sketch outline of woman's face with small smile

To Those Who Find My Illness 'Hard to Understand' When They See Me Smiling

115k
115k
92

My husband and I had a conversation about how others perceive my illness the other day. It wasn’t a confrontational conversation — it was more the random musings that happen when you’re waiting for dinner to come out of the oven. Joe mentioned that a mutual friend had once said to him (not an exact quote), “I understand Tiffany’s illness, and I think people believe she’s sick. It’s just hard for them to understand when they see her out and she’s smiling and bubbly.”

Hmm. OK, I’m typically the great empathizer, so I can try to understand what others see. I can understand to a degree that it’s difficult for people to see a 30-something with a loud voice and ridiculous laugh and reconcile that with the stories they’ve heard about me being ill. I suppose I can understand how it’s all confusing.

But, geez Louise, people! How on earth am I supposed to act? If I’m in public, I try to act like I belong in public. I don’t leave the house if there’s no chance of me staying conscious. When people ask how I’m doing, I say, “Fine” or “The best I can” and I smile. That seems normal, and that’s how I’ve chosen to handle my illness. If I know that I have an event to attend (even if it’s a seemingly “no big deal” event like dinner with friends or an evening basketball game), I prepare the entire day beforehand, so I will seem “fine.” I rest more than normal. I don’t lift anything or do any exercise, so I can protect my joints. I eat foods that aren’t likely to make me sick. There’s a lot of work that goes into appearing “fine.”

The problem with so many people who live in my world of chronic illness is that we never fake being ill — but we’re masters at faking being well. I think it makes people uncomfortable if I’m honest about how I’m feeling. Think about it. If you say, “Hi, Tiffany. How are you today?” and I reply, “I feel horrible. I just popped in a dislocated elbow, and I’m really nauseous now” then the conversation is awkward for everyone. You might suddenly feel like you have to offer me some sort of comfort (You don’t.). I feel awkward, because you’re pitying me. It’s just more difficulty than I want to add into running my errands or joining my husband at a football game.

An acquaintance recently asked if I’m “doing better now.” Well, that’s complicated. In that exact moment, I had been running errands for a bit. I was drenched in sweat and shaky. In that moment, the answer was “no.” In life in general, I have a chronic condition. There will always be good days and bad days. There will more than likely never be a time of being better or worse, because symptoms seem to come in unpredictable waves — the kind of waves that sweep you off your feet and make you eat sand and get salt in your eyes. However, the best response I could give this person — who had all the best intentions — was to say, “I’m trying my best to do better.” Cue the smiling and awkward giggling.

So, for the sake of everyone else, I’m going to keep giving oversimplified answers to difficult questions. Please, don’t misunderstand. I appreciate that people include me in small talk. I choose to keep my answers simple, even if they don’t accurately describe my current condition. I don’t feel like I’m lying — I’m shielding people from an uncomfortable truth. We all do it to an extent.

To the people who don’t feel like I act “sick enough,” I have no apologies. I’m doing my best to handle this life — same as you. I’m open to questions, because I understand that my reality is quite different from that of my peers. Let me share with you about my world. There are needs and concerns that exist for my chronic illness friends that others our age have never considered. I don’t expect those who don’t live this life to understand. I don’t fault anyone for not understanding either. I’m simply asking for the benefit of the doubt. Trust me, with this body, I’m bound to prove to you that I’m sick if you watch for a bit.

Peace, love, and health, friends.

Follow this journey at Crazy Chronic Life.

115k
115k
92

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

This Is What Chronic Illness Looks Like

1k
1k
8

This is for everyone who just doesn’t “get it” when it comes to chronic illness and invisible illness.

For some reason, you think that we are supposed to look sick and not be part of the outside world because when we do go out, you no longer believe us when we tell you we are in pain or that we just need to sleep for the day. You act like we aren’t allowed to enjoy life at all because “sick” people don’t do what we do. Well, guess what! Wake up call: This is what chronic illness looks like!

six women in two rows on pink background
Top row, left to right: Tara Hamm: fibromyalgia, PCOS, bipolar disorder, depression; Angelina Lewellyn: fibromyalgia, depression, chronic migraines; Allison Perkins: Crohn’s disease.  Bottom row, left to right: Krystin Kirk: Hashimoto’s disease; Justine Supp: fibromyalgia, Ehlers-Danlos syndrome, PCOS, depression, anxiety, arthritis; Vanessa Rastovsky: Crohn’s disease

We love makeup, we love our friends, we love hanging out with them when we can, we love having a good time, taking our pets for walks, being involved, etc. and we need recovery time after doing some things. We may not walk around wearing medical masks, we may not walk with a limp (all the time), and no, we don’t always require wheelchairs. We don’t walk around with a frown all the time. We don’t constantly complain about what we are going through, because just as much as you’re tired of hearing it, we are tired of dealing with it every single day!

You won’t see many posts, if any at all, of us explaining how today just wasn’t a good day for us and we stayed in bed so we didn’t have to feel the pressure and pain of our feet hitting the ground. Some of us work and some of us don’t. Many of us probably shouldn’t be working so we can better tend to the difficulties we face every day. But we do it anyway and we push ourselves to be a part of the “normal” world. We might regret it each and every day, but we get up and do it again over and over and over. Disability services don’t always acknowledge those of us with chronic/invisible illness, so that’s hardly an option for some of us. But some of us slip through the cracks and are able to get the approval so many of us wish for. That’s just the fact of our lives. We deserve to feel like a part of society.

If you can’t understand this and already have your mind made up about who we are and how sick we are, then please keep it to yourself. We don’t need to deal with the negativity (FYI — stress gives us flare-ups)!

1k
1k
8
JOIN THE CONVERSATION

The Hurt That's Caused When People Doubt Your Disability

1k
1k
7

Before my disability became so bad that I needed to use crutches or a wheelchair, people never understood. Even now people still don’t understand. On a daily basis people see me use a wheelchair and then stand up and walk. They say, “Oh, so it’s not permanent?” Yes, it is permanent. My disability is not going away, and it is actually getting worse. What you mean to say is I am not paralyzed. I don’t understand why, but it is a common misconception that everyone who uses a wheelchair must use it 24/7. 

Not everyone who uses a wheelchair is paralyzed.

Not everyone who has a disability uses a wheelchair.

When I was in my teens and just beginning my journey in this disabled life, so many times I was called a “faker” by the able-bodied and disabled community alike. I felt like I was in limbo. I didn’t belong anywhere, and nobody could tell me what was going on. Was I “crazy?” I didn’t think so, but when you are told something so often by so many people you begin to think it is true. 

It made it very difficult to trust people. I didn’t know whether to tell them or not. Do I disclose or hide it? If I hide it and then have a bad day it all comes out in the open really fast. Then I am left with the question of whether or not they will stay. Will they believe me? Will they call me a freak and never want to talk to me again? What should I do? These questions I dealt with on a daily basis for so long. I only let a very small number of people into my life. I put up walls so tall and so strong it took many years of hammering by my husband and my closest friends to break it down. I didn’t even let my family in my circle at first. I didn’t tell them about all of my struggles, my symptoms, or my flares for fear of rejection. I feared they wouldn’t believe me. I was a teenager, and everyone told me I was young and healthy-looking and I shouldn’t be feeling that way. But I was. And that continued into adulthood.

Only just recently have I begun to learn what is going on in my body, and finally I have been able to gain some peace. The things I was experiencing all those years were real. Only just recently have I begun to let others into my circle. My family and friends are just now learning all there is to know about me. All of those years of anger, self-doubt, shame, fear, sadness, and loneliness take a toll. I have to learn to trust again. As a society we need to stop putting people through this pain. 

The truth is, the things you can’t see in someone are real, and people need to make sure to be careful about how they approach someone struggling with an invisible disability. Whether it is a physical disability such as multiple sclerosis, fibromyalgia, diabetes, etc. or a mental illness or intellectual disability, it is a tough road to go down because to the rest of the world you look “normal.” I still do. (I think). If you took one look at me, not knowing me and my daily struggles, you too would probably think I am faking. But it is real, and those negative words saying we are “faking” or “crazy” or “it’s all in your head” can hurt people so terribly. It can cause damage that is sometimes irreparable. We need to help break down walls and get people talking. Don’t add bricks to the already solid foundations being laid by the media, society, and even some doctors. Those bricks just make the walls we build around ourselves stronger, and we then become like our disability. We become invisible.

1k
1k
7
JOIN THE CONVERSATION

To the Person With a Chronic Illness Returning to School This Year

351
351
2

Dear friend,

You may not know who I am, but I’m writing this to you. I’m writing this because I care for you, and I believe you deserve every single word of encouragement for this upcoming school year. I know how sad and scared you might be to go back. I understand how much your illness can bring you down. But I’m writing this to tell you I believe in you. Yes, you right there. Each and every single one of you.

Maybe this is your first time back to school after some time off, maybe you are starting college or maybe you are going back to fight through yet another year.

I want you to know how brave you are and how proud I am of everything you have overcome. Take a second and look at your path and all the obstacles you have overcome. You are a warrior, and you are a fighter.

The road ahead may not as clear as a transparent window; it may still be a little bit translucent, but I believe with each step you take forward and each battle you fight, it will clear up a little bit each time.

This school year, don’t be afraid to reach out to the resources at your school that are there to help you succeed. Whether it’s asking for an extension or asking to write your test in a different room, reaching out for help does not make you a failure. Reaching out for help makes you a fighter and can put you on a clearer path.

I ask that you remember to listen to your body. Don’t push yourself over your limit. I know how hard it can be to see your friends living and feeling like you are just surviving. But I tell you what — you are not “just surviving,” you are living. It’s just in a different way.

Put your health first this school year, and don’t be afraid to stand up for yourself if a classmate speaks against you regarding your illness. Don’t let their words hurt you. With everything you have been through and overcome, those words mean absolutely nothing. You are so much more; you are worth everything. Take a stand and don’t let yourself be taken down by acts of ignorance from your peers. Not only are you strong — you are the definition of strength.

Be honest with your friends. Remind them how much you appreciate their friendship. When you feel like you are letting them down on a sick day, remember that you come first before anything. Instead of getting mad, explain how much you would love to hang out and perhaps invite them over for a Netflix night. It is hard for friends to adapt when they have a friend with a chronic illness. It is hard for them to understand, and they might see you as someone continuously making up excuses. But a simple message saying, “I’m really sorry, I really wish I could hang out but I’m not feeling so well. Maybe you guys can come over for a movie later because I really do want to spend time together. I miss you guys,” could change everything.

If they don’t understand, it is not your fault. Please don’t hate yourself. There are plenty of friends out there who will appreciate you and treat you the way you deserve to be treated.

Also, don’t forget about your teachers. Maybe stay behind in class, and if you have to, tell your friends that you have a homework question. This way you can tell your teacher what is going on as a way of helping her understand without having to speak in front of the entire class.

My dear friend — take things slowly, breathe, try your best and don’t forget to smile. I believe in you, I really do, and that smile you have looks good on you. Use it often this year. Embrace it. And each and every night, do not forget to congratulate yourself on how magnificent you are for getting through the day.

Good luck this school year. May it be filled with progress, good memories, laughter and of course, plenty of rest. I wish you all the best.

Yours truly,
A friend with a chronic illness, too

351
351
2
JOIN THE CONVERSATION

What Emergency Room Staff Needs to Understand About Spoonies

3k
3k
6

There’s nothing fun about being sick all of the time. Seeing doctors is a job — closer to a full-time one than you’d think. Most spoonies have many different types of doctors, and there are times it feels like we need a personal assistant, or a receptionist of sorts, to help us manage all of the appointments. We never know what to expect, or what our bodies will put us through at any time.

In our worlds, it seems no one knows how to help us. There are a lot of people who don’t even believe us. Not many people will truly stop and listen to what is really going on. It’s no different in the ER. Doctors and nurses either don’t know how to help us and don’t want to admit it, or they too, just like the rest of the world, may not believe us. They may think we are only there for the drugs and even mark our files to show drug seeking behaviors.

They don’t understand how long we agonized over our decision to go to the ER, because we have been down this road of disbelief many times before, and sometimes it’s too much to take. It’s almost not worth it, we might think. It’d almost be easier to suffer in silence. It’s not like we haven’t done that before. Let’s not even talk about how heartbreaking it is when our bodies are tearing us up inside and out and no one will help us. That’s a heartbreak no one should ever have to experience.

The medical staff doesn’t seem to understand what it’s like when we finally decide that our situation, is in fact, an emergency. It’s too much to handle alone anymore. For many spoonies, the pain that sends us to the ER is a pain dealt with for far too long, a pain that would have sent a regular person to the ER long ago. We go to the ER and we wait and we wait, and then we wait some more. A nurse and doctor will come in and listen for a few minutes, maybe make a hasty diagnosis of something we most likely already knew, and give us an equally hasty treatment of some sort, and then we wait and we keep on waiting. Eventually we may be sent home with a doggie bag of drugs that may or may not be of any help.

What needs to happen in the ER is for the doctors and nurses to look past the seemingly obvious and really see us. Maybe if they stopped and listened they would understand why this is upsetting. Maybe if they stopped to think how they’d feel if someone treated them indifferently. Try looking at the person before you with passion and care, not just a repeat offender or addict, or system abuser.

ER doctors and nurses, please try looking at your chronically ill patients as people who are desperately trying to feel better, because that is all we really want. Try guiding us in the right directions if you think we are headed the wrong way. Help us with how to talk to our primary care physicians so we don’t always have to come back. That kind of help would lead to less emergencies for us.

Understand that chronically ill patients and the constant-ness of our sickness are scary to medical staff — that you don’t necessarily know what to do if you can’t magically fix it all. Remember that it’s even scarier for us. Also understand that the ER is sometimes our only option.

So, ER doctors and nurses who dismiss their patients, or leave them for hours in blinding pain, come check on us once in a while when we are with you. Treat us like we matter.

3k
3k
6
TOPICS
JOIN THE CONVERSATION

I Took a Day Off From My Chronic Illness by Going to a Demolition Derby

15
15
1

It can be easy to get lost inside your chronic illness. I think it can become a part of who you are whether you want it to or not. But chronic illness does not have to define you.

It’s important to get up and do something for yourself. Go beyond the normal self-care and dress up. Include makeup if it makes you feel better about your appearance. Then show up to an activity you wanted to go to but thought about skipping because of your chronic illness. You’re allowed to have a day off from being chronically ill. Enjoy your time out of your secluded house. You are not your illness.

I decided to get up, dress, up, show up and never give up this weekend. My boyfriend, Luke, and I went to a demolition derby. I felt beautiful again for the first time in months despite the prednisone weight gain, moon face and chronic swelling in my hands and feet. I was able to be the old me for one day.

Was it difficult? Of course it was. Just because I decided to partake in an activity doesn’t mean all of my pain went away. A chronic illness cannot be wished away, but it can be managed.

With the right medication and the perfect company, I was able to enjoy my time out of the house and watch some trucks get destroyed! The demo derby was a great success. I had so much fun. This experience has prompted me to make a lofty goal for myself. I want to get up, dress up and show up to one extra event a week. One fun event with friends or family or even by myself.  Will that always happen? Maybe not but it’s a goal that I feel could be attainable. 

While facing a chronic illness, it’s important to remember you’re not losing your identity do the illness. You might have to make some changes to your life. Maybe everything you used to do isn’t possible anymore, and that is OK.

It’s important to keep trying to have a normal life, whatever your definition of normal is. My normal is date night with Luke. This week was the demo derby. Next week we’re going out with friends on Friday night. Who knows what the weekend beyond that will bring! I am excited to keep pushing forward and find out.

15
15
1
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.