Why Chronic Pain Patients Often Pretend to Be Healthy

By Crystal Lindell

Whenever I meet new people, I like to spend a little time in that magical in-between land where they don’t yet know I have chronic pain.

It’s a place that only exists in fantasy, but it lets me play pretend. 

I get to pretend that I’m just a regular person whose entire life does not revolve around my pain.  

How long I get to stay in that fantasy land with new people depends on a few factors. Namely, how often I have to see them, how effectively my medication is currently working, and how often my pain is flaring. 

Of course, because I write about my health issues online, it’s also greatly dependent on them not Googling my name.

But it’s fun while it lasts.

Look at me! I’m just a regular person! I don’t need 15 hours of recovery time after activities! Rainy days don’t render me incapable of getting out of bed! I can definitely skip sleep to get more work done!

I’m TOTALLY HEALTHY!

In essence, I’m socially masking. But instead of trying to mask my true personality to fit in, I’m trying to mask my physical pain.   

Eventually, my body always betrays my charade though, and I have to reveal at least some of my health issues. It usually happens because I have to cancel plans due to a pain flare, or because I get an injury.

Even then, I still only like to reveal small bits of information. I don’t give an entire back story and list of diagnoses right away. I only share what I need to.

I don’t have Ehlers-Danlos Syndrome, I have “a genetic condition.” I don’t have intercostal neuralgia, I have “some pain in my ribs sometimes.”

There’s a common trope that people with chronic health issues like to let it define their entire identity. Doctors often point to this as a reason why people might be claiming to be sicker than they actually are. Like it’s a fun fad.

But that’s not my experience at all. Yes, my chronic health issues do define my entire identity – but I do not like it. In fact, I hate it. 

I want to be a regular person so badly – even if it’s just in the minds of casual acquaintances. I want to be who I remember I was before I started having chronic pain. I want to be reliable, bubbly, and sober.

Of course, there’s one major downside to always trying to hide my chronic pain and my health issues from new people: It makes it that much harder for others to ask me for help.

That’s why I chose to write online about my chronic pain so openly. I want people to know that they are not alone, and I want to share things with them that have helped me survive in this broken body.

I just don’t always want that experience in real life, with real people, in real situations.

That said, over the years, I have found that when my health issues do eventually come up in-person, many people are often quick to confide that they are also hiding their own ailments, and their own need for help.

When I share my health-related secrets, theirs usually come flooding out as well. And if not theirs, then the struggles of loved ones and those they care for.

Then, once that bridge is crossed, we can commiserate. More importantly, we can share the secret ways in which we cope.

As the fantasy of being healthy dies, true friendship blooms. But that doesn’t mean the fantasy wasn’t magical while it lasted.

In the end, the truth is most people aren’t going around pretending to be sicker than they actually are. Rather, a lot of people are trying to pretend that they are healthier than they ever could be – myself included.

6 Tips for Healthier Living with Chronic Pain

By Barby Ingle, PNN Columnist

People with chronic pain-related medical conditions are at higher risk for infection, falls, poor posture, complications, mental health issues and other challenges. There are things we can do to help lower these risks and live fuller, longer, happier and healthier lives.

Tip #1: Have good communication with your medical providers. Your medical team can include specialists in primary care, pain management, rheumatology, dentistry, ophthalmology, gastroenterology, gynecology, podiatry, surgery, physical therapy and nursing. The more proactive you are in communicating with your providers, the better and faster they can assist you in proper care.

Tip #2: Keep your weight under control. Maintaining an ideal weight as a pain patient can be difficult. You can lose your appetite and not eat enough, or overeat to help deal with the stress of being ill. You may even have cravings for goodies because the pain is so bad. We need something good in our life, right?

Maintaining a good body weight can be very helpful. I use the Noom healthy eating app, gut health testing through Viome, and self-discipline to better control my weight. I watch what I eat and look for healthy treat items that I can enjoy when others around me are having their goodies, helping me to stay social.

Healthy eating needs to be individualized. What is good for me to eat is not always good for others. Find your dietary recommendations and stick to them whenever possible.

Tip #3: Drink plenty of water. I know, I know. Water can be so dull. But drinking the right amount of water increases your energy and helps you focus more. Improved concentration and memory enable you to take on more in life and stay active.

Drinking water can also help you feel fuller and avoid overeating. Water flushes out toxins that we build up from high pain levels, the environment, and other lifestyle choices. Good hydration improves your skin texture, helps it stay elastic and makes you look younger. 

Tip #4: Exercise regularly. I know it’s much easier said than done. Even if you just reduce your sitting and screen time, making the change can help. Know your physical boundaries. For example, if you have a catheter and are not supposed to lift over 10 pounds, don’t do it. Stick to simple household tasks, such as moving the clothes from the washer to the dryer or engage in light sweeping.

During the pandemic, I started doing stretches and light yoga moves while watching TV. Many great exercise shows can be found on television, YouTube and the Internet. Even if you cannot touch your toes like the person in the video can, you can still stretch in that position. Make it a goal to improve your range of motion. Goal setting and a plan of action can help improve vascular flow, blood pressure and other health benefits.

Tip #5: Improve your sleep. A good night’s sleep not only helps reduce pain, it improves your brain performance and mood, and helps lower the risk of heart disease, stroke and obesity. 

Tip #6: Do not smoke or drink to excess. Work to do it less and less each day. I know it’s hard, but I also know it is possible to limit yourself or even quit. 

None of these tips will cure pain. They are tools to help improve your daily living despite your pain. We are told them while growing up, but often life gets in the way and we need a reminder to check our self-care tools and improve the manageable areas of life.

Best wishes in all you do to live a happier, more productive and healthier life! 

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts. You can follow her at www.barbyingle.com.   

Should I Be Trying to Pass as Healthy?

By Crystal Lindell, PNN Columnist

Recently my new boyfriend told me he could tell from the moment he met me that I took pain pills.

“It’s all in the eyes. They look weathered. Mostly because the pain medications affect your sleep pattern.”

“Wait. What? What does that even mean? So I look old?”

“I think it’s really attractive actually.”

Sure. 

I was a bit devastated to find out that my elaborate efforts to convince the world that I am indeed quite healthy had failed me. So much for my $48 concealer from Ulta. 

The thing is I look young and I’m relatively friendly, so people usually can’t tell that I almost always feel like someone is repeatedly breaking my ribs. And I confess that I often use this to my advantage. People at work are on a need-to-know basis.

Until I met my boyfriend, I rarely told guys about my chronic pain. And when I’m at professional events it never comes up.  Sometimes I feel a little guilty about this, as though I’m somehow reaping the benefits of being able-bodied while my actual body is falling apart.

Looking healthy means nobody ever questions my ability to get things done, show up or keep working.

But the other side of this is that when I actually need help, it’s a lot harder to get. Nobody wants to give up their seat in the waiting area for the young girl who looks like she could go out and run a marathon tomorrow. Well, fine, probably not a marathon, but I definitely look like I could easily walk a 5K.

And getting help lifting a bag, or even using a scooter at the store makes me look like I’m just some lazy blonde chick taking away benefits from the people who actually need them.

I recently covered three trade shows in three weeks for work, and the whole thing left me battered on the couch at home. But during that final week, when I finally was bold enough to just float the idea of using a scooter to get around, someone who doesn’t know about my health said, “Well that would be in poor taste.”

It’s so hard to know what to do in that moment. Do I verbally vomit up my medical history right then? Do I laugh like I’m embarrassed? Or do I just ignore it?

I chose to throw out a sentence about how I was actually in real pain and then dropped the conversation.

More moments like that are bound to come up though. And one day I will have to break down and actually use the scooter. When that happens, I’m sure I’ll get some nasty looks from people who just assume I’m too lazy to walk the trade show floor.

But I’m also sure that eventually people will be able to tell I’m sick just by looking at me. And honestly, I’m dreading that more.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile Ehlers Danlos syndrome. 

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.