of doubt and worry into every thought.” 24. “Like an out-of-control, out-of-body experience. You’re watching yourself and can’t do anything to control it.” *Answers have been edited and shortened for brevity. Editor’s note: Not everyone experiences anxiety in the same way. These answers are based on individuals’ experiences. Related: 30 Things About Anxiety Nobody Talks About