I’ve read many lists describing “what not to say to someone with chronic illness,” so I wanted to offer a new spin. These lists are valuable for the chronically ill and the healthy, but the lines of communication between us can be fraught with misunderstanding. It’s important to recognize there is a lot we can still say to each other and our communication can be positive. Of course, there is much more you can say to someone with a chronic illness, but this is a good place to start:

1. “I believe you.”

This one is especially potent. For many of us who have invisible illnesses, we hear “it’s all in your head” everywhere we turn. I think there’s a cultural assumption that physical illness manifests in tangible, obvious signs: loss of hair, paralysis, loss of weight, reliance on mobility aids, etc. But often, there is no visible trace of debilitating diseases. You can’t “see” a broken autonomic nervous system, an inflamed colon from inflammatory bowel disease (IBD) or the ravages of kidney disease. With conditions like dysautonomia, the medical establishment even struggles to identify and diagnose it because of its nebulous nature; patients may “look normal,” but they live a life that is anything but normal. Because of this, hearing “it’s all in your head” is almost a universal experience for dysautonomia patients in particular, and it’s difficult to undo the damage of these words.

If a loved one tells you about their condition, their symptoms and their limitations, they’re showing an incredible amount of trust in you. It may be easy to interpret anyone’s response to their condition as “laziness,” but they’re fighting a battle that requires tremendous effort. Recognize the incredible amount of strength it is taking for them to deal with their challenges.

Saying these words to your loved one or friend is a beautiful gift they will be eternally grateful for.

2. “I want to understand.”

In the health communities I’m in, I often see people discuss the lack of support they receive from loved ones because they don’t understand the symptoms of the condition. Sometimes it’s difficult to wrap our brains around all the ways illness can manifest. Why would someone who looks perfectly healthy suddenly start fainting whenever they stand? How is that a thing? Yet, it really is a thing with dysautonomia. Fact is truly stranger than fiction in the world of illness.

Often when you have a chronic illness, people come out of the woodwork with unsolicited advice and sometimes sanctimonious suggestions about how we should be managing our conditions. This is not the place to start.

A simple Google search can go a long way in understanding your loved one’s condition and symptoms. Understanding the Spoon Theory will also give you some idea of how they plan their lives. Asking them questions about their condition and treatment can also give you a lot of information. Your loved one is probably so informed about their condition that they can present a powerpoint at a medical conference on it (and many have actually), especially if they have a rarely diagnosed condition. As with #1, if you say you want to understand what they are experiencing, it shows that you value and appreciate their struggle and efforts to manage their health.

3. “How can I help?”

Learning about their condition may also give some insight about how to help them with their challenges. Your loved one may need help with simple tasks, but more than likely your loved one will need your understanding and empathy as they try to live a full life despite illness.

We are conditioned early on to value our independence and brush off any appearance of vulnerability. I have never ever been good at it, but I have learned that it’s sometimes necessary. If you take the initiative to ask your loved one how you can help them, then they don’t have to go through that difficult process of getting the strength to ask for it.

4. “Can I visit, call, email or text?”

Not everyone who is managing a chronic illness is home-bound. Some of us are, and some of us manage to live full lives. No matter the level of functionality, however, you have your good days and bad days with chronic illness, and we’re in a constant battle with our bodies to force them to comply. This can make staying in contact with family and friends difficult, especially if driving or leaving the house is challenging.

Having an illness can be isolating — devastatingly so. This was something I’ve learned to live with, but I wasn’t at all prepared for it at the beginning. I’ve been lucky my friends and family have been understanding as I have become home-bound over the last year.

Please know your loved one would give anything to be able to have a vibrant social life and be more active, so be patient as they navigate life on their own terms. If you reach out to your loved one, you can help get them over the bridge of the isolation and bring some joy to their life.

5. “Here’s a funny story.”

This is an extension of #4. If you can say something to your loved one to brighten their day, that’s usually better than handfuls of chocolate (most of the time at least).

One of my good friends has Crohn’s disease, and we usually chat online or text throughout the day even though she lives not far from me. We try to lift each other’s spirits each day with our affinity for the absurd. Sometimes my friends come by and we play games. These are moments I can try to forget about being ill and just enjoy life, and it’s pure bliss.

Your loved one may sometimes need empathy or a shoulder to cry on, but a good laugh is more powerful than almost anything else you can give them.

6. “Let’s do something fun that’s within your limitations.”

In relation to #4, your loved one may have limitations but still wants to live the fullest life possible. They may not be able to do the things they used to do, but they still want to do whatever they can. If someone puts pressure on me to do something that used to be easy for me but is now difficult or impossible, I shut down. I can’t participate if expectations are impossible for me to meet.

You can talk to your loved one to work together to find alternatives so they can participate the best they can and still have a great time.

7. “This can be hard for me, too.”

It’s also hard for friends, family members or even acquaintances to watch someone face challenges. It can be a frustrating, disheartening and aggravating process for them, too. I think it’s OK to share your own concerns with adapting to your loved one’s illness because it shows you’re on their side. I’ve seen this particular problem lead to serious stress or even dissolution of relationships. It can be hard to accept your loved one has serious limitations and needs help.

Being a caregiver is a tough gig. I’ve watched my husband do it, and I’ve seen my dad be a caregiver to my mother. I’ve realized they may have it harder than the one they are caring for. Significantly harder. My husband is the sole breadwinner in our family and carts me to appointments, pushes my wheelchair and brings me medicine and fluids when I can’t leave my bed. He also has to pick up the slack on my ever-increasing list of things I can no longer do. This is the case for many people who have spouses who are ill.

The acceptance train is a hard one to catch, but we all have to board it someday. The sooner the better. I don’t mind if a caretaker wants to talk discuss their issues as long as it comes from a place of compassion.

8. “I support you, care about you and love you unconditionally.”

This may be a no-brainer. We all need to know we are loved and valued, but when you’re dealing with chronic illness, this is especially true. I often feel guilt and frustration about my limitations and the efforts of others to help me get through life. Hearing these words can be a reminder to your loved one that despite the challenges, you still love them and care about them unconditionally.

9. “We got this.”

I have learned managing and living with an illness requires a team effort. It’s a collective enterprise, requiring the work of your loved ones, friends and doctors. I think many people may be living a fantasy and think they’re independent. Before I got ill, I did. When you are chronically ill, you can no longer live that fantasy. We have to carry each other.

We are stronger together and we can face the challenges of life as a team.

We got this.

Follow this journey on Kind of Broken.

RELATED VIDEOS


A Facebook page I follow recently asked those living with invisible disability:

“What’s the one thing you wish people would say to you?”

It took me a long time to think of an answer. Admittedly, I have tipped over to the visible disability camp the last few years, but I still get the “but you don’t look sick/disabled” comments with such frequency, it would seem I still fall into the not looking sick/disabled-enough camp. Go society and its continued desire to hold on tightly to the myths and stereotypes around disability. But because I have spent enough years in the invisible camp, its legacy is still keenly felt.

A version of “I believe you” was sought by many who answered the question. As was “What can I do to help?” I understand both of these. Belief was definitely lacking at the start, be it from strangers, friends, family or medical practitioners. It was frustrating and disheartening and left me feeling alone. It also took a huge toll on my self-confidence as I internalized the lack of belief and started to doubt myself. Am I really sick? and Should I really just suck it up? were on repeat in my mind. And they were destructive. The current state of my body makes a mockery of those questions. Even at the start, passing out and a heart rate that wanted to go from bradycardia to tachycardia on a never ending loop wasn’t exactly normal. Belief became my holy grail. It continues to be the holy grail for many. Sadly, even with a concrete diagnosis, belief can still be a missing factor. As such, an expression of belief is understandably high on the list of many.

A lack of help is another I understand only too well. As I wrote in “No Casseroles for You,” help is not often forthcoming for those with chronic illness, many of which are invisible. Often just like you can’t see a chronic illness or disability, you cannot see its consequences. Alternately, its chronic nature leads to care fatigue for those around us. When a disorder is measured in years or a lifetime, it is hard for many to maintain caring for that length of time. There are certain illnesses that are known as casserole illnesses. Those whose name inspire instant understanding of need and seriousness. That activate whole communities to action. And then there are those like dysautonomia that are never, or rarely, invited to the party.

Having said that, I know from friends who live with the well-known casserole illnesses and, if they continue on over time, even they experience the affects of care fatigue. The inundation of initial help has an unmentioned but clearly defined shelf life, after which it dwindles away. If this happens for the well-known disorders, what does that mean for those of us who aren’t even in the running? How I longed for someone to bring over a meal or offer to vacuum — especially in the early days where I left work and was struggling to find medications that took the edge of my symptoms. But apart from two people, who have very generous hearts, it never happened. Outside of a couple of specific disorders, there were simply no services for seriously ill moms in their 30s in my region. And living in an area with sparse general services, if family and friends didn’t step up, you were left to fend for yourself.

I know all of this, but still I struggled with a response to the question.

When I sat and thought about my experiences, I realized that I don’t want the people around me to say anything.

I want them to be silent.
 
Instead, I want them to hear me — really hear me.

In essence, both of the responses regarding belief and help are also about hearing. Hearing exactly what is going on. Hearing what my doctors have said. Hearing the expert knowledge I have about my life and disorder. Hearing about my needs. Not the needs you think I have.

Hearing would alleviate so many problems. And part of truly hearing is active listening.

Active listening has a number of parts, but this is the one I really wish others would employ:


Screenshot source: University of Adelaide: Active Listening

Illness comes with a whole host of judgments and assumptions. I should be better by now, I don’t look sick or disabled enough, I just need to exercise, be more positive, I don’t complain so I must be coping, I don’t need help, it’s not that serious, it’s not like I have [insert illness of choice], if So-And-So can do it, so can you… The judgments are automatic and fired off with relentless regularity. So much so they are parodied on many patient support sites.

Photo source: Pins & Procrastination

They are so ingrained that many do not even realize they are seeing you through that lens, or that their responses are influenced by those negative beliefs.

I don’t want people to say anything in particular to me. I just want them to hear me. To actively listen when I speak. To understand that I am the expert in me and my needs. Being chronically ill is difficult, but so often it is not the illness or symptoms that end up being the hardest part to deal with. Instead it is often the reactions of others to our being ill.

I would add that we are not a homogeneous group. We do not all have the same experiences or needs. And our needs may be different from what you would want in the same circumstances. When I hear fellow patients being told they are ungrateful for simply saying that they didn’t need a particular form of help, or suggesting another way to help only to have it dismissed, it is clear that active listening has not taken place. That they have not been heard.

I know people mean well. I know they don’t intend to make life harder for people who have invisible illnesses or disabilities. But as the old saying goes, the road to hell is paved with good intentions. Stop. Take a step back. Check your assumptions at the door. And listen.

Active listening is a skill. It is not instinctual for many, but it can be learned. And that is a kindness to all.

Hear me.

That is the one thing I want from others.

Follow this journey on Living With Bob (Dysautonomia)

Lead photo source: Thinkstock Images


“High school is a difficult time in a person’s life,” the immunologist said. She then went on to suggest my joint pain, dizziness, nausea, fatigue and myriad of other symptoms were due to stress. She said I needed to take a break from all the medical tests. When I told her I’d had fevers in the evenings, she made it clear she didn’t believe me, as if I couldn’t use a thermometer correctly at 17.

I remember sitting in the room with my mom, stunned. We had gone to this hospital in the midst of a tropical storm, only to be told there was nothing wrong with me. When my mom asked the doctor if she would stop looking for answers if her own child were sick, the doctor backtracked. “I wasn’t suggesting that.” She was.

The immunologist wasn’t the first doctor to say my symptoms were due to anxiety or stress. While I recognized the impact anxiety could have on a person’s life, I knew I didn’t suffer from anxiety. The only thing I was stressed about was seeing so many doctors who never seemed to have the right answers.

Senior year of high school was supposed to be an amazing year. I was editor-in-chief of my school’s newspaper, a role which I had worked tirelessly for, and in the upcoming year, I’d apply to my dream school. At the end of my junior year, though, everything changed. A simple stomach bug turned into never-ending nausea. In two weeks, I’d lost 10 pounds without meaning to do so. I began to grow fatigued, had joint pain and felt unwell overall. I felt lost as more symptoms piled up.

In January, eight months after my symptoms first began, I became sick with the flu. Days passed by in a blur, and I felt dizzy all the time. Going to school became almost impossible as the world seemed to spin. I couldn’t drive and I cried when my mom drove me home. Make-up work piled up, and I felt paralyzed. I knew I was sick, and yet I had no answers as to what was wrong.

It wasn’t until March 15 that I got my diagnosis at the Mayo Clinic in Rochester, Minnesota. I was diagnosed via a tilt table test with a form of dysautonomia called postural orthostatic tachycardia syndrome, or POTS for short. POTS meant that my autonomic nervous system didn’t function the way it should have. My body wasn’t performing the basic functions as it should have, like regulating my heart rate or digestion. Every time I stood, the blood pooled in my limbs, and my heart raced to try and bring the blood back to my brain. All of my symptoms were explained by POTS.

Since my diagnosis two and a half years ago, I have spoken to many other patients with POTS. So many people have been told their illness was in their head, just because their doctors couldn’t find an obvious cause.

I want the doctors who told me that my very real, sometimes debilitating chronic illness was not “all in my head.” I was never faking my symptoms. I was simply desperate for someone to help find an answer and give me treatment. I met many doctors who didn’t know what was wrong with me, but I never begrudged them if they were kind.

Ultimately, doctors need to realize that patients know their bodies best. As patients, we will always remember the doctors who refused to listen. Likewise, we will always remember the doctors who treated us with kindness and helped us on our journey to a diagnosis.

Emily Deaton the mighty.2-001


There will be time, there will be time
To prepare a face to meet the faces that you meet;

There will be time to murder and create,
And time for all the works and days of hands
That lift and drop a question on your plate;        
Time for you and time for me,
And time yet for a hundred indecisions,
And for a hundred visions and revisions

— From “The Love Song of J. Alfred Prufrock” by T.S. Eliot

The word chronic comes from the Latin word “chronos” for time. Chronic illness simply means long-term illness. It’s a marathon on every level. What do I think is the hardest aspect of chronic illness? Well, it’s not the lack of understanding from society at large. It’s frustrating, but it’s something we can actively work to change. And it is not the endless symptoms, medications, treatments and consultations with medical professionals. That’s sheer endurance, but not the worst aspect of this life. It’s not even the heartbreaking armchair view of watching the fallout of your chronic illness on your family and friends. It’s something more insidious.

For me, the hardest part is the “chronic” nature of a chronic illness. Can you imagine getting sick and being told you will probably never be well again? Can you imagine facing challenges today, tomorrow and all of the tomorrows beyond that? “There will be time, there will be time,” T.S. Eliot wrote in his sad poem, “The Love Song of J. Alfred Prufrock.” So much time. Elastic, interminable, confounding time.

It will take a great deal of your energy, because you might learn early on people don’t always want to hear the truth about your chronic illness. They’d rather see you smile so they can move on. And as time goes on, you might prefer that, too. It’s so much less soul-destroying than trying to explain your illness with a chasm of disinterest staring back at you.

You might spend eons deep in your own thoughts and find entire worlds there. Ideas and hopes might be born and end before you’ve managed to make a step. But you’ll also find other ideas, dreams and pursuits in there that you’ll nurture. The distraction of creating things might just lift you from the fog of your chronic illness for a time. You may even create an entirely new you. A phoenix from your ashes. And there will be time for all that.

So, it is time. That’s the hardest thing about living with a chronic illness to me. Of course, the best advice for handling what feels like the tyranny of time lies in acceptance. But acceptance can be hard to find. Sometimes it flies away in the face of the realities of illness. It must be held like a butterfly, so you don’t destroy its wings. Lightly and with wonder.

Have you found acceptance as you travel across the days of your chronic illness? What helps you?

For me, it’s reading poetry, writing, thinking and creating.

It is letting the “slow” seep into my bones and watching the storms roll over. It’s letting go in tiny increments of the girl I used to know. And believing, even when the sands are trickling faster through the hourglass, that there will be a “time for you and time for me.”

Rachel F Cox the mighty
Drawing by Rachel F. Cox

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.


When you’re ill, particularly chronically ill, you’re inundated with advice from well-meaning family, friends and even, on occasion, complete strangers. I thought I’d dedicate this post to the one that seems to be a favorite of the well-meaning brigade, and one that really ticks me off.

“Well, at least it’s not [insert disease or life circumstance of choice].”

I have yet to work out how this is helpful to the person being addressed. In many respects, it assumes the person has lost complete perspective and is simply overreacting and whiny. Unless your head is so fully up your own bum that you couldn’t pry it out with a crow bar, you know that there are worse things in the world.

No one is immune from loss and illness. We all have tragedies in our lives. Unless you live under a rock, you know there is suffering around the world in the form of war, violence, famine and natural disasters, every day. On a smaller scale, there is the personal loss of loved ones and unexpected health and life crises. For myself, I’ve worked in palliative care. I have worked with women who’d survived the atrocities of the war in The Balkans during the 1990s. I have lost deeply loved family members. Like most people, I understand there are people enduring far worse circumstances than my own. You really don’t need to remind me.

When you give me the “at least it’s not…” line:

  • You are being nothing short of dismissive and trite.
  • You are negating my experience.
  • You are telling me that I have no right to what I’m feeling.
  • You are telling me I have no right to express that feeling.
  • You are telling me to be silent.
  • You are telling me my distress is unwarranted.
  • You are making me feel guilty.
  • You are making me doubt myself.

Is that really helpful?

Does it provide any solutions?

Any useful advice?

The simple answer is no.

Suffering is as individual as those experiencing it. What one person can bear another will find an overwhelming burden. How can you compare such a personal experience? I know other people are suffering and that for some, their suffering is beyond intolerable. That doesn’t stop me, or any other person, from feeling overwhelmed, or scared, or sad, or lost, or angry, or any of the other million emotions that arise with chronic illness. It doesn’t mean I don’t need support. It doesn’t change my circumstances. It doesn’t make my suffering any less real. And it doesn’t mean I think my suffering is worse than that of another. But it is mine alone and its salience can only truly be interpreted by me. Where is that line in the sand that says, yes, you finally have suffering worthy of complaint? And who decides what the line is?

The reality is, whatever anyone’s life circumstances, be it illness, loss or otherwise, there will always be someone, somewhere whose experience could be classified as worse.

Negating or silencing someone’s experience is not an act of kindness. You do not need to understand someone else’s experience to be able to show compassion. To let them speak their truth. To let them release that burden so they can start to pick their feet up once more and take the next step. Compassion costs you nothing, but it’s priceless to those who receive it.

Chronic illness is a long and often frustrating journey. It has no clear parameters. Some days it is better, some days it is worse. Often you can’t predict when either circumstance will occur. We experience loss in different forms, jobs, life roles, financial, social, our sense of self. We experience pain both physical and emotional. We have plenty to deal with. Why should we also be made to feel we must justify our right to feel upset or overwhelmed?

I, like most patients, know in many respects I am lucky. I count my blessings each day. But the days it gets too much and I’m barely holding on, a kind word or a listening ear is what is needed, not a reminder that others have it worse. Think about what you’re truly saying when you utter those words.

michelle roger the mighty

A version of this post originally appeared on Living With Bob (Dysautonomia).

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

 Want to help celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

 


It was a random day and time that I received the text. It was a link to the website “But You Don’t Look Sick” by Christine Miserandino. Specifically, it was to the page describing the Spoon Theory, which describes what it is like to live with a chronic illness, especially an “invisible” one.

In a nutshell, Christine (who has lupus) needs a way to help her friend understand what it is like to get through each day while dealing with the ins and outs of lupus. To help visualize and fully understand this, Christine uses spoons as a symbolization of the energy and effort she has to exert for even the most mundane of tasks that most healthy, able-bodied people take for granted.

To sum up, it has become a great reference for those of us with an invisible chronic illness to resort to when trying to explain day-to-day life to those who want to understand how we get through each day dealing with symptoms of our conditions.

 

The text I received that morning was from my direct manager at my job (who over time has become not only one of the most supportive friends, but also an amazing advocate for me both inside and outside the workplace).

The text was a link to the Spoon Theory, and it simply stated, “This made me think of you.” Of course, after years of being a part of the club I never wanted to join (club sick chick), I had heard of and read the Spoon Theory many times. But then it struck me. Had my boss really gone out of her way to try to understand my situation? Or even if she happened to stumble upon it, had she really read the whole thing, thought about it and then thought of me and how it applied to my life and my situation in and out of work?

While it may not seem like a big deal to most, to many of us who live with invisible illnesses, finding even one person who just “gets it” is no small achievement. Generally, the only people that “get it” are the people who also have it, as in also suffer from a chronic illness and have first-hand experience with life with a chronic and/or invisible illness.

To have the blessing of having someone in your life who goes out of their way to try to understand your situation (and even more impressively­, succeeds!) at doing so. Well, that is just one of the many blessing that has come along with having been unwittingly enrolled in this “club” that no one really wants to be a part of. And for that, I am truly grateful.

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

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.