woman sitting with back against wall

Why We Need to Stop Comparing All Illnesses to Cancer

5k
5k

The day I received my chronic illness diagnosis still ranks among the worst days of my life. It solidified my worst fear during the years of testing and misdiagnoses and uncertainty: that my life would never be the same. Friends and family rushed in with loving expressions and compassionate words. And, inevitably, as many newly diagnosed chronic illness patients will hear at some point, I was told those dreaded words which I have no doubt uttered in the past: “At least it’s not cancer.”

Cancer. The word itself sounds destructive. Hazardous. The kind of word we only dare whisper for fear it will set its sights on us next, and because voicing it aloud only reaffirms its power. It has become a curse word, an expletive. The “c-word.”

My illness is not terminal, and every single day of my life I am grateful for that. By reminding me that my illness is not cancer, you are trying to be uplifting. Reassuring. I get it, and I appreciate that. You are relieved I am not dying. I am, too. But when did cancer become the standard by which we judge every illness? When did we reduce every illness to two categories: cancer, and not cancer?

Suggesting that someone should be grateful they do not have cancer undermines the very real struggles they face with their illness. It implies that the excruciating pain, constant nausea, crushing fatigue, frightening memory loss, mobility impairment, and other symptoms are irrelevant, and all that matters is the name of the illness. And if the name is not “cancer,” it’s hardly worth discussing.

Telling me it’s not cancer quickly shuts the door on any open and transparent dialogue about my illness. How am I supposed to respond to that? How do I tell you I’m terrified when, hey, at least I don’t have cancer? Some chronic illnesses inflict the same low quality of life as terminal illnesses, just without a foreseeable end date.

When we begin to compare illnesses, we perpetuate a chronic illness community based on competition. People say my illness is better than cancer, but what about diabetes? Bipolar disorder? Congestive heart failure? Should I tell someone with the flu, “At least it’s not dysautonomia?”

Cancer is a horrible disease. We can all agree on that. The world will be a better place when we find a cure. There are plenty of other awful illnesses out there as well, many of which can be as serious and devastating as cancer. If we reassure patients with noncancerous illnesses by reminding them they are fortunate not to have cancer, what do we say to someone diagnosed with cancer? “At least it’s not ALS?”

Comparing every illness to cancer also ignores the individual experience of each cancer patient. While we use the term “cancer” to refer to the abnormal cell growth that has the potential to spread throughout the body, there are hundreds of different types of cancers, all with very different pathologies. Some cancers can be treated if caught early, while others progress too rapidly to stop. Individual experiences with such a prolific disease cannot be lumped into a single category. Let’s not devalue their battles by trying.

I do not know the purpose of life, but suspect it must lie buried somewhere in the threads that weave a community together. We have to build a better community, where all patients are allowed to share their story. We begin by quietly listening.

If you are searching for something meaningful to say to a friend who was recently diagnosed with a chronic illness, there’s nothing wrong with simply stating, “I am so sorry you are going through this.”

Without mention of the c-word.

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

Lead photo by Thinkstock Images

5k
5k

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION
drawing of woman with long hair and bangs

No, Chronic Illness Is Not 'All About Choice'

12k
12k

I was in a shop with some friends when the subject of jobs arose. For a lot of people with chronic illness, including myself, this is a loaded topic. I briefly mentioned that my aspirations had needed to change due to illness and I wasn’t working. It prompted a lecture from one of the store’s proprietors. He said, and I paraphrase: ”You can do whatever you want, it’s all about choice. Just choose to do it.” The guy didn’t know anything about what I was facing; what my obstacles actually were, or anything else. He had simply decided that none of them mattered, because everything was “all about choice” to him. It’s not the first time I’ve heard such a statement, and it probably won’t be the last.

Don’t get me wrong: we all make choices that influence our lives, our health and our relationships with others. Sometimes our choices end up being beneficial; sometimes they don’t. There’s no debate there. For instance, my occupational therapist assigns stretches and exercises for me to do outside of my OT sessions. My doctors prescribe medication for me. They can talk until they’re blue in the face, but they don’t go home with me. It’s my choice to follow their instructions. I do so, because it helps. I choose to educate myself on my conditions and medications so I can make informed decisions on my treatment plans. I choose to be particular about nutrition and read labels.

Do these things improve my life? I’d like to think so. Do they cure my conditions or mean that every single limitation goes away? Nope. And that’s the rub.

The “all about choice” folks tend to believe that everything can be unilaterally controlled by one’s choices. They tend to conflate one’s ability to make reasonable self-care decisions with the ability to decide to triumphantly overcome all the obstacles and challenges posed by one’s condition. They’re implying that if a person with chronic illness or disability isn’t working, getting better or doing every single thing they want to do, well, it’s their fault because they’re not choosing to do it. It gives them an easy way to deny the existence and validity of any limitations a person with disabilities or chronic illness might have.

Hey, I know about denial. It’s one of the five stages of grief in the well-known Kübler-Ross model. It’s something a lot of people with chronic illness have experienced, and I’m no different. When I first became seriously ill, I did exactly what those “choice” fans would like us to do: I denied and denied some more. I tried to completely ignore the severity of my condition. However, as I found out the hard way, denying that something is real doesn’t make it go away. When I pretended I wasn’t sick and forced myself to do more than I should have done, I just got sicker. There was no other possible outcome, because I actually was ill, and no amount of denial could change the biochemical processes happening in my body that were making me sick.

They’ve actually done studies on this, in a roundabout way. The PACE trial in the UK for myalgic encephalomyelitis (ME) seemed to operate on the principle that people with ME were unwell because of “illness beliefs,” and that if they could be convinced to change those beliefs and pushed to exercise, they’d get better. Unsurprisingly, it didn’t stop the physiological processes that were making patients ill. Many patients were sicker when they ended the study than they’d been when they started it.

Y­­­­­­­ou might fight as hard as possible and think positive until you make Pollyanna and Rainbow Brite look like nihilists, but you still might end up with an incurable chronic illness that impedes your ability to do everything you want to do. You might be incredibly driven to succeed in your chosen field and still find yourself derailed into unemployment by your health. It’s the understatement of the century to say that chronic illness shakes things up.

The “it’s all about choice” brigade doesn’t get just how much we already push ourselves, either. They don’t understand that our progress isn’t always discernible to onlookers. In reality, we’re way tougher on ourselves than they could ever fathom. Many of us walk a tightrope every single day, trying to figure out just how many clever and daring tricks we can do without falling. We’re not on a normal wire, either….we’re more like the lady in the Tightrope Walker portrait in Disneyland’s Haunted Mansion. Not only are we striking a very precarious balance, but we’re standing on a frayed tightrope and there’s an alligator waiting in the water beneath us. We didn’t put the alligator there and we don’t have the means to send him away. We can only try our best to stay balanced so we don’t fall in the water.

None of that matters to some people, though. They’re in the denial stage too, and they’re content to stay there. They’ve decided that physical, financial and logistical obstacles posed by disability and chronic illness are somehow elective, and will disappear or become minor trifles if one simply thinks positive and chooses to make it so. Jean-Luc Picard just wouldn’t be down with that directive.

Loud and clear, for the people in the back: I did not choose to get sick. I can’t magically choose to live the same life I had before I was sick. The only choice available to me is whether I am going to optimize my life with my illnesses as best I can, with the best resources I can access at any given time.

When I mention that I am simply not able to safely do some things, I’m saying that I know the limitations of my body at this time. I try to do as many fancy steps as my precarious tightrope will allow, but my repertoire’s a bit smaller now. It’s not a matter of not wanting to do it, not exerting enough effort, or failing to believe in myself. It doesn’t mean that I don’t want to enjoy my life as much as possible and reach my full potential. It doesn’t mean that I don’t have goals. It doesn’t mean that I’m not going to look for solutions to problems. It does mean I’m aware that my illnesses change the game.

And yes, this also means that I need to spend a fair amount of time concentrating on my health. That’s not pathetic; it’s proactive. Hopefully, medical attention, monitoring, physical therapy and attention to my emotional well-being are going to help me preserve as much function as possible, but they’re not going to magically change everything. It probably will not fix things enough to send me back to work… but despite what our society tells us, that’s not the only measure of a person’s worth.

Those who respond to chronic illness with empty platitudes about “choice” need to realize something: the choices are really theirs, and they’re making the wrong ones. They’re choosing to gaslight us by trying to convince us that the battles we face aren’t real or significant. They’re choosing not to consider what our illnesses, disabilities or disorders really mean for us in our daily lives. They’re choosing to pressure us to conform to their expectations instead of acknowledging us as we are. They’re in denial, and they’re not moving past it. They’re making conscious choices not to exercise compassion and understanding. And that’s on them, not on us.

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

Lead photo by Thinkstock Images

12k
12k

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

When I Wish I Could 'Choose' to Rest

630
630

I have spent all day in bed. Again.

I managed to walk to the mailbox, take a bath, reheat some leftovers, and write this article. I took breaks in between each activity to just lie down with my heating pad. Today my pain has been too much and I have had to rest. Today my chronic illnesses have taken away my ability to choose how I will spend my time.

Many of those who have a chronic illness (or several), have lost a seemingly insignificant aspect of life that healthy people often take for granted: basic choices. The healthy person looks forward to the weekend so that they can choose to sleep in, make a late breakfast and watch Netflix in their pajamas for a few hours.

The healthy person, usually without realizing it, makes choices about simple aspects of their day. Will they shower in the morning or evening? What day of the week should they go grocery shopping or do laundry? If a healthy person wakes up with a cold they can usually still choose to push through the discomfort and go to work or they can choose to call in sick and rest. These basic choices are not available to me on days of severe pain and fatigue, and on the good days I must think far more carefully about my choices than the average person.

Today my chronic illness did not let me choose when I would bathe. Instead, severe pain in my chest forced me to draw a warm bath that could help me breathe again, even though my overwhelming fatigue made it difficult to even walk from my bedroom to the bathroom.

I had plans to get some work done from home today, but my chronic illness prevented me from sitting at my desk or even using my laptop in bed.

I have spent much of the day berating myself for being lazy and unproductive because all I’ve been able to do is lie in bed listening to music and watching Netflix. Then I realized I can only be “lazy” if I choose not to accomplish anything with my day, and because my chronic illness has robbed me of my choices today, I have not been lazy.

To those of you who can relate, remember that laziness is a choice that can be made, while chronic illness chooses us and often robs us of any other real choices (especially on the bad days).

To those healthy people who might wonder if I am using my illness as an “excuse” to stay home in bed, know that after a long, boring and painful day, the thing I want more than anything else in the world is simply the ability to choose when to rest and when not to. But I might never really have that choice.

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

Lead photo by Thinkstock Images

630
630
TOPICS
JOIN THE CONVERSATION

9 Things I Learned From a Recent Flare-Up

21
21

Those who know me well know that this has been a roller coaster of a year for me. After caring for my mother until her passing after a long battle with cancer, I then moved thousands of miles across the country to a new home, a dream job, and a growing relationship. Life caught up with me, however, and sent me spiraling into the worst flare-up of chronic illness I have experienced in years.

It was quite a low blow for someone who makes a living helping others care for their own health, but I was determined to find the meaning in it all – the silver lining, if you will – as long as it didn’t kill me first! I’d like to think it made me stronger, so here are some of the things I plan to implement again in the future.

1. Get Back to Basics

The nature of my career means that I put forth a lot of effort to stay on top of the latest advice in nutrition, health and wellness, but sometimes simplicity is best. When we’re stuck in the hospital or dealing with low energy, it’s important to stick to the foundation of an anti-inflammatory diet, adequate hydration, refreshing sleep, stress management and gentle exercise. It takes self-control to care for ourselves responsibly, but the results are worth it.

2. Communicate With Your Doctors

I’m also a firm believer that no one knows our bodies like we do; after all, we are the ones who have lived with chronic illness for years. The best doctors bring to the table their years of clinical knowledge and experience, which can be a huge asset when it comes to directing our care. There are, however, situations when we may not see eye-to-eye with our doctors, as was true in my case. It takes great strength to speak up for ourselves in a spirit of mildness, not backing down from what we know in our guts to be correct, while at the same time demonstrating respect for their professional role.

3. Remember a Higher Power

In today’s fast-paced medical environment, it can be easy to lose touch with a higher purpose. Trapped within the four gray walls of my hospital room, it was a challenge to connect to my spiritual side when grappling with terrifying anxiety about my physical state. Still, I found great comfort in reading faith-strengthening articles on my cell phone app, doing my best to engage in regular meditation and prayer and allowing myself to be upbuilt by the visits of friends and family members.

4. Socialize With Others

That last bit was very difficult for me at times when I felt miserably and all I wanted to do was pull the blanket over my head and hide until it was over. Making space for ourselves can be a healthy coping mechanism, but withdrawing too much can cause us to feel isolated and cut us off from the goodness of others. At my lowest, the interchange of encouragement that came from connecting with others through text messages and social media helped to sustain me.

5. Don’t Blame Yourself

It is a frequent habit among those of us with chronic illnesses to obsessively analyze each symptom, wondering what we did to trigger it – which food was wrong, which activity was too much or which product was toxic. I am very grateful for my husband’s reminders that I needed to show myself kindness and be reasonable in my expectations. After all, our illnesses are not our fault and beating ourselves up every time we feel sick will only make matters worse.

6. Take the Time to Heal

The realization that I was not to blame for making myself sick overnight was a frustrating one, because it also meant that I could not be responsible for healing myself overnight. The whole process was going to take a lot of patience. I am a doer in every sense of the word, but all I could do was wait, confined to the house day in and day out as I adhered to my self-prescribed routine to help my body systems heal and rebalance.

7. Find the Calm Amidst the Chaos

My first signs of a worsening flare-up began nine months ago, before I was hospitalized twice and forced to quit my job, cancel vacations and generally miss out on my life over the summer. At first I could be content with my circumstances, recognizing that this was just another pit stop on my journey to healing, but as the months dragged on, it became harder and harder to find that inner peace I so desperately wanted. I had to visit some very dark corners of my psyche, wade through the muck of self-pity and question some of my previously-held beliefs before I could arrive at a place of acceptance, but I’m glad I made it.

8. Cultivate Mindfulness

I am convinced now that acceptance is the only real gateway to joy. As long as we keep fighting our present reality or making our happiness contingent on future circumstances, I think we will remain discontented and unsatisfied. Acceptance doesn’t have to mean resigning to or condoning things that are evil or unjust, but it means understanding that the only thing we have the power to change is ourselves and that we are doing the best we can with what we know at this present time. We can strive to grow and improve ourselves with the lessons we learn as we continue to gain experience, not by comparing ourselves to others.

9. Express Gratitude

Finally, healing my mind, body and soul will be an ongoing process, but I continue to feel much better each day as the events of this past year fade into a distant memory. What I won’t allow myself to forget, however, is the love that was shown to me by those to whom I had very little to offer in return and the love that I continue to try to share with others in similar circumstances. The strongest healing powers have come from the ability to demonstrate empathy and forgiveness towards myself and others.

This post originally appeared on Chronic Wellness Nurse.

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

21
21
TOPICS
, Contributor list
JOIN THE CONVERSATION

The Dreams I Have for My Life With Chronic Illness

21
21

I want to go to the doctor one day and once again check the box on the intake paperwork that says “generally healthy.” The once robotic maneuver of sliding my arm smoothly down paperwork to check off a straight line of boxes is now a chore requiring concentration and an agile hand zigzagging across columns.

Having the opportunity to check that “generally healthy” box would reinstate my self-worth as a physically able, capable human.

woman in red skirt dancing in a valley near mountains
Charis at Burning Man, 2016

This dream is on my bucket list between trips to Hawaii and Zamibia. But the dream vacations do not get much attention – I’m distracted by the more immediate and unrealistic desire for good health. I’m waiting with open arms, but I don’t expect this invitation will be answered.

As someone with a chronic disease, I dream of normalcy: waking up pain-free, foregoing medications, eating what I want, planning activities without fear, working 9 – 5, raising a family, growing old… These may seem simple and mundane to some, but to me they would be profound and life-changing. I dream of an existence taken for granted by those who have their health.

silhouette of woman walking with her cane in a valley looking at mountains and sunset
Charis at Burning Man, 2016

I also dream of more than simple things.

Wishes for international trips and other considerable “run of the mill” bucket list items often fade to the back of my bruised and foggy mind, but I do still dream. From Paris to skydiving, I dream of having extra breath to do more than just survive – I want to live! But my permanent disease state threatens an incapacity to even plan such invigorating experiences. I love to travel. I love to have adventures. My body doesn’t.

I want freedom. Freedom of movement outside my own body. Freedom to function without fear of my body turning on me. Freedom to control my schedule and energy level. Freedom to have a career, a family and hobbies. Freedom to travel. Freedom to escape from my own body.

Instead I am stuck inventorying my energy to get through today. Bucket lists will be bucket lists, but mine juxtaposes simple health with exciting adventure. I hold these equally tantalizing wishes like fine sand; I watch as health and adventure are taken by the wind.

I dream of so much more than this.

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

21
21
TOPICS
JOIN THE CONVERSATION

18 of the Most Ridiculous Things Said to People With Mobility Aids

661
661

Using a mobility aid like a wheelchair, walker or cane often garners odd comments from strangers or even friends. If your illness or disability is typically “invisible,” people may question why you’re using a mobility aid at all, while others may think their one-liners are funny. What they may not realize, however, is these comments can be invasive and judgmental, causing you stress while you’re just trying to live your life.

We asked our Mighty community to share the most ridiculous things they’ve heard people say about their mobility aids. For those readers who don’t use mobility aids, consider this a guide for what not to say the next time you encounter someone using a wheelchair, walker, service dog, or any other mobility device.

Here’s what our community told us: 

1. “The one time I used a mobility cart at the store I was told by two people, ‘That’s not a toy, you know’ and ‘There are people that really need to use that.’”

2. “I had a little girl tell me she liked my cane (it’s a really pretty turquoise color) and her mom yelled at her about it… The mom yelling was the ridiculous part, saying she couldn’t talk about others’ disabilities like that. I understand where she was coming from, and I may not want to share my diagnoses if you asked, but canes and many mobility aids are visible, people are bound to notice them no matter what. If they’re decorated or pretty colors, we’re trying to make the most of having to use them. Hearing that someone likes them is just… nice. ‘Hey, your cane looks cool’ is a nice break from, ‘Hey, why do you need that cane?’”

3. “What do you need high heels for if you can’t walk?”

4. “My mom was dancing with my dad (who uses a cane) and some guy came over and grabbed my dad’s cane out of his hand and my dad almost fell to the ground. My mom was able to catch him and the guy says, ‘Look at you, you don’t need this, stop faking.’ Don’t ever touch someone’s mobility aid without asking.”

5. “Old man said I didn’t ‘deserve or need’ the wheelchair I was using at Costco. Because I was ‘too young for it’ and I should get out and let an old man like him use it… I just patted on my lap, and said ‘You want the wheelchair so bad.. you can sit right here!’ I’ve never seen an old man run away as fast as he did.”

6. “People refer to my service dog as a horse. I get remarks like, ‘Where’s his saddle?’ Or ‘Are you going to ride him?’ No. Please. Stop.”

7. “‘You don’t need one of those, don’t give up yet…’ (in a kind, encouraging, motherly voice).”

8. “A man asked why I was using a cane, so I said I’d had hip surgery. He then proceed to ask how my ‘lady parts’ were doing since the surgery.”

9. “One time we were at Disneyland and my brother said he wished he had a cane like mine so he could get through the lines faster. I had no words as I didn’t want to fight in the park. I’d give anything to stand in long lines without falling.”

10. “I was at the grocers, purchasing my organic foods and the cashier read my lupus awareness shirt out loud and made a comment about how cute my surgical mask is, then proceeded to tell me her uncle had lupus. ‘Such a terrible disease. He got the flu… and he ended up in the hospital. I’m sure you know. Probably why you wear that. Well, he died. So. Yeah. It’s a crappy disease. But, I hope you feel better! Have a nice day!’ I still… am just speechless.”

11. “An ignorant person asked why I don’t use a mobility chair in our apartment. Well, gee, maybe because it’s too large for our small apartment and between our bedroom and the kitchen there’s a drop-off of 2 to 3 inches.”

12. “I had a lady working in the food court at the mall say, ‘Did you hurt yourself dancing?’ What are you supposed to answer to that, and why is that the first thing that came to her mind?”

13. “The ‘beep beep beep’ of a trucking backing up as I’m turning.”

14. “I use a travel pillow instead of a sling to prevent chronic shoulder instability. I wedge it in under my arm and the angle and taking the weight off my shoulder work as well as a sling with no pain to my opposite shoulder/neck. I get asked constantly (seriously, all the time) if I’m ready for my nap or some silly off-handed comment like that. People always mean it in jest, but it’s really embarrassing all the same.”

15. “‘What do you use that walking stick for?’ Hmm… Walking!”

16. “‘Oh it must be so nice to be pushed around in a wheelchair all day!’ As if I was doing it for pleasure! (I was paralyzed and had to learn to walk again — twice — in four years!)”

17. “Can I pet her?’ (I use a service dog). It’s rude to ask to pet my medical equipment regardless of what it is.”

18. “‘You walk pretty well for someone with a cane’ … Well yes, that’s the goal here.”

If you use a mobility aid, what is a ridiculous statement you’ve heard? How did you respond? Let us know in the comments below.



18 of the Most Ridiculous Things Said to People With Mobility Aids
661
661
TOPICS
, , , Listicle
JOIN THE CONVERSATION

Real People. Real Stories.

6,300
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.