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When I Feel the Weight of My Illness on My Family

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Some days I feel really heavy. Not in the sense of size, but in terms of my weight on the world and also the immensity it inflicts on me. Some days I feel burdened by my body. Some days I feel like a burden.

Disease is so intangible, yet it manifests in ways that can be seen and felt in every aspect of life. I can’t even begin to personify or compartmentalize my illness. There are so many facets, some I wish not to think about regularly. When my disease is at its worst, not a second goes by that I am not thinking about it or dealing with its implications. For the first time in well over a year, I am starting to feel better (knock on wood), and it has made me realize that maybe the good I offer to those around me offsets the baggage that comes with me as part of my chronic illness.

I want to make it known that this disease sucks. Sure, I can maintain a positive attitude and always choose to find the silver lining, but that does not change the fact that I have been through things that have changed me and consequently impacted those around me, whether I am in the midst of a flare or not.

I can handle what my illness throws at me personally, but I will always hate that it throws just as much at my family and loved ones; I can’t undo that damage.

I can handle the loss of control over my body during a flare-up because I am strong enough to take that pain and suffering. I can handle the hours lost napping and the consequential missed experiences. I can handle the loss of friendships because true friends will stick around through good and bad times. But it is extremely difficult for me to accept the concept of being a burden on others, and it used to make me feel like I was losing my mind.

My family has struggled because of my illness, and that is a dense fact that sits on my shoulders. The medical bills, the sleepless nights in the hospital, and the emotional roller coaster I have ridden with my parents are happenings I can never repay. The day I called my youngest sister to come home from school to be with me because I thought I was going to lose consciousness. That time I asked my sister to lie about what was going on out of embarrassment of being known as the “sick girl.” Leaving family vacation early because I couldn’t walk and had a 103.3 degree fever. We have been through difficult things as a family, just as any family experiences, but knowing that these particular endeavors were because of my illness makes me feel helpless.

I am an independent person. If I can take on a task on my own, I absolutely will. I tried for years to fight the battle that is my disease on my own, but that only made its force stronger. Recently, I have let more people in. I am trying to stop pushing people away out of fear of shifting my struggles onto their plates. I finally realized that I need as many people on my team as I can possibly recruit, and that means accepting the feeling of heaviness every now and then.

It is OK to need help. It is OK to feel heavy sometimes. When I recently became more transparent and public about my disease, people asked me why. The answer is because it makes me feel lighter. Knowing that I have people on my side, willing to share in my never-ending fight allows me to understand that maybe I’m not so inconvenient after all. The secrecy I chose to maintain surrounding my illness in the past only made the metaphorical load of bricks on my shoulders weightier. It made me sink. I don’t want to sink; I don’t want others to sink.

I realize that not everyone is afforded such a compassionate and willing support system as I am with my family and loved ones. I realize that not everyone is ready to speak openly about their disease or hardship, whatever it may be. It is so important that we let those around us know that no matter what the battle, we are willing to fight beside them. It is OK to feel a little heavy, just please remember that does not make you a burden.

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Nonprofit, Room For Joy, Redesigns Bedrooms for Kids With Chronic Illnesses

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Growing up, Tory Smock saw her bedroom as a sanctuary, a needed respite from hospital visits to correct her scoliosis.

Now an interior designer, Smock spends her time redesigning bedrooms for children with chronic illnesses. To facilitate these makeovers, Smock created Room For Joy, a nonprofit organization in Mesa, Ariz., that puts together creative and medically appropriate bedrooms for kids with medical challenges.

A beach-themed room completed by Room For Joy for Dylan, age 14.

“Our goal is to go above and beyond the child’s expectations and to not just put some paint on the wall and change the bed coverings,” Smock told The Mighty. “We want them to feel like they have been transported to a magical place.”

And they do it all in a single weekend.

Smock and her team work with child life specialists at Phoenix Children’s Hospital, Cardon Children’s Hospital and Banner Thunderbird Medical Center to identify children in the Phoenix Valley area who are a good fit for a room renovation. Smock then meets with the children and their families to get to know them before scheduling a weekend for the makeover to take place.

An art and music-themed room completed by Room For Joy for Luz, age 10.

This past weekend, Smock and her team renovated the bedroom of 17-year-old Shonalisa, who was born with a condition called OEIS syndrome. Due to her condition, Shonalisa was born without a bladder and has developmental delays.

Shonalisa's new room

The theme for Shonalisa’s room was inspired by her love of the Disney movie “Cars,” and the character Lightning McQueen.

Shonalisa’s bedroom is the 44th makeover Room For Joy has completed since its inception in December 2005 . The cost of the makeovers — and the mini-vacations Smock sends families on while the renovation takes place — are all underwritten by donors.

Shonalisa seeing her new room

After renovating her own daughter’s bedroom, Smock know how healing these makeovers can be. According to Smock, her daughter’s new bedroom helped her get through a major procedure for scoliosis.

Shonalisa's new room

“Being able to understand the importance of a healing environment from both the child’s as well as the parent’s perspective has given me a unique ability to relate to the children and their families in a special way,” she said.

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What Years of Hiding Taught Me About Living With a Chronic Illness

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I used to hide. I spent years hiding my illnesses from my family, my friends and sometimes even my husband. People close to me knew I was sick, but I tried really hard not to discuss it. I would say things like, “Oh, we are doing great. I’m fine, don’t you worry about me.”

I said these things because I was afraid. I was afraid of the awkward silence that tends to follow being honest with someone or people thinking I was faking because I don’t look sick. I was afraid of comments like, “Oh, I once had a really bad flu, so I know how you feel.” I was nervous people would avoid me because they didn’t know what to say, and so they would say nothing. I didn’t want people to think I was the girl who complained all the time.

I was afraid my mom would cry, and that I would have to comfort her. I feared my kids would internalize having a sick mom, one who couldn’t be normal like Johnny’s mom. And I didn’t want to add more weight to the world my husband already carries on his shoulders. I was afraid of all of it.

After years of hiding and being dishonest and unauthentic, I’ve come to learn a few things:

  • Telling your story helps you heal emotionally.
  • Telling your story helps educate people. It helps them understand exactly what you are going through.
  • Some people may judge you, and that’s OK. Learn to let it go.
  • If people don’t know the truth, they might make assumptions when you cancel plans at the last minute or tell them you’ll let them know.
  • You will learn to let go of other people’s reactions. They aren’t yours, anyway.
  • People will surprise you with their kindness. People can be awesome when given the chance.
  • Being vulnerable enough to share something that scares you is empowering.
  • Telling your story puts control back in your hands.
  • Telling your story opens you up to a world of people who, upon hearing your story, can say, “me too!”

With the help of your new found transparency, you will learn tips and tricks from others with similar issues as well as how an unexpected kind word can brighten a bad day.

Now I am the girl who leads with her story. If you meet me and we plan a coffee or lunch date, you’ll probably hear me say something like this, “I am so excited to have lunch with you, I’m chronically ill and some days I get sick out of no where. If that happens, I’ll let you know.” People are usually very kind about that, and I’m comfortable because I’ve set clear expectations and shared a little about what my life looks likes from the very beginning. This helps me deal with the heartbreak of people calling me a flake, or telling me to just suck it up. I set the expectations now, even though I can’t control the reactions.

I also tell my family and my husband when I’m not feeling well. This helps me avoid snapping or losing my temper when I’m sick or in pain because I’ve been proactive and have asked for help or space. I said this before, but I want to say it again – people can be awesome when given the chance.

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My One Piece of Advice for Parents Fighting for Their Child's Health

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For the first time in well over five years we have been away for two days and had a lovely, sunny, worry-free time.

Normally we would constantly worry about being out. My daughter Molly can feel quite poorly a lot of the time which makes things really difficult. We try and do our best so that no one misses out and so we can have good times together. But if we are out for the day somewhere, frequently Molly is tired and ends up crying and in pain, and we generally just have to leave.

Days that follow these days are awful. Molly will be asleep for days and in terrible pain. It’s been really hard for everyone, and I spend most of my time on edge at a complete loss of how to make her better. We don’t give up, though, and manage it the best we can.

Not this time! This time was different. Molly managed two days in London without causing any concern. We had lunch out and then went to the Natural History Museum. Back to the hotel for Molly to sleep and then for the first time in years we went back out in the evening for a meal!

I was totally amazed! Molly has been better than I have seen her since she was at primary school. Watching her laughing and eating, I worried had we gone to far here? That night I suspected we would have to stay in the hotel the following day because she would relapse and go back to the terrible pain, dizziness and tiredness.

But no, it did not happen! After a whole day when I didn’t worry once if Molly was still well! We had a full English breakfast, she slept for 20 minutes afterwards and then we were off out again! Riding about in cabs, whizzing about the city. Seriously, I could have won the lottery and would have felt no happier! Molly was engaged and didn’t have that vacant look in her eyes which comes if she feels unwell. Her head was up and she was laughing.

It’s only been two days but that is two consecutive days out of 365 per year, times about six years which equals about 2,190 days! 2,190 days which I have worried at some points more than others in the day because she feels so unwell. 

It seemed that this was how it would always be.

Molly still cannot walk for more than about five minutes, and she still has pain but is managing it. It’s only been two days! And I’m not counting my chickens. But the worry I’ve had on a daily basis for over five years was not there! For two whole days! And I cannot tell you how amazing that feels.

We still have a long way to go but this I believe is a turning point. I have tried everything in my power to take this illness away from her. Finally with oxygen treatment, replacement hormones, added vitamins from fruit and vegetable capsules, an air purification system in the house, weekly complimentary therapy and weekly physiotherapy we are finally getting there.

Who knows how long it will be before she will walk around again like other teenagers, go to college or even just out with her friends for a while. All I can say is at the moment it feels like we are winning! And I cannot tell you how happy that makes me feel.          

I just have one piece of advice: Do not accept that your child’s health just is how it is.

It might not be. Do your research. Try everything you can. Don’t just leave it to the people who oversee them medically. You know your child and if there is a chance you can do something that will make them feel better, take it. Doctors haven’t suggested all the things we have done. I’m not sure if it is their fault or not — I can see that they do not have the time to put 100 percent of everything in to your child. It’s easy for doctors to just give the medication and not think about them for another six months. Or maybe they think another consultant who cares for your child is being more successful on a daily basis of keeping your child well. Who knows?

But if you are not happy, find your own set of professionals. Get a second and third opinion. Read as much as you can about your child’s diagnosis and how different treatments have improved it. We have a Team Molly now and collectively these professionals I have put together are winning. Just research. There may not be a cure — Molly is far from well, but I have seen a tiny light at the end of the tunnel in the past two days. So please let that give you hope.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

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The ‘Leaky Faucet’ Metaphor to Consider Before Offering Advice About a Chronic Illness

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When you’re sick or have a problem, people have this instinct to try and fix it. We all have this urge and offer unsolicited advice or thoughts in just about everything. It’s one of the ways we relate to each other as a species, irritating though that may be. When you’re having problems with your car or are trying to figure out why your dog keeps eating the sofa, that unsolicited advice can be helpful. When you’re chronically ill, however, it can be infinitely less helpful.

No, I don’t want to try this special diet medical science hasn’t caught up with yet. I don’t want to do yoga in the park six hours a day (not that I could if I wanted to). I don’t want to try homeopathic medicine for conditions I don’t have. No, I’m not paying $500 for this dubious self-help guru’s guide to wellness through eating nothing but mangoes for six months.

Imagine you have a leaky faucet. You have a whole team of plumbers looking at it, trying new things to fix it, but overall they tell you this’ll be a problem as long as you own the house. Then, every day, people come over and give you less-than-helpful advice, like stuffing the faucet full of sealant. Sure, it might stop dripping, but it sure won’t work as a faucet. This happens every day, multiple times.

Eventually you, like most people in that position, would stop inviting people over. For good reason, too! It’s annoying and unhelpful. You know they mean well, but they’re not educated on how to fix your faucet. Even if some of those bizarre suggestions worked on their faucet (which isn’t likely the same brand or attached to the same plumbing), they won’t work for you. You know because you’ve tried more of them than you want to admit. That’s why you hired the expensive plumbers to begin with.

Even if you have the same faucet as the person with the problem, it might not work the same. However, if you have the same faucet you at least have a better basis for offering thoughts. Though usually in that situation, the folks with similarly leaking faucets will be more likely to accept, “I’ve already tried pretty much everything.”

That isn’t to say all folks with disabilities have leaking plumbing, but we are constantly facing down a barrage of well-meaning and heartfelt advice from people who want to see us feel better. We know you don’t mean any harm, and we know you aren’t trying to be frustrating or make us feel bad. However, the constant thought that we aren’t doing what’s best for ourselves when you likely don’t know exactly what we’re doing; what our doctors have us doing; or sometimes even what our condition entails is enough to make us scream.

In an undercurrent we know you don’t intend, the world constantly telling us to do all these strange and unusual things to “fix” our problem is kind of like telling us that we can’t be trusted to handle our own issues. There are certainly folks out there who need extra help, but they likely already have it. Also, believe us when we say we are more motivated than anyone to find treatments that help. After all, we have to live with these problems in an intimate way no one else does (except other folks with the same conditions).

We don’t mean to be grouchy when you tell us to do this bizarre cleanse diet to rid our body of toxins that probably have nothing to do with our condition. We don’t intend to roll our eyes when you tell us to try this yoga thing we can’t do according to our doctors who think it’s potentially unsafe for us. It’s not that we aren’t willing to try new things and take risks, but eventually we shut off the part of ourselves that listens. We have to because there’s just so much input.

If I had to count the number of times I hear well-intentioned but unhelpful advice per day, I could probably fill a book with it. That’s one of the many reasons I don’t talk much about my struggles with anyone because I’m sick of that experience. There are a few people I don’t mind hearing from other than my physician — and those people know who they are. They also don’t barrage me with machine-gun “treatments” that would probably do more harm than good.

If you have a friend or loved one with a disability and you aren’t one of the people they rely on for that kind of help, it’s more important that you just be there with us. We aren’t a leaking faucet to be fixed, and more often than not, we have a good grasp of what it is we need to do. Accept us as we are, good days and bad, and be friends with us. Share laughter, tears, funny stories, cat photos, and other mutual passions. Just be there. That’s more help than all those bizarre “cures” any day.

Image via Thinkstock Images

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When It Was Time for Me to Move From the Children's Hospital to the Adult Hospital

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I cannot tell you how much I dislike being an adult within the health services. I thought growing up would be a good experience, but living with illness and having to move from children to adult services is really hard. I always knew I would have to move from children to adult services and I had no idea what to expect. I didn’t think it would be such a lonely and scary jump.

At 16, I went from being surrounded by bright walls, happy murals, play rooms and more, to four blank white walls. A big white room. I went from having frequent visitors and a parent staying with me every night in their own little bed, to watching my mom cry and sleep on the hospital floor, because after one of my surgeries she didn’t want to leave me at 8 p.m. when visiting hours were over.

I think back to every single opportunity I had as a child in the hospital — school, music therapy, chill-out zone, play specialists, celebrity visits. My hospital even had a slide. In the blink of an eye, it was over. Kicked out. No matter how much I long to go back, it will never happen.

My relationship with my family has changed because adult wards aren’t as inviting. They don’t have toys or a play room, or even a TV, and therefore my siblings no longer like to visit me.

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Hannah and her brother (photo by Andrea Whelan Photography)

Doctors’ rounds happen in the morning, when my parents aren’t allowed in. You’ll argue that I’m old enough to handle it, but that’s not the point. One of my parents has been in the know since the day I was born. They’ve made life-saving decisions for me, and they have all the questions. When I’m sick, my attention span isn’t great and medical jargon is a no-go. Most of the time, it ends up in arguments or serious misunderstandings, simply because a loved one could not be with me for those intense 15 minutes.

Now, spending time with my family when I’m in a vulnerable state has become a luxury. Visiting hours mean that I can no longer have a loved one by my side during the night. So, when all I want to do is clutch onto my mom’s hand because the pain has become unbearable, instead I sit up, lost in my bed, and listen to other patients in the hospital.

There is so much stigma around mental health and well-being, yet the adult world is stripped of life. We’re encouraged to lie there with nothing to do. To stare at white, clinical walls.

My heart aches the most for my friends who are going to go through this process. My heart breaks for the day the little girl I’ve known since she was 3 will be told that her parents can no longer stay with her. That her family cannot be there when she has her bedtime injections or sees the doctor in the morning.

My heart hurts for the 9-year-old who has just had surgery and recovered in a really beautiful setting, surrounded by people she loves. It hurts for the day she will wake up from a surgery surrounded by four blank white walls and people significantly older than her. For the moment she will be taken off her morphine and that night have no one’s hand to hold when the pain creeps in. A place where tears will not be seen and a voice will go unheard.

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Unless you live through it you wouldn’t know. As a service, you don’t realize how much you are taking away from us. We have enough on our plates. We’re trying to grow up in the world and on top of that we have to magically, overnight become adults within the health services. I wish I could ask you to bring back our voices. Voices of the young. Truth is, it seems our voices never existed. We feel simply pushed to one side.

I am numb, because I used to be someone people could relate to, but now I feel lost. Lost with the system. I feel like I’m “just another patient.” I’m just a number.

Perhaps what you don’t know is that for someone like me, I’ve lived with this my whole life. Before you wanted me to be an adult, I was a child. I still am a child. A child to my parents. So, inspire, encourage and help us grow up, don’t just shut the door. Please.

Our time is now, because change has to happen now. Not only for ourselves but for the benefits it could also bring to healthcare services themselves. Let us represent and be heard. We live with this every day. We are experts and the future of healthcare must be experience and patient-led.

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