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The Unique Challenges of Being Young and Chronically Ill

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I think sometimes people forget that a young person can also have a chronic illness or chronic pain. It’s hard having to explain that I am in constant pain at such a young age. I always get, “But you’re so young!” Or, “You don’t look sick,” or even better, “You need to tough it out sometimes. Just think how it is for people who are older than you.” These comments are hurtful. It is hard enough dealing with medical problems at such a young age, and also dealing with other people’s opinions of my sickness. I realize that I am going to spend the majority of my life struggling with my illness. That’s not easy to swallow in itself. As a young person, I wanted to be able to do anything and everything I could before I aged and became less mobile. Unfortunately my body had other ideas and with the crushing diagnosis of fibromyalgia, that is not possible.

Being so young, I also get a hard time from doctors. I was told only a few months ago, by a pain specialist I was seeing, that I was too young to be taking pain medication. I have tried every therapy and drug out there for relief with no luck. It seems like some doctors think you have to be older to deserve pain relief. Why is my pain not as important to treat as someone’s who is older than me? Doctors seem to have the impression that young people should be tougher as well, or that stronger medication is not needed. Going in to the doctor complaining of pain will often get you labeled a drug seeker or you will flat-out be refused because of your age. The stereotype that young people are the only drug abusers is simply not true, and doctors should treat people with chronic illnesses with respect and compassion no matter their age. Respect and trust between a doctor and their patient is vital to receiving good care.

My social life is very small due to my pain. It seems like telling friends or some family that you are tired, in pain, or don’t want to go out and put yourself in pain isn’t a good enough reason to miss an outing. If you’re young, you’re supposed to be able to go strong and party hard… right? Not for young people with chronic illness. Everyone thinks young people bounce back faster from strenuous activities or late outings but the truth is with chronic illness, that doesn’t happen for us. For myself, recovering from sharing a bottle of wine with my girlfriend takes a good two days of rest and non-strenuous activity. That’s only sharing a bottle of wine sitting in front of a nice relaxing bonfire! For more strenuous activities, such as swimming or bowling, it takes even longer to recover. I have to pick and choose what to do based on how much time it’s going to take to recover and whether the pain and exhaustion that follows is worth it or not.

I feel that the young part of the chronic illness community often gets ignored, or treated as not as important because we are young. This is another hurtful thing to see. Young people are not faking it, or lesser because we are younger. I wish everyone in the chronic pain community would respect each other equally. We are all fighting a battle against an illness and should band together. Young, old, and everything in between, everyone with a chronic medical problem deserves to be equally respected, listened to, and trusted. Don’t you agree?

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To Someone I Love Struggling With Chronic Pain

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To someone I love struggling with chronic pain,

You wake up in pain. You go about your day in pain. You go to sleep in pain. You say your life is mostly misery. I wish I could take all of it away. I wish I knew the cure or even a way to lessen your pain. I wish I could fix it. I wish you at least felt loved.

You might think everyone around you is frustrated and mad at you because we don’t care.

Nothing could be further from the truth.

We are not mad at you. We are indeed frustrated, but not at you and not because we don’t care. It’s because we care so very much for you that we’re so frustrated with what you’re experiencing.

It’s not fair what’s happening to you, that life has left you with so many challenges. It’s not fair we can’t fix it. It’s unnerving to be so helpless. I know I can’t fix it. I can’t do a damn thing for your pain.

All I can do is not give up on you.

I can listen when you need to talk.

I can talk when you need a distraction.

I can cry for you and send all my positive energy your way.

I can’t help but feel like you still have life left to live, that you’re not finished doing everything you want to do. I’m not done learning all I can learn from you.

So I will continue doing everything I can for you, even if those things are seemingly small and insignificant. They are the only things I can do and they allow me to feel like I’m doing something at least.

Please know how loved you are. How grateful I am for everything you’ve done for me, everything you continue to do. Know when I lose my patience, it’s not with you, but with the situation. Know even though I can’t feel your physical pain, I can see it and what it’s doing to you and I ache with you. I don’t doubt for even a second that you’re feeling all the things you say you are, things I wouldn’t wish on any human being, especially one so dear to me. Know my heart breaks for you daily and any anger that comes from me is just part of the grieving process. Know if there was anything I could do to stop your pain, I would do it without hesitation. Know that I love you and will never give up.

Follow this journey on Mel’s Empty Journal

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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When Chronic Pain Took Away My Identity

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On February 7, 2013, I woke up, got dressed, went to class like any normal college student and returned home. I went for a jog and did some studying in the duplex I lived in that I had nicknamed “The Cave.” There was only one window in the common area of our part of the house, and it was mostly covered by a bookcase, making our home quite dark most of the time. I hated that about that house. I had no idea I would be so thankful for it later.

On February 8, 2013, I awoke with a strange one-sided headache, but I didn’t think much of it. I got the occasional headache like any average person, and I figured a couple Tylenol would kick it, and I would go about my day as usual. I went to class again and had a fairly normal day, but the headache didn’t want to budge. I tried some Excedrin and turned down a dinner invite from my grandma so I could try and sleep off the pain. I had no idea that was the beginning of what would be my new normal for years to come.

Once the headache had lasted for a solid week with no change, my mom suggested I go get my eyes checked out. I made an appointment with an ophthalmologist in town, and a few days later, I was told my eyes looked completely fine and not to worry. The ophthalmologist thought it was probably just some sinus pressure and told me to take Advil twice a day for a week or so and that should take care of it.

I’m sure you can guess the Advil didn’t do a thing, and I was referred to neurology. The neurologist ran some tests, and when everything came back clean, he told me he suspected I had new daily persistent headache (NDPH). I’d never heard of it before, and the more I researched it, the more upset I became. How dare he diagnose me with something so poorly understood with no clear treatment plan and very little relief even with treatment. How could he tell me that the past month I had endured with this pain was likely going to be something I just had to live with? Did he not know that I was going to be a Fightin’ Texas Aggie next semester, and I was going to get my degree, have a family and live happily ever after? Who did he think he was to derail my plans with that diagnosis?

The next few years of my life were spent fighting for an explanation that would never come while trying my best to keep all my hopes and dreams on track. I did become an Aggie (Gig ’em!), and I learned my passion is in agriculture. I did my best to hold on tight to my life as I wanted it to be. I learned to juggle medication changes and hospitalizations with being a college student and tried my best to have a social life.

However, the headache was relentless in demanding more and more of my life, and I eventually had to withdraw from the university of my dreams after a two-week hospital stay during the middle of a semester.

Since then, the pain has claimed so much more of what made me, me. I’ve had to give up school. I’ve lost relationships. I’ve lost my energy. Friendships that were once easy are now strained simply because life with chronic pain is so hard to understand. More recently, the mystery headache has claimed some of my eyesight, and I usually have pain in my eyes that feels like there’s a knife behind them.

I have had to mourn the loss of my old life and try to learn how to accept my new one. Sometimes I miss my old self so much it physically hurts. I miss feeling productive. I miss feeling spontaneous. I miss feeling energetic. I miss not being exhausted constantly. I miss feeling like I had a future outside of doctors and medicine.

I’m trying hard to find my identity again. I have lost so much of myself after I worked so hard to become who I was. It’s hard to accept who I am now. It’s as though I used to be a tree with branches and leaves all over, and then chronic pain came by with a chainsaw and left me with just a stick.

I’m slowly growing again, but my tree looks very different than it did before. I have learned to be happy with the low-pain days and not angry that I don’t have pain-free days. I’ve learned what I’m willing to fight through the pain for and what I need to let go in order to function.

I’ve been shown great love and support from people I never knew even thought about me. I’ve learned being someone’s aunt is absolutely one of the greatest sources of joy I’ve found in life so far. I already knew I had a wonderful family, but it has been proven to me over and over since this roller coaster began.

I miss who I was and I hope and pray that someday I’ll be able to feel like I can take on life again, but for now I’ll live in the small triumphs and do my best to see the silver linings.

What’s a part of your condition you live with every day that others might not see? Explain what that experience feels like. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Inside the Mind of Someone With an Undiagnosed Pain Condition

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There are many emotions that come with having an undiagnosed pain condition. For me, the most prominent emotion is fear, because I am in so much pain all of the time and have no idea what is causing it. This makes my mind race, constantly worrying and thinking of the worst possible scenarios. I then obsess trying to find patterns and causes and figure out what makes the pain worse. This causes my anxiety to sky rocket, and although I try to be patient and grateful that the doctors are doing all they can to try to figure out what is going on, it is very difficult to wait for a diagnosis.

I also find myself feeling helpless, because I don’t know what the problem is, no one can tell me how to fix it. I don’t know how to make it better for myself; I don’t know whether to push myself or whether that might make things worse and it is better to rest; I don’t know whether I am taking stronger and stronger painkillers, which may be pointless and causing other problems for my body. I feel very frustrated, because without knowing what I am dealing with, I don’t know how best to manage.

As far as the doctors go, I have been lucky so far, as they are doing their best (with a little bit of pushing) to try to get answers for me. I know this is not always the case for some people, so I do feel blessed in that respect. However, the attitudes of some doctors when I try to explain the pain is everywhere and I have no idea what is causing it, seem to be very skeptical. I get the distinct feeling they think I might be exaggerating, which is confusing and extremely annoying, since I wish more than anything the pain didn’t exist or wasn’t this bad!

Overall I try to manage the best way I can, and be patient in waiting to find out what is going on. I try to remain positive, as I know that I can get through this with the help of my support system, and I just need to keep pushing on.

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The 'Greatest Gift' That Gives Me Hope as I Battle Chronic Pain

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Last night my husband Eric helped me outside, bundled me in the wheelchair and wheeled me about four houses down the block. Other than little trips to sit in our front bench or back deck, this was my first foray into the outside world in seven days. So you can imagine it was glorious.

The world of evening spring grabbed us in a bear hug.  The embrace of reunited loved ones.

It’s rained a lot the past few days: the street smelled like spring’s perfume. It turned the trees hanging above us a brilliant beautiful emerald, a green that evokes long ago memories of my Catholic school teachers telling my child self that green is the colour of new life on God’s earth.  

It all comes back to me so clearly now, on these days I spend much time in bed, willing pain away. I stare darkness in the face, want to scream it down. I want my life back.

The darkness recedes, memories push through. I am back in my second grade Catholic school classroom. Sunlight floats in through the hard metallic window. Endless sunlight. No pain. Only hope and promise.

My stubby 7-year-old fingers push a hard wrinkled brownish bean into a dirt-filled Styrofoam cup. I wait on the promise of a small green bean plant. If it grows, I’ll have a gift to give on Mother’s Day. I learn hope as I wait for the moment when the first small green shoot leaps out of mere dirt toward the sun, like a prima ballerina born for the stage.

Ahhh memories. These days as I’ve slid, as if down a terrible playground’s slide, through pain and disability, the memories are more precious than I knew memories could be. How is it that in a time of physical loss I learn just how precious life is? That what a gift there is in the lives we live? That ordinary life is nothing short of spectacularly miraculous?

It makes me kick my heels into the slide. Makes me pull myself with all I am back up. Against the darkness. Toward the light.

Birds chirp their springtime concerto. The sun warms my face, even as evening wanes. I love that in this part of Canada at this time of year it’s still bright so late in the day.

Our walk/ride ends; the green trees dip down, wave good bye. Grasp my spirit in a “see you soon” hug. Eric returns me and the wheelchair back home.

We pass the little wheelchair accessible garden I began planting a few weeks ago. I was feeling pretty good just a few weeks ago. It is a beacon to where I hope to return.

I point out to Eric: a small, tiniest of tiny little green plant has poked up through the soil! This is sheer delight — whether in a second grade classroom or to a life-aged, pain-battling mama.

“No,” Eric says. “Look again.”  He lifts the pot close up so I can see. And I do see… so clearly.

All over the pot are tiny little green points. They are minuscule, some barely bigger than a pinhead. Too small to be called seedlings. Or shoots. Barely plants, experiencing their first ever taste of sunshine and spring air. Their first taste of life.

And my heart discovers. Sometimes life is hard. Hope seems faint. Pain and darkness seem to win. But those little shoots, tiny as they are, are victory embodied over darkness. They fight pain and herald life.

New life. Green life. The greatest gift of all.

And my heart says thank you.

The Mighty is asking the following: What was one moment you received help in an unexpected or unorthodox way related to disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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To Anyone Who Has the Power to Help People With Chronic Pain

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There are those of us who simply can’t just bury our heads in the sand.

There are those of us who are depended upon.

There are those who can’t ignore the pain because they live with it every minute of every day with no way to turn it off.

There are those of us who care and want to turn it off.

There are those who had some relief with opioids and narcotics but now are being deserted, alienated, marginalized and forgotten.

There are those of us who keep fighting, advocating and reminding those who choose to ignore the cries, sobs, screams and pleas of the person with chronic illness and pain’s need for help.

There are those of us who bear witness to the pain, who cannot ignore it. It is within our hearts, our homes, and is all-consuming in our worlds.

There are those of us who after the long search for answers, treatment, empathy and action from those with power to make change, to protect those in pain who can’t advocate for themselves, can only sit on our hands and watch while our children, spouses and loved ones writhe, cry, sob and scream with pain. It is too disheartening for those of us.

There are those of us whose lives have been halted, dreams unfulfilled, lost and forgotten. No joy. No hope. No life.

There are those of us who are now just too tired. Too tired to even bury our heads in the sand.

Where are those others?

There are those who turn their backs, who can’t or don’t bear witness, perhaps because it is too painful — too painful to even contemplate.

There are those who believe the problem will go away… just ignore it, choose not to believe it. It is easier to be angry and accusatory: This can’t be so, it’s all in your head, you are a liar, lazy, a malingerer, being over-dramatic. It’s easier to believe this than the truth: Agony is real and is tormenting someone, someone you may love or just someone… one of those people.

There are those who are ignorant, who don’t understand, who don’t have a capacity for empathy.

There are those who simply can’t handle the truth and so must ignore it, deny it and wait for it to go away.

There are those who will disappear until it goes away or until they themselves finally do. After all, it’s sad. Who wants to deal with that?

There are those who can put their head in the sand. If living and dealing with a loved one’s chronic pain is not in their immediate world, and sometimes even if it is, as is the case of extended family or friends, they may choose to ignore, disbelieve, or wait for it to go away. “Are you better yet?” No. Chronic illness and chronic pain doesn’t just disappear. Neither does the patient’s soul and need for love, support, and compassion.

But, they are “those” people, not you. You, the doctor, politician, neighbor, friend, and relative can choose to ignore “them,” demoralize and deny them their cries, for help. Or, you can pull your heads out of the sand and demand humane treatment for the chronically ill from our legislators, congressmen, senators and governing regulatory agencies. Chronic pain survivors must not be denied access to opioids and narcotics that have been used to afford them their only relief, if only minimally, in daily pain.

Those people are not drug-seeking addicts. Those people are patients!

Patients, not addicts! They deserve to have relief while further research and development of better pain management alternatives are sought and advances in cures for chronic illnesses are made!

There are those of you who have the power to do something!

Hear my plea, I beg, from those of us who find ourselves alone.

I can’t bury my head in the sand.

I bear witness to the pain.

I am one of those people.

I choose to help.

Which one of those people are you?

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