What I Want to Tell Well-Intentioned Friends Who Say I Look Healthier

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“Oh, no cane today! You must be feeling better!”

“You look a lot healthier than you did last week. Things must be going well.”

“Your new meds must be working. You seem to be moving pretty easily.”

Actually, no. I’m not using my cane today because my hands are swollen and in pain. It hurts too much to lean on them. I am healthier than I was last week, but only because I finally caved and started taking a steroid that makes me sick to my stomach and causes me a lot of anxiety and panic. Based on my blood work, my condition has actually gotten worse since starting my new medication, but I don’t want to admit that to you (or myself), so I’m trying to be upbeat. I’m pretending it doesn’t hurt to move. I’m really good at pretending.

These are the things I want to say when the people who care about me tell me how much healthier I look. I want to tell them that looks can be deceiving. I want to explain that my disease does not affect the same joints in the same way every time. I want to explain that my legs might feel better today, but that doesn’t mean my shoulders (or hands, or neck, or elbows…) aren’t acting up. I want to explain for the hundredth time that I’m not going to “get better” and I’m never going to “be healthy” by their standards. My disease isn’t going away. My disability is permanent. How I look isn’t going to change that.

But I don’t tell them these things. Strangely, I might if they were strangers. I might go into the whole process of describing how chronic conditions work and how my disease ebbs and flows from day to day. But for these people, they’ve already heard that story. They know that I’m “sick.” And when they tell me that I look better, healthier, stronger, they aren’t doing it because they don’t know what I’m going through. They are looking for hope. They want me to be better. I can see it in the looks that pass across their faces when they see me walk into a room without my cane, or when I dance a little to the music at work, or when I choose the stairs instead of the elevator. Relief. Maybe she isn’t in pain today.

Usually these are well-intentioned friends and coworkers who are trying to be supportive. When they tell me I am looking better, I usually take it as a sign that they are trying to be attentive to my condition. I think they are trying to be supportive and show that they care about my well-being. I appreciate the sentiment, but I can’t deny the fact that is makes my life more difficult. I wince every time I hear one of these well-intentioned comments. When someone comments on how good or healthy I look, I am instantly reminded how invisible my disease is and how hard it is to get people to understand what my daily life looks like.

When I get one of these comments, I worry what will happen tomorrow when I have to use the cane again. How will this well-meaning friend react? Will they be disappointed all over again? Will they be frustrated? When they assume that improvement in one joint means total recovery, I wonder if they will take me seriously when I express pain or frustration about a different part of my disability. Will my working legs mean they won’t understand why I can’t use my hands? The truth is, my physical appearance trumps my physical experience every time.

These are the comments I find the most painful and the most difficult to deal with. They are the comments that I have yet to find a way to respond to in the last 10 years. I want to explain. I want to make people understand that they can never understand. I want them to know that there is so much more to my disease than what they can see. But I don’t want them to think that their attentiveness is unnoticed. I want them to know how much I appreciate their desire to see me healthy. I want them to know how much I wish it was as simple as what they can see. I value their friendship and support. I value their good intentions. But good intentions don’t equal understanding.

I’m looking for a way to clarify. A way to politely and compassionately disagree. A way that doesn’t require a speech on the details of my condition. One that acknowledges the good intentions without ignoring reality.

“No, I’m not feeling better, but thank you for asking.”

“I’m feeling better than yesterday, but my health is still complicated.”

“It’s really too soon to tell if the meds are working. I’m just trying to stay upbeat about it.”

None of these quite work. None of them communicate what needs to be said. So for now, I just smile and pretend their good intentions are my reality.

The Mighty is asking the following: What’s one phrase you wish people would stop saying about your (or a loved one’s) disability, disease or mental illness? Why? What should they say instead? Check out our Submit a Story page for more about our submission guidelines.

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When a Cashier Noticed How Painful Shopping Was for Me

As a young person with a mostly invisible illness, I have heard my fair share of comments that other people (mostly strangers) have made about my condition. Sadly, many of these are negative and, unfortunately, I know that many other people with health problems also experience these unpleasant remarks that stem from a lack of awareness and understanding. What hurts the most about these interactions with strangers is that they can really bring me down, especially on bad days. And, oddly enough, on a bad day, I can already feel pretty low.

What is a bad day like for me? Maybe every breath is a shallow, deliberate chore, as the stabbing sensations left over from a recently dislocated rib or two take a while to abide. Perhaps it is one of those days where I have massive amounts of pain pulsating through what seems like every inch of my body, impervious to any medication or other intervention, leaving me incapable of what seems like most everything, even comprehensible thought. Maybe I’m experiencing a flare-up of my brain and spinal cord issues, which leaves me with weak legs and slightly unresponsive arms, making every step feel as if I’m walking against the current of a deep stream, combined with the slow, difficult motion of dragging the left side of my body slowly to catch up with my right. There are days where I experience all of these symptoms and many more, all at the same time.

Sometimes, the most difficult thing about these rough days is the emotional turmoil that comes with them: the pain of having to give up the things I once loved and lived for and the realization that there are many other things I will no longer be able to accomplish. On a day like any of those, I grasp desperately onto anything that can make me smile, that can return any amount of happiness or normalcy into this life that can look fairly bleak in the moment.

The most difficult and painful part of a bad day is when the cruel words of a stranger flutter in through my ear and very quickly destroy the little bits of happiness I was managing to cultivate. Suddenly they come crashing down like dominoes all around me, diminishing me to a simple pile of wreckage. They say that words can never hurt you, but the thing about the sticks and stones paradigm is that when your bones are already fragile, hurting or broken, what you live off is words. When a heavy is word placed on top of an already fragile body, it can wreak all sorts of havoc.

The great thing about words, though, is that they aren’t merely capable of destruction. They can become the mortar that holds my fragile self together, while an accompanying smile acts as a bolster here and there. For this reason, the comments from strangers that really stick out are the ones that show pure compassion and acknowledgement of my struggles. What is most touching about these heartfelt, inspiring comments is that they come from people who truly show they care, whether they are strangers with whom I only interact with for a few minutes, or lifelong friends.

The interaction that stuck with me the most happened last summer. At the time, I was recovering from my spinal cord being sheared by my vertebrae and I had just transitioned out of a wheelchair. I took a trip to the grocery store and was feeling pretty good to start as I used my walker to make it inside, but by the time I had gathered my four items and made it to the checkout counter, I was exhausted and feeling fairly sick. The cashier, a young guy, probably only about 15 or 16, greeted me and started to ring me up. I was sitting on the little seat of my walker and carefully loading the scanned items into a bag when he said, “It is really awesome that you’re out here doing this.”

A bit shocked because no one has ever really said that to me, especially about going to the store, I turned to him. His eyes were just shining into mine, showing how much he meant his words. I started to smile and his eyes sparkled as he continued, “It must be really hard, but you’re doing a great job.” I nearly had tears of joy in that moment and I feel like I couldn’t have thanked him enough for such a compliment. I look back to that moment on bad days and I feel as if I shine a bit brighter. Not only was my pain acknowledged, but my accomplishments as well. This recognition of how difficult some things are for me made me so proud of my body. Look what I can do! It hurts, it took all of my energy, but I did it! And someone noticed, and did so with so much sincerity in their voice and kindness in their eyes!

Most of the time the world assumes that I should be able to do “simple” things like stand, walk, lift a carton of milk, hold a pen, all because I do not “look” frail. In that world where I have faced judgement for my inability to do some things, scorning looks and comments on my “laziness,” most of my struggle remains unseen. The reason for this is because the things that I see as massive barriers or accomplishments many other people don’t even have to think about doing. So it came as a complete and utterly uplifting fact that out in this fast world of grocery stores and tasks that need to be done, someone acknowledged the difficulties of the world I live in.

Because of how much it meant to me, I always try to pass along a kind word to help someone. Even on a bad day, I know my words are still strong and capable of making someone smile, and that is something I will always be able to do.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. Check out our Submit a Story page for more about our submission guidelines.

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'Chronic Confessions' Blog Holds the Secrets of Those Living With a Chronic Illness

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Would you share your deepest, darkest secret about life with a chronic illness online?

Over 1,000 people have on a Tumblr blog, “Chronic Confessions.” The blog – which was founded in July, 2015 – anonymously shares user-submitted posts about the ups and downs of living with a chronic condition.

Confession 222

Confession #222
I’m in so much pain and I’m terrified of going back to the doctor just to have him write it off as another symptom of my chronic illness…

In less than a year, the blog has received 1,300 “confessions,” and posts new confessions five times a day.

According to the blog’s frequently asked questions, the blog welcomes posts from anyone who identifies as being chronically ill, including those living with a mental illness.

Confession 1,256

Confession #1,256
The first thing I do every day is give up

“Chronic Confessions” is run by an anonymous chronically ill 19-year-old who goes by the Tumblr username “tintinnabulary.” The blog is meant to be a safe space for people to “rant and reveal” their emotions. Confessions cover a wide variety of conditions including endometriosis, interstitial cystitis, rheumatoid arthritis, bipolar disorder and postural orthostatic tachycardia syndrome (POTS).

Confession 731

Confession #731
My biggest fear is not heights, spiders or small spaces. It is fainting and peeing myself in front of other people. I have POTS and IC, and sooner or later it will happen, and I just wouldn’t be able to handle the embarrassment and the looks on peoples faces. I know everybody says that illnesses are not out fault and we shouldn’t be embarrassed, but I can’t help feeling otherwise.

Contributors range in age with posts featuring a wide variety of life experiences from high school to parenting, and even managing a condition for decades.

You can read more confessions below and on the “Chronic Confessions” blog.

Confession 1,143

Confession #1,143
I feel like I cannot discuss my BPD along with my chronic physical illness after a person with bpd in the spoonie community admitted to be faking chronic illness stuff. I’m not faking but I feel like talking about my bpd would make everyone think I am after what this individual did and that it just added to the stigma. bpd is hard enough but being chronically ill too makes it so much worse.

Confession 507

Confession #507
Sometimes I feel like I have no right to complain. I have RA and have since I was 8, but it’s not as bad as it could be. I have no joint damage, not physical deformities, I can do so many things that others with RA can’t. But I’m so tired of my pain being invalidated on the basis that it could be worse. I’m not able bodied, but I lack the exhaustion to be a spoonie. Chronic pain and a limp that keep me from ‘normal’ but I still don’t belong because my pain is relatively well managed.

Confession 213

Confession #213
On good days I feel unstoppable. On bad days (like today), the whole bed ridden-missing class/tests-persistent/non-stop pain thing, I feel like a complete failure. Chronic illness and debilitating pain really wears away at your soul after a while of prolonged bad “days.” Independence is everything to me, when I don’t have it I feel completely useless.

Confession 1,299

Confession #1,299
I’ve told my husband I’m not ready for a second child because I am enjoying the first one too much. The real reason is I’m worried my Multiple Sclerosis will catch up with me sooner rather than later and I will ruin two children’s childhoods instead of just one.

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To the People Who Ask What I'm Doing With My Life

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To the person who asked me what I’m doing these days,

As a young adult at university age, society expects many things out of me. They expect you to be well on your way to a degree. They expect you to be employed. They expect you to have a serious significant other. They expect you to be either moved out or on your way to moving out. So when it’s time for a family event, I personally always know what questions are going to be thrown my way. Those include “So what are you studying?” or “Do you have a man in your life?” After saying that I’m not studying at the moment, the next question that comes is “Oh, so are you working?” and this is usually when I get a sinking feeling in my stomach and shame washes over me… because the answer is no.

I have spent the last three years battling multiple chronic illnesses. It all started with fatigue that became more debilitating as each day went on. Then came pain, strange neurological episodes, and a long search for a diagnosis. My days did not consist of going to school. My days consisted of hospital visits, doctors appointments, and test after test after test. They consisted of fighting to stay awake, and pushing to do what to healthy people would seem like everyday tasks.

I have looked on longingly at the lives of my friends. I have yearned to be studying something I enjoy, and I have felt envy watching them go out on weekends with the friends they’ve made in their classes or at work. I have watched them blossom and become amazing young adults. I have wished I was them.

I try to remind myself I’m doing my best. I am handling more than I ever thought I could. I am walking better than I was months ago. I am staying awake for hours more than I was last year. I am fighting.

So the answer is yes, I am working. I am working every single day to stay standing. I am fighting every day to keep my spirits up. I am hoping every day to one day have a great career that I love and can handle. I do not have a man in my life. Being sick and stuck in the house a lot, I don’t have many opportunities these days to meet new people, but I know my day will come. The truth is, being chronically ill takes up a lot of time. It may seem like a life of laying around and doing nothing, but that is far from the truth. It’s a full time job and it takes a lot of work. So when I tell you I’m not working or studying you may be thinking, “That’s so sad/lazy that she’s not doing anything with her life.” But that is far from the truth. I do have a job. I’m a fighter.

Follow this journey on The Pincushion Princess.

The Mighty is asking the following: What’s one phrase you wish people would stop saying about your (or a loved one’s) disability, disease or mental illness? Why? What should they say instead? Check out our Submit a Story page for more about our submission guidelines.

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To the Doctor Who Told Me to 'Be Thankful' for My Diagnosis

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After spending a day in an ambulance, lying in the ER, hooked up to drips while you ordered test after test, I was finally admitted to a ward. Having spent quite a lot of time in hospital over the last few years, I was used to the exhaustion that followed hospital admissions. I was also used to the excruciating pain that followed endless tests, so when the pain started, it wasn’t a surprise.

I have quite a high pain tolerance, something you need if you’re going to live with this problem, but when the pain reaches this level, no breathing exercise or mindfulness is going to help or stop the pain. The nurses all know when this starts, it can take hours to pass, even on painkillers, but they know I need my usual concoction of painkillers to make those hours bearable. The other doctor, who had come to know me from all my admissions, came and knew exactly what I needed. He prescribed the usual and reassured me it was going to be OK, that he was going to help me get through this. He was a lovely doctor who cared about his patients.

That episode lasted seven hours. Seven hours of electric shocks down my spine, burning in my thigh, and severe back spasms. I was numb from my thigh down, no movement in my right leg and had lost all control of my bowel and bladder. The nurses were so nice, coming in to watch a movie with me in the hope of distracting me, but they knew we just had to let it pass.

You came in during your usual morning rounds and came straight over to me. You aren’t my consultant surgeon, but you were the surgeon who had control of my care until I got transferred to my children’s hospital. “What was all the trouble last night?” you asked. “You have to learn to cope with pain better. You should be thankful that you don’t have a serious condition. You should be thankful for your diagnosis.” You then prescribed more painkillers and left.

Learn to cope with my pain better? Be thankful?

I have always had a positive attitude towards my condition, and I realize things could be a lot worse, but to tell me to be thankful for my condition? Be thankful I may never walk the same way again; that in the last two years I’ve had to learn to walk three times; that I’ve spent six months in the hospital having operations, minor procedures, tests and every type of therapy under the sun.

I’ve had my teenage years taken away from me. While my friends were out partying, I was stuck in the hospital watching all the Snapchats of them. I missed two years of school but have still managed to take my state exams. I have been separated from my friends and family in a hospital five hours from my home.

How would you like being told at 15 that a sport you were considered good at and had worked super hard at was no longer an option because you’ve no control over your foot and one knock could mean more surgery and learning to walk again? It was my life, and to be told I can’t do it anymore broke my heart, but still you told me to be thankful.

At first I was just angry, but as the day went on, I started to calm down and think…

Mary with a service dog in the hospital

I am thankful for all the brilliant people I’ve met during my hospital stays. I’m thankful for the nurses who sat with me when I needed a shoulder to cry on. I’m thankful for the doctors who cared about me and believed in me. I’m thankful for the physios who pushed me to my limits and got me walking with a crutch and splints. I’m thankful for all the play specialists, teachers, volunteers and friends old and new who helped me get through this and made my home from home a happier place.

But most of all, I’m thankful for having the strength and determination to get through this. It would have been a lot easier to sit back and feel sorry for myself, but instead I was determined not to let this condition control my life. I may not be able to do things the way I used to do them or go to as many discos as my friends, but I’m going to make the most of any opportunity I can.

And do you know what? I am thankful for my condition because it has made me a stronger person who takes nothing for granted and makes the most of every day.

To the doctor who told me to be thankful for my condition — thank you for making me appreciate the people around me who support me and believe in me. You made me realize we may come up against people who will try and put us down, make us feel bad about things that are out of our control, but people like that aren’t worth it. I’m a stronger person than they’ll ever be.

To anybody else who has ever been told to be “thankful” or is in pain — keep fighting. You can do this! You’re stronger than any person or illness you’ll ever come up against. As long as you believe in yourself, you’ll find others who also believe in you.

As Dory in “Finding Nemo” says, “Just keep swimming.”

The Mighty is asking the following:  Tell us about a stranger’s comment about your (or a loved one’s) disability, disease or mental illness that has stuck with you for one reason or another. Why has it remained significant to you? Check out our Submit a Story page for more about our submission guidelines.

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Dear Healthy Me: I Forgive You for Hurting Me

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I miss you. Not a single day goes by that I don’t think about you or the life you had before you got sick. You used to leap out of bed with enthusiasm each morning, eager to start your day. It’s OK that you’re moving a little bit slower now. Life will patiently wait for you. 

I loved your fearlessness in wearing bright, multi-colored outfits. Your image reminded me of a happy rainbow. Although dressing flashy isn’t as comfortable now, I’m proud of you for continuing to wear your cheerful colors… even when your body told you not to. Life is hard, but you’ve always tried to find the rainbow after every storm. Nothing has changed.     

Your favorite quote was, and still is, “Live well, laugh often, love much.” You shared that verse over the years with others when they were feeling down. It’s sentimental that they are now sharing it with you. I love that your chronic illness didn’t change your character, and it never will. Nothing has changed.

Showing your vulnerability to others, whether you felt sick or healthy, is a gift you’ve always treasured about yourself. You still have a contagious laughter that fills up an entire room. You’re finding your way like you always have, and your strength never ceases to amaze me. Nothing has changed.   

Life seemed complicated at times but you never truly understood what “difficulty” meant until illness came. You thought being a mother by the age of 20 was tough, but you were wrong. It was a blessing to give birth early on in life because the “new you” wouldn’t be able to bear children at all. You gave the gift of life to another and nurtured your child into adulthood. You’re a wonderful mom, and I’m proud of you. Nothing has changed.

mother and son young and now
Melissa and her son when he was born and now

Remember when being a hairstylist was your first choice of careers? Had you chosen that path, you’d be testing the limitations of your body every day. But it’s nice that you find joy in making others feel beautiful. That never changed about you. I’m glad you decided on an office job because it’s easier on you physically. You’re still employed, and you refuse to give up. Nothing has changed. 

It’s funny to think back on all the times you felt stressed over rush hour traffic or having to hit the grocery store after a long day at work. I wonder if you’re the only mother who followed a recipe, tried a bite, then ended up at McDonald’s? You were a terrible cook, and you still are! You can laugh about it. Nothing has changed.

Words that terrified you in the past no longer hold the same authority over your mind: pain, handicapped, disability, disease, and incurable. You may be disabled now, but your reflection in the mirror is still as lovely as ever. It’s never been about the mountain; it’s the climb. Nothing has changed. 

You’re learning to live some of your life through the joys of others, which still brings you much happiness. You haven’t given up hope for your healthy return, but you can’t mourn it forever. Life is about taking one step at a time. I’m pleased with your baby steps in embracing the “new you” with open arms. Most of all, I forgive “you” for hurting “me.”

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. Check out our Submit a Story page for more about our submission guidelines.

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