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To the Friend Who Didn't Tell Me You Have a Chronic Illness, Too

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Dear Friend,

I think you didn’t tell me about your chronic illness because I didn’t create a space for you to share more about your whole self with me. I wasn’t fully open and honest with you, either — I’m sorry. Living with an invisible illness isn’t easy, and sometimes the shame and stigma associated with our conditions hinders our ability to be forthcoming about this important aspect of our lives. But I believe our silence perpetuates the invisibility of our illnesses.

I think you didn’t tell me because you’re so used to, and good at, managing your condition on your own. I am, too! I wonder if you thought I’d judge you. I wonder if you thought I wouldn’t believe you. I wonder if you thought I’d be scared.

The truth is, I was more scared when I didn’t know how to take care of you that one night after we got home from our adventures downtown. When you stopped responding to me, I wasn’t sure if I should give you juice, call 911, get your test strips, or just wait for you to feel well enough to tell me how I could best help you feel the ground beneath your feet again.

When you live with a chronic, yet invisible illness, you become accustomed to putting up a front. With me, though, you don’t have to worry about that. Instead, talk to me! Please. Tell me the signs and symptoms that I should be look for. I need to know what I should be aware of in case there is an emergency when I’m with you! In return, I’ll pledge my friendship, unwavering support and reciprocity.

When you share your experience with me, you can expect some comical commiserating, and a whole lot of empathy. You can expect me to ask you some follow up questions so I better understand your lived experience. You can anticipate that I will say “I can relate,” and share my own experiences, too, so you don’t feel too overly exposed or alone.

Here are some things I might share:

I’ll share that sometimes my pain is so distracting I notice everything! For example, when my pain keeps me up at night, I often debate which is the lesser of the many evils, the constant blowing from ceiling fan in my room or the discomfort from my value brand sheets.

I’ll surprise you by telling you about my “sixth sense” — the ability to sense vibrations. Then for fun, I’ll shock you by telling you that you have a text message when your phone is across the room. To be honest, vibrations really hurt me. So, after that I might ask you to please keep your phone on silent when we’re together.

I’ll explain that sometimes my pain is so sudden and severe that I retreat quickly — even from those who are closest to me. I’ll be physically present, yet mentally I’ll be somewhere far, far away. I’ll explain that without some sense of relief, I may not even be able to articulate what I’m experiencing or how others can help me. And then while I’m feeling good, I’ll share some tips and tricks for how I’d like you to be my friend in those excruciating moments. Pro tip: Try to distract me!

I’ll also share that when the pain subsides, momentarily, I have a really difficult time imagining it actually hurt that bad in the first place. I probably won’t want to talk about it.

You’ll also need to know that I’m a really like making plans, but sometimes the plans will change because there are times when chronic pain wins — it’s just my reality. Therefore, I’ll ask for your patience and understanding, and offer this cliché remark — “It’s not you, it’s me.”

Finally, I’ll ask for you to please believe me and respect me. I’ll remind you that I’ll always extend to you the same respect and acknowledgement.

Revealing this aspect of my life early and often isn’t a call for attention or praise. And, if you share your history of chronic illness with me, I won’t think you’re looking for attention, either. The fact is, if you’re going to invest in being a part of my life, and vice versa, you need to know when to worry and when to let me figure it out.

I hope in the future you’ll feel comfortable sharing more about yourself with me. If you tell me more about your chronic illness, it will help me continue to learn how to be your friend, support you and grow our relationship.

I realize vulnerability is hard work, and sharing a part of your story requires bravery and courage. I also know you’re incredibly strong. I’m here to listen whenever you’re ready.

Sincerely,

Your “Spoonie” Friend

Follow this journey on I’m Probably Overthinking This.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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When Life Is Like a Game of Monopoly and Chronic Illness Is My Opponent

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Last night, I achieved what felt like a win at my weekly swimming class. Feeling proud, I posted on Facebook: “Viki 1: Chronic Illness: 0.”

This morning, I awoke with clear evidence of the worst sleep I’ve had in awhile… bed a scrambled egg, myself in pain, with double vision… I did not want to leave the safety of my dark room.

It confirmed to me what I had decided the night before, after I wrote that post.

I am living a game of strategy and chance — a lifelong game of Monopoly.

And Chronic Illness is my opponent.

It’s strategies are to eat my mind, play with my vision and coordination, attack my digestion, squeeze my lungs and heart, freeze me and send my senses afire. To manipulate my body into pain, discomfort, stiffness. Just to name a few.

My strategies are stillness, diet, exercise (yoga and tai chi count in my manual), mugs of warm water, sunglasses, layers, Neko Atsume and cuddles.

Chance Cards include genuine enjoyment, the energy to pursue hobbies like coloring and gaming, and a test or treatment to try. Or, anything outside my control that can increase the challenge of the game.

And Chance is also, for both of us, a roll of the die. Which symptoms will we have today? Will there be a Property to purchase?

All my Properties are medical. Prescriptions, equipment, treatment, appointments, tests. These are also expensive. I haven’t noticed my opponent spending, unless it uses my energy as currency. And come to think of it, I wonder if they’re actually the self-nominated Banker. And cheating. When I pass Go, I don’t collect $200, I just keep going. Although occasionally I do go straight to jail… the hospital.

Community Chest is a good one. These cards are my people — those that empathize and offer support in any way. It means I’m not playing the game entirely alone. And faith… but that’s a topic for another conversation.

But my opponent draws on its own team, too. It’s uncertain how big it is. Like so many chronic illnesses, mine is invisible. So far, I know there are two key Illness members: Physical and Mental. Physical Illness is evasive, unidentifiable. “It” could be “them.” Tests all show me to be an essentially healthy individual. Just some odd markers that don’t trace to anything specific. Mental Illness I can name, and “it” is “them:” Depression and Anxiety.

There have been times when I have been so tempted to throw the board and never play again. But I don’t. Somehow, I still maintain just enough strength to keep rolling the die and sliding my spoon around the board.

Today is another day, another set of turns. Chronic Illness and I will play for as long as I possibly can. Because for me, I have decided, life goes on despite the game. And I live in spite of my opponent.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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When You Need to Take Care of Someone but Don't Have Any 'Spoons'

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This past March, my husband fell ill. Really ill. We knew something was up, so we went to the doctor that morning, then the emergency room, and waited. And waited. And waited. Finally at almost 10 p.m. we were called back, where a doctor did an examination. They did some scans and what do you know: My husband’s appendix was a ticking time bomb. They called the surgeon, who took him into surgery within a half hour of the scan.

He was nervous, so I comforted him. I called my mom who lives in town to come sit with me while we waited. I called my in-laws who live three hours away to let them know, and my father-in-law drove up so he could see him when he came out of surgery. And then, I waited some more. I have been to the ER many, many times as a chronically ill patient, usually for fluids, a bad reaction to a new medication, or sometimes even a dislocation I can’t get back in (anyone else think they should give out stamp cards? Nine visits and the 10th is free?) I’ve gone into surgery. But this was completely different. I wasn’t the one who was sick. It was my loved one.

For the first time, I experienced the anxiety and frustration of not being able to do anything to make him feel better. That was usually my husband’s job. My job was too be sick. I hated being on the other end of things. All I could do was sit and wait. He came out of surgery, no complications, and was told to be on bedrest for a few weeks. He came home and felt awful, as one does after having an organ removed. He couldn’t sit up by himself, or reach the side tables by the bed. And then I saw the bigger picture, the biggest role reversal: He was sick, and I had to take care of him. I set alarms for every three hours and 45 minutes day and night so he could stay on top of his pain medication. I got him water, food and pillows and helped him take a shower — all of the things he usually did for me. And for a healthy person, that is exhausting. But for someone who is chronically ill? It is nearly impossible.

My husband was patient and kind, never demanding or anything of the sort, and I could see how much he was struggling. So I pushed myself. I pushed beyond my limits, and kept pushing, until I finally broke down. I realized my husband not having any of his “spoons” didn’t magically give me more. I had the same number of spoons as before, except now I was stretching them, and borrowing all the spoons from the next day to keep up. I didn’t want to ask for help, I wanted to take care of my husband as he does for me all the time.

I thought admitting I needed help meant I wasn’t a good wife. But one day I broke down crying. My whole body hurt, I was fatigued, I had negative spoons to pull from, and I just sobbed in the shower, trying to figure out how I was going to keep going for the next two to three weeks. How was I going to take care of him when I couldn’t even take care of myself? So I asked for help. I called my mom, and she came over to help with some things like preparing food that could be heated later, doing laundry and the dishes. My sister and brother also came to help at alternating times, getting my husband water or medicine or helping get his laptop up or whatever, so I could lay down and rest. So I could take care of me.

I realized then that as a “spoonie,” it takes a village. You can’t do everything yourself, you are not a superhuman, and just because your loved one is ill doesn’t mean you are all of a sudden better. In fact, you will make yourself worse if you just keep pushing through. You will burn out quickly. I am so blessed I had family in town who could help me, and I am glad I reached out for help. I am thankful I realized I wasn’t alone. Never feel ashamed of asking for help, because those who love you will want to support you, and will be glad you trusted them enough to ask.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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5 Difficult Choices People With Chronic Illnesses Face

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Being sick, especially chronically sick, is hard work. One reason for this is that we must constantly assess every aspect of our lives and how every move we make will change everything we do. This requires us to make tough choice after tough choice.

Here are five choices we often face.

1. Do we push our bodies to the limit or do we play it safe?

Sometimes the desire to be “normal” is so strong that we may talk ourselves into pushing our bodies into doing what they can’t, and shouldn’t do. An example of this for me is going out to play in the hot sun with my nephews after an even hotter, hard day at work. When I get home from my hot work environment, no more heat is tolerable to my body. I should play games with the boys inside, but often I don’t. So because of this I will be in a defiant mood with myself and just tell myself that I’m tired of feeling bad, so I’m just going to pretend that I don’t. What I get for this attitude is at least a week of increased pain and killer headaches. And, if I’m unlucky enough,  a hospital trip.

But I can’t always play it safe either. One, because my body will get used to that. It’ll expect the strict regime and I won’t have the ability to be flexible at all. And two, “normal” people are flexible, right? Right?!

2. Do we keep our health problems private or do we openly share them?

If we talk about them, some people may become judgmental towards us. And those who don’t turn away still change how they act around us sometimes. We want to be treated the same as everyone else, but if we share, or share too much, we risk losing that. But if we keep quiet about our health issues, we risk others misunderstanding what we can and can’t do.

If I keep quiet I pass up the chance of getting much-needed support. Also, I lose the chance to educate others. How do people learn anything, ever? By people talking about it.

3. Do we ignore a new symptom or tell the doctor?

If I tell the doctor about a new symptom, what will he think? Will he think I’m a hypochondriac, or oversensitive? Or maybe I am just tired of telling doctors everything. There’s always something. But it’s also possible that the new symptom is serious. We have to listen carefully to our bodies and decide.

4. Should we try unconventional or alternative therapies?

There’s really no wrong answer here. But they can be expensive and an unnecessary use of energy if we aren’t careful. But it’s also possible that they could be helpful.

5. Should we fight for our health or accept our fate?

Constant fighting is hard mentally and physically. But just passively accepting our lives are always going to be this way doesn’t feel good either. I personally like a middle-of-the-road attitude with this. I accept that my health is what it is and fight to get my health back to where it was pre-multiple sclerosis at the same time. 

These two actions aren’t contradictory. I believe you can enjoy life as a sick person. It is hard work to continually assess, evaluate and choose a course of action while already in so much pain. My wish for you all is to be as kind to yourself as you can while you struggle with these choices.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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When a Woman Swore at Me After I Parked in an Accessible Space

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I’m sitting here broken and sobbing.

I just had one of the most humiliating experiences a person can have, and the worst part? 

It won’t be the last time.

It’s a sunny Tuesday afternoon. I’ve just had my hair done for the first time in a year; my boyfriend arrives tomorrow and we are off on holiday with the family this the weekend. I’m smiling and excited as I park my van near my daughters’ school, ready to collect my children. In the playground, moms and grandmas tell me how great it is to see me, and how good I’m looking after a week or so off the radar, feeling poorly. It’s quite lovely, and their kindness and words mean the world to me when I have been feeling so low.

I collect my youngest two and meander back to the car, noticing a traffic cone on the pavement blocking my driver’s door. That’s weird, I think, while struggling to lift and strap my 3-year-old into her car seat on the road side. I become vaguely aware that a woman is ranting to her daughter, “F*cking unbelievable. Who does she think she is?” I continue trying to coerce my monkey into her straps (I can’t physically do it without her cooperation). “There’s f*ck all wrong with her. People are so f*cking lazy. What the hell is she doing parking outside my house, and could she get any f*cking closer to my car!”

She is talking about me.

I look up and she’s standing five feet away from me, glaring at me with such venom, while continuing to rant to her uncomfortable 20-year-old daughter, who is strapping her own toddler into a stroller.

My recently potty-trained daughter then had her first accident. I continue to ignore the irate woman, now mortified and bright red, and release my daughter from her belt and pop her by my van wheel to sort her out. “Now her f*cking kid is gonna piss on my car, unbelievable!” 

My daughter now notices the woman and becomes totally embarrassed. I tell the woman, “She’s potty training,” clean her up and strap her back in. I then walk back slowly around to the driver door, remove the cone blocking it, that I now realize was put there by the woman, and try to get in.

“You’d better not reverse into my bloody car!”

My van is a foot away. I am an excellent driver and maneuver my van with great skill. In 20 years driving I’m yet to dink anyone or anything. 

“I have to drive an automatic, it won’t roll back,” I mumble, now fighting back the tears, trying to retain some shred of dignity as I drive off (without hitting her car).

I get around the corner, pull over and burst into tears. 

A million things I should have said flood my mind. Why didn’t I explain that I need to park there, and point to the parking pass, and blue badge on my dashboard? Why did I just stand there and take that abuse in front of my children, when I should have stood up for myself? Why didn’t I say anything, literally anything, to defend myself?

In that moment I felt shamed, frustrated, humiliated, and like I am still fighting a battle I can never win.

I don’t look sick.

I don’t look disabled.

I am a “fraud.”

I have had people challenge me for parking in accessible spaces before, but never with such venom. The irony is that anyone could have parked where I did on the street. It was a safe, legal, free space. It’s only due to congestion that people are asked by the school not to park on the street unless they need to. There is no law being broken and no safety being risked by any single road-tax-paying driver parking in the space I chose to park in.

People need to see the profound impact that such ignorance has on the individual. It’s beyond hurtful and humiliating to have some one shouting at you that you are lazy and fake, when actually every day of your life is a battle. I experience pain and limitations that most people thankfully will not in their lifetime. I wouldn’t wish it on my worst enemy. 

I have to fight for everything.

To live. For money. For my sanity. To stay strong. To be the best mama can be. To get up. To do the dishes.

The fact that I choose to fight with a smile on my face and joy in my soul should be something to be celebrated, not something I should be publicly shamed for.

So this one is for all the ignorant people out there. Shame on you. This is how you make a person feel when you make judgments of them without having a clue about their life:

woman crying in her car
Kirstie right after the incident with the woman on the street.

I hope that face becomes etched in your mind, so the next time you loudly proclaim someone doesn’t look ill or sick or disabled, without having any idea of their private battlesyou stop yourself. Instead, smile, and continue going about your business, as I am mine.

This is me fighting back.

I am not ashamed.

And if this post exposing me at my most vulnerable, protects someone like me in the future?

Then love conquers hate.

Hope beats fear.

Kindness and compassion wins.

Follow this journey on You Gotta Have Gumption.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? Check out our Submit a Story page for more about our submission guidelines.

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To the Student With Chronic Illness Who's Not Graduating 'On Time'

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A year ago I watched most of my high school class of 2011 graduate college. Over the last week, the remaining students received their diplomas. I am genuinely happy for them, but that happiness is quickly replaced by bitterness, jealousy and anger. I should be closing that chapter with them, but my chronic illnesses don’t care about the plans I had for my life.

It will take me twice as long as my peers to finish college. This fact has caused me sleepless nights and ongoing devastation. However, when I look back on the real education I have received in the last five years, I realize I wouldn’t change my situation even if I could.

I have spent nearly two of the last five years hospitalized. There have been countless surgeries, infections, and dead ends. There were so many times where I thought we were turning a corner only to be thrown to the ground again. Each time I had to pick myself up and start over. These setbacks taught me that I am resilient, much more than bouncing back from a bad grade ever could.

I remember the night a gastrointestinal doctor came into my hospital room to discuss feeding tube options with my mom and me. Terror overtook every inch of my body.  That feeling was replicated too many times over the next five years. Whether it was while I was being wheeled into an operating room or transferred to an ICU, that fear would find its way back to me. Now I know that I can overcome anything that frightens me, because no presentation in front of the class will ever fill me with more dread that I’ve already experienced.

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Erin (left) and her sister Caitlyn.

You lose friends when you are sick. Illness isolates you from your former life and it is no longer an easy task to keep up a social schedule. For many years I hated the seclusion and felt left out. Now I realize that this was the best gift I could’ve been given. Sometimes people fade out of each other’s lives, and now I realize that’s OK. Ten years from now, I will remember that my parents spent more nights in plastic chairs than their own bed. I will remember the friends who learned how to draw up my medications. I will remember that my sister chose to spend one of her birthdays in the hospital just so she could spend it with me. When you are at your lowest, the people you need in your life won’t be the ones you hung out with at parties.

A few years from now I will walk across a stage to receive my college diploma. It won’t matter that I am older than the rest of my class. It won’t matter that I failed a test because brain fog appeared with a vengeance. It won’t matter that I had to take a semester off because surviving was more important. I will know that I am capable of so much more than any healthy person can comprehend. I will have received an education greater than any degree.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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