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10 Things to Remember When It Seems Like Things Won’t Get Better

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We can get to this point in life where we don’t think we will ever come out of the darkness. The light is so far away that we can’t even see it, and it seems our flares and bad days will never end.

Whether it’s depressionanxiety, migraines, fibromyalgia or anything else you may have, here are ten things to remember when you think things will never get better.

1. Life is a cycle.

It’s a continuously shifting balance of up and down. If it’s down season right now, ride it out. The seasons will change again.

2. If you need help or if you’re a danger to yourself or others, go to the hospital — now.

It may seem like the worst place in the world, but the goal of hospitalization is to get stable in the least amount of time as possible.

3. Try mental health therapy, no matter what your diagnosis is.

We know our family and friends may be tired of hearing us complain, but we can’t keep it all in either. Find a therapist you connect with and share whatever you want. Therapy is a safe place with no judgment, and it’s all confidential. The National Alliance on Mental Illness (NAMI) even has a Crisis Text Line so you can be connected with a crisis counselor.

4. Ask for help. Don’t be stubborn.

I know we’re warriors and don’t want to ask for help, but when we’re hurting, we need help. Sometimes we don’t need help, and sometimes we need a lot of help. Don’t force yourself to go downstairs to get the water if you only end up falling down the stairs. Trust me, that only makes it worse.

5. You are not a burden.

Let me repeat that because so many of us feel that way: You are not a burden. You are a wonderful, loved, cherished person.

6. Listen to your body. 

Your body sends you signals for a reason. Pay attention to them. If all you want to do is sleep, then sleep. Sleep is restorative and healing. If you need medication, then take medication. It’s not weak. It’s taking care of ourselves.

7. Find people who understand.

Many of us aren’t able to leave our homes easily, and therefore, we might have to go online to meet some new people. Conduct some Facebook searches and find a good support group for your condition or read articles or find forums. That always helps me.

8. Share your story.

It externalizes it from yourself. You can do this by writing a journal, talking to people and starting a blog. Take your story and use it to do some good.

9. Don’t apologize.

This is not your fault. These things are out of your control, and it’s a disease, a disability or a sickness. You have no reason to apologize. (I’m still working on this one, too.)

10. Never give up.

Find something to hold on to. A pet that needs you take care of it, a family member to lean on and all the people in your corner. Music is also great. Find some empowering tunes that you can sing along to. Find music you love and put on some headphones. Jam out. If you can drive, roll the windows down. Drive on a road where there’s not a lot of congestion and you’re surrounded by nature. Turn the music up, drive and sing your worries away.  

You can do this. You will do this. It will get better. All progress, no matter how small, is progress. I’ve been down and out enough, whether manic or bottom of the pits of depressed, suffering from extreme panic attacks or all of my chronic conditions are flaring at once, and I can’t see my way out of it. But my love repeats these words to me: “It’s just down season. It will get better.” And it’s true.

You are important. You are loved. You are the world to someone. You are worth not giving up on, and it will get better.

Follow this journey on Living Without Limits.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255. You can reach the Crisis Text Line by texting “START” to 741-741.

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Why Thalessemia Is My Worst Enemy and Best Friend

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Dear beta thalassemia major,

You thought you stole my life when I was 6 months old. You must have been so happy when I was diagnosed as a baby, thinking you could control me from here on out. But I have a question for you. Why me? Why did you, a genetic condition, choose me, when you chose no one else in my family? This question has haunted me for the past 20 years. You have made my life so much harder than it has to be. Why?

Because of you I always felt different and left out of groups. Because of you, I’ve been bullied and made fun of. Because of you, there are some days I just don’t want to get out of bed, since you have left me so physically and emotionally drained. Because of you, I am afraid of what the future holds. Because of you, I wake up in pain everyday, not knowing what surprise you may bring me today. Because of you, I hated myself and have been so ashamed of who I am. I never told anyone outside of my immediate family about you — about the medications, medical tests, doctor’s appointments, treatments, hospital visits and all the other gifts you’ve given me over the past 20 years.

Some days, I just want to end it. End the pain and the misery once and for all. Some days, I don’t see a point in continuing on if you’re always going to be looming over me.

But you know what, thalassemia? I refuse to let you win. I know you’re not going anywhere anytime soon. I know you will always be a part of me, but I refuse to let you define me. Whether you realize it or not, even with all the bad you have brought me, you’ve also given me some pretty good things.

Because of you, I have been given a unique perspective on life. Because of you, I know who my real friends are. Because of you, I have a support team behind me. Because of you, I have always pushed myself to be the best I can be. Because of you, I am able to find happiness in the simple things in life. Because of you, I have now found my voice, and I am going to use it to tell others about you and about our story.

Ever since we met, you’ve been my worst enemy, but also my best friend. You’ve taken me on a rollercoaster ride for the past 20 years. I know our journey together is not over yet, and I know you will drive me through countless other potholes. But know that I will never ever give up.

I can honestly say I would not be the person I am today without you. Some people may find our relationship strange, but I wouldn’t change it for the world. Thank you for being a blessing in disguise. Thank for providing me with a support team of nurses and doctors that feel like home. Thank you for giving me family of “thal pals.” Thank you for making me the person I am today.

Love,

Yasmeen

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To My Child's Mainstream Classroom Teacher, From a Special Needs Mom

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Two weeks ago I was invited to do a short presentation to a hall full of educators about my experience as a parent moving from a special needs school to a mainstream school. This got me thinking of just how anxious changing schools can be. But what overwhelmed me even more was the fact that entering the mainstream school meant that I would have to go over the same things every year as we move to the next grade and a new teacher and new classroom dynamics!

So, I thought, after my presentation, to write this blog for referral, for any teachers who may be welcoming a child with special needs into their classroom. This letter is specific to my experience, and with it being our second year in mainstream, I can assure you I felt as anxious and overwhelmed this year as I did the first year my son Kai joined the mainstream school!

Dear mainstream classroom teacher,

I left this cocoon where all our needs were coordinated. A cocoon where I was trained in the complex art of developing parental skills to help my child thrive.

A class of six to eight children, speech, OT and audiology. An observation room where I could sit, watch, and learn more about my son as he participated in classroom discussions and interacted with his peers. An observation room where I could learn from the manner in which his teacher helped him develop his auditory and language skills. Weekly learner plan and goals we received every Friday, giving us time over the weekend to familiarize ourselves with the lesson sketch for the week ahead.

Then the news: my child is ready for mainstream school.

Imagine the anxiety of boldly stepping out into the big wide world, the uncertainty of whether my child would cope in a classroom of 30, the acoustics, accommodations and additional support. How inclusive is inclusive?

My role suddenly changed from being the “student” to becoming the “team leader.”

  • Where do I begin?
  • How do I duplicate this team approach outside of this special needs school?
  • Will you, his teacher, be approachable?
  • Will you be prepared to check that the hearing aids are working?
  • How will the school acoustics impact the listening environment?
  • Will my child be made to feel “different”?
  • How do I maintain a balance between homework, ongoing OT and speech sessions, and weekly language goals?
  • How do I incorporate it all?
  • How do I help my child to develop self-advocacy skills without drawing unnecessary attention to him?
  • Can I cope without overwhelming myself or my son?
  • Most importantly, how do I encourage a team approach?
  • Will the new therapists understand our situation and our goals, and be on board to work as an interdependent team?
  • How do I facilitate a smooth transition?
  • How do I minimize listening fatigue and people overload?

Feeling overwhelmed would be an epic understatement!

Suddenly I need to lead and coordinate my own team — a team of professionals, each based at their own private practices outside the school environment. It feels to me like climbing Mount Everest without a guide. I find my way and hope and pray you will be prepared to hold our hands and travel this new journey with us — a journey with many detours along the way as we re-evaluate what works and what doesn’t.

I am anxious and fragile when we enter the mainstream school. Not only do I need to develop and maintain relationships with you, but I also need to maintain and develop relationships with new team members (speech/OT/audiology) and keep everyone informed. Then, just as we become accustomed to it all, the process of adapting starts all over again when we are introduced to our new teacher for the new school year.

I do not expect of you to be my son’s only educator. Our home should be an extension of your classroom, so please provide me with weekly objectives and goals.

While you may be worried about his reading level, I’ve been spending the past six months helping him to remember the phonetics of the alphabet. Learning what each letter sounds like, and mastering the ch, th and sh sounds.

While you may be worried about his inability to count in threes and fours, I’ve spent the last four months focusing on teaching him the meaning of difference and equal in the language of math… all this with the help of our speech and language therapist.

While you may be concerned about the fact that he may be “trying too hard” in class, know that it takes effort to listen, process, retain and do… all this while the space around him may be annoying him. Know that sometimes he experiences meltdowns and overload after school.

Mainstream classroom teacher, I thought I’d share this letter with you because there is so much more that goes into educating and developing my child than the five hours he spends with you at school.

I want you to know that I do not expect you to facilitate a one-on-one teaching approach. I appreciate that the other 29 students are equally entitled to as much support as my child.

All I ask is that you understand his special needs in the classroom and be open to his communication tools. From time to time, I may request a meeting with you to provide some feedback or to discuss his progress or challenges in the classroom or at home.

I ask for your compassion and support. Please understand that you are my mainstream guide, my person on the inside.

Most importantly, do not lower your expectations for my child. He is very capable. Do not see his challenges with sensory processing and hearing as a limitation on his ability. See it as an opportunity to embrace difference, an opportunity to learn something new, an opportunity to develop a diversely different approach to educating a child, an approach, that in the end, will benefit the other 29 peers in his class.

Dearest mainstream classroom teacher, welcome to our team! Together we learn, together we grow.

Thank you!

Follow this journey on Chev’s Life.

Image via Thinkstock Images

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When You Get Misdiagnosed Because You Have a Rare Disease

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During the second major hospitalization I had after becoming sick, the local adult cardiologist and my primary care doctor came in my room around 10 p.m.  They looked very serious and announced I had pulmonary hypertension. They talked about transferring me to a better-equipped hospital, and about doing a bunch of other things. Eventually, they decided to let me stay at the local hospital and talk to me in the morning.

That night, as I laid in bed thinking about all those serious faces, how my mom had been so concerned when she said goodbye… I didn’t really get it. So I Googled “pulmonary hypertension.”

And as I read it, I started to cry.

I cried and I cried in my bed, reading how pulmonary hypertension could lead to death and I might slowly die of lack of oxygen.

Eventually one of my nurses came in for rounds. She saw that I was crying and I told her what I had discovered about pulmonary hypertension. She stroked my hair and let me cry. She told me everything would work out one way or another. I cried and cried, thinking I was dying all night. The next morning the adult cardiologist came into my room, and he told me that he was wrong about me having pulmonary hypertension. He had spoken with the head of the adult congenital heart clinic and that with my anatomically backward heart, this was actually a normal echocardiogram for me and that I wasn’t dying.

I had an adult cardiologist read the echo, and the adult cardiologist came to a conclusion anyone would, anyone with any other heart patient besides me —pulmonary hypertension.

But me, being the unicorn that I am, don’t work that way. I have a rare heart defect called congenitally corrected transposition of the great arteries (CCTGA). It is a heart condition I was born with. Basically, my right ventricle and left ventricle are inverted, but my heart kind of made up for it and corrected itself by reversing my valves too. This was when I was new to my illness, when I would still Google everything the doctors told me I had (or apparently what they thought I had).

So let me stop you right there. Here’s my advice:

Try not to Google a medical condition before you are sure of your diagnosis, or if you are having random symptoms.

Google will most likely convince you that it’s not a sinus infection, it’s cancer. It’s not a headache, it’s a brain tumor. Google leads to many a spilled tear, many a self-diagnosis. Googling what the doctors said I had led me to cry myself to sleep, have a panic attack and start planning my own funeral in my head.

Google is not a replacement for a real doctor.

Doctors are doctors for a reason. They go through a lot of school and a lot of training. They can tell things by feeling your body, looking at you, watching you walk, or close your eyes and touch your nose, and by things you don’t even think matter. I had a doctor do a physical exam on me, tell me what was wrong before any imaging, and it turned out he was right. When my adult cardiologist came in the room and told me I had pulmonary hypertension, he was right. That’s what the test showed. Any other adult cardiologist with no training in pediatric cardiology and congenital defects would have thought the same thing. They had to bring in the expert to understand what was going on with me.

Looking back on the whole experience, I realize I was crying over a disease I didn’t have, a misread test result. But to me, when I was experiencing it that night, it was real. I was dying. I was out of time. But doctors make mistakes.  Medicine sometimes is a “best guess” scenario. We have come so far, but there is still so much we don’t know. Doctors go based on the information they have at the time, and they will never say something off-hand because of malpractice issues. If you have a concerning symptom, go to the doctor, Not Dr. Google.

Keep going, until they figure out what is wrong.

This incident was two years ago. Since then, I’ve been working my way through different specialists and doctors, still trying to come up with the right treatment plan and best medical care for me.

It takes time. It takes patience. It takes courage.

And of course, self-discipline, so you don’t start Googling everything again.

Follow this journey on Living Without Limits.

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The One Thing I Ask From Friends as a Special Needs Parent

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Our family has moved a few times in a short amount of time since the start of our special needs journey. Among the stress of finding new doctors, therapists, good schools, a new home and church is finding new friends. Good friends. Friends that just get it. 

You never really realize just how much your “before the journey” friends got it. They were there through the pregnancy, the NICU, through surgery after surgery and after hospital stays and doctor’s appointments. They’re the friends who don’t need a phone call, text or a play date to keep the friendship going. 

We now live in a new community far away from our “before friendsand feel the hole that is camaraderie, friendship and support. Making friends, without others seeing our journey, can be a challenge. However, I’m becoming more aware of what makes it so challenging is my distance. 

My mind is always elsewhere. 

I need to talk to physical therapist on Monday about his foot. I wonder if he needs new braces? Should we talk to his orthotist? I wonder when his next opening will be available. 

I don’t think the pediatrician is taking this seriously. I wonder if we should get a specialist? Which hospital should we go to? I’ll have to see if they have Friday appointments. 

What time is it? If I leave now, then I can look at his labs, call the doctor, make lunch, throw a load of laundry in, then get back and pick him up from school.

What is up with his levels? What does that mean? Does she really think it’s just constipation? Should I insist on getting an MRI? Am I being paranoid? Probably! How can I not be paranoid?

He should probably get a haircut soon! Man, he will not like that. Maybe I should bring a sucker? Or his bear? But then he’ll get hair all over it.

I’m rarely present. Even when I choose to be, even when I yearn to be. It’s difficult to be in the here and now with those I’m with. How do you build a friendship from that? My “before friends” understand; they give loads of grace without explanation or apology. And I also have comfort knowing that my mind can be elsewhere without the stress of trying not to be when I’m with them.

I try to be aware of my presence. I believe I can come across as distant and unwelcoming, and it’s completely unintentional. My mind is just always elsewhere. I make a list on my phone for all the to-do’s to help organize the chaos. But all the what-ifs and should-haves consume my mind.

So I say to all my future friends, please, please give us grace. Please look past our distant eyes and our late replies and cancelled play dates and see we desperately need a friend. Please see the inner turmoil as a potential for the unconditional love we give to those around us. Please see our family dedication as potential for dedication to our friendship.

Our world is a never-ending conversation in our head, and it can be truly annoying to be honest! But it’s our reality, and we just live it because it’s the best we know how. So please dear future friend, please give me grace, and I’ll give you a friendship like no other.

Lead photo source: Thinkstock Images

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The Darker Side of Chronic Pain We Don't Often Talk About

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September is chronic pain awareness month. Since everyone has had experience with pain in some way or another, I’m going to raise awareness about the lesser-know, darker side of chronic pain. What’s darker than being in agony 24/7? Mental illness.

I’m extremely open about my rare, chronic pain illnesses, multiple hereditary extostoses (MHE) and fibromyalgia, but the mental aspects and symptoms I have has always been something I kept close to my heart. All of the articles I’ve read by writers who also grew up with MHE, echo the same experience I had growing up.

I can’t always remember details much anymore, but one thing I can always remember is feeling alone. And when young, I was. Don’t get me wrong, my parents and my brother always supported me from day one. But besides them, there was no one else down here, and truthfully there were days where I felt like an alien compared to everyone, that this feeling even spilled over into including my family. I always just believed having tumors meant there was something just “wrong” with me, a mindset consistently reinforced by the constant torment until the most disfiguring tumors were removed before freshman year. Then, only the occasional “ew” if someone happened to pay enough attention to me for more than five seconds.

By the time I was in middle school I had such severe social anxiety that it was hard to talk to anyone. Group projects my worst nightmare. That “popcorn” reading game had me on the edge of my seat the entire class period. I always knew the answer but dreaded being called on, and having a cough almost always induced panic attacks at just the thought of having a coughing fit in class and people look at me. I fell in a deeper depression the summer before my freshman year, when the one friend I had stopped associating with me after seeing me in a wheelchair when I got home from my first tumor removal surgery. As a result of my low self-worth, I developed a pattern of falling into emotionally abusive relationships in high school, deepening my depression more and more each time (a pattern I finally broke this year).

I had what they call “high-functioning” depression. I graduated from high school with a 4.47 GPA, and a year later graduated with an associates degree while at the same time working two jobs, one of which included directing live television on the weekends. By the time I was 19, although I didn’t let my depression hold me back from thriving in the hectic atmosphere that is broadcast news, it just kept getting worse and worse. I was finally diagnosed with major depressive disorder (MDD).

I started treatment with both a therapist and a psychiatrist. Over the course of a year, one antidepressant snowballed into twelve different antidepressants and anti-anxiety pills a day, along with my other medications for chronic migraines, insomnia and stomach issues. Over the course of that same year, I developed anorexia as well. My lowest that I know of was 98 pounds, which made it much easier for tumors in my body to get stuck on nerves and muscles.

It didn’t matter what the reality really was. I still saw myself as that disgusting girl with the tumors.

I realized I couldn’t keep up just going through the motions anymore when I was told I had an osteosarcoma in my right ankle, a result of one of the osteochondromas from the MHE turning malignant. It turned out the tumor was not, and I read somewhere “change your thinking, change your world,” a concept my mom always preached. I realized I had to make a change. I stopped taking every form of anxiety and antidepressant medications I was on, and started the slow process of retraining my brain into finding the positive in the negative.

One of my highest achievements occurred the other day, when at the end of the session my therapist told me my primary diagnosis is no longer MDD but PTSD And I did it without any medication — something I’d love to tell my old psychiatrist who thought I couldn’t. I’m still amazed every single day at how beautiful some things in life are and I can’t believe I just let it pass by for so long. I’m amazed that I can just be alone with myself in peace, look at myself and not hurl insults at the mirror.

Marie hugging her dog
Marie and her dog.

Don’t get me wrong, there are still days where my MHE and fibromyalgia join forces and leave me so weak and in so much pain that I can barely move. However, on those days I just make sure I surround myself with my favorite things, like fresh flowers or candles, or pick out different colors in the sky, or give my puppy extra cuddles, or put extra graphics and effects into my shows. Focusing on the little things like that is the best antidepressant and painkiller I’ve ever had.

We can’t change what we were born with, but we can change the way we see it. If you have any form of chronic pain, I implore you to be easy on yourself. Staying on top of your mental health is one of the most important ways to treat your pain, and any chronic illness in general. Instead of feeling trapped because your body limits the scope of what you can do, be proud you can do the things you can do. Don’t be ashamed of how you feel. Talk. Over-communicate even. No one will understand or empathize if they don’t know what you’re going through, and you should never have to struggle alone in silence.

Living my entire life with a chronic illness has humbled me in ways I wish I could impart to the masses. Fully accepting every tumor in my body and every nerve on on fire has lifted a weight from my shoulders that, at this time two years ago, I didn’t think was possible. Surrounding myself with nothing but positivity has given my soul the peace I always yearned for. Although I may be in more physical pain now than I ever was, I’ve never felt better in my entire.

I strongly urge every single one of you to begin the slow process of retraining your brains into finding the positive in the negative. I may not know your struggle, but my heart goes out to every single one of you. I believe the world will be a better place once we learn to communicate with one another. The first step is opening up. Tell someone you love about your struggle; tell the world your story. Don’t be ashamed. If you feel like there’s no one who will understand you, tell me your story. Find me on Instagram (@maprilsyrup), and tell me the things you are too scared to say to anyone else. You’d be surprised how strong you truly are, if only you’d allow yourself to see it.

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