10 Things I Wish People Understood About Invisible Illnesses

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Life can be hard, but factor in living with two invisible illnesses (I have arthritis and lupus) and it can sometimes feel impossible. “Invisible” means I don’t “look” sick to others. After being chronically ill for the majority of my life, here are 10 things I wish people understood to make my life a little easier.

1. I’m more than just the “sick kid.”

Yes, I know I’m sick. But I’m also a human with feelings, skills and abilities. Granted, I might do things differently or take longer to do them, but I still do things other than being sick. Being referred to the “sick kid” eliminates all other possibility of me living to my potential.

2. If I need help with something, I’ll ask you.

Freedom and autonomy are important to everyone. If I’m struggling with a task, I’ll ask for you help. When you patronize someone, you’re diminishing his or her autonomy. Trust me, if I’m flaring and having trouble tying my shoe, I will ask you to tie it.

3. Please don’t judge me or anyone else with invisible illnesses.

You really don’t know someone’s experiences until you live them. Yes, we might look fine, but how do you know we just didn’t just come from a three-hour IV infusion of our weekly medication? It’s hard to judge an experience without actually having it yourself. Also if we tell you we’re tired, don’t suggest getting more sleep at night because sleep is the only thing I’m thinking about as a chronically ill person, and it’s just not that simple. Our nights sometimes entail a lot of pain and often watching the sunrise.

4. Let me live and learn.

This one is for all the adults and doctors. Have faith in me and trust me when I say I know my limits and what I should and should not be doing. I’m 22, and yes, I’m going to go out occasionally, but that doesn’t mean I’ll be out until 4 a.m. And if I am, I take responsibility for it and feel it the next day, trust me. We all want to avoid that extreme fatigue.

5. There are good days and bad days for people with invisible illnesses.

Some days we’re alert and productive and make the best company. Some days we’re the complete opposite. I like to call it “caught in the lupus fog.” It often has nothing to do with the activity planned or the person we have plans with. I’ve missed multiple lunches and parties because I just lacked the energy to get out of bed and socialize. Please do not take this offensively. We don’t mean it to be offensive, and we might beat ourselves up enough for the both of us.

6. Don’t worry about my future.

The future is often a big topic in conversation. We meet people and discuss college graduation, graduate school, career paths, marriage and children. Sometimes after I discuss my plans, I feel courageous enough to tell strangers my diagnosis. That’s when things change.

“How are you in college?”

“How do you plan on handling the stress of graduate school?”

“Can you have kids?”

Please don’t ask these questions. I might not have all the answers, but I’ll figure it out when the time comes.

7. Please don’t be overly sensitive or change plans for me.

My coping mechanism for being sick is humor. I’m always making fun of my illnesses or myself. I appreciate people being nice, but you don’t have to alter your plans for me or tiptoe around the topic. We can talk and laugh about it.

8. We are our own advocates.

I believe we “sick” people sometimes forget we’re actually in charge of our own lives. Between doctor visits or hospital visits, we can feel lost at times. Don’t forget we get to decide what works best for us, so if we want something done, we’re allowed to have a say.

9. I don’t want sympathy when I talk about my illnesses.

Sometimes I just need to talk. I don’t want you to feel sorry for me; instead, I want you to listen. We talk about our illnesses to spread awareness and knowledge because not all diseases look the same, and sometimes you can’t tell people are sick (hence the word “invisible”). We talk to let people know what it’s like.

10. I’m going to be OK.

Being sick is by no means easy. But personally, I wouldn’t change anything about my life. My illnesses have given me insight and amazing opportunities. I’ve met many great people and done amazing things. And I believe people with invisible illnesses are going to be OK. Days are going to be hard, but I believe we can get through them. I mean, we’re kind of like superheroes with the whole “invisible” thing, right?

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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7 Back-to-School Secrets of a Special Needs Mom

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I was always a good student and really enjoyed college and graduate school. I distinctly remember being excited for September, happily returning to campus, and eagerly beginning a new set of classes.

But when my incredible 4-year-old daughter began school, “back to school” turned into a very different experience, even under the best of circumstances (and we have been lucky to have had wonderful experiences). My daughter happens to have Williams syndrome, a rare genetic condition that creates a host of medical and learning challenges. For so many parents of children with special needs, “back to school” can be laden with secret fears, challenges and some heartache – here are some of them.

1. “Back to school” for our family actually started last April, when we began meeting with the teachers, therapists and other team members who would be supporting our child, in order to educate them about our daughter’s unique learning profile and decide what skills we needed to work on over the “summer.” Speaking of “summer,” we had a lot of fun, but we also spent a lot of time in therapy and at the hospital, catching up on appointments with my daughter’s 10 specialists. Luckily, she likes the hospital cafeteria, so we at least have some enjoyable lunch dates.

2. Back to school is hectic for everyone – I see all the tired moms at Target picking up last-minute school supplies. But in addition to all of the usual stuff, there’s a whole other layer of complexity that happens for some families. My daughter has nine individual therapists, multiple teachers and two preschools (typical and therapeutic). The logistics are maddening, let alone trying to communicate with and coordinate such a large (and terrific) team. I dream about creating pockets of time for her to lounge around or just run through the backyard, yet I also know that she really needs all of the services she receives. But the rigidity of her 8 a.m. to 5 p.m. daily schedule makes my heart ache.

3. No one really understands the stress and worry that a new school year can bring like other moms who walk the same path. The closed Facebook support groups and circles of friends many special needs moms rely on (and desperately need) are positively buzzing during back to school. If you don’t have this kind of support network, I strongly urge you to connect with other parents – it may be the most important thing you can do for yourself on this journey.

4. I think of all the amazing mamas I know who have not been able to find the right school for their children: those mamas who have fought with their school, at great length and at great expense, to keep their child fully included; the mamas who have moved halfway across the country because their school district refused to provide an appropriate education for their child; the mamas who work all day, then begin another “job” at night writing letters to their school districts, their insurance companies and their child’s teams of therapists. I believe it’s both heartbreaking and intolerable that some school districts fail our kids.

My daughter attends a warm, nurturing and enriching typical preschool where she is fully included. Almost every time I drive out of the parking lot, my eyes fill with tears of gratitude that she’s in a school that recognizes and appreciates her extraordinary gifts.

5. We have an awesome team, but there’s one special therapist who has made it her personal mission to ensure a successful transition for my daughter this year. She’s also particularly sensitive to my anxiety and has given me almost-real-time updates during the first week. There are truly no words to express my appreciation for her and the lasting impression she has made in my heart.

6. When another parent casually mentions that their child loves to play with my daughter and has been asking for a play date, my heart soars and I try hard not to weep with joy. There is no therapy, book or specialist that can automatically create the alchemy needed to develop real peer-to-peer friendships. When it happens naturally, and another child sees how amazing my daughter is, it’s like winning the lottery. Every. Single. Time.

7. Each time I watch my daughter happily skip through the door to her classroom, filled with children she just met, in a new environment that presents all kinds of challenges for her, and with teachers and therapists who are watching her every move, I marvel at how it can be possible for so much strength, courage, joy, empathy and sweetness to be contained in that petite 4-year-old body. She is a miracle, and my greatest teacher every school year, for always.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Why I Stopped Treating My Anxiety and Depression Like Enemies

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I’ve fought depression and anxiety for the past few years, although the word “fight” and “depression” don’t sound right together when you’re in the middle of it. Depression takes away your strength and motivation. It’s something that needs to be fought, but because of what it does to you, you don’t feel like you have the strength to do so.

I began to accept depression and anxiety as a part of my life. They were “my things” I carried around, trying somehow to manage life in spite of them. My thoughts were painful, full of “just can’ts”: You “just can’t” enjoy life the way people around you can. You “just can’t” think clearly. You don’t have the motivation to do things you absolutely love, and you struggle to interact with the people you care about. It’s painful to admit to yourself you don’t get to have the life you so desperately want, and you don’t have the strength to fight for it. It was a strength I wanted to have, but I just couldn’t find it.

Finally, to do something, I decided to start taking care of my body. I started eating right and exercising regularly. I fought through the days I felt like I couldn’t move. I went on walks when I didn’t have the strength to work out. I gradually built up strength to the point where I could work out every day without fighting so hard to overcome depressive thoughts. I also started giving my body the nutrients it needed so my mind was stronger and the “just can’t” grew a bit smaller. Even on days I felt like I “just couldn’t,” my body and my mind were stronger and more capable of pushing through.

My mind finally felt like it was consistently clear for the first time in years. Not only did I feel like I could do normal, everyday things without extreme anxiety or depression, I felt like I could do the big exciting things I dreamed of. I could actually make goals and not think they were absolutely impossible. Finally, my world felt bigger, my boundaries were further apart, and I felt alive — like actually alive.

UzjgZAe8ytuS45AJ9AOohMzyDCK6Vb1tNq-NZiltUutTIaH3LjuYKFbdK4xdoJQb44JeJJdOYntdnaPGtD24SfswcIw8KHA39wQ1QFvZunbvy9dHaKKoskCXOfEmy7vYfMezbkF-BoEQMee1aLhTE_KcoWLWVxd5cu0Nq276Yjehj37eH4UOlpWlWl8N_JihdfdtYa6xvHFn1BmDuMv3qo2tSXC0tLx8p There’s not a thick fog over my brain anymore, but when it does creep back in it doesn’t scare me. I better understand my body and my mind. I know what they need because I’ve actually been taking care of them. You don’t fully understand what something needs until you’ve learned how to take care of it.

I can choose to look at anxiety and depression like my enemies. I can look at them bitterly because they make my life harder. Or I can love them, because without them I wouldn’t be this strong. I wouldn’t have learned so much about myself in such a short time, and most of all, I wouldn’t appreciate feeling alive. I’m so much more excited about life and have learned to appreciate every beautiful moment. I can spend time with the people I love and feel present and capable of enjoying them. I can appreciate the little, funny things my siblings do and actually laugh. Before those pieces of joy didn’t reach my mind because they had to fight through a thick fog of anxiety and depression. Now, they fuel me.

I believe we have to learn to love the things that have hurt us and caused us pain. I can finally say to my depression, anxiety, trauma, pain and to the hurtful people in my life, “Thank you.” Thank you for making me strong. You’ve taught me so much about the value of loving and fighting for myself! In spite of the devastation and pain you’ve brought me, you have shown me the absolute beauty in the simplicity of being alive.

I don’t own you, but I love you.

This post originally appeared on her mother’s blog From the Heart.

Editor’s note: This story is based on one person’s experiences and shouldn’t be taken as professional advice.

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6 Things I Wish People Knew About Me as an Adult on the Spectrum

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I was diagnosed with autism spectrum disorder almost a year ago, and although I have experienced my life this way for 37 years, there is still so much learning for all of us to do. So here are six things to know about me as an adult with autism:

1. High-functioning autism is actually hard work.

I’m on the autism spectrum, but I’m high-functioning and an adult. So people can be less empathetic because it seems like I face less challenges. And most people tend to think I’m old enough to know how to behave so they don’t expect me to have social challenges. But I don’t always answer the phone. Sometimes it takes me too long to respond to messages because I don’t feel like talking. I do my very best at all times, but please remember I face some challenges that I can’t control and will not always meet your expectations.

2. We will almost always see things differently.

Autism makes me see the world much differently than you do. I’m beginning to learn just how different my view of the world is. I’m learning it’s OK to respect that everyone doesn’t see things the way I do, and I’m asking you to respect the fact we will almost always see things differently. No need to try to change my mind. My mind is working just fine. It’s just very different. Every coin has two different sides, but it doesn’t change the value. We may see things differently, but we can still find value in each other’s perspectives if we try.

3. My being so different can be difficult for you.

I understand I’m not always easy to figure out, but more often than not this is a direct result of my psychology, not my personality. I don’t choose to be difficult anymore than you choose to be difficult for me to understand. Autism is not a character flaw; it’s part of how I was created just like my eye color or height. It’s who I am, not just how I act.

4.  I don’t see me the way you see me.

My autism makes it difficult for me to read facial expressions. Growing up, I didn’t learn how to mirror facial expressions and emotions very well. I really only recognize smiles when attached to laughter. That means my facial expressions are often not as distinct as yours. I often don’t know what my face looks like when I am conversing with you. Please know I’m not angry with you or disinterested in what you’re saying. It really helps me to know what you see. You can help me by asking me how I feel, despite how my face looks. Don’t assume anything. Please do me the honor of being honest with me while allowing me to be myself.

5. Ambiguity=anxiety.

The world I live in is extremely black and white. I like deadlines and due dates. I like appointments. I hate being late and don’t like showing up too early. I turn lights off and close doors constantly. I love rules and color inside the lines. All of this is because I don’t do well in unplanned and unstructured environments. Spontaneity scares me. Experiencing sudden changes in plans often feels like turning off the lights in a room, making it pitch black and asking me to navigate my way out of the room. I know my lack of flexibility can drive you crazy, but ambiguity makes me anxious, and it’s usually not good for either of us. I’m working to be more flexible, and perhaps you can learn to help me by being a bit more predictable.

6. I get lonely, too.

Yes, I like to be alone, but that doesn’t mean I like to feel lonely. My need to be alone is in no way a reflection of how I feel about you or about people in general. I love people. I love to hang out with people. I do struggle with being in large groups and can’t do it for long periods of time. Social activity is like sprinting for me. I can do it, but it’s fast and furious, and I can’t do it for long periods of time. Don’t stop inviting me to your gatherings. I would love to be with you, but just know I can only give you what I am capable of handling at the time.

Lamar Hardwick the mighty.2-001

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‘Father of Suicide Prevention’ Dies on World Suicide Prevention Day

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Psychologist Norman Farberow, known as one of the founding fathers of modern suicidology and suicide prevention, died on Thursday, Sept. 10 at the age of 97, The Huffington Post reported.

His death coincided with World Suicide Prevention Day.

At a time when suicide was shamed or ignored by society and even psychologists, Farberow called it, “a long-neglected, taboo-encrusted social and personal phenomenon,” according the The Los Angeles Times.

Farberow also co-founded the groundbreaking Didi Hirsch Mental Health Services’ Los Angeles Suicide Prevention Center, and helped investigators determine Marylyn Monroe’s cause of death.

Dr. Farberow changed people’s attitudes toward suicide. He understood that people considering suicide were in terrible pain and how much compassionate listening can help people in distress,” Dr. Kita Curry, President/CEO of Didi Hirsch, said in a statement.

Read the full obituary from The LA Times here.

 

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Deputy’s Simple Act of Kindness Towards Man With Disabilities Caught on Camera

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A member of the San Bernardino County Sheriff’s Department in California was recently caught in an act of kindness.

A man named Mr. Haston was driving on Bear Valley Road last week when he noticed an officer sitting on a bench beside an elderly man in a wheelchair, according to a post on the San Bernardino County Sheriff’s Department Facebook page. Haston turned his car around to get another look at the scene and witnessed Deputy Sims paying respect to the man by just being with him and later helping him onto the bus.

“The scene led my thoughts to believe the deputy was paying honor and respect to this gentleman, almost as a friend would, perhaps just keeping him company as he waited for the bus to arrive,” Haston wrote in a letter he sent to the watch commander at the Victorville Station. “Thank you sir for the integrity of this man under your supervision. Well done! Thank you Deputy Sims for your service.”

In a world where people with disabilities are too often ignored, it was a simple but beautiful gesture.

The below letter and pictures were sent in to our watch commander at the Victorville Station, we’ll say no more and let…

Posted by San Bernardino County Sheriff’s Department on Friday, September 11, 2015

 

h/t Reddit Uplifting

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