6 Ways to Build New Support When Facing an Invisible Disability

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Battling an invisible disability, especially for an ongoing period of time, can bring about many losses, limitations and changes none of us would choose to face.

It can be even harder to bear the adjustments when friends and family don’t seem to understand what we’re going through or why the condition isn’t getting better.

Sadly, because of this lack of understanding, many relationships can be broken. Frankly, sometimes loved ones don’t really want to work at it. Watching us hurt may be too painful, or they simply don’t know what to say.

Most of us are accustomed to relying on loved ones, work and hobbies to keep us active socially. When those aspects in our lives dwindle down or disappear, we’re left with a dilapidated infrastructure.

Here are six ways to build a new foundation of support and purpose when facing an invisible illness:

1. Loved ones

Friends and family may try to be supportive by saying things they believe will encourage us to fight harder. But it can be hurtful when they say things like, “But you look good” or “Can’t you just try harder?” These kinds of statements can leave us feeling as if they have no idea how hard we are fighting and how much we want our lives back. Subsequently, loved ones may avoid us to avoid confrontation or take our saying “no” to a holiday dinner personally. Inadvertently, we become “out of sight, out of mind.” No matter what the reasons, we oftentimes feel misunderstood, abandoned and forgotten. Sometimes we have to work at keeping those not-so-perfect relationships. Other times, we need to move on and find new relationships.

2. Medical teams

For many people living with chronic illnesses, tests, doctor appointments and treatments can be a routine part of our lives. Therefore, it’s extremely important to build a great team of doctors, counselors and/or practitioners who care enough to listen and are capable of digging deeper into our case.   

3. Social support

Finding a social outlet is crucial to combating loneliness. This can be found through a community center, club, church or support group where we can meet others facing similar challenges. Of course, it can be extremely difficult for some people to get out and about. So we can find ways that work for us, such as an online support group.

4. Purpose and passion

We must remember that even without our careers or other things we have lost that gave us identity, we all have purpose and value. Therefore, we must grasp onto knowing that no matter what, our lives have meaning. To find our passion, sometimes we have to pull out an old hobby or create a new one such as artwork, crafts or writing. We can also find gratification in reaching out to others or volunteering. Even if we can’t get out of our homes to help in a local soup kitchen, we can send encouraging notes in the mail, email, social media or in an online support group. Who we are is what we enjoy, what we believe and how we love. Although how we express it can be limited, it can’t be taken away.

5. Healthy living

Many people don’t think twice about the environment around us. Yet, it’s important for us to do our best to rid our homes and bodies of unnecessary chemicals. We can also seek out a healthy diet and nutritional plan, as well as address hidden food sensitivities, allergies or vitamin deficiencies. Being intentional about watching and listening to encouraging or funny things is another helpful strategy. Hope and laughter is good for the soul and the body. These things may not cure us, but we are giving our bodies the best fighting chance for optimum health.

6. Advocacy

Get involved in a nonprofit organization that speaks to your challenges. Support their cause. Tell others about their website and resources. Participate in their special projects.

2015 Invisible Disabilities Week, sponsored by the Invisible Disabilities Association, is a great way to get involved. The world-wide campaign for people living with illness, pain and injury takes place on Oct. 18-24.

There will be a week of activities, and people can participate online. People will have the opportunity to share their stories, as well as spread awareness, education and support through photos, videos and memes. This social media campaign will be on Facebook, Twitter and Instagram. Join us and see details at www.InvisibleDisabilitiesWeek.org.

Follow this journey on SherriConnell.com.

Lead photo source: Thinkstock Images

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To Anyone Considering Working With Young People With Mental Illness

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Dear doctor, psychiatrist, occupational therapist, nurse, manager, health care assistant or soon-to-be any of the above,

So you want to work with young people with mental health problems? Or maybe you already do. Either way, welcome to the wonderful world of child and adolescent mental health services.

You’re likely to be, or have been, met by a group of young people. Some of whom will be kind and nice and some of whom who will not. Don’t rule any of them out just yet. Even the nicest, kindest and friendliest people on this ward might have days where their illness gets the best of them. Mental illness blocks the light and makes pleasantries difficult sometimes.

If you’re boasting your experience is based on the fact you’ve “survived being a teenager” — stop. Yes, we are “average teenage,” but with acute and chronic illness that — were it anywhere else in the body — might lead to hospital tubes and wires. If today we’re ignoring you, please don’t take it personally. We aren’t ignoring you; we’re trying to ignore the demons you can’t see. Some illnesses can’t be helped by tubes and wires.

You’re going to work long hours with, I won’t lie, people who sometimes wished you didn’t bother. You’re an occupational therapist pushing a new group, a psychiatrist cutting a medication or a nurse saying no to leave. You might be sworn at. You might be insulted. But we need you to keep trying. We are the ones who’ve seen it all. Collectively, we’ve had abusers, attackers, family issues, health issues — the works. Don’t expect to be told you’re doing a good job everyday, but know you’ve done a good job when one of us can go our own way. Even if you can’t “cure” us, you can help us open the box, rearrange the pieces and fill in the gaps.

We need you to keep us safe until we can do it for ourselves. One day at a time. We can be unreasonable, illogical and our illnesses can be consuming, but we need to know, even when we shout, you’ll still be back in the morning. We need you to tell us you’re trying your hardest to make it OK.

So…are you in or out?

Follow this journey on The Upside Down Chronicles.

The Mighty is asking for the following: Write a piece to a specific group or person, telling them what you wish they knew about your mental illness. If you’d like to participate, please send a blog post to mentalhealth@themighty.com. 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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When I Hear Moms of ‘Typical’ Kids Discuss Their Problems, I Remember This

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I take 10 minutes to breathe at our neighborhood Starbucks. The end-of-year fracas always seems to take me by surprise even after almost a decade of school-aged children, and I need to recharge.

Thank God for whipped cream and caffeine.

I’m seated next to two women, and their words wash over me as I unintentionally eavesdrop. There is discussion about baseball schedules, summer camps and moving on to middle school. As I listen, it’s apparent their children are typical kids for even “friend drama” is a topic, and I smile as I remember my experiences with my fifth-grade students, the make-or-break friendships that so often caused elation or despair. Everything they speak of is “normal” for most tweens, a staple of a typical child’s life.

And none of it applies to my son, Justin.

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My 12-year-old boy has severe autism. There are no organized sports for him, not because they don’t exist, but because he’s shown as much interest in sports as I do for spending a day at the DMV. Although there are local camps for him, this year they couldn’t open due to low enrollment, so my boy will have his fun in summer school.

There isn’t any friend drama because he doesn’t have friends. Trust me, we’ve given playdates a try. They’re just not his thing.

Justin won’t have the “normal trappings” of an average tween. As he moves into adulthood, he won’t drive a car or go to a prom. College is not in the cards, nor a spouse or partner. He will always be dependent on others’ care, from birth until he draws his last breath. He will never have a typical life — if such a thing even exists.

But here is what Justin does have.

An incomparable education from dedicated professionals whose greatest delights are to see him meet his goals and smile.

Parents who champion him every step of the way, eager to attack each new challenge and watch him succeed.

A little brother who considers him his best friend.

An extended family who “gets” him.

A thirst for knowledge.

Irrepressible joy most days, from the moment he wakes until the moment he snuggles into my lap at night for his story.

And it’s my last thought that stays with me as I sip longingly at my rapidly disappearing beverage. After years of insomnia, meltdowns, sensory issues, feeding issues and a general discontent with the world at large, we have come out from the darkness and into the light. My son, my severely autistic, mostly nonverbal son, is happy. On most days he is genuinely, utterly, filled with joy. A joy of his making, devoid of my narrow parameters of what constitutes a good life.

My boy is happy. It’s not everything.

But God, it helps.

Follow this journey on Autism Mommy-Therapist.

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A Little Girl Laughed Today

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Today, I saw a scene that would have stopped you in your tracks, if only you knew what preceded it. I witnessed a moment I wouldn’t have imagined in darker days for this girl. I won’t tell you how I know her story because I know her parents aren’t looking to make her famous. There were no photographs.

What matters is what happened. And what happened stole my breath. Because this girl has been picked on — badly. She has suffered enormously with triggers causing behaviors that are alienating and confusing to others. She has no friends.

But today was amazing. Today, some kids who took the time to get to know her a little – kids who have no knowledge of autism, but don’t really require it because they are innately kind and cheerful – made her laugh. And watching her laugh made them laugh and smile and laugh some more. They were three kids just cracking up laughing over something that was pretty funny in a slapstick kind of way. She laughed for a long time.

It was beautiful. Not in that “How sweet and heroic of him to take the autistic girl to the prom” kind of viral sweetness that draws you in, despite the lingering questions over what kind of romantic hopes the girl might have on Saturday morning. Not in the way that whispers, “See what a wonderful person I am? I’m kind to someone you’d never expect. But I did this amazing thing. Let’s tell everyone about it and make her one day possibly reflect on how she is so different that only one selfless person wanted her company.”

I cringe over these stories. I do think what many of these kids, celebrities and strangers have done has been well-intentioned. It’s the way we share it that’s bothering me. It’s the way we gush over it and make special needs people famous for a day — because some person did what others would have considered unthinkable. My problem isn’t the action taken. It’s the echoes left behind after we’ve marveled so publicly. The questions the girl may have about her own worth as a person — if the whole world went crazy over somebody being kind to her.

A little girl laughed today. I don’t have a video to share of it. But I can describe it for you. An autistic girl who rarely smiled and interacted with others – because of cruelty and the nature of her disability – laughed with other children today. A child who had need of friendship, shared interests, fun and laughter like every other child— but who was plagued by sensory overload and a lack of awareness and acceptance – laughed with other children. Giggled and snorted even. How I wish I could’ve recorded it – not for you nice folks, but for those who love her. They would’ve cherished it.

She laughed because some nice kids took a genuine interest in her. It wasn’t to make a point or get praise; they just think she’s interesting and wanted her company. And she thought they were worth knowing and laughing with. It’s a triumph for her. I’m the only person who saw it, and that’s perfectly OK with me. Because they know it, and she’ll remember it. She made friends. They were happy for her and for themselves. And that means she’ll likely try it again. I sure hope so. I hope she laughs a lot more in her life.

Mostly, I hope her friendship skills continue to grow and that she makes the kinds of friends who will be nurturing and a pleasure to spend time with. The kind who aren’t looking to make a public statement, but who intend to value her friendship beyond the viral tweets and shares. I hope one day nobody sees her as a surprising candidate for prom date — and instead just wave at her as they dance by. I want her to hear messages that aren’t “Yay! You’re here! We’re so surprised!” and are instead “Of course, you are here, because you’re one of us, and it’s where you belong.”

These are my hopes for her. And my hopes for my own child. The circumstances and events may change, but I hope for the same thing for all the kids not yet on the playground.

A little girl laughed today — and took a few steps closer to those in her world. Every day, I pray that others will meet her halfway — only without looking over their shoulders for the camera.

Because I don’t ever want her to see that camera and wonder why it’s there.

Follow this journey on Flappiness Is… 

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4 Unexpected Lessons I’ve Learned About Mental Illness Recovery

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The first time I saw a psychologist was nearly a decade ago. I was just 14 years old, trapped under the fist of a heavy and unexpected depressive episode.

After bouncing around the mental health system for all of these years, I’m grateful to say I emerged on the other side feeling whole, happy and fulfilled – all things I never imagined were possible given the hand I was dealt.

We have plenty of narratives about struggling with mental health, and while those are crucial stories to share, I think it’s also important to have conversations (often!) about recovery.

Because for many of us, we don’t know what to expect, what our recovery might look like and how we can move forward with our lives.

So in the spirit of shedding some light on this topic, I want to share some of the lessons I’ve learned throughout the process. Here are four lessons (of many) mental illness recovery has taught me:

1. Honor your own pace. 

Mental illness can make a person impatient. This shouldn’t be surprising – for many of us, our episodes have persisted for months, even years, and at the first sign of light we’re eager to reclaim our lives and finally begin living.

This can often lead to us feeling more overwhelmed, intimidated and downright exhausted. Ugh!

This is where the phrase “walk, don’t run” is critical. Because while it would be fantastic to address all of the neglected aspects of our lives after trauma – wilting relationships, weak finances, failing grades, returning to work – recovery doesn’t care about your ambitions. It only concerns itself with your ability at any given time.

And while you may have the urge to hit the ground running, the best you may be able to do is sit up. That’s OK! Mental illness can be traumatic and trauma takes time to heal.

Be mindful of the pace you’re setting for recovery. Are you pushing too hard? Are you punishing yourself for not reaching impossible goals? Are you setting yourself up for failure?

Keep realistic expectations and be kind to yourself as you navigate the initial recovery steps. You don’t need to take on the world right now. It’s true this stuff takes a lot of patience, but giving yourself the time and space you need can help make your recovery a more sustainable one. Trust me.

2. There is no such thing as “square one.”

This scenario might sound familiar to you. A lot of us, when we find ourselves struggling again after a period of relative stability, lament being “back at square one” and beat ourselves up about it.

I vote we eliminate that phrase from our vocabulary effective immediately.

What the hell is square one? I don’t think it really exists. Because even if we find ourselves “relapsing” – whether it’s having suicidal thoughts after years of not considering it, or having a huge panic attack after effectively coping with anxiety for some time – that doesn’t negate the amount of work we’ve put into our recovery.

I used to beat myself up every time bipolar disorder or anxiety made a “guest appearance” in my life after being booted off the cast. This is problematic on a few fronts. First, it suggests I’m somehow at fault. And two, it dismisses all the self-care, therapy and emotional investment I’ve put into my healing. It basically says, “I’m an identical copy of the person I was years ago.” Not true.

No panic attack or depressive episode can take away all the skills, reflections, epiphanies, support systems and tools we’ve gained in our recovery. There can be setbacks, to be sure, but it’s impossible to be exactly where you started.

As a famous fish once said, “Just keep swimming.

3. You’re allowed to be angry.

When I reflect on the amount of time bipolar disorder and anxiety have robbed me of – years of fighting just to stay alive – I feel a kind of rage and grief I can’t say I’ve ever felt about anything else. The sheer injustice of it makes me angry. To this day, despite mental illness having a very diminished impact on my life, I still have to take a moment from time to time to let myself feel that rage.

Give yourself the space to feel angry. 

You don’t have to pretend you’re some kind of reformed, respectable survivor. We’ve created this false dichotomy – you’re either a survivor, who has overcome mental illness and you’re an inspiration to all, or you’re a victim, wallowing in your own suffering with no intention of moving past it.

Trauma is real. And we all need to give ourselves permission to grieve. We need to give ourselves permission to acknowledge our own pain, and yes, to even sit in it, wallow in it and acquaint ourselves with it. Anger can be part of healing, but not if we suppress it.

4. Recovery, in some ways, can be harder than any episode you’ll ever have.

Depression, while it gutted my soul completely, in many ways felt safe to me. I knew what the rules were. I often knew what to expect. It was consistent, reliable even. Everything was easier without hope because there was never disappointment, never unpredictability, never ups and downs.

I was surprised by how much more difficult, in some ways, recovery really was. Physically, because the medications I was trying came with a host of side effects, and emotionally, because just when I thought I was making progress, I came crashing back down.

And intrinsically, too, recovery was hard because so much of who I was depended on my episodes. When I was stripped of that, I came to realize I didn’t know myself as well as I’d thought. So much of what I came to associate with “me” was actually depression or mania talking. When I was no longer in the midst of it, I had to start over and evaluate the very core of who I was.

When the noise quieted down, I felt like a stranger to myself.

The predictability of sickness – the flat line we never depart from – in many ways allowed me to revert to auto-pilot. That ultimately meant not dealing with the unknowable and unpredictable aspects of life. Sometimes it’s actually harder when you’re healthy enough to feel a full spectrum of emotions, but not yet equipped with the tools to cope.

The emotional labor that goes into recovery is very different from the upkeep that goes into survival when you’re dealing with a mental health crisis. It creates its own challenges – many of which we’re unprepared for.

But I consider these challenges to be growing pains. These are muscles that, after being out of use, will be stronger with time. The best advice I can give? Take it day by day, keeping in mind any major life change – good or bad – can still be disruptive and difficult in its own ways.

Recovery is a bit of a misnomer – because while mental illness is treatable, for better or for worse, it doesn’t just disappear.

Really, I think of it more like rehabilitation after an injury; we have to learn and relearn skills to help us get back on our feet. We aren’t trying to pretend the trauma didn’t happen – we’re trying to become more adaptable in the face of that trauma.

It starts slow, with small victories and of course, the setbacks, too. But with persistence, we can build a better foundation that allows us to become more resilient in the face of our struggles.

I believe as we share our stories – not just those of hard times but of healing, too – we can ensure those who are on this journey will never feel alone, no matter where in that journey they are.

Related: 23 Messages for Hope For Those Starting Their Mental Illness Recovery Journey

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Great News for NFL Fans on the Autism Spectrum

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The Seattle Seahawks have partnered with a pair of autism moms from Tulsa, Oklahoma, to offer their fans with autism a better experience at games.

Michelle Wilkerson and Jennifer Sollars Miller started a nonprofit program called “I’m A-OK,” which offers free game-day kits to fans who are on the autism spectrum. The kits include noise canceling headphones, ear plugs, sensory toys, a detailed schedule to help keep track of the game and an “I’M A-OK” identifier badge, according to the Seahawks website.

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Wilkerson and Miller want to make it easier for people with autism to participate in sporting events and other loud public activities.

They have to learn the skills,” Miller told NBC. “They’re not going to learn unless they’re actually in the environment.”

Wilkerson and Miller contacted the Seahawks back in July; the Oct. 18 game against the Panthers marked their first partnership with an NFL team. They hope to expand and work with many other teams in the future.

We realized there were a few simple things we could do that would make a positive impact for Seahawks fans on the spectrum,” said David Young, VP of Stadium Operations, according to the Seahawks website. “The toolkits are just the first step.”

Get more on the story from the video below: 

 

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