Advice to My Past Self on Living With Chronic Illness

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Dear current self,

I know these past four and a half years have been physically demanding due to chronic sickness, numerous tests, medication trial and errors, hospital stays and a variety of procedures and surgeries. You have been pulled through the ringer. You’ve experienced unimaginable pain, fatigue and nausea while also trying to determine how to fuel your body with much needed nutrition and hydration.

These memories do not go away. They will continue to reappear as time passes by and your symptomatic illness continues. Just remember that there have been some improvements along the way. These obstacles have brought a lot of confusion, concern and hurt, but have also made you realize the strength inside yourself that you may have never known existed. (I know, sometimes you feel the exact opposite, especially when the severity of symptoms increase to heightened levels or remain constant for long periods of time.)

Those days and nights of screaming and squirming around in intense indescribable pain due to colonic inertia are gone. You are no longer required to take every possible laxative on a daily basis, adding to your discomfort, just to try and find a little speckle of relief. That was taken care of by you and your magnificent GI doctor, because he took the time to actually listen and care about you. How awesome is that! With his help, you’ve also improved hydration with home infusions and have been able to decrease the number of hospitalizations.

The purpose of this letter is not to remind you of what is going wrong, just as it’s not to imply that things should have been or should be handled differently. You and your medical team are doing the best you can and what is perceived to be in your best interest during each specific moment in time. For the most part, you have been fortunate to have received some effective and compassionate medical care from doctors and nurses. (Yes, I am also aware that has not always been the case.)

 

Unfortunately, you will always run the risks of having medical providers who do not listen, do not believe you, are unwilling to communicate, don’t appear to care about you as a person and/or do not value your quality of life standards. These unfortunate situations do occur, but keep in mind the phenomenal medical relationships you have had with your favorite all-time doctors and nurses and how much of a positive difference having them on your medical team has been for you along this long and difficult health journey. In the future, if you find yourself not feeling valued as a patient or have issues placing your trust in them, stand up for yourself and search for a physician that better meets your needs. You deserve that!

I see you trying – trying to stay realistically optimistic even when dealing with shattered plans, piercing physical pain, and relentless nausea (usually hours after oral attempts). I’ve seen you withstand the emotional strains you have been through as a result of your chronic digestive and nutritional issues. I’ve heard you reach out for help in prayer or songs when part of you wanted to completely let go and leave all of the physical and emotional pain away forever. When you wanted nothing more than to quit on life because the sickness, symptoms and their impact on your life felt too overwhelming to comprehend and face. I’ve witnessed you feeling miserable, unsteady, confused and sad due to the effects of your continuous illness. You’ve tried hiding your health and emotions from others, including yourself, in an attempt to avoid dealing with sickness.

The reality is you cannot make the illness go away; avoiding it gets you nowhere. Death, whether from this or something else, is inevitable. You’ve felt the sadness of watching so many young people, some actual friends, die as a result of complications from gastroparesis. (23 already in the past five months from just one of your support groups. Most of which were unexpected.) So many more are struggling with their health, having a difficult time finding appropriate medical and/or familial support, even on hospice or palliative care. With that in mind, you understand the importance of convincing yourself that amongst all of the negativity of your chronic ailments, you also have many positives to strive ahead with and for. That’s the purpose of this letter, to encourage you to take the best care of yourself – in all aspects of your life.

You can begin by being kind to yourself. Stop criticizing and making unfair judgements against yourself. Your illness was not created by any fault of your own. You have done well at trying to understand and help your body heal, or at least function better. Unforeseen changes have occurred to your body, some of which at times impact your self-image. These changes have been essential in keeping you out of the hospital. They have assisted in improving your quality of life, even though you still have a ways to go.

Yes, there will be times when you hate how your body feels and functions as well as its appearance. But it’s the only body you have. God has provided you with this vessel. You may look and even feel like an alien or machine at times – but look at all the good things that come along with your adaptations. You want others to accept your differences? You must own them, accept them and take pride in them yourself. Not sometimes, but all the time. Trust that you know when something is not right, trust that you know what your body and mind needs better than anyone else, and trust that you will reach out for help when you need it.

You may hear or see that some people accuse you and others of sharing your health stories for sympathy. If this is ever the case, don’t pay it any mind as apparently they do not know you or your heart. You know with all of your being that you don’t want to be the center of attention. You could care less if anyone outside your small circle of family and friends knows your name or individual story. Sharing your story with others comes at a risk. It’s outside your comfort zone, but that’s OK. Just stay focused on why you do it – to help others who are facing similar struggles and increase awareness so better treatments and more research can become available, if not for you, for the younger generations.

Follow your heart; that’s all that really matters. If you listen to your heart, I believe God will guide you in the right direction. Self-worth and purpose are essential to maintain when dealing with illness day in and day out. Some days you are going to withdraw yourself, hide behind a “mask,” want to be invisible or appear “normal” – and all of that is OK. It’s perfectly fine to take it day by day or moment by moment. You have permission to authentically share your journey one day and the next be completely silent if that’s what your mind and/or body needs. You are not expected to be strong, courageous and happy all day every single day. You are allowed to experience any and all emotions. The key is to maintain a healthy way of coping with a variety of emotions and all of their levels of severity. You have already discovered how beneficial writing and blogging is for you. Keep in mind that new ways of coping may appear along your journey as well.

My advice to you is to live the rest of your life to the best degree possible. Not every day is going to be a decent day. There are going to be bad days when you struggle. There are going to be days, possibly more than you anticipate or want, that are dark, scary, sick and painful. There are going to be days when you hate yourself or feel as if you are alone and drowning. There are likely going to be even more days that you are weak, frustrated, defeated and extremely fatigued. I’m sure there will be days you are hopeless and fighting with all of your might just to survive the present moment. Most likely there will be days when you feel like giving up, when you are unable to see anything but dreary days ahead again.

You’ve been there before, and guess what – you are still here! You have persevered or managed to endure all of the challenges and obstacles that have come before you. Whether it was just taking one breath at a time, screaming/crying through tremendous pain, withstanding incomprehensible nausea or educating others, you always find a way to keep moving forward.

Sometimes it was by singing along with your favorite song lyrics, taking long hot soaks in the tub, listening to encouraging words from loved ones and friends,or simply laughing at the craziness of it all. Why? Because you realize that not every day will be horrible. There will be days that may not be perfect, but manageable enough to push through and actually live. There will be good days and even magnificent days ahead as long as you keep holding on.

At times your days may feel as if they are constantly full of thunderstorm after thunderstorm. Yet, every storm will eventually calm at least for a little while. The rains will let up, skies will brighten, rainbows of blessings will even be visible between some storms. These brighter days are the moments you must take advantage of, must live for and must remember. The calmer days, even if they are damper than you’d prefer or drizzling with pain, nausea or other symptoms need to be lived. These moments, when lived, will become extremely important to your mind and heart.

You have to keep living – not just existing, but actually living! You need to continue to take reasonable risks – just not too risky – of having fun and creating memories with your kids and family. There is a reason you are here, and I can guarantee that the reason is not to just sit back and let life pass you by while waiting to feel better. Fight to enjoy the “better” days, even if it takes days of preparation or recovery. At the same time, be mindful of what your body is telling you. (I know – it’s a very thin and shady line – and unfortunately, you will not always make the right decisions. Oh well, that’s life, right?)

Will you have to make sacrifices? Of course! But you don’t have to always sacrifice you!

Will you have consequences to pay? Yes! Only you can determine what’s worthwhile at the time.

Will there be limitations? Absolutely. Energy, health and strength will all play a part every day.

Will your actions complicate or make symptoms worse? Likely at times, but what if not always?

Just remember these few key points…

You and your life are not defined by your illness or emotions. I know they play an undeniable part in your day. Lots of times your emotions become more complex to handle because they are the result of physically feeling horribly sick. I know they help make you who you are. But not them alone! Your dreams, intentions, heart, goals, outlook on life and faith make you who you are as well. Reflect on your emotions and desires.

Whether by writing, blogging, mindfulness or talking with others – be open to communicating how you feel and why you feel that way. Respect your emotions – all of them: positive, negative, happy, sad, fright, guilt and all of the in-betweens. All of them matter because all of them make you who you are. Don’t ignore them. Don’t push them to the side. Embrace them and let them help you grow. Allow them to help you be the best you possible, allow them to strengthen your relationships, including within yourself, and allow them to keep you humble and genuine.

Breathe. It’s OK if that’s all you can manage at the moment, hour, day or week.

When you catch yourself in a negative frame of mind, use that as a clue to rethink and redirect your thinking. Label the emotion and then ask yourself what you can do to make it less painful or more manageable. You are quick to encourage others; it’s OK to encourage yourself as well. Surround yourself with people who are there for you, people willing to provide you the encouragement you need when you are at your lowest. It doesn’t matter if they encourage you in person, online or over the phone – as long as you have people who care about you and whom you feel comfortable enough to turn to when times are most challenging, people who can bring you out of the darkness by reminding you of your strength, faith and value.

Have a purpose for each day, whether it’s in the form of self-care, fun or simply helping others. Find a way to keep the purpose fresh in your mind to look back on when you question why you are trying so hard, why you are still existing and why you matter. I suggest you take a moment each day to jot down your key purpose for that day. (Possibly on a calendar, so it’s visible.)

Sometimes your sole purpose for the day may be resting, recouping or attending necessary medical appointments. Other days it may be observing your child’s ballgame or being present at a school function. Another may be comforting a loved one that’s going through a difficult time themselves, helping with homework or running errands. But the point is, you can and will do something meaningful each and every day!

You’re not worthless, regardless if you feel so during the seemingly endless bad days, weeks or months. You have and can continue to make a difference in the lives of others – you just have to protect and take care of yourself along the way. You must be careful to pace yourself and not try to overextend yourself. The quality of relationships and experiences are far more important than the quantity. Choose which activities are the most worthwhile to you and your family. The purpose of your day does not have to last all day long – it can be short in duration, possibly lasting only an hour, yet still be meaningful or even essential.

Search and strive for true happiness – not just satisfaction. Take the time and initiative to enjoy life and create treasured memories with family whenever the opportunity and mood becomes you. Sometimes you have to be willing to tackle the consequences later to discover the joy, happiness and experience in the moment.

Continue to express faith with appreciation and express authentic gratitude for all that goes right. Trust that everything has a purpose and a positive side. Find peace with your decisions, choices and yes, even mistakes! Accept that your illness impacts your life in more ways than you’d ever like to admit and without a doubt more than you ever want it to, but there are still ways to enjoy life and make it meaningful and purposeful .

You can handle this. You will do this. You will push the limits, you will fall, but you will also get back up.

When it comes down to it, we can’t change yesterday and are not promised tomorrow. All we have is today, so make each day count. Your parents, kids and even yourself are not going to get any younger. Time is not going to stop while you try to feel better. You are going to have to “bite the bullet” and fight to remain alive not only physically, but emotionally and mentally as well. You’re going to have to communicate and work alongside your medical team, including new ones, in determining and creating your healthcare treatment plans.

If you successfully remain determined and stay on the correct track, then you will be rewarded. Every time you witness the joy in your children’s voices and eyes, attend graduations and weddings with tears of pride, observe the miracle and feel the little fingers of your future grandchildren, are reminded of loving memories shared with loved ones across the years and feel the magnitude of love from God, your family and even friends and students you’ve had the opportunity to come to know along the way, you will realize exactly why…

You never give up and you always keep fighting!

Thank you for having faith in me!

Sincerely,

Your future perspective

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Thinkstock photo via bruniewska.

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Being Unable to Work Is Not a Vacation

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“Lisa can do it! She does nothing!!”

I’ve been volunteered and expected to do things like provide full-time child care for a friend’s child, because I “just sit at home and do nothing, anyway.” I can barely take care of myself some days, much less your child, who I care about deeply. It wouldn’t be safe for any of us. I “do nothing” because I am physically unable to do more. What I do is survive and treat my symptoms, and I’m very proud of myself for remaining positive about it.

“Ask Lisa, she doesn’t work.”

I’m expected to house sit, cat sit, organize things, do favors that are far beyond my physical capabilities, because I don’t work. But here is the thing. It’s not that I don’t work. It’s that I can’t work. There’s a very big distinction to be made there. If I can’t work to fulfill my own dreams and desires, I certainly can’t work for you. I’m exhausted by simply being. I’m in pain all the time. My health suffers severely from even doing small, simple things.

 

“Must be nice to sleep in every day.”

It would be nice, if the three hours I get in the afternoon weren’t the only hours of sleep I get. I’m not sleeping in. My pain is worse at night. The sleep I do get in the afternoon is the only sleep I typically get.

“I wish I didn’t have to work.”

And here I wish with all my soul I could work. Let’s switch, OK?!

“You’re so lucky! I wish I had a vacation every single day!”

I haven’t had a vacation in ages. I can’t make plans like that. And being home, sick and in pain, every single day, is not a vacation.

“You look good today! Are you back at work, yet? No?! Why not?!”

So many people don’t seem to understand that chronic means forever. I still have hope that some day I might improve enough to begin working again, but if I have a good day, or happen to look better than I feel, my chronic illness doesn’t suddenly disappear. Unfortunately.

“You’re wasting your life and your potential.”

This one gets to me. Because I feel like I am, too. So I write. I share my thoughts and my experiences, in the hopes I help someone. Make a difference. So I don’t feel like a waste. But, when my illness or pain are severe and I can’t concentrate or write, my potential disappears and it’s not something I can control.

“You have a brain, why don’t you use it?!”

Imagine trying to solve complex mathematics while someone is bashing your kidney with a pole. It’s difficult to think and use your brain when your body is in agony and you are massively sleep-deprived.

“I still go to work when I’m sick.”

I worked while sick too. Until one day I couldn’t anymore. When working would put me in the hospital. I hope you can always continue to work while sick. I truly wish this for you.

“You don’t need all those pills. Exercise, eat healthy and take herbs. It fixed me.”

I wouldn’t be here right now, hearing your unsolicited healthcare advice, without all of those pills. I’m grateful for them. I need them. They aren’t an option, they are a requirement.

It’s difficult being young with a chronic illness. Many people really don’t understand. I hope writing this will help some people understand those in their lives who are chronically ill a little bit better.

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Thinkstock photo via CentralITAlliance.

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5 Words That Have Different Meanings When You're Chronically Ill

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Did anyone else complete “Wordly Wise” workbooks in elementary school, or page through the dictionary? Well, I did: ace vocabulary test-taker in this corner. I’m all about choosing the perfect words, using them as sharp communication tools, and sprinkling in a little creative license. Years after my first chronic illness diagnosis, I seem to be using more of the creative license than ever. Old, simple words have dual meanings now. I’m not referring to their exact dictionary meanings, but the definitions that I’ve come to associate with words through life experiences.

There’s a sort of lingo that often comes with managing a chronic illness, growing alongside the list of symptoms. When I chat with healthy friends, my words don’t always “click” in their mind. Conversely, friends with chronic illnesses “get it” and use the same lingo to describe their situations.

Here are five of those double-sided words, with “Healthy Pal” (HP) and “Sick Pal” (SP) meanings…

1. Sick

HP: You’re entitled to stay home from school or work for a few days, and you may take a Tylenol. All of your Facebook friends will heard about it and respond with sad-face emojis.

SP
: You have to accept that you’ll never get well, and your calendar fills up with medical appointments. Social media is tricky because people might get tired of hearing about your health.

2. Journey

HP: A long trip, perhaps a family road trip or flight with scenic views. The beginning and end are usually defined.

SP: An overused, yet appropriate, term used to describe your health situation. It might have no defined beginning, and it’s lifelong.

 

3. Fight

HP: A term associated with violence and aggression, of both the physical and verbal variety. One way or another, there’s generally a resolution.

SP: Something people tell you to do when you express the difficulties of your health situation, although maybe you’d rather just hear some evidence of understanding. Also used to describe the situation, much like “journey,” also there’s no neat resolution.

4. Pace

HP: Something you do or set while running a race, or walking alongside elderly relatives.

SP: An important, yet super tricky, part of managing your limited energy and abundant symptoms in order to complete activities. It frequently involves saying “no” and resting in preparation for the next day’s obligations, but it’s not 100 percent effective.

5. Love

HP: The glue of mushy relationships and your pet’s loyalty (OK, food has a role there). This word is thrown around, and you hear it endlessly in pop songs.

SP: The astounding thing that overcomes a lifetime of exhausting days, pain, canceled trips, and frustrations. It has the power to improve your situation, and may strengthen through each trial.

Everyone has their own, slightly varied meaning for each word. Those examples simply illustrate my personal understandings. When I talk to healthy friends, who seem to lead “normal” lives (whatever that means), I try to remember that their vocabulary is not the same as mine anymore. The vernacular of chronic illness is highly descriptive, unflinching, and rather beautiful in its vulnerability. Maybe I’ll create a lengthy guide someday, but for now, I need a nap.

Follow this journey on Maria Gracefully

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How the Depression and Anxiety of Illness Make Me Feel Trapped at Home

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I have been through quite a bit in the last year and a half. Depression, anxiety, PTSD, severe depression and deep grief have had their grips on me, tight.

I have found that staying home is my “safe place.”

The thought of driving to the convenience store two miles down the road throws me into a panic attack.

I manage to go to my doctor once a month, longer if I can stretch it out, therapy, and most school events.

 

If I do leave, I require medication for my anxiety. It usually doesn’t work 100 percent. This makes me feel even more socially awkward.

I hate this. Hate it! I feel like a lump. I am so tired! I only want to sleep, but it’s not that easy. My brain ticks off all the things that could possibly go wrong. When I do sleep, I dream of working, or I have those hellish night terrors.

My husband does all the shopping, trips to the park, sometimes the cooking. I wish I could explain to him that I’m not just being “lazy.” I think he knows, but he doesn’t truly understand.

I wish I could be the me before. More than anything.

When I panic I have physical issues with my body.

I hate not being the fun summertime Mommy.

Sometimes I feel like I am literally dying.

Sometimes I want to die, but not really.

I know I am missing out on my daughters growing up.

My heart is broken.

I don’t know if I can pull myself out of this black, deep, dark hole I dug for myself to hide in.

I’m so tired of crying.

I’m so tired of being angry.

I’m so tired of being stuck in this house, which is now my self-imposed prison.

I’m scared.

What if this gets worse??

Will he divorce me?

I don’t know the answers to those questions. I hope putting one foot in front of the other every day will work eventually. I won’t give up. I won’t let this beat me.

What I do know is I do want to accept the invitations to go out and have fun.

I do want to go on weekend getaways. Thanks for the invitation, I appreciate it.

However, I. Just. Can’t. Right. Now.

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

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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Thinkstock photo via StephM2506.

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To the Girl I Used to Be Before Chronic Illness: Thank You

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Gosh, you were wonderful. You were vibrant, spontaneous and so full of adventure. You could stay out at karaoke until 2:00 in the morning on a Sunday night, drink who knows how many beers and still be good to go to work at 9:00 in the morning. You could take unexpected road trips, driving six hours straight just because. You could go walk around a theme park for hours and be perfectly OK doing it again the next day.

You didn’t have to take a dozen pills a day. You maybe had to take some Aleve or potassium sometimes because of work, but otherwise you were good to go. You didn’t have to check then double check your calendar to make sure you don’t miss a doctor’s appointment. You weren’t worried about side effects and drug interactions. You never even had your blood drawn.

I miss you sometimes. Well, maybe not miss. I envy you sometimes. Yes, envy. I envy the energy you had. I envy the drive you had. I envy the carefree life you led.

 

Then things changed. Once the pain started, you slowly changed.

That’s OK, though. You had to change. You had to adapt. Changing comes with all the hurdles. Waves of depression, the fluctuations in weight and the constant need to remind yourself you are worth fighting for.

You should see how you’ve turned out. Yeah, you have to take like 12 pills a day, some days you can only eat toast and pretzels and sometimes you really do beat yourself up when the depression or anxiety hits. You also know so much about chronic pain and all the medications used to treat arthritis. You researched everything about it. You’ve helped at least half a dozen friends get through the first stages of being sick without a diagnosis. You’ve survived three surgeries, a dozen minor procedures, and who knows how many different specialists. You are so much stronger now. And every day you get stronger.

So to the girl I used to be, thank you for being so bright and happy and optimistic. Without you, I don’t think I would’ve stood a chance of turning into the woman I am now.

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Thinkstock photo via evasilieva.

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Life With Chronic Illness and the Importance of Pacing Techniques

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Moderation is something where we learn about this pain, fatigue and life balance. It is about pacing and limits. It is also about still managing to do things we want to do in our lives. For example, I have a family event coming up this Sunday and I want to go to it, so I will. I will pace myself and I will plan for a migraine that may happen and for the pain that also may become worse while I am out and about. I will make sure not to exceed my limits. Then, I also scheduled the next day off from work because due to the extra fatigue and expending of energy, I always account for one recovery day. Again, another pacing technique.

This is also used on vacations. I account for a recovery day when I arrive, and I account for recovery when I return. The way I see it is just moderation in all things. I do events and activities but I may not be there for as long, and I may not be as socially active as other people. I take the time to recover and de-stress. I actively do things to de-stress, like meditation. Society is the hare and I am the tortoise. I will, and do, turn down things I know will exceed my limits in pain or fatigue – or if there is no recovery time. And I am fine with that. Pacing is very important to chronic illness management. And I feel so much better when I pace.

I know isolation. I know “hermiting.” I know not doing anything because I was in pain and doing things would aggravate it. I know how this leads to can’t-ing ourselves right out of things we want to do…but don’t have the energy or feel it will trigger pain so we decide just not to do it. I’ve been there. And in the end, you just don’t do anything as a result.

I do it. I think many of us do it. Here is the warning: I “hermited” for a few years. More than a few when my pain wasn’t being managed. And it isn’t good for a person, even an introvert. We need to get out and about once in a while and socialize.So sometimes we have to get out of that comfort zone a little and find ways to engage more in the world.

Here are some things I do:

1. Go for walks (get me out of the house).

2. Coffee with my mom.

3. Coffee with a an old co-worker.

4. Game night with friends.

5. Karaoke night.

6. I did paint night one night. Going to try that again. It was a blast.

7. Getting together for dinner, or shopping with my mom.

8. Family events.

9. Fires pits gatherings at our house with friends and/or our neighbors.

This weekend I plan on going to a fire and BBQ with friends in the city. And next weekend to my uncle’s 50 anniversary party event. So in the beginning, I was doing nothing. What helped was a little pain management. Then some acceptance, like having awareness that I’ll be at pain at home as well. I’ll have pain either way. As long as I go prepared I can enjoy myself. And by enjoying myself, I get rid of that sense of isolation and I boost my mood. I don’t need a lot of social contact being an introvert. Just a little and quality time, not quantity for me. When I go out, I get:

1. Decrease in isolation.

2. Boost to mood.

3. A great time and laughs.

4. Visiting people I enjoy being around.

5. Doing things I enjoy.

6. De-stressing.

7. Taking my mind off things.

I started really slow. I was just initially going for coffee with mom every couple of weeks or so. Just to get out of the house, which was starting to get to me. I  slowly added to it from there. And going for walks, also to get me out of the house and my initial exercise program.

To do similar things, it depends on your pain, fatigue and comfort zone. It likewise depends on the activities. Sometimes people invites me to concerts I’d love to go, but I can’t go. Migraines can’t handle the noise and lights. They’re just not something I can do. But a game night? Yes, I can do that. Or movie marathon. Or a small pub karaoke session, I can handle that. Going out for coffee or inviting someone to my place, or inviting a few people over for a fire at my place is also something mellow I enjoy. Going to a loud, packed bar or club? Nope. Tried that one night with a live band. Migraine in less than three seconds and it was a bad one, so off I went. So, it depends on the activities to engage in.

You have to know when to say no or what to suggest. Also, sometimes you should meet new people. When you hermit for years? Not many people stick around, I’ll tell you that. We had to meet new people to hang out with. Two introverted people meeting new people? Hard stuff, man. But we did. Slowly but surely, and it was worth it to me. It was valuable to do. It made me feel connected and engaged with the world again.

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