Three female friends sitting together

For my dearest roommates,

It must not have been easy for you to get to know me, and learning how I was chronically ill with an undiagnosable illness. You watched me struggle sometimes and always offered your help, even though you already knew I didn’t want it. Thank you for not taking over, even though I can imagine it was hard for you to watch me struggle.

You always offered a supportive word and never stopped inviting me to things, even though I only went occasionally. I want you to know, how much I appreciated that. It allowed me to feel like I hadn’t been forgotten.

You were with me when I finally got my postural orthostatic tachycardia syndrome (POTS) and small fibre peripheral neuropathy diagnosis, and then you were with me again when I got the vitiligo diagnosis. I cannot count the times you’ve listened to me vent, or given me a shoulder to cry on, when I find the world too cruel and unfair to want to carry on. Thank you for giving me the strength to move forward. You’ve been watching me struggle to figure out this new identity, and love me all the same. Thank you for not leaving when times were hard.

Thank you for every hour you have spent with me in the ER waiting room, when I have been scared, anxious, and in pain.

As frustrating as it has been learning to live with these chronic illnesses, I am truly grateful to have people like you on my team. I may not always be OK, but with you around there is never a day that goes by without laughter.

Thank you for everything you have done for me. Whether you know it or not, you have made me a better person.

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As I sit here writing this, my two children are asleep next to me on our giant couch. They barely ever make it to their own beds in their messy rooms, in our messy little house. We are currently living a messy life, and I am not a great mom right now.

It has taken me awhile to admit this. I dreamed of being a perfect mom, with the sweetness of Caroline Ingalls, the brilliance of Claire Huxtable, and the cooking skills of Martha Stewart. But truth be told, I’m becoming more and more like a chronically ill Roseanne.

I always thought I’d be an awesome mom, and I was doing OK during the first few years of my daughter’s life, until I was struck hard by illness and other circumstances. I had to suffer through a bad car accident and bruised ribs, five miscarriages, gall bladder surgery, interstitial cystitis, endometriosis, severe premenstrual dysphoric disorder, fibromyalgia, frequent pneumonia due to asthma, chronic Lyme disease, hysterectomy, multiple bilateral life-threatening blood clots on my lungs, panic attacks and anxiety.

I am so fortunate to have survived all of these things, but I can feel the dream of being an amazing mom slowly fading away. The stress of being in pain and chronically ill has taken its toll.

Like tiny grains of sand sliding down an hourglass, I am very aware of time slipping away. I realize that I can’t reverse the hourglass, I can only catch some grains of sand before it’s too late.

I can’t bring back the things my children have missed out on, I can only provide them with some new things to look forward to.

I may not be able to show them how to keep a perfect house, but I can show them how to be good people.

I may not be able to show them how to run a marathon, but I can show them how to leave beautiful footprints in the sand.

My family is everything to me. Though I am disappointed that I am not able to be a great mom right now, I will never stop trying to be one.

I will be the best mom that I can be at this moment, and share the best parts of me when I am able to.

When I glide around the ice skating rink with my daughter, I hope she remembers the glow in my eyes as I looked at her. My heart melts when she is near.

When I go bowling with my son, I hope he remembers how proud of him I was after he knocked down a few pins. How proud I will always be.

I hope they remember all of the good times we shared, and all of the magical memories we created like when we visited Disney World. Our trip there was the greatest trip of my life, and I will cherish it forever.

I hope they learn a valuable lesson from me about how when life drags you down, you must keep going and be the best that you can be.

I realize now that there is no such thing as a perfect mom. We all experience the ebb and flow of life and of parenthood. We must accept the fact that there are times that we will not be terrific moms. We must learn to accept life’s quirks, perks and failures. They will help shape who we are. They will make us stronger.

I remember holding both of my children for the first time. Those brief moments were the most powerful of my life. It is when I learned what true love was, it is when I became a mom. It is when I made a promise to my sweet little babies that I would love, protect and care for them for as long as I was alive.

I may not be a great mom right now, but I hope that when my children look back on their childhood, they will see that I kept my promise, and that I loved them with all of my heart.

And hopefully they will remember that love for the rest of their lives.

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Comorbidity is the presence of one or more additional diseases or disorders co-occurring with (that is, concomitant or concurrent with) a primary disease or disorder.

Like so many people out there, I live with multiple mental and physical disorders. Each disorder can be debilitating for me. Let me list them out for you, shall I?

There are a couple other disorders that may be there, but I’m still waiting on diagnosis, so I won’t add them for accuracy sake.

If you’re counting, that is five mental disorders and two physical and chronic disorders. I’m tired just typing up the list.

I experience symptoms from these disorders daily and they often overlap each other in the worst ways possible. Most recently my UC has flared up and I’ve been in ridiculous amounts of pain. Because of the pain, I am often stuck on the couch with a heating pad and a pillow on my abdomen, curled up under a blanket, not able to do anything. Or I’m laying on my bathroom floor, giving myself an enema to try and heal the ulcers in my colon. This of course makes my mind race with thoughts stemming from my depression and anxiety:

You’re being so lazy? Why does this have to happen to me? My husband hates me for not contributing to the household chores. Why won’t the pain stop? Will this ever end? Will I ever be healthy again? Why is my husband so quiet? Is he mad at me for this?

And the list goes on. Because I’m obsessive, the thoughts compound on each other until I’m so upset I just would rather fall asleep and not wake up. And that’s just my UC flare ups.

Now let’s add in the migraine component. I’m lucky in that my migraines only occasionally cause nausea, but they do cause extreme sensitivity to light, sounds and smells.

My office, with a window, has to have the blinds drawn every day. I work with a desk lamp to light up just enough area that I can work, but lower than my line of sight so I can’t be set off by the bulb. Not to mention the amount of medication I take to try and stop the migraine is clearly doing a number on my stomach and only exacerbating my UC. And on the very worst days, my office door is closed, which causes coworkers to talk, or ask too many questions about what is wrong with me.

Once again, the anxiety kicks in to high gear, wondering, “What they are saying about me? Who is talking about me? Can I trust this person or that person? Should I open my door and wear sunglasses inside so they know it’s a migraine? Should I go home and rest till it goes away for my own health? Will my boss be upset with me? Maybe I just need to tough it out and make it through the day.”

When the mental disorders overlap, the negative thoughts are louder and faster coming. I spiral into a deep, dark hole that is nearly impossible to get out of. I obsess over losing my job because I don’t feel good enough to work, but then have an anxiety attack because I’m running out of paid time off, and my boss will be upset with me if I call out again. My family medical leave of absence has ended, so there’s no safety net there for me anymore.

All of this anxiety and obsessing usually cause my stomach to hurt which kicks the UC flare into high gear. And once again, I find myself on the couch, unable to contribute to my own life.

I know that with treatment (both therapy and medication) I will eventually get better. But for now, living with so many conditions with overlapping symptoms is exhausting. I take it one day at a time. I try to wake up and start the day as positive and happy as possible. Most days that happiness fades pretty quickly, but I put on the mask that many people with invisible illnesses wear and pretend everything is OK to ease the people around me. I spend more energy keeping them happy than I do on fixing myself.

The cycle never ends. I’m afraid I’m on a never ending carousel and the only way off is to jump into what seems like an abyss below and pray that there is someone there to catch me before I hit the bottom. And on the worst days, I pray that there is no one there to catch me so that I can hit the bottom and finally feel the relief from all of these conditions.

But for now, I write and try to give a voice to myself and so many others. Maybe helping people will in turn help me.

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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It’s 5:30 in the morning, and I still have not slept. I am thinking too much even though both my brain and my body are telling me to sleep, or I will regret it. I am trying with all my might, but no matter how much I urge myself to fall into the sweet embrace of sleep, I simply cannot. It is out of my control.

I force myself to crawl to the edge of my bed to grab my laptop from my backpack. I know that if I don’t write this now then I never will. Everything I want to say so badly at this moment will have escaped my mind by the morning.

I fear to sleep now. It is the only thing in this world that seems to ease my fibromyalgia pain and intense chronic fatigue syndrome, yet it is also my worst enemy as it causes me so many difficulties. If I ever manage to sleep, then it is for hours on end, especially after nights like this. I have been awake for so long that the chances of me sleeping less than 12 hours at this point are quite slim.

This experience happens all too often. My body sabotages me. It wears me down and then takes all that is left into a deep yet unrestful slumber. I then will miss everything for the day, spending the remaining hours of the night attempting to do damage control on the situations I have no control over.

Then, I am stuck in a vicious cycle of having more thoughts on my mind: heightened anxiety over what needs to be done, greater depression because I feel like a failure at life, and even more fatigue from the extreme stress and ultimate overwhelmingness.

I am so fortunate to have one friend here at Denison who gets it as much as one can without being in my exact situation. In fact, she helped me do my laundry so I would have an opportunity to rest and take care of myself. I have never experienced that kind of empathy and kindness before. We have taken it upon ourselves to hold each other accountable in life and with schoolwork. I am extremely grateful to have her in my life, and it is moments like these when I know we will be lifelong friends.

But the guilt. The guilt is ever present. Even in this act of kindness, I felt as though I was taking advantage of our friendship. I know that my friend has so much on her plate as it is, and I feel as though I am adding to the workload.

I feel guilty for missing class, even though I try my best to explain my situation to my professors. The guilt intensifies when I can manage to show up to class, but I am completely unprepared with the readings and whatnot because it took all my energy to just make it through the day and attempt to be productive.

I feel shame when I don’t show up to any scheduled commitment because I know that it makes me seem flaky. The reality though is that if I don’t show up, regardless of time of day, I was sleeping. I then feel judged as I walk around my small campus and see people I know were in the classes I could not attend. I worry what they think of me. I am so sorry for my roommate who is forced to cohabitate with me and yet even though I doubt she does, I feel incredibly self-conscious when she comes back from being productive at three in the afternoon, but have not left my bed.

This is where I am right now. The world was not created in a way in which I am meant to succeed. However, I know that I hold the potential, and I cannot give up no matter how many curveballs are thrown my way.

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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If you have a chronic or invisible illness like me, you know that it has affected your entire life. One of the things that I have noticed is how maintaining (and often losing) friendships differ. We make friends differently, keep friends differently, and lose friends differently. We still want to be loved and appreciated just like anyone else, but it is often very difficult.

Over the years, I have noticed that my friends or people I interact with play certain roles. They act in similar ways and often perform similar tasks. This is in no way a critique or a shaming of these people. “Friend” is a term that here means at the very minimum, “Person you interact with,” or could mean, “Best friend I spend an infinite amount of time with.” Perhaps you will notice you have one or more of these friends.

Friend #1: The Optimist.

This friend always sees the silver lining. They woke up early in the morning, got the worm, and made the bird a healthy breakfast to make up for it. They tell you about the power of smiling and, “It gets better.” They do not offer actual advice, but instead snippets of those cute, yet annoying, quotes you see on clothes at Forever 21. They mean no harm, but they do not really help. These people truly do not mean to be as annoying as they are but unfortunately, that doesn’t make them less annoying.

Pros: Lifts you up, even if just a little.
Cons: Can come off as a broken record.

Friend #2: The, “I don’t know what to tell you.”

This friend is the one that will text you, “What’s up?” out of nowhere when they are bored. They don’t give you much to go off of and it’s hard to keep a conversation moving with them. In order to keep the conversation going, you divulge something personal. You aren’t necessarily asking for their advice, just confiding in them, and they say something like, “Oh,” or, “Well, OK.” Frankly, I have seen better comebacks from a Snapple cap.

Pros:
Cons: Just really, really obnoxious.

Friend #3: The Panicked Penguin.

If there’s something to worry about, they will. Whether it’s getting a blood test, being on a new medication or even getting a paper cut, this person will panic. For you. And 10,000 times the rate that is necessary. I’m not sure why they panic. Did they watch a particularly dramatic movie about your illness? Read a book about it? Or are they just like this with all of their friends? How do they sleep at night? We just don’t know.

Pros: Makes you feel important and loved.
Cons: Gets old. Real fast.

Friend #4: The Overbearing Angel.

If you need anything, this person is there, but sometimes it is to an extreme. They will pick you up if your car breaks down, make food for you, even…open your mail for you? What’s up with that? You know they care, but it would be nice for them to ask if you need help instead of just doing everything for you.

Pros: Sometimes it’s nice to be treated like the royalty you are.
Cons: …Other times, you just want to open your own damn mail.

Friend #5: The Twin.

This friend has a similar or the exact same illness as you, although no two individuals with an illness are exactly alike. They may ask you for advice or you may ask them. You might butt heads sometimes, but you always end up talking it out. You trust each other. You lean on each other. You are in this together. Hooray!

Pros: !!!!!!!
Cons: You’re both still sick.

Friend #6: The Yogi.

You can find this person at a Whole Foods, yoga studio, or…in your face, telling you how to fix your illness. They recommend miracle cures, different diets, power poses, positive self-talk, and all sorts of nonsense. It’s quite horrifying. You can usually tune them out and you pray their comments are in jest, but you wonder if you should speak up so other chronically ill people aren’t subject to the spewing of their choice fake health fad. You decide most of the time it is best to keep your mouth shut. However, their attitude is blaming the victim for their illness, “But how can you be sick? Buzzfeed said there’s one weird trick to cure multiple sclerosis, didn’t you try it?”

– crickets –

Pros: Literally nothing.
Cons: Literally everything. And quinoa is disgusting. There, I said it.

Friend #7: The Denier.

I don’t know if they believe we faked the moon landing, but they are skeptical of illnesses and injuries that they cannot see. They instruct mindfulness and, “Not letting things get the best of you.” Yes, let me just erase my years of trauma. I think there’s a button for that in my brain.

– beep boop beep beep boop –

All better! Wow, what a day! What shall I do now?

Pros: Helps you raise your blood pressure from anger.
Cons: Wait, that’s not a pro.

Friend #8: The Chameleon.

This person really does not know how to deal with your illness, so they take many different approaches. One day they are very supportive and open to conversation and the next, they quiver merely moving your book about suicide to get to the television remote. This people are hard to deal with because they can be very encouraging, but they can also be very draining. One never knows how quickly they will change or how they will react when you are in crisis.

Pros: Encourages you to learn about different types of people and situations.
Cons: Hard to keep up with.

Friend #9: The Ghost.

When you’re well, they are there, they are more than there. They might even be one of your best friends. When you are well, you go to the mall together, get your nails done, and go on road trips together. What fun! But when you are sick…They disappear. They don’t want to talk about how you haven’t been able to keep down solid food for days. Or how you’ve been to more doctors in one month than they have been in their entire life. Or how your pee looks funny. (Ok, never mind, no one wants to hear about that.) It’s kind of a bummer, really, they were such a nice friend.

Pros: Helps you realize sometimes you have to stand on your own two feet.
Cons: …But boy do your feet get tired.

Friend #10: The Fan

This person might not know much about you or your story, but they have offered you encouragement. Perhaps they have talked to you about something you have written or something you said. Perhaps they said, “You’re such an inspiration!” or, “I really relate.” Maybe they even shared similar issues, but they have not been able to come out publicly with them yet. Although they may not really be your friend, it sure was nice for them to reach out. Kudos!

Pros: Ego boost!
Cons: …There aren’t enough of them.

A friend could be a combination of these or fit none of these archetypes. Your mileage may vary. I encourage you to reach out and comment about the “chronic illness friends” you have encountered in your life.

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.

We want to hear your story. Become a Mighty contributor here.

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Professor,

Hi, it’s me again. I wonder if your stomach gets all twisty when you see my email come through like mine does when I type it. I’m sure I email you more than most students that are actually required to take your lecture and I wish I had some sort of question about the material, but as I’m sure you’ve guessed by now, I don’t.

I wanted to start this message, as I’ve been starting most of them lately, by apologizing. I know it isn’t easy to have to handle a student with as many health issues as me. I know you’ve had students who skip your class and who do so probably without care or remorse, but I promise that’s not me. I can’t honestly remember the last time I just up and skipped a class.

I’m sorry that, once again, I won’t be able attend or have just straight up missed your class today. It’s probably weird of me to apologize for being sick again, but I wonder if you you really know how much missing your class affects me. To be completely honest, the guilt of missing class usually makes my pain worse. Not that I’m blaming you, that would be silly. I just I feel so terrible about it that the stress and anxiety literally adds fuel to my pain fire.

Now OK, cards on the table. I didn’t go to the emergency room or a doctor today. I know that the last time I had to miss your class for the pain, I went to the ER to try and get some relief, but that isn’t something I can do every time I flare up. Otherwise I’d be going in and out twice a week, and then the doctors would start to assume that I was looking for a, what do they call it? A quick fix?

What I mean is that it is hard enough to handle going to the emergency room for a condition that doesn’t yet have a cure, and trying to be taken seriously as it is. I know the first thing the doctors do is check to see how long it’s been since I was in and what sort of medicines I got.

The problem is, I’m young. I’m too young. That’s what everyone says, “You’re so young to have all that pain.” But because I’m young and because of this epidemic of drug abuse, I don’t look like a promising admittance. No matter how many times I go to the same hospital, I still have to go through the whole speech about my condition, how long I’ve had it, and how I tried to do everything I could to stop the fare so I could avoid going to the ER in the first place.

The ER visits can’t be something I do everything I get sick. When I have a flare-up that I know isn’t going to stop without heavy duty medications that I simply can’t get prescribed for daily use, I have to take the step and go. But this wasn’t that kind of day, so I’m missing your class.

I can’t risk losing my “last resort” option because of your attendance policy.

Don’t get me wrong. I know why that attendance policy is important. Without it, students wouldn’t show up and would never have to be held accountable for their decision. In the same regard, I know that if I’m not present in class that I’m missing valuable conversation and questions that come with your lectures. Believe me, if I could help it, I would be that student front and center taking detailed notes and asking stimulating questions. That’s the kind of the student I am.

Or rather, the student I was.

What I’m saying is, I don’t have a doctor’s excuse for today’s absence. I know that makes your job as a professor striving to treat each student equally and hold up the standards you have set for your classroom extremely difficult. And that’s why these emails destroy me when I write them. I go through all of the motions to avoid writing them at all.

I have to wake up a couple hours before I have to be at class, even though it isn’t that far a walk. It takes me about an hour to get out of bed on a good day. I have to weigh my decision of showering that morning because as much as I love to be clean and fresh for every school day, I lose a lot of my strength for the day in the shower. It might sound a little confusing because I do love to take showers. But all that time standing, getting pelted with water, reaching, bending…it takes a toll. So once that decision is made, I try to go about my morning like I’m sure most people do. I get changed, I grab something small to eat, and grab my bag to go.

But that’s on the good days.

On bad days, I can barely get out of bed by myself. Showering is erased from possibility. Getting changed, depending on which part of my body is causing the most discomfort that day, sometimes ends up with me stuck half inside a shirt unable to lift my arms any further. All my time spent trying to move usually eliminates any chance of having a substantial breakfast and I remove as much as possible from my bag to lessen the load for the day.

I’ve been to your class on bad days. I’m not sure if you’ve noticed. Those are the days I don’t participate and where I’m counting the seconds until I’m not in this ill-fitting desk…Where I can’t focus because of the pain. Where we make eye contact and I look away because I don’t want you to see the tears that stay in my eyes.

But today is an even worse day. I haven’t gotten out of bed and I don’t know when I’ll be able to manage that. This is probably too much information for you, but I’ve had to use the restroom for hours, but my body simply can’t function.

And to be honest, my mind is completely zapped as well. You may not tell because you only get this finalized email, but it took me a great deal of time to write. (Thankfully, speak-to-text technology is a lot better than what it used to be.)

If I sent you the first draft of the email you wouldn’t be able to understand it. Autocorrect can’t fix everything, unfortunately. And you know how I write. I’m polite and cordial. Sending a quick, “In pain won’t make it to class sry thx,” isn’t the impression I want to leave in your mind.

I’ll stay up on the syllabus and make sure I’m up to speed by the next class. Any insight on plans we could work out to make sure I’ll stay successful this semester would be great. Though, I do know that you’re busy and won’t always be able to make extra time for a student like me.

I look forward to (hopefully) seeing you in class next week!

Kindly,
That absent student again

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