Upset woman, looking to her side.

Dear Mom – When You Cried After My Doctor's Appointment

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Dear Mom,

I’m sorry. I know you couldn’t have imagined this for our family or for me. It’s funny to think that just a couple of years ago, we had no idea was postural orthostatic tachycardia syndrome (POTS) was, no idea was dysautonomia was.

I think it was the vision check that really put it into perspective. That was the first time I saw you cry. We had gone in, and been told yet again, something in my body didn’t work. This time it was my eyes. Not only could I not see without glasses or contacts but I couldn’t track, the first of my learning disabilities. I was in ninth grade. The year after the great year of diagnoses, doctor appointments, and depression. We sat out in the car and you cried, and I didn’t know what to say. I felt so bad for you but I had no idea how to make you feel better. We were so tired. We had probably only been to five appointments. We have been to so many more since then.

Let’s be honest: We are the dream team when it comes to appointments. From multitudes of nurse practitioners in the beginning who gave me all those tests to all those meds that made me sick, or suicidal…To the dysautonomia appointments that changed everything. And, you have been with me by my side. You have watched over me and both of us have made our way together through the maze in the world of mental health and neurological disorders. And it has been tough.

I know a lot of people have gone through so much worse but I think we have had our share of hard appointments and experiences. I am so fortunate that I have enough time to figure to how to take care of myself with your help and your advice. I have no idea what I would have done if I was an adult with more responsibilities.

Though time has passed after the appointment that left you in tears, I think I know what to say now. I know it is so long after the fact but I still want to say something to try to make you feel better. You’ve been there for me so many times I have to return the favor. I’m sorry when I call you at 11:30 p.m. because I can’t go to sleep. I’m sorry I freak out about random stuff like grades, friends, and social events that I know I can’t attend. But I appreciate what you do for me so much.

Do you remember that gratefulness journal I got back in January? You said I should try to write down three things a week that I am grateful for. I write down at least two things every day. I can fit five days on every page. Do you know what I am grateful for on every single page? You, Mom. So the going might get tough, and it might get really tough, but I know that you will be there for me for every late night phone call, and for every appointment. And I love you so much for that. So happy Mother’s Day. I hope it is the best one yet.

With all my love,

Sophie

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 Image By: Kerkez

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Why Amazing Friends Are a Gift to Those of Us With Chronic Illnesses

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It’s easy to remember the friends who didn’t last through the trials of chronic illness, and the hardships it brings.

It’s easy to remember because I always feel responsible for the loss, to a large extent. It hurts. I’m not the fun friend, always up to do anything. I’m not the friend who can always be there. I’m the friend who needs too much, sometimes. I try not to. But, I’m not perfect, and I know it.

Right now, though, I want to remember the friends who are amazing. You know the ones. The ones who never tire of asking how you are. The ones who want an honest answer. The ones who will also tell you how they are doing. Joke with you. Be normal with you. Have conversations that involve all things. The good and the bad. The fun and the sad.

Those friends are the greatest gift and they deserve to be recognized. Celebrated. Appreciated. Loved.

To all who have been there for me and have let me be there in return, thank you. I can never truly express just how much you mean to me. You enrich my life. You are an enormous part of why I feel like I have an incredible, happy, enriched life. A life full of love, joy and laughter.

I hope to never take you for granted. Friendship like yours is not a guarantee. It’s a blessing.

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How My Mom Makes a Difference With My Chronic Illness

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Five reasons I’m extra thankful for my mom on Mother’s Day:

1. She helps with every day tasks.

When the spoons have run out, I can always count on Mom for help.

Too tired to cook? My mom will whip up my favorite meal.

Can’t make it to the dry cleaner? My mom will grab it on her way home.

Whatever the dilemma, my mom is willing to take on some chores to lighten my burden.

2. She holds me like I’m still a child.

When my body is out of whack and a flare-up is raging, there is no better spot than being wrapped in a hug by mom.

I can feel the love through her embrace and it definitely makes me feel better, no matter how much pain I’m in.

3. She knows what I need more than I do.

Whether I’m debating on going out with friends or picking up an extra shift, my mom is the voice of reason I can sometimes lack.

She will be honest and tell me that doing these things might take all my energy. Or, she will encourage me to venture out when my symptoms have kept me couch-ridden for days.

4. She’s willing to put everything aside for me.

My mom has told me that I can call her to talk, even if it’s the middle of the night. She has also said she can pick me up when I’m hours away if I needed her. She has taken work off to take care of me, too.

5. She will go with me to appointments.

Whether I need to hold her hand during blood tests or she’s rocking at advocating for my health, my mom is always willing to sit through those doctor visits with me.

Moms are incredible and do these things every day for us. What does your mom do that makes a difference in your chronic illness?

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18 Real, Sometimes Messy, Often Beautiful Photos of Moms Fighting Chronic Illness

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The “throwback” photos you’ll typically see posted on Mother’s Day are moms and their families celebrating birthdays, relaxing on vacation, and gathering in the kitchen for holidays. But for people with chronic illnesses, there’s another side of motherhood that is often hidden — the days spent in the hospital, weekends entertaining themselves on the couch, and the months recovering from tough medical procedures. These are the moments we want to celebrate today, too.

We asked our Mighty community to share a photo that represents what being a mom with chronic illness is like or how their mom supports them in their own illness. Living with chronic illness isn’t easy, to say the least, and being a mom on top of that takes strength that deserves to be honored.

Here’s what our community shared with us:

1. “My mom is my everything. I’ve been living with chronic illness for 13 years. Each day I’m faced with a new challenge, but ultimately I know that whatever comes my way next, she will be right there by my side... Day after day, she goes to any lengths she can to make me feel better. Whether that’s bringing me food or flowers, crying with me until we end up laughing together (which we always do), driving me to the doctor or picking up my medicine when I’m not up to it, or just being there to listen, she always eases my pain. I would not be able to do this without her.”

girl in bed with flowers and mom next to bed

2.My husband and oldest walking me out of the hospital after kidney stone surgery #6. Being a mom with a chronic illness is hard but so rewarding. I am thankful for all the love and joy they give my life.”

man holding hands with young boy

3. “Out with my daughter because life doesn’t stop just because I’m immunocompromised. Having multiple chronic illnesses and being a mom is difficult, but my kids make it so worth it. This girl is my little nurse in training, she takes such good care of me.”

woman wearing surgical mask and teenage daughter

4. “It means your wonderful kids end up taking care of you, just like you take care of them when they are sick.”

woman on couch with two little girls under blanket

5. “My mom has been my rock, nurse, advocate, best friend and shoulder to cry on since day one! Not only is she super mom raising five girls, she also battles multiple chronic illnesses as well! I love you, Mom, thank you for everything you do!”

young woman with mom at doctors office

6. “My disability was a delivery room surprise (even though she’s said she had a feeling that something was up while pregnant). She was able to hold me for a few minutes before I was taken to the NICU and she says that I looked right into her eyes and we have had an unbreakable bond since… I remember leaving an appointment and I started bawling before even making out of the parking structure because I was scared and overwhelmed. She comforted me by saying, “I’ve got this. You don’t need to worry or stress about these decisions right now. I’m the mom, let me worry.” That meant so much.”

woman in wheelchair holding hands with mom, facing mountain

7. “I couldn’t post one picture of the woman who gave me life and helps me live every day. My mom is an incredible mother of a Lupus Warrior. She’s helped me relearn to live time and time again. To walk, eat, write, and all the simplest life tasks that we tend to take for granted. She is by my side at every chemotherapy, dialysis, surgery, infusion, transfusion, transplant, er, hospitalization, ICU and doctors appointment. For eight years she has never made me felt like a burden while being on this rollercoaster with SLE lupus and renal failure.”

collage of photos of girl in hospital and her mom

8. “No matter where we are, my mom and I always try to make the best of each situation. Here is a picture of me and her when I was hospitalized this past year for a week right before Christmas. My mom helped me through this emotionally by watching Christmas specials on TV with me, playing music and dancing around in my room, as we are both dance teachers, and decorating my room with Christmas trees… We have fun no matter where we are and no matter what the situation, because we make the best of it together.”

teenage girl and mom in hospital room

9. “Let’s just say many days I cry… I cry because I feel I’m not the mom my son deserves. I’m not the ‘ideal’ mom. I’m not all there 24/7. There is days I make him sleep longer than he should. Days he doesn’t get to see sunlight. Days where he doesn’t leave the hospital because I am stuck here. But. It is these moments right here, that right then I realize he still loves me, still wants to be with me, even if that’s just sitting in my lap.”

woman with baby in hospital bed

10. “My mother has been my rock throughout my journey with ulcerative colitis. She visited me every day during my three hospitalizations, accompanied me to colonoscopies, and as pictured here was with me when I had my surgery to implant my chest port. She stayed in my apartment with me when I was too sick to take care of myself, fed me, bathed me. Never once did she complain about losing sleep to make sure I was OK… She is my hero and my champion.”

girl and mom hugging in hospital bed

11. “Stepmom here — it’s too risky for me to have bio kids. At 3, he’s too young to understand what it means when I say I’m sick a lot, or why sometimes I’m on the floor. But if I tell him I’m hurting he’s always ready with a gentle hug. And sometimes naptime is a mutual thing.”

woman sleeping with toddler on chair

12. “Just one of many moments captured of my precious girls, supporting their mom, by joining me at Orlando’s Chiari Walk a few years ago. My son would have been there, but was serving his country. They are what keeps me going…my world.”

woman with three grown daughters at fundraiser

13. “My mom means the world to me. The amount of crap she puts up with is just remarkable. She takes me to my appointments, my infusion, orders my medicine and countless other things that I shouldn’t have to depend on her for at 22 years old. She tells me time and time again how amazing I am and how I’m going to come out of this stronger that I was before. I know it must be killing her to see me like this, but she puts on a happy face. She’s the bravest woman I’ve ever known.”

young woman wearing hospital gown and mom next to her

14.My boys are such a source of joy in the midst of my 20-year battle with Crohn’s disease. They visit during every Remicade infusion, they bring me breakfast in bed when I can’t walk, they hold my hand through the pain. I was afraid that my Crohn’s would rob them of a ‘normal’ childhood, but instead, it’s given them little hearts of grace and understanding. I am so lucky.”

woman in hospital bed with two young boys making silly faces

15. “This is me and my beautiful babies. There are days when all I see is the duvet and plenty of cuddles but on the good days we explore together and it feels like a little victory!”

woman in power wheelchair outside with boy on bike and holding young child

16. “We spend most days with me laying on the couch. My 2-year-old brings me books to read to her and toys for us to play with. One day a week we will do something fun like the park, the zoo, or even just shopping. I feel guilty when other moms ask me where we ‘usually go to play.’ But baby girl is so very happy!”

toys on bed

17. “It means I am raising a child who is sympathetic to my pain and loves being Mom’s helper. A daughter who sits on my lap on weekends, because she knows that’s all I can do some days. It also means she’s growing up faster than I anticipated, because she has no choice.”

woman sitting on couch with young girl and dog

18. “I have Crohn’s disease and my son wrote this on me for a paper towel when he was 5 on a day that I was extremely sick… so I decided to tattoo it on my arm of a reminder of how sweet my boy is.”

arm with tattoo that says in child's writing i loev mom
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What People Don't Get When They Say I Should 'Just Accept' My Illness

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One of the easiest ways to make me angry these days seems to be telling me that I just need to accept my lot in life, illnesses and all. It makes me so mad when people say stuff about acceptance! And the thing is, I know they’re probably right. But it’s always “just” accept it. No big deal. Just do it.

A lot of the things people say that upset me are sometimes more upsetting because of the way that they’re said. I think chronically ill people probably know what I’m talking about. They say I need to accept being sick as if it should be simple. It’s often a flippant comment made with no real comprehension of everything chronic illness entails that needs to be accepted. It doesn’t feel like they have any right to tell me to accept something so horrible that they can’t even fathom it. Their words seem to be said so lightly.

It’s entirely possible that this is me projecting my anger onto what they’re saying. A lot of the time it’s my mom telling me this, and she understands what I deal with better than nearly anyone else. I’m obviously not mad at her for telling me I need to try to accept being sick; I can see where she’s coming from, and it makes sense, I suppose. And it’s surely not her taking this lightly, but more others who aren’t around me as much, who are still well-intentioned, but because they aren’t around, they don’t have the whole picture. That’s what makes their genuine advice hard to take and be grateful for. Which isn’t there fault, but nonetheless it’s frustrating for me!

I think I’m more mad at the sheer mass of devastation that’s occurred that I’m supposed to “just” accept than at anyone trying to advise me to accept. I’m more mad at my complete inability to convey how much being sick has destroyed me and why this makes it so difficult to just accept. So much of it is internal and invisible. It’s as though nobody has any idea so much destruction has occurred, and I don’t know where to begin to explain or what words could do it justice.

My world has been shattered. My health, the foundation on which we build our lives, has been ripped out from under me. It’s as though every second the ground beneath my feet is shaking as if there’s an earthquake, and yet the people right next to me can’t feel it. They have no idea what’s happening or how uncertain every single part of my life has become from minute to minute. They have no idea how difficult the constant uncertainty makes every little thing I do. They don’t even notice when the ground splits open and swallows me whole until I finally cry out for help.

I feel like it’s not fair for me to accept all of this without first having somebody even understand exactly what has happened to me and how much I’ve been through. I feel like I need acknowledgement. I need somebody to say, “What you’ve been through is awful beyond words but it’s OK to let it go now.” I don’t know. Maybe various people have said this to me in different words throughout the years and I just haven’t been able to accept that it’s OK to accept (if that makes any sense)!

My therapist had an interesting take on this idea of acceptance. He thought it wasn’t what I should be focusing on right now. He thought what I need to be working on at this time is not acceptance but admittance. He thinks that I need to stop fighting being sick (which is also something my mom has been saying for a long time, to give her the credit she so deserves!), and get to the point that I can admit that I’m sick, I’m going to stay sick, and that I have no control over that.

As I’m writing this, I think I just realized what it is that I really need: I need to be able to admit that it’s OK to accept being sick. Let me try to elaborate… the difference between admittance and acceptance I feel is subtle. Admitting seems to be typically thought of as confessing or acknowledging, whereas accepting is more like believing. Admitting seems to me a more reluctant act, where acceptance is more willing and whole-hearted. What I need is to allow myself to realize that it’s OK to be OK with being sick. Accepting being chronically ill doesn’t mean that I have to like it or anything about it, it just means that I can surrender the weapon that is anger I’ve been wielding against others and myself for so long, and recognize that this is my life. I can stop fighting it.

Yes, I realize this is exactly what I said my mom has been telling me! She is a very wise woman and I do try my best to listen to her advice. But I’ve realized there are a lot of things in life that people have to kind of realize on their own time through first-hand experience. No matter how often you try to tell them, they have to experience things for themselves, and I feel like this was one of those things.

But you’re not supposed to be OK with being sick, right? Why would anybody want to be? And you’re supposed to always be striving to get better and surpass your limitations and overcome disability and blah blah blah more crap society tells us about not being OK with ourselves. Disability is something to distance yourself from, not to embrace. Sickness is something to be cured, not to be alright with.

Now I’m not saying I’m not always trying to get better (because I am, ask anyone that knows me well), or that I enjoy being sick (did you read the first part of this very angsty essay?). And I’m not saying that you should be pessimistic and never think you’re going to get better. I’m also not saying we should stop trying to cure sickness. I’m saying that it’s OK to be OK with who you are right now, limitations and all. Until we can cure chronic illnesses, it’s OK to accept that they’re here to stay and that they’re a part of you, even something that defines you. It’s OK to be realistic about being disabled and being chronically ill.

You’re allowed to accept yourself and your life the way it is, even if others will never understand that (and I realize this lack of understanding is extremely difficult to deal with, but that’s why we have this website and each other!).

Now I’m not saying acceptance is going to be easy or that I even believe it’s necessarily fully possible. I personally feel that grief from loss of health can be ongoing and has no time limit. Not to say that you have to keep grieving or that you can’t have periods of acceptance (and yes, grieving the loss of your health is very real for any healthy people that didn’t realize that happens — this is why acceptance is a problem in the first place!). But to me it seems like the unpredictability and consistent inconsistency that is life with a chronic illness can upset any acceptance that has been reached — like when you get a new symptom, have a flare-up, or something like that — and can cause the grieving process to start again.

Again, that’s my opinion and I think it would be pretty great if I’m actually wrong and there is some sort of ultra-acceptance that transcends all past, present, and future complications.

But if you haven’t gotten there yet like me, I feel striving for even temporary acceptance is a worthwhile goal, even if it doesn’t last. My mom has definitely been right about needing to stop fighting what my life is. I’ve definitely been fighting admitting that this is my life for right now and possibly forever because who would want to live like this? Choosing to accept it seemed wrong. So I never felt like it was OK for me to accept being sick. But it’s beyond my control and that’s something I have to admit. Realizing that I didn’t even feel like I was allowed to accept being chronically ill and admitting that acceptance is actually OK was a necessary and important first step for me on my long and arduous journey towards acceptance. Hopefully you might find this helpful as well!

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What It Means to Live With a 'Cocktail' of Chronic Conditions

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What do I wish people understood about my life?

Well, first of all, I wish they knew that when I say I’m sick it’s legit, as in it’s a fact. When I say that I live in a bungalow, there’s no room to question if it is indeed truly a bungalow, and so it should it be with sick. Moreover, like many others who manage chronic illness, I have a cocktail of diagnoses.

I have bipolar disorder, which is essentially invisible and at my discretion to disclose. I also have celiac disease, which is invisible and at my discretion to disclose (something I do regularly for my own safety). I also struggle with complications from going 15 years without a celiac diagnosis, one of which is small intenstinal bacterial overgrowth (SIBO), and it too is invisible and at my discretion to disclose. Finally, I have polycystic ovary syndrome (PCOS), which is mostly invisible — I say mostly because it does give me a pretty impressive goatee, but few people would recognize this as an indication that my body is filled with cysts — and of course, it’s at my discretion to disclose.

In case you’re wondering, that paragraph was as painful to write as it must be to read, but I hope it helps you understand why I’m reluctant to mention the space that sickness occupies in my life. It’s impossible to understand how I feel without knowing the full range of dysfunction happening in my body/mind, and more importantly, there’s no understanding without appreciating the degree to which these illnesses impact each other. Getting glutened doesn’t just put me in the washroom, give me migraines, inflame my joints and leave my body feeling drugged by exhaustion, it can send me into a state of depression that will last for months. The inflammation in my gut affects my body’s ability to absorb nutrients and that affects my hormones. Cue the PCOS beard and mood swings.

Because none of the particular components of my “cocktail” are visible, I bear the responsibility for helping others understand what I’m going through. Sometimes I do a better job of this than others, because sometimes the depression is winning, sometimes it’s the mania, sometimes it’s a migraine, and sometimes I’m just doubled up in pain because the bacteria in my guts hate me (thank you, SIBO). I’m really lucky if it’s only one thing at time.

It’s awful to admit, but sometimes it’s much easier to let people think the worst of me rather than describe what it means to live with my cocktail. My struggle is exhausting, and explaining it to people who may or may not dismiss me as a whiner is just one more thing I don’t have energy to do. I realize people can’t help you if you never let them know you need it, but I also have enough experience with disclosure to know that it doesn’t always have a warm and fuzzy conclusion.

I’m just learning to connect the dots between my conditions, but thinking of my struggle as a cocktail helps because not everyone can understand how exponentially more powerful my symptoms become when they intersect, but most people can wrap their head around the power of a Long Island iced tea. And it’s a lot easier to tell people you live with the Long Island iced tea of chronic illnesses than to give the full inventory like I did above.

I could stop here, but there’s one more thing I wish people realized: knowing what’s in your cocktail is a privilege. We’ve all drank punch without knowing what’s in it, and that nastiness is what it’s like when you live with the symptoms of chronic illness without the benefit of a full diagnosis. I know a lot about this because for a long time I thought all the symptoms I experienced fell under the umbrella of bipolar disorder. I thought I had the single malt scotch of health problems and that I also just happened to be in possession of a bad stomach.

It can still be a cocktail, even if you have yet to discover the recipe. People can still be sick even if they don’t have a banner to hold up with their diagnosis. And if someone you know is chronically ill or living with symptoms of chronic illness but doesn’t talk about it, know the struggle is still real. They might be tired of feeling misunderstood, they may not have found a way to talk about it that doesn’t leave them feeling upset, and they may be scared to talk about what’s happening to their body/mind because they don’t have a name for it yet and they don’t want you to dismiss it as made up.

Even though I’m writing like a big bad advocate, my cocktail is something I discuss only with a small group of people. Many people are aware that I have one or more chronic illnesses, but I am guilty of letting people think that because I have a doctor and prescriptions I don’t struggle to keep it all under control. If there’s a lack of understanding about what it’s like to deal with my particular combination of illnesses, I’m complicit in that. Fighting to be understood by strangers, and even those in my immediate social circle, is rarely my top priority; fighting pain and my symptoms comes first. I deserve understanding as much the next person, but it’s also true that I don’t owe the world an explanation for why my life looks the way it does. The people who accept me don’t need all the reasons, and the people who don’t wouldn’t be persuaded by them anyway. That leaves a bunch of people in between, who simply didn’t know. Now you do.

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