You Don't See the Worst Days of My Illness Because I Hide Them From You

48k
48k

When you see me I’m put together. My makeup is done, my hair taken care of. I’ve learned all of the little tricks to look the most presentable with the littlest effort. I’ve learned all of the little tricks to act normal despite an abnormal illness. I’ll smile, even if I’m in pain. I’ll sit quietly while my body yells at me. I do this to fit in. I do this to feel normal. I do this so others don’t have to focus on an illness they don’t know how to respond to. I do this so that maybe, every once in a while, I might get to seem like I’m not sick.

You haven’t seen my worst days. Because I hide them from you. My husband sees them, my mom sees them. But the nature of my illness is that it asks to be hidden. The last thing your body wants on a bad flare day is to be somewhere that isn’t home; to feel the need to force a smile or try to look presentable. So I hide. Tucked in my little apartment, staring at the ever-familiar walls.

There are few places I will go on a bad day, fewer still on a terrible day. They need to be places I feel absolutely safe in. Places where I don’t have to explain myself. I don’t do this because I’m ashamed of my reality, I do this because I need protection when I’m most vulnerable. But in the end, it lends significantly to people’s misconceptions about the severity of my illness.

You’ve never seen me pass out, but that doesn’t mean it doesn’t happen. You’ve never seen me out of breath from taking a shower, but that doesn’t mean it doesn’t happen. You’ve likely never watched my hands shake or my face turn grey as I gasp for air just from standing. You don’t see these things because I hide on those days. But I promise you that those days exist.

I say all of this because it’s easy to judge a person’s condition by what you see when you’re with them, but you can’t rely on that. When you see me you may wonder why I can’t apply for a regular job. You may wonder why I write about chronic illness so passionately. You may think I exaggerate because I enjoy pity. But when you see me, you aren’t seeing all of me. What you see one day does not accurately depict every day.

I try to be normal because I don’t want pity; I don’t want my illness to be the center of attention. I write because I want people to understand something that is so naturally hidden. I want them to know what happens when they don’t see me so that they can understand what my life is like. Not just because I want them to understand me, but because I want them to understand others like me. I write because I want people to think twice before making assumptions based only on what they see.

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

Thinkstock photo by JZhuk

48k
48k
TOPICS
JOIN THE CONVERSATION
woman wearing hat looking at sky with text 21 things i was unprepared for when i was diagnosed with a chronic illness

21 Things I Was Unprepared for When I Was Diagnosed With a Chronic Illness

1k
1k

So much about life with chronic illness is impossible to understand until you have one yourself. In a world where illnesses are typically expected to have an “end date,” few are fully prepared for the the challenges that lie ahead when diagnosed with a condition that won’t “go away.” Chronic illness can affect not only physical but also social and emotional aspects of your life, and doctors may not tell you about these side effects when you’re diagnosed.

To find out the unexpected ways chronic illness can affect your life, we asked our Mighty community to share what they were unprepared for when they were first diagnosed. By talking about these challenges openly, hopefully others can feel less blindsided by their own diagnosis — and everyone can feel less alone as they navigate their health.

Here’s what our community told us:

1. “A diagnosis doesn’t equal a cure. I thought that once my doctor had figured out what I had, we would create a treatment plan together and I would be able to move on with my life. Instead, my diagnosis has just continued to cause more pain and more unanswerable questions.”

2. “I couldn’t work in my field anymore. It took me 25 years to find a career I absolutely love and am actually good at. And I worked so hard doing my diploma, harder than I’ve ever worked at anything in my life. And got high distinctions on every assessment bar one. Having to accept I can’t physically do that job anymore has been absolutely devastating.”

3. “You spend a lifetime getting to know yourself… then… boom! You have to start all over and fast-track getting to know a whole new person… while at the same time you mourn the loss of the person you were before.”

4. “I was totally unprepared for the isolation and loneliness my illness would bring me. I finally had an answer for what was wrong with me, but I had no idea how alone I was in it!”

5. “I was seriously unprepared for the mental effects. Dealing with the resulting depression and anxiety was just as [devastating] as my chronic illness.”

6.I was really unprepared for the amount of time I would spend in the bathroom, how long it would take to shower, having to plan things far in advance to maximize spoons.”

7. “I was not prepared for the few people who were in my life who showed me kindness, who sat with me, who rushed me to the hospital, who cleaned my house, or brought food. I was not prepared for my husband to marry me sick and believe in me no matter what. I was not prepared for the strength I had within myself or the journey this illness would set me on.”

8. “This wasn’t just a ‘phase’ and not something I was going to ‘snap out of’ or ‘wake up and feel better from.’ I had to learn how to mange it and accept when I had done too much and stop. Stopping isn’t a sign of weakness; it’s accepting my bodies limitations and working within them.”

9. “I was unprepared for the new symptoms that came along. Once I got to the point of accepting one thing, a new one would show up and I would have to repeat the process of acceptance all over again. I was unprepared that I would have to wait, and am still waiting, for a complete diagnosis while I fight this every day without treatment.”

10. “When I was first diagnosed with Ehlers-Danlos syndrome, I had no idea how much was involved with it or those things that ‘clicked’ a few years later when it really started to flare up. I was told it only affects the joints, but as time went on and I did my research, I learned it affects much more than just your joints.”

11.I was unprepared to fight with the medical and insurance system for my health. I thought once I had a name for my condition, I would be able to get the care I needed. Unfortunately diagnosis does not guarantee access to treatment. This goes beyond dealing with ignorant or less-than-compassionate doctors. Many of us are forced to move or travel long distances to get the care we need, and insurance often refuses to cover it without a fight.”

12. “I wasn’t prepared for the guilt I’d feel when my illness required me to stay home from work or school, or when I couldn’t hang out with friends, or basically anything my illness prevented me from doing. People aren’t always understanding, and it’s not like I want to be ill.”

13. “The overwhelming and conflicting amount of information online, from doctors, and by friends on various so-called ‘natural cures,’ Western medications, or all the possible causes of my illness. I had no idea how to sift through what was valid, true, useful or harmful.”

14. “[I didn’t know] I would end up asking for help for simple things. I’ve had to ask for help getting out of bed, out of a chair, getting dressed, walking to the bathroom and even needing someone to feed me because I was too sore to hold a fork.”

15. “I felt relieved. I wondered for so long if something was wrong with me. I just never had the same energy people my age around me had. My periods were so severe, yet my friends would complain about having hard periods but would go out all the time and act natural meanwhile I felt incapacitated… I had all these doubts regarding myself that where answered with a diagnosis. It made me stop feeling so guilty and finally understand myself a bit more.”

16. “I wasn’t prepared for the loss of contact with friends. I would make plans and either have to cancel or in some cases, sleep right through them. People just stopped asking and eventually cut off contact.”

17. “I was unprepared to exist in a wait-and-see-world. My disease has not progressed as quickly as others’ have, which I am thankful for. However, we know I will get worse, we just don’t know when. Will it be in five years, next year, tomorrow? No one knows, and it is scary not knowing when your life is going to turn upside down…”

18. “I wasn’t prepared for watching others do what I used to do without any effort and wishing I could still do it. Everything takes 100 percent more effort, even simple tasks I took for granted.”

19. “I was not prepared for the amount of pain and how that pain would factor into every aspect of my life. Not one single part of my life has not been affected.”

20. “I have to take so many medications. Overnight I had to take six tablets a day, which only increased over time.”

21. “I was unprepared, despite finally having a definitive diagnosis, for other ignorant doctors to tell me I was still lying, making it up for attention, not sick, and just stressed and depressed. That was not something I had expected.”

1k
1k

RELATED VIDEOS

TOPICS
, Listicle
JOIN THE CONVERSATION

Yes, My Illness Is Visible. No, You Don't Need to Stare.

91
91

I can see you staring at me. It’s fine, I don’t mind. I know I look different. There’s a bandage here with a tube coming out of there. I have wheels under my bum that I can’t push. I wear a hat that covers all of my hair leaving you to question…is there hair?

No, I don’t have cancer. You’re still staring. Just smile – it’s really easy.

I know I’m rather thin and pale and have sunken eyes. My feet are turned in and I’m not wearing shoes and I’m in sweats. And there’s even a checkered blanket over my legs. Without question I look sick. Today my disability is visible.

But if you cover my sunken baggy eyes with makeup I’m still disabled. And if I go out I’m still disabled. And you staring longer won’t make me better. Instead, feel free to say hi or compliment me on my badass wheelchair. Keep your stares and trade them out for any other greeting because I could use more friends in this world.

I’m like everyone else – just sick.

Follow this journey on The Real Princess and the Pea.

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

Thinkstock photo via Halfpoint.

91
91
TOPICS
JOIN THE CONVERSATION

When People See My Social Media Photos and Assume I'm Feeling Better

2k
2k

The most common situation I come across being chronically ill is that people don’t believe me, mostly because I am always smiling and laughing when I’m around people. Seeing me smile, people automatically assume that I’m “doing better.”

A few days back, I posted a picture of myself I took when I went out last month and people started messaging me, telling me how happy they were to know that I’m finally getting better. Now, while I know they mean well and are probably just ignorant, it comes off as rude and breaks whatever positivity I built up that day.

It’s so easy to judge someone based on their appearance, but when you know someone is chronically ill, please try to be a little polite while making comments like these. Whenever I post pictures of myself going out, all loaded with makeup and smiling, I get messages like “I’m so happy to know that you are finally getting better,” but when I disappear off Facebook for a long time or share something about my illness, the same people tend to ignore it.

I get that some people are uncomfortable talking about illness and sad things, but if those people really care, I would ask them to please take out a little time to ask me how I am actually feeling, rather than being silent for months only to comment “you look so happy” on one of my pictures.

I have been dealing with severe chronic illnesses from more than six years now and I have spent much of that time on my bed. I’m almost always housebound and bedbound so when I get to go out, even if it’s for a doctor’s appointment, I like to dress up and do my makeup so that I look somewhat presentable.

And because I absolutely love to take pictures, I will give my phone to my mother as soon as I step out of the hospital and ask her to click my pictures, which I then post online because let’s be honest, that really makes me happy. In fact, one of my greatest stress busters is taking pictures and getting mine clicked, so I don’t leave any opportunity in fear of not getting another for God knows how long.

But because people see those pictures, they immediately assume that I’m getting better and when I tell them that I took it just outside the hospital, they look at me as if I’m lying.

Because who would get all dolled up just for a doctor’s appointment? And if I’m really as sick as I pretend to be, how do I get the energy to dress up?

This is when I want to tell them that I have gone to the hospital in the middle of the night, unable to breathe, in my pajamas and with my hair tossing up in different directions. I have spent and still spend days not combing my hair and just using my energy on things that are more important, like brushing my teeth and going to the washroom.

I want to tell them that I go to a hundred hospital appointments a year but I don’t post a hundred pictures because most of the time I’m not even in a condition to make sense of my surroundings.

But there are days when I can afford putting some energy in dressing up and getting a few pictures.

There are days when I like to walk into the cafe right next to my hospital. And when I post my “check in” to the cafe, people immediately message me saying that I never go out with them. I’m sorry but I don’t feel like mentioning my illness all the time. It already takes up a huge part of my life. Sometimes I want to pretend that I am not ill. I don’t always want to write that I went to the cafe after a dreadful appointment or after crying my eyes out at the doctors’. Because that’s not important.

I personally like to focus more on the positive things of life, so even though I have accepted my illness, I try not to let it poke its ugly head in everything.

I like to post my picture in the cafe, laughing at something and then leave it at that. No explanations. Why should I feel the need to explain?

When you have a chronic illness, it’s just about managing. Some days you can’t get out of bed while other days you can go for a little walk or even run.

And that’s completely normal.

Living with a chronic illness, we all have both good and bad days. We have limited spoons (energy) which we distribute into tasks that are more important.

And everyone’s priorities can be different. That’s what makes us human.

I am always up for raising awareness and I really love when people take out time to ask something about my illness (even though it rarely happens). I’m always open to questions because that’s the best way to raise awareness about all the rare invisible diseases that affect millions of people every day.

But when people automatically assume things and fight with me because I went out yesterday but when they asked today I refused, it hurts.

It really hurts.

It takes me a lot of time and effort to plan for an outing and even then it’s almost always cancelled because my body decides to give me last minute surprises.

There’s one thing I want to tell people – please, please try to understand because all we chronically ill people need is understanding, support and kindness. Please know that we are doing our best to live this life, irrespective of what it brings us.

And never ever judge someone on the basis of how they look.

You never know what hides behind that smile.

Find me @its_little_ayra on Instagram where I share my chronic illness journey and the ups and downs that come with it.

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

2k
2k
TOPICS
JOIN THE CONVERSATION

The Anxiety of Leaving My House as a Person With Chronic Illness

7k
7k

Every time I’m planning a trip away from home or a holiday, it terrifies me, especially if I’m traveling alone, because, put simply, I don’t trust my body.

It’s hit or miss if my body will hold out. I plan the best I can, I get taxis instead of buses and I request assistance where I can but it’s still a massive ask, and I don’t know how it’ll go.

I don’t trust that I won’t faint in the middle of nowhere. I don’t trust that I won’t get brain fog and end up lost. I don’t trust that my joints will hold out and I’ll be able to walk. I don’t trust that I won’t get really dizzy and sick and be unable to leave a random bathroom. I don’t trust that my body won’t just give out on me.

Every time I leave my house I take supplies, snacks, extra medication, phone charger or anything else I need in case I get stuck. All I hope is that one day, when I’m more used to my health conditions, this will get easier because for now, leaving my flat for more than a few hours is terrifying.

It feels like my thoughts are constantly racing. My mind has to be constantly occupied or I spiral into panic. As long as I’m busy I’m OK. I do crafts. I work. I practice mindfulness. I play games. I read. I’m constantly on the go. I guess I’ve learned how to manage my anxiety, because it works – as long as I keep myself busy I’m OK. It’s exhausting.

This is just while I’m at home. Once I’m out the things I can do to occupy myself are limited, and my anxiety shoots up. A short trip is OK, like going for a coffee or something. It’s exhausting, but it’s only a few hours. I can occupy myself for that long – it doesn’t take too much out of me. A whole day out is horrible. I’m physically and emotionally exhausted. My mind is constantly fighting against itself. Desperately clinging onto the things that make me feel safe. Desperate to run back home. My mind constantly racing, not stopping on any thought for too long in case it drags me down. It’s exhausting.

This post originally appeared on PoTS & Spoons.

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

Thinkstock photo via Oppdowngalon.

MIGHTY PARTNER RESOURCES
7k
7k
TOPICS
JOIN THE CONVERSATION

The Ongoing Process of Grief When You Have a Chronic Illness

3k
3k

Being chronically ill can often mean existing in a continual state of grieving.

You grieve for the person you once were.

You grieve for the loved ones who have left you because it is all “too hard.”

You grieve for the job you lost, the study you had to give up, the volunteer work you devoted yourself to.

You grieve for the parties you are no longer invited to, the weddings, funerals and functions you cannot attend. Loved ones live and die while you watch from your bed.

If you have had surgeries, you may grieve for your body, the parts you have lost and the damage done to an already fragile being.

You grieve for the person who did not know trauma, did not know pain and did not know that some people spend their whole lives in a perpetual state of sickness they can do nothing about.

Many of us have difficulty handling grief. We might feel discomfited by a display of “negative” emotions in a society that praises positivity above all, even to the point of repression and falsity. No one wants to be confronted with a reminder of their own morbidity and mortality, to be made aware that the world is not a safe place.

Those experiencing grief – not only the chronically ill, but those who have lost loved ones or experienced other trauma in their lives – will know what I mean. The looks you get when you admit you are not, in fact, doing fine. The hasty changing of subjects when your feelings come to the fore or the general shuffling of feet and looks of discomfit when you are honest about your life. “Get over it,” is a not-uncommonly heard phrase. “Move on.”

Given that nearly every single person will experience grief in their lives, this kind of insensitivity seems inexcusable. Perhaps the media is to blame – as a society, we do not discuss grief well (or chronic illness, for that matter). In a world that prefers the black and white – person gets sick, they get better, they are happy, the end – there is no room for shades of grey, for those who have to grapple with their bodies and emotions day after day and manage an unwieldy tangle into some kind of life.

It’s time we start acknowledging that grief is a process that can take a lifetime. That it is OK to not be OK. That being chronically ill can take a significant mental and emotional toll, and that we might grieve not only over our illnesses, but for those who have left us because of them.

No one likes loss – especially not those who are in the process of grieving themselves. We may have no choice, but you do. If someone you love is sick, traumatized or otherwise grieving, you have a choice. You can run away and pretend like if you just shut your eyes tight enough, the terrible things of this world may pass you by, like so many bogeymen in the night.

Or, you can embrace the world, and by extension your loved ones, in all shades of grey – happy, grieving, sick, sometimes fine, sometimes not. Reaching out a hand of support – sending a text message, making a call, asking “how are you?” – takes only an instant, but makes an indelible impact. If you open your heart to someone who needs you, you may well find that both of your lives have been enriched.

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

Thinkstock photo via tatyana_tomsickova.

3k
3k
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

6,300
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.