Alison sits in a car, wearing a dress and with her hair styled back and makeup on, smiling

One of those challenges that many of us need to deal with is that on top of the physical and emotional trauma involved in our illnesses or injuries, we also often need to communicate what is happening to our loved ones and other significant people in our lives. 

This can be challenging, as we are often still processing it ourselves. 

In my mind, there are two important aspects of communicating with friends and family about what is happening to our minds and/or bodies: one is managing the emotions involved, and the other is being able to explain what is happening and why.

Other people want to know what happened

People generally don’t want to feel left out, and often news of significant trauma (especially a physical one) travels quickly.  

Be prepared for the possibility that if you are managing a sudden physical injury, you likely have little to no control over how that information is initially shared, and you and your loved ones will all be trying to process the incident/accident/damage at the same time.

Al and I went through this when he was injured. 

He called me after he slipped to inform me that he wasn’t coming home as expected, but instead was waiting for an ambulance to take him to a nearby hospital. 

It naturally became my responsibility to share that information appropriately and help respond to the emergency in the moment. 

A car is visible on the street.  Its engine is on fire, with flames easily visible
There’s something about a catastrophe that draws us in, as humans. It’s only natural to want to talk about big events that we see or hear about

The processing needed to come later, and it did. He informed his friends via Facebook the next day, but it took us over a year to really dig down into the medical cause underlying his injury.

Al and I shared relevant information with our friends as we had it, and the response was gratifying and close to immediate. 

People can and do come together in a crisis like this, especially physical damage they can understand. 

Al broke his hip. 

He was in a hospital bed in pain. 

They got it and responded with good thoughts, wishes for quick and thorough healing, and an occasional hospital visit.

Ablism is taboos around mental health and invisible illnesses

When he had a brain injury caused by a car accident, things were more muted. The car was totaled, but he walked away without a scratch(well, once he was able to open what was left of the door).

Fewer people knew, fewer friends responded, and we didn’t share as much.

Al couldn’t fully process his injury, and I was much more focused on having the brain injury recognized and documented, and then managing his care, rather than sharing the situation with friends.

Al wasn’t totally fit for company either, because of his issues with regulating his emotions.

As he recovered, he reconnected with friends, doing his best to ignore his constant headache.

Close-up of a Filipinx woman wearing headphones and a filtering face mask, framed by leaves all around. She is looking downwards.
Just because somebody doesn’t look disabled, doesn’t mean they aren’t disabled.
Image by Disabled and Here: https://affecttheverb.com/disabledandhere/

With chronic or progressive conditions, society has a much harder time processing the issues.

It’s also often challenging to share what you are learning and processing as you learn and process it – especially when your own ability to process information may be damaged.

In many cases, what you learn may be stigmatizing or overly personal, making sharing the details even more challenging.

For example, urinary incontinence is something you just don’t want to mention to your friends, even though it can have a huge impact on your life.

It’s also a problem that accompanies many diagnoses, including my own Functional Neurological Disorder.

You are also especially emotionally vulnerable during this time, so sharing the information doesn’t necessarily come easily and may feel extremely risky. 

There’s a very real fear of rejection that comes with understanding your condition.

The shift from ‘sick’ to ‘chronic’ isn’t easily accepted

Initially, the presumption is that you are sick, so your loved ones do what you do when somebody is sick: give space and minimize social pressure. 

The problem tends to be that shifting your mindset from being sick (and needing to be left alone to rest) to being chronically ill (where the challenges are part of your new normal and shouldn’t keep you from socializing) isn’t easy for you, and it’s even harder for your social circle.

There is also often a lack of communication, as ‘being sick’ has likely disrupted your life routines

There are also many opportunities for either you or your friends to feel isolated, left out, or unimportant (you may feel abandoned, or individual friends may be upset that you didn’t share with person X what you shared with person Y). 

Your loved ones are seeing you in some degree of pain or uncertainty (or both) and want to help, but they often don’t know how. 

It’s easy to feel that you are holding something back (you may be) or not trusting them, and that can be painful to experience as a friend—watching somebody you care for suffering without understanding the why.

A group of disabled queer Black folks talk and laugh at a sleepover, relaxing across two large beds. Everyone is dressed in colorful t-shirts and wearing a variety of sleep scarves, bonnets, and durags. On the left, two friends sit on one bed and paint each other’s nails. On the right, four people lounge on a bed: one person braids another’s hair while the third friend wearing a C-PAP mask laughs, and the fourth person looks up from their book. In the center, a bedside lamp illuminates the room in warm light while pill bottles adorn an end table.
It’s really a wonderful feeling to develop friendships with fellow disabled folks who really get it.
Image by Jonathan Soren Davidson for Disabled And Here: https://affecttheverb.com/disabledandhere/

People also tend to fear the unknown. 

So sharing that you don’t understand your condition may be very scary for both you and your loved ones, and being undiagnosed or incompletely diagnosed means that there are a lot of mysteries and unknowns in your life.

Often, your experience of this type of trauma will thrust your friends and loved ones into memories of their own past traumas or let their fears run unfettered through the mystery that is your condition or experience. 

The other big possibility is that your friends want you to just be okay again, so each time they talk with you and you aren’t, they find it frustrating or upsetting. 

That can easily be misinterpreted by you (or misclassified by them) as frustration or anger at you, which can make any conversation more difficult.

Why aren’t you okay yet?

People also tend to be impatient, especially in this age where most things provide instant gratification. Attention is short and at a premium, so for many people, your healing process is taking too long. 

Since many people conflate being sick and managing a chronic condition, they are often unsure quite what to do or how to behave around you, and may grow tired of waiting or find other friends to fill the needs that you previously filled.

What you can do is communicate openly with your friends about how you are processing your condition and what you have learned and observed—and what you currently feel like you can and can’t do. 

Opening that dialogue on a one-on-one basis with each person you care about is likely your best method to reconnect with your loved ones and manage the emotional effects of your condition. 

Some will be receptive; others may not be.

two women sit at a bar and talk.  One woman is using a motorized wheelchair
Having 1:1 conversations with your friends, keeping them aware that you’re still you despite your condition, can really help you maintain the relationships that really matter.

There’s not much you can do in regard to the unreceptive ones except wait for them to be willing to talk—it’s a difficult and powerless feeling, but changing somebody’s mind is hard, and friendship is a bridge that goes both ways.

It takes time to absorb large changes in life—and very often an injury or severe illness will leave you just struggling to make sense of things for a while.

When I went through about six months of severe symptoms with no diagnosis, I wasn’t thinking about making new friends and wasn’t super focused on keeping the friends I had.

I was mainly putting my energy into keeping myself going and trying to figure out what was happening.

The friends who were part of my day-to-day living (like my roommate and my boyfriend) knew what was happening, and I kept them informed of details and changes, but trying to explain it to more people (such as more distant friends) was a painful thought.

Once I had a diagnosis, I thought it would get easier, and while it did in some ways (I had more of a medical direction and treatments to try), with friends, it was, in some ways, more stressful.

Now the idea that there wasn’t a pill or cream or gadget that would make it all better seemed just unbelievable to others.

Explaining that there simply wasn’t a cure was a difficult conversation and one that I had regularly.

There was no fix, let alone a quick fix.

I had to dedicate myself to building habits to reduce my stress, eating healthier, resting when I needed it, and planning more carefully to minimize my symptoms.

It took me years to be able to try additional supports, such as meditation and mindfulness practices

So glad you healed, let’s go!

Many people will also (incorrectly) assume that when you look better, everything’s back to normal.

Al used a cane for over a year after he broke his acetebulum.

Initially, it was because that was the only way that he could walk (once he recovered enough.).

Later, it was a good way to signal that he needed some extra space, even though he didn’t always need the cane to walk.

Now, it sits in the car, available if he needs it, but mostly unused.

When he stopped bringing it into restaurants when we’d have meals with friends, there was much rejoicing, as they assumed he was “cured” now.

Al stands beside a bulls--eye with an axe buried near the center.  He is smiling and holding a cane.
For Al, the cane was temporary support – but he wasn’t ‘just fine’ after he stopped using it – he was just better.

It’s now been over four years since his injury, and close to two years since he last used his cane.

He is still in some degree of pain, still hurts worse when it rains, even worse when it snows, and he still isn’t comfortable driving over an hour because the pain becomes too distracting for safe driving.

I understand those limits, but to many people, the fact that he’s no longer using a cane means that he’s fine now, and his life is proceeding as if he never fell.

I have been regularly told how great, how happy, and how young I look, even though often I’m nursing pulled muscles, not feeling 100% or just finished or about to start a new shaking episode.

I’ve learned to take the compliment and keep going, but it’s a bit frustrating to have people assume that I’m okay, then get upset and worried when I get symptomatic.

I know when I’m limping or shaking or rocking, and it’s usually in response to a buildup of stress (often excitement when I’m out with friends).

My symptoms just mean that I’ve reached a certain level of excitement or energy, not that I’m in trouble, but I’ll often have friends worrying about me while I’m symptomatic.

Most of them are willing and able to take my word that I’m doing okay, or it’s just the crowds or whatever other detail I share.

Still, to them, any symptom seems to indicate a problem.

I’ve learned over the years that having symptoms is more like sweating a bit or taking a deep breath: it’s an indicator that I’m pushing myself in some way, but not a reason to stop what I’m doing.

But you look healthy!

Part of the problem is that people are used to associating illness or injury with looking sick or injured.

Not all conditions work that way, and many of us with long-term conditions try to focus on the positives and keep the darker feelings to a minimum when we can.

This can lead others to assume that everything is fine and that we no longer need accommodations or supports.

The truth often is that we’ve just reached a point of acceptance and/or inner peace where we make the best of each day.

Alison smiles for a selfie atop the Brooklyn bridge.  NYC is visible in the background.
Even on days when I’m hurting or symptomatic, I can still enjoy what I’m doing.

There is some hope and truth in making this peace, but that does not mean that everything’s fine.

It also can be very exhausting to talk about our conditions—or we’re tired of that being the topic of so many moments in our lives already.

So instead, we focus on smiling or laughing, even when we’re hurting or feeling exhausted.

It’s not easy, but sometimes it is easier to look okay than it is to share the full complexity of our emotions with others.

There is nothing wrong with enjoying the moment, and you deserve to.

The balance shifts, though, if you blame yourself (or others blame you) for not being that way all the time.

While we often can have good days or days where we are having a great time despite our symptoms, these are things we often “pay for” by resting up beforehand and/or taking it easy for days to weeks afterward.

It’s often a price worth paying, but the fact is, there often is a price—and others don’t always see that.

Conclusion: even though there’s ableism everywhere, you can still enjoy your life

Everyone has their own journey to healing, which often starts with a moment where you just can’t keep going.

With accidents and other physical injuries, there’s often a very clear before and after, which is likely to be a topic of conversation within your social circles.

You are unlikely to be able to control how others learn about what happened to you, or how the information spreads, but it surely will spread—people like to gossip and, for whatever reason, tragedy seems to be a popular topic.

People also are often impatient—I’m sure you’ve been impatient yourself about your own healing process—and in many cases, this can manifest as a sense of others wanting you to just get better already, with little understanding of the challenges or processes involved.

You need to proceed at your own pace, knowing that the friends who understand will either stay or return, and those who don’t may never really understand.

For many people, looking better is assumed to mean that you are fine, which is simply not the case with chronic conditions and invisible illnesses.

People often wish or hope that you’ll recover like one can from a cold or similar condition, but chronic and disabling conditions don’t work that way.

Unfortunately, you will find yourself educating your friends and family on this topic.

Repeatedly.

You deserve to enjoy your life even when disabled or chronically ill, so please make sure that you listen to your body and remain true to yourself, no matter what others expect of you.

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12 Comments

  1. what an in-depth share. It’s so true that sometimes people ‘will’ you to be ‘okay’ to make themselves feel a little bit better, instead of you. Let’s hope that more true compassion flourishes in society with more awareness.

    1. I’m with you – and doing what I can to help nudge things in that direction! We deserve to be respected for who we are, and too often others just want things to ‘go back’ to how they were – even though it’s not possible!

  2. I think people have a really hard understanding what ‘chronic’ really means. Everyone knows what pain or feeling tired is, but they can’t imagine it being something that is constant for many of us.

    1. I agree. Too many people don’t get it, which is why I put this post together – to help others in our community be able to say ‘THIS is what’s happening to me right now!’

  3. A terrific and informative share, Alison. Thank you for using several different perspectives to illustrate your points in this article. I’ve found that I lost a lot of friends, including my sister who no longer plays any part in my life whatsoever, but the friends that do get it are fantastic. I’m eternally grateful for my chronic illness community and my chronically ill and disabled friends who get it 100%. I often feel closer to them than anyone else!

    1. Me too – over the years I think my friend circles has completely shifted to people who either have a chronic condition or are willing to really put the energy into understanding! It is so important to really focus on understanding your friend’s needs and respecting them!

  4. Fantastic post on the reality of dealing with disability and illness. I’ve always had a hard time sharing the right amount of information. I tend to not share a lot because when I do it typically goes badly, but when you don’t share, people don’t understand.

    1. And I tend to overshare! Finding the balance is a constantly adjusting goal, honestly – it’s different for each person you interact with, and what’s most important is finding your own degree of comfort and exposure. I tend to be more selective in who I share things with now than I was in the past, but less likely to self-edit what I say!

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