Turning Straw Into Gold

Life through a Buddhist lens

The Extra Burdens Faced by Young People with Chronic Illness

From years of writing about chronic pain and illness, I’ve learned that young people carry several extra burdens, especially when their disability is invisible, as is more often the case than not. This piece focuses on young people, although some of its points apply to people of any age, depending on their circumstances. Read More

Thank you for this thoughtful

Thank you for this thoughtful piece. As a young person with a chronic illness, it is incredibly hard to see my peers live a carefree life while I'm mostly housebound. I worry about not being able to study and work, and who will take care of me when my parents become too old. This is a burden no one should have to shoulder,

..

I can only Concur with Siobhan's view on this matter.
I think it is even more terrible that usually the people in society considered to be the baddies have unlimited health and strength.
Where is the Justice God?

Benevolent? I don't think so.

People can't even imagine

No one can imagine the strain a chronic illness has on a young person, no words, ideas or thoughts can even comprehend. People shouldn't know about illness until they are very old, young people with illnesses live crippled lives. There has to be an emphasis in society to cure these sicknesses so that people can live (at least on the surface) fairly normal lives.

Thank you, 27 chronic pain since 11

Thank you for a great article. I was laying here trying to find info to try educate my family on what it is like to be in agony day in day out and pretty much house bound. However for any of my fellow pain sufferers I think it's important to not compare yourself to others. I have shocking back pain that started at 11, I am still traumatised by how many people never believed me but also I look at others who may have had a car crash or a bigger back surgery and they are pain free and wonder if I am just weak, need to harden up. Despite the extreme pain, five spinal surgeries, two more to come in the next month I am proud that I did manage to finish school, go to college and have a successful career but my biggest accomplishment is marrying my husband who never questions my pain. I unfortunately can no longer work but I hope to find a hobby and volunteer to help other young pain sufferers.
To all you out there, please never give up and don't feel alone. Xx

The alienation of friends has

The alienation of friends has been very painful for my daughter. She feels so alone and I don't know how to fix this problem. If something happens to me she has no one and I worry every night. I wish her friends would be true friends and comfort her and spend time with her.

Thank you SO much for

Thank you SO much for this...as someone with multiple chronic illnesses and no family trying desperately to get through school for a career change that I HOPE and pray will allow me to support myself and work for as long as possible, I cannot tell you how much this article hits MUCH needed validation of the struggles I'm facing...between the financial, the medical, the physical...and having to hide it all from my school and the few friends I have, perform to the same standards as everyone else (while juggling MD appointments, procedures, and even hospitalizations) is its own "job" on itself...so exhausting and frustrating--and lonely. I'm determined and I WILL make it happen....but it's nice to know SOMEONE out there "gets it".

You don't have to face this

You don't have to face this alone...keeping your illness a secret creates even more isolation. You don't have to go into detail, but you don't have to live in a closet either.

hiding/keeping secrets

True...in theory, I "shouldn't" have to hide my illness. And maybe if I had family--the kind most are lucky enough to at least HAVE, no matter the relationship, for "better or worse"--I'd feel less afraid to open up. But in my particular situation, I've learned the hard way that my illnesses scare people: the more they know, the more they care about me, the more scared they are, and they tend to run (because it's overwhelming to them-->to be completely helpless in the face of a set of disorders that is progressing with no treatment or cure). And those who know less or care less (school/work/casual aquaintances) don't really care, think I'm exagerrating (that "you don't LOOK sick" nonsense....I don't LOOK sick bc I work very hard not to!), OR think I should "take time off until it gets better" or "give up" (so....I can be homeless and wait to die? no thanks)
I don't think there's a "right answer" for anyone....I do have a few people I share things with....and I try to tell them that I just want them to listen, to be "with" me, that I know they can't fix it and I know it's uncomfortable....unfortunately, people like that are harder (for me anyway) than one might think to find...

Hi

Just wanted to say hi and so sorry you are struggling, I remember school being such a huge challenge and no one really caring. If you need someone to email or chat I am more than happy too. My pain story is briefly above.

One other challenge for young people

I think one other challenge that young people with chronic illness face is that during the teen years, part of the process of becoming an adult is drawing away from one’s parents and becoming increasingly independent. That’s hard to do when you’re too ill to care for yourself and your parents are your caregivers. It makes the already difficult process of growing up that much harder.

Loss of independence is difficult for chronically ill people of any age, but with young people, it can interfere with their developing sense of who they are as individuals.

sigh

This resonates as I think of family members living with chronic pain and lifelong illnesses. Thank you for posting this Toni.

I can relate to every one of these points....

Thank you so much for this article. It validated a lot of what I've been feeling. I struggle getting my own family to understand my illnesses. My own mother definitely has the "you're too young to have pain" and "young=healthy" thoughts. I keep trying to educate her but all she sees is the time spent with me while I am pushing through the pain and fatigue and thinks I just want attention most of the time. It is a very lonely place to be when nobody understands. I have multiple illnesses but she mostly sees them as "not that bad". I hope one day she will be more understanding which would be helpful as she is my main method of transportation (I have Epilepsy and can't drive for the time being). The fact that Fibromyalgia does not have a standard, physical test to diagnose doesn't help me as she accepts diagnoses with definite tests more than ones done by symptoms.

Thankyou!

I gain so much from reading your articles, as they're so validating. THANKYOU! Even if I didn't have a chronic illness myself, they would educate and give some understanding about what loved ones may be feeling. Have you written anything about being a young CARER with a chronic illness? I'm still youngish (37), but finding it increasingly difficult to care for my mother - who has different issues, with different needs. My carer role has perhaps the greatest impact on my health on a day-to-day basis, and it feels like I'm alone in that.

Thank you!

You have summed up my struggles so well. I had to give up the dreams for a career as a concert pianist that I have held dear since I was 12 years old. People don't understand how my physical pain from the chronic, structural condition in my hand can possibly be so bad that it makes me physically ill. Even worse, now that I am not trying to pursue a doctorate and don't play 8 hours a day, the pain isn't as bad and people think there is nothing wrong with me. I am still trying to find a new career. It is completely overwhelming, at times, and depressing. And my issue is not as severe as that which many of your readers deal with. I cannot begin to fathom how much more difficult it must be for them. Thank you for writing this.

Youth without Health

1.) The young sick person looks around them, and sees their healthier peers excelling where they falter, ultimately, likely to surpass them in many or most ways.

2.) The young sick person looks around them, and sees that their life has already been irrevocably damaged or altered by their illness. They will never have lived a normal life, come the end of it.

3.) The young sick person looks around them, and often cannot find solace, comfort, company, understanding, or even a belief in their problems. This exclusion renders them unreachable, and they are left to fend for themselves. 6 months...12 months...waiting for a single hour of a doctor's time, to be rescheduled twice, perhaps finally to be told to "come back if it gets any worse".

4.) Four is the number of items in my list.

Spot On

Your post is once again spot on, Toni. I agree with all and have experienced all. I am probably aging out of "young person" status at 39 but have experienced chronic illness throughout my life. Having a security guard yell in an accusatory tone clear across a parking lot at me, when I exited my car that I parked in a disabled spot, "Are you disabled?" remains a memory of frustration, embarrassment, and disappointment.

One final point I would add to your list:
#8 Young people are burdened with added pressure to have physically fit and attractive bodies. Youth is often synonymous with beauty. Maintaining fitness through exercise is difficult for the average person and is especially difficult for people with chronic illness. Many of my friends are exceptionally athletic and in shape, and while I am thin, I feel "less than" when I compare my body to others. Facial swelling, dark eye circles, periodic hair loss, and the effects of fatigue also add to feelings of inadequate beauty.

I work to overcome these seemingly superficial concerns in light of my more serious chronic illness, but anything that erodes self confidence and worth is worthy of consideration.

Thank you Toni!

Lack of diagnosis

Thank goodness I haven't had pain. But even those with lesser problems share much of what you write about here. Growing up "different" is hard enough without a condition which, in my case, hadn't been named or defined yet. Even after it appeared in "the literature", no doctors had heard of it for many years and many still haven't. It's hard not being believed.

Thank you for this article. One of the most important paragraphs, IMO, is the one ending "...can seriously erode a young person’s self-esteem and sense of self-worth." Yes, and that doesn't (necessarily) go away in adulthood.

Thank you!

As someone who has a had a chronic illness since 12 these are all so true. Not only do doctors not listen your parents may not listen to you too. I grew up thinking that I was wimp because I struggled so much with all my symptoms. I also that I was crazy. Once my parents finally took me seriously the specialists I went to told me it was all in my head and that I needed to see a psychologist. That's hard for anyone at any age, but especially as a kid who is trying to find their voice, they take a huge hit.

THIS WAS SO EXCELLENT TONI!

THIS WAS SO EXCELLENT TONI! SO VERY SAD, THO. I WISH WE HAD A LIKE BUTTON & ALSO WERE ABLE TO FORWARD THIS TO FACEBOOK! WHAT A GOOD & VERY IMPORTANT READ! I OFTEN TELL PEOPLE VERY YOUNG PEOPLE CAN BE EXTREMELY ILL WITH CFS--THEY HAVE TROUBLE BELIEVING THAT!

Thank you everyone

Thank you everyone for these thoughtful comments and for sharing your experiences with all of us. I wish I could respond to you each individually but this piece has resulted in my In-Box being full of notes from young people. It will take me a while to get back to them all, but I wanted all of you to know that I've read your comments carefully, heartbreaking though they sometimes were. Those of you who are young are so brave and those of you who are their caregivers are so compassionate. I love you all.

Bonnie - I was confused by your comment about Facebook because there is a Facebook button you can click to share this with others on your Facebook page.

Thank you again everyone.

With all warm wishes,
Toni

THE SHARE BUTTON ONLY TAKES

THE SHARE BUTTON ONLY TAKES ME TO LIDIKIN, WHICH I DON'T USE. THE LIKE ON FACEBOOK DOESN'T TAKE ME THERE. I'LL WATCH TO SEE IF IT SHOWS UP. THX. DON'T EVER FEEL U HAVE TO ANSWER EVERY COMMENT; I'M SURE NOONE EVER EXPECTS U TO GET TO EVEYONE--U HAVE A VERY POPULAR BLOG. I'LL ALSO GO TO YOUR FB PAGE--I'VE OFTEN SHARED FROM THERE WHEN IT APPEARS. SMILE!

It shows up in a new window

It shows up in a new window

Thank you!

Thank you for writing this. I am no longer a young person being 45 now, but I was one of these young people with chronic illness starting in my early 20's. It took years to even find out what was causing my strange symptoms and get medical help, but eventually found out I had a rare autoimmune illness plus was infected with Lyme disease. I struggled for years to work and support myself, spending everything I made just about on medical treatments. I had no energy after coming working all day to do much socializing or dating so eventually those invitations ceased to quit coming. After being laid off from job I found because of my medical conditions I could not keep a new job because as soon as they found out I had medical problems they booted me out the door within the 90 day probation period. So I ended up on disability at 40 and I feel like my life is over. I had to relocated to my parents hometown because cost of living is cheaper here and am embarrassed to say they help me financially because disability is not enough for anyone to live on alone. But it's rather challenging to get married or in a relationship so that they don't have to live alone when one has a chronic illness at a young age because people these days are so shallow they will dump you if you have the slightest thing wrong. Now I have to deal with people making fun of me for limping, but in next breath they will say nothing is wrong with you if I admit to being on disability. I so hate being asked "so what do you do?" when I meet someone new. I try to stay active with hobbies and groups so I can still even be around people my own age but it's not easy being accepted when I am "one of those people" as some people refer to those of us on disability as being the scourge of society. I feel so alone, and so isolated now that I do not work and am not around people my own age very often. It also hurts losing independence by having a parent help you financially on a monthly basis; it's so humiliating not to mention it gives elderly parents this idea that they can still control you and tell you what to do as if you were still a teenager. Like I have been told I am "not allowed" to go out of town and am told what hobbies I may participate in as well as where I am allowed to shop for groceries and sometimes even what I am allowed to buy. So many times I just wish I would go ahead and die because it seems like my life is already over. I keep trying to find a way to recover my health and hope and pray someday I will find someone who will love me.

AWWW. WHAT CAN ONE SAY? I

AWWW. WHAT CAN ONE SAY? I SO HEAR YOU & FEEL SO BAD YOU HAVE TO LIVE LIKE THIS IN YOUR 40'S. I GOT SICK AT 57 & ENDED UP GETTING MARRIED AT 62; IT WAS A REAL STRUGGLE!! AFTER 7 YRS, I FEEL HE FIALLY ''ACCEPTS'' CFS & BELIEVES I AM TRULY SICK. I DON'T REALLY RECOMMEND GETTING MARRIED WHEN ILL, ALTHO THERE MAY BE MEN OUT THERE WHO CAN HABDLE THAT. FROM YOUR LETTER, I WOULD SAY U R HANDLING THINGS VERY WELL. I ACCEPT FINANCIAL HELP FROM MY DAUGHTER--VERY HARD ON THE PRIDE! AS I GET OLDER THINGS GET HARDER & I KNOW HOW YOU FEEL ABOUT YOUR LIFE BEING OVER. BUT JUST HANG IN THERE. FEELING SAD PASSES & WHO KNOWS WHAT MAY HAPPEN DOWN THE ROAD? I PRAY YOU WILL FIND A VERY SPECIAL FRIEND TO DO THINGS WITH. AS FOR YOUR PARENTS, JUST LET THEM FEEL THEY R IMPT & HELPING U IN THIS DIFFICULT TIME!! BLESSINGS FROM ALBERTA, CANADA.

Hello Anonymus, There is

Hello Anonymus,

There is nothing I can say to help you, but I just wanted to give you my support. I hope it will be of comfort to you in some small way.
I don't have the exact same conditions as you, but I am financially and practically dependent (for transport etc.) on my parents since my twenties. It's hard to feel like a grown-up that way, even though in my case they try their very best not to restrict me in any way. Still, it is hard for them to really let me go, because of this dependence way into my thirties.
What I mean is: I don't know exactly how you feel, but I have some idea, since I share some of your experiences.

Best of luck to you.I hope you will meet more people who can accept you for who you are and look beyond the illness.

Hi, I was very moved by this,

Hi,

I was very moved by this, as by other posts here and the article itself. I totally relate to what you say about the awkward 'what do you do?' question. I was on sick benefits for a while but am now self-employed and receive benefits as a low paid self-employed person. Is there anything you could do to earn a bit of money here and there, such as crafts or online work? Even if you only do a few hours here and there, it's a different answer to the awkward question and provides a new topic of conversation, as well as feeling quite rewarding.

I had a similar situation as a child/teen when discussing my parents. My dad was disabled and cared for by my mum. But my dad edited a magazine for disabled people and my mum wrote journal articles, so I tended to focus on that. I think voluntary work counts as a valid answer to the question.

It's unacceptable and sad that anyone sees disabled people as undeserving of benefits and unfortunate when invisible disability leads people to assume someone is not genuine. But it's also the case that discussing jobs is seen as a not very personal thing to do with someone you've just met, whereas discussing disability can get quite personal. I guess at least you're managing to do hobbies which can be another of those useful conversation starters (and usually more interesting than discussing jobs anyway!)

Sending you all my best wishes

Self-pity is a worst

Self-pity is a worst destroyer of life than any disease. Consider what Laura Hillenbrand has accomplished is spite of being bedbound since her college days with CFIDS--2 best selling biographies both being made into movies and marriage to her college sweetheart.

Yes that is true however you

Yes that is true however you really can't compare other people when you don't know what their situation is. There is more to illness than whether you can get out of bed or not.

I agree with you Stephanie

No one's situation is like another's. Comparing what one person can do despite being ill to what another person can do serves only to make one of those people feel bad and unworthy. It's best to examine our own lives and do the best we can with the circumstances we find ourselves in. Self-pity is not fruitful, but I saw no self-pity in my article—just the sobering facts of the burdens many young people who are chronically ill face.

All my best,
Toni

Self-Pity

Self-Pity is seen as a weakness that no one should indulge in, but it is an unfair understanding what people go through. There is a natural grieving process for people who are limited by illness. While they might be able to capitalize on strengths to achieve despite an illness, this is not always possible. One needs tremendous support, good enough health, and finances to manage despite an illness. Some people are overwhelmed with debt, declining health, other responsibilities, no medical coverage, or just surviving. Good God, many chronically ill end up homeless without the support of family. They might not be able to write a novel or even get educated. As one adapts and adjusts, their situation may worsen - leading to new struggles and new grieving. Some people are lost and we need to boost them up, not admonish them for pitying themselves.

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Toni Bernhard, J.D., is a former law professor at University of California at Davis. She wrote the award-winning How to Be Sick and, recently, How to Wake Up.

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