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What I've Learned About Managing a Long-Term Health Condition

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It can be upsetting to find out that it’s going to take a long time to recover, especially when there is the potential that you could be living with these symptoms for the rest of your life. It’s not like a broken bone where in six weeks you will be repaired. For me, my illness is invisible. I look like a normal teenager who likes going out with her friends, playing sports and going to school. I look completely healthy. I think that’s what makes it so hard sometimes. I don’t have a cast people can sign, so in the past I have been asked if I’m making the pain up.

Luckily, my doctors never gave up on me. It was four years before I got a diagnosis. I had test after test, procedure after procedure, yet they never could find out what was wrong. I had so many symptoms but nothing showed up. I was a “medical mystery.” I was reassured by the fact that medical professionals believed me.

 

Sometimes I struggled to get through daily activities because I end up exhausted and in agony with swollen joints and my body just gives up, meaning I can’t move. In general, with lots of practice and pacing, I am able to manage my symptoms so it rarely gets to this. It can be hard. Having to wake and make sure I’ve eaten before I take my medicine, even when I’m in so much pain I don’t want to eat because I feel sick. Having to be on constant alert. “Am I going to pass out?” “Is my blood circulating to the whole of my body?” My condition tires me out, yet I want to carry on with everything I do because I am scared of being labeled as “different.”

As time goes on, you start to be able to manage and recognize your symptoms. This time last year I was fainting six times a day, whereas now I haven’t fainted in five months. I listen to the warning signs my body gives me. I think this is important for anyone, chronic condition or not. If you’re tired, take a break. Your body will thank you.

Get support from family and friends. You cannot face this alone. Just small reminders of how well you are doing, reminding you to take your medicine, visiting you in the hospital. These can all make a difference. Facing the pain should not make you feel alone. My family and friends make me smile, support me and tell me how proud they are.

Talk to people. I try and tell people how I’m feeling. It helps them understand if I can’t do something. Telling the doctors exactly how you feel is also important to ensure they are able to get the full picture.

Look to the future. One of my biggest motivations has always been to get to university. This has meant that even when I don’t feel like it, I have attended school. Even if the future is just tomorrow, I set a goal of getting up, going out with friends and getting through the day.

It is so hard living with illness, short-term or long-term. Everyone has different experiences, but it can be possible to carry on with normal activities, and I have always tried to do so.

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Thinkstock photo via brickrena.

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Why Some of My Favorite Memories Are From Hospital Stays

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When I was at the Mayo Clinic for seven weeks last year, I went determined that I was going to meet an adorable guy who was also riddled with life-threatening illness, and he was going to be the silver lining to my travel-out-of-state-for-medical-care-because-I’m-literally-dying hospital stay.

But when I got to the Mayo Clinic, I felt like I was the only person under the age of 70 who was being treated there.

I felt like I was the only young adult in this faculty, possibly even in my side of the hemisphere, who was dealing with my type of health issues.

That was until, one day in the infusion waiting room, I met Rachael. She had a big brown eyes and an even bigger smile. She was two years younger than me, super spunky, loved dogs and was a fellow IV-dependent medical mystery.

From the moment we met, an instant friendship was formed.

 

We would schedule our IVs on the same day, ask to share a hospital room and just spend hours talking, laughing, walking the halls, taking selfies, playing cards, sharing sick kid “battle stories,” listening to music and playing with Play-Doh.

One day we even got our favorite nurse to do an “IV photo shoot” with us to help pass the time, as our IVs were a minimum of two to three hours long. Those pictures are still some of my favorite pictures in existence!

She was often my stress relief during one of the most stressful times of my life.

There is one day in particular I will never forget…

Rachael told me “there was this male nurse who was working that day who was super attractive, and she hoped he was going to be the one who put in her IV today, because he was hot enough to be on ‘Grey’s Anatomy.’ And I just had to see him.”

For the first time in a long time, some “sick chick luck struck,” and Rachael got the hunky male nurse as the one to put in her IV. I was sitting on her bed already, 10 minutes into my IV.

And as he hooked her up, we both just stared and shamelessly flirted with this male nurse.

As he turned around to grab gloves, or grab an ultrasound machine, we would attempt to mouth out words to each other, trying to express how good-looking he was, without either of us getting caught by him.

After he left, we both burst out laughing and totally agreed he was hot enough to be on “Grey’s Anatomy” (which, to no surprise, was our shared favorite TV show).

We of course started talking about “Grey’s Anatomy,” and then, all of the sudden, Rachael got this mischievous look on her face, checked her phone calendar, and exclaimed, “Yes! I think Dr. Yang is working today!”

I looked at her confused, and she told me, “There is a nurse who works here every Wednesday who looks just like Christina Yang from ‘Grey’s Anatomy.’ She is basically her twin. You have to see her for yourself!”

So we both grabbed our IV poles, went into the hall and began hunting the whole ambulatory infusion center for “Dr. Yang.”

The nurses kept on asking us what in the world we were doing, and Rachael would just smile and sweetly respond, “Oh, we are just getting our exercise for the day!”

Little did they know, we were two girls on a mission.

After 10 minutes of walking around and dragging our IV poles, we were about to turn the corner to go to the nurses’ station, and Rachael stopped, grabbed my arm and excitedly whispered to me, “Look! Look! I found her! I found Dr. Yang!” I peeked around the corner, and I just about died laughing.

I saw a woman who looked exactly like Christina Yang from “Grey’s Anatomy.” Same face, same facial expressions, same mannerisms, same everything!

So we sat there in the middle of the hall, trying (and failing) to silently laugh. We were literally laughing so hard, tears were coming out of our eyes and we had to hold on to our IV poles for support.

The nurses stared at us in entertained and confused wonder, like they were debating if we were just having a strangely good time in the hospital, or if the combination of dehydration and malnutrition had finally caught up to us.

We somehow managed to get ourselves back to our room. Then we collapsed on the bed…joyfully exhausted.

Afterwards, we both looked out the window of our fifth-floor room and stared in complete awe. Because right before us was one of the most gorgeous sunsets I had ever seen in my life.

As we were in a hospital room, hooked up to life-saving machines and physically felt like absolute garbage, we gazed at the sunset and talked about how much we loved sunsets. Because sunsets are a daily reminder that we are so lucky to be alive, and we were so lucky to get to continue to live, despite our bodies that continually kept trying to hurt us.

This may seem like a small and insignificant memory, but that was honestly one of my favorite days of my life!

Some people might think it’s impossible to feel joy in a place that’s full of so much pain. But I’ve honestly met some of the happiest people and made some of my favorite memories while I’ve been trapped in a place I truly didn’t want to be, and fighting for a life I wasn’t quite sure I’d have.

I think when you’re in that situation, when you’re so sick it seems as though hospitals and doctors’ offices are your second home, when your life feels full of more bad news than good…it makes you 13 times more grateful for every good moment you get. Because you truly will never  realize how many gifts life gives you on a daily basis until life shows you it can take those gifts away.

Until next time. Stay strong. Appreciate every day, and always smile on!

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Thinkstock photo via Siri Stafford.

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The Time 'The Golden Girls' Portrayed What It's Like to Be Chronically Ill

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I’ve recently stared watching “The Golden Girls,” and I can relate to those woman quite a lot. The other night I watched an episode called “Sick and Tired.” It was a two-part episode that revolves around the character Dorothy feeling sick and run down lately, this had been happening to her for about five months. The illness came on randomly, and it made her feel and act differently than was the norm for her, to the point where her mother, Sophia, and two friends, Blanche and Rose, noticed. This episode was as if it was straight out of my life. The only difference is that Dorothy is an older woman and I am a young woman under the age of 30.

Sophia, Rose and Blanche urged Dorothy to go to the doctor to get checked out, so she complied. When she went to the doctor, explained her symptoms and had many tests, that first doctor came back to tell her there was nothing physically wrong with her. Sophia adamantly stood up for Dorothy, telling the doctor that the Dorothy that sat before him was not the same Dorothy that she had always known. She defended and advocated for her daughter. Dorothy was referred to another doctor, a neurologist who said the same thing, he even asked her how she was able to get from the cab to his office if she was so sick. He wrote off the symptoms as stress mostly due to her older age, telling her that she needed to go see a psychiatrist.

Dorothy began to feel overwhelmed, questioning whether or not it was all in her head, whether or not she was crazy. She collapsed in an onslaught of desperate tears. She was then told by Rose that she definitely was not faking it and it wasn’t all in her head, prompting Dorothy to keep fighting.

She went to this next doctor desperately hoping he would find something physically wrong with her. This time he believed her completely and told her that she had chronic fatigue syndrome. She was relieved, but wondered what it meant for her future.

She was so ecstatic about being believed and finally being diagnosed that she took Sophia, Rose and Blanche out to dinner to celebrate. At dinner she saw the neurologist who didn’t believe her and made her feel like she was crazy. She went right up to his table and stood up for herself, saying that she didn’t know when doctors lose their hearts, wishing that all young doctors could suffer from a scary unknown illness for a few weeks because that would teach them a hell of a lot more about compassion than anything else.

This episode almost exactly mirrors my own experiences. I went from doctor to doctor, each of them telling me I was making up my symptoms and it was all in my head. I was told to see a psychiatrist and even began to question my sanity just like Dorothy. I collapsed in an onslaught of tears just like Dorothy. It was my mother who stood up for me, just as Sophia did with Dorothy. I was finally referred to a doctor who believed I was ill, telling me that I have Chiari malformation and Ehlers-Danlos syndrome, which is associated with chronic fatigue syndrome. I was so ecstatic to finally be diagnosed just like Dorothy, as well as wondering what my illness meant for the rest of my life. The only thing that never happened for me was seeing the doctor who told me I was making up my symptoms. If I did see this doctor again I do not think I would have the bravery that Dorothy had to stand up to her. If I were to stand up to her I would want to say exactly what Dorothy said to her doctor. I think somewhere along the way (some) doctors do seem to lose their hearts.

It was both a bit painful as well as cathartic to see “my story” on an episode of a very popular television show. It brought back a lot of those bad memories, but it made me happy to see that issues like this were delved into because it shows a wide audience a brief summary of what a typical chronic illness patient goes through just to be diagnosed, to be believed. In the future I will refer people to this episode when I want them to understand what my journey was like. Thank you to Susan Harris, who has chronic fatigue syndrome and wrote the two-part episode “Sick and Tired.” You did an absolutely wonderful job portraying my story, our story. Thank you for being a friend!

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22 Photos of How Illness Changed People's Bodies (That They're Not Hiding Anymore)

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When life throws a chronic illness your way, you might find yourself struggling to reconcile your “old” self with the changes in lifestyle, diet or hobbies illness can bring about. But your physical appearance can also change – whether it’s a result of surgeries, medication side effects or a direct result of the illness itself. It can be tough to watch your body undergo changes, especially when you feel like you don’t have control over what’s happening. But it can also be a proud visual reminder of how strong you are and how much you’ve overcome.

We asked our Mighty community to share photos of how their bodies may have changed due to chronic illness — but they don’t want to hide anymore. If you find yourself struggling with self-esteem or identity because of how your body has changed, know you are not alone. But also know that no matter how your body changes (or doesn’t!), you are strong, you are beautiful, and you are a warrior.

 

Here’s what the community shared with us:

1. “These burns right here are from three years of consistent heating pad use due to an undiagnosed stomach illness that creates so much pain and nausea I have to be attached to a heating pad 80 percent of the day just to get some kind of relief. I used to be so ashamed of my burns, but I’m tired of hiding them. They are my proof that I fight an invisible illness that consumes my whole life.”

woman with burns on her stomach from heating pads

2. “My weight gain in four months from an extremely intense version of a very common reaction to amitriptyline. The rapid weight gain was a bit over three years ago, but completely ravaged my metabolism. My skin is covered in stretch marks that quite literally showed up so quickly that some of them first appeared looking more like bleeding blisters. My joints were destroyed and I could barely walk for more than six months because my body couldn’t handle the excess weight.”

before and after photos of a woman who gained weight due to medication

3. “2009: I was 17, a few months away from finishing high school. I had dealt with being a victim of bullying [due to] being disabled and living with spina bifida. I felt life was great and I was about to start a new life soon. 2017: I’m 25, and life didn’t go as I’d planned back in 2009. I graduated high school. I had set myself up to go to college and live a normal life as best as I knew [how]. [Since] being diagnosed with a mental illness, I’ve had to re-create my life a bit… But [because of the] medication I’ve been placed on in that timeframe, I don’t recognize myself. Mental illness may have taken a piece of me away, but it won’t win!”

side by side photos of a man in a wheelchair in 2009 and 2017

4. “My hands are deforming from rheumatoid arthritis. They are always swollen. Only 15 years into diagnosis and age 37, I worry about what they’ll look like in the future. But they show the pain I’ve endured and how hard I have fought for 15 years.”

woman whose hands are bent from rheumatoid arthritis

5. “I have a rare form of dwarfism and my bones are slowly breaking… I’ve had two surgeries so far and more to come. My legs are also affected.”

woman's wrist with broken bone and scar from dwarfism

6. “Having a central line for TPN and feeding/drainage tube in my stomach for digestive tract paralysis. It’s been [challenging] being a teenager with these tubes, but I am proud they’ve kept me alive!”

woman with feeding tube attached to her stomach

7. “Multiple knee surgeries for lack of cartilage. Lupus is definitely difficult to deal with, but I have it – it doesn’t have me.”

woman with stitches on her knee

8. “Chemo treatment made my hair fall out in huge clumps. My son helped me shave my head, but only if we shaved his too. It was hard at first, but now I just don’t care. Plus, bald chicks are adorable!”

woman and son with bald, shaved heads

9. “My scars, or what we call our zippers. This is after I shaved my head for St. Baldrick’s. This was between my third and fourth Chiari revisions. The fourth included skull to C3 fusion. I got the tattoo before I knew I needed another surgery but with us Chiarians there can always be another. The tattoo is my way of raising awareness and adding a little humor.”

woman with scar on the back of her head/neck from chiari

10. “This surgery and bimonthly injections into my face have changed my face shape and movement, probably permanently.”

a woman's face wrapped in a bandage after surgery and injections

11. “Skin tumors from neurofibromatosis. They’re all over my sides, lower back, pelvis and down my left leg. I also have plexiform tumors inside my body, in my sides, on my sciatic nerve and wrapped around my aortic artery.”

woman with scars on her skin

 

12. “Welp. This was me at 27 when I finally had all my teeth removed. They started falling out of my head at 19 years old. I’m 29 now and have been toothless for two years for a variety of reasons. Thanks, Ehlers-Danlos.”

woman without teeth smiling

13. “This is lipedema. I have painful, large, trunk-like legs that bruise extremely easily. They swell with changes in my hormones. It makes exercising feel almost impossible unless I’m in a pool. It makes the daily walking a person does feel like a marathon. It is largely unaffected by diet and exercise. It showed up at puberty and got worse with each pregnancy.”

woman's legs swollen due to lipedema

14. “I was born with a rare disease called multiple hereditary exostoses. I have hundreds of bone tumors all throughout my body, and the only treatment is surgical intervention. So far I’ve had 42 tumors removed, and have scars all over my legs from my surgeries. I used to be self conscious about my scars; in high school I even tried to cover them up with make-up. Not any more. Now that I’m older, I now understand each scar tells my story, and shows the war I am fighting with MHE. This scar is my favorite one – it’s two feet long and from my most recent surgery where I had 20 tumors removed from my hip and had my hip completely reconstructed. Recovery from that surgery was the hardest one to date, so I wear this scar with pride.”

woman in bathing suit lying on a lounge chair with a long scar down her leg

15. “My peritoneal dialysis catheter. I used to be so ashamed and embarrassed but now I embrace who I am. I am not my illness! [To] everyone who has shared a picture: you all are my heroes and have so much courage!”

woman with tube leading into her stomach

16. “My face is permanently scarred from the lupus lesions. When I’m having a flare-up they burn and blister. They’re all over my body, not just my face. I used to wear make-up every day to cover them. Now I’m too exhausted to bother and I no longer care if people stare.”

woman with scars on her face from lupus

17. “My fibrous dysplasia caused changes in my right leg, but mostly my skull. It’s full of lumps and bumps. One part that really bothers me is the lump on my lower jaw. I’m not afraid to show the world if it means raising awareness.”

woman with a lump on her head

18. “Ehlers-danlos syndrome left me with these wicked knee braces. People stare but it doesn’t matter. They are my new legs and I love ’em.”

man with knee braces on both legs

19. “Systemic lupus. Destroyed my skin.”

woman with red rash on her arm

20. “Scars and excess skin from weight loss after the diagnosis of Crohn’s disease. Plus my funny-looking belly button.”

woman with excess skin around her abdomen due to weight loss

21. “I recently lost my colon, rectum and anus because of Crohn’s disease and have a permanent ileostomy.”

22. “Got this beauty mark after my brain surgery.”

woman with scar on the side of her head after brain surgery

22 Photos of How Illness Changed People's Bodies (That They're Not Hiding Anymore)
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How I'm Balancing School With My Chronic Health Conditions

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I have always been very fortunate that my school has been very supportive of my copious amounts of hospital appointments. Every week on a Monday morning, I would go up to the sixth form office and hand in my letters for that week, informing them of what days I was missing at what time, which hospital I was going to and what treatment I was going to have. It got to a point where it seemed like my teacher and mum were pen pals writing to each other each week.

Luckily, the majority of my appointments have been on an outpatient basis so I have not had to miss massive chunks; however, it can be exhausting traveling to and from different appointments. I think my record was 14 different appointments in one week! The time where I did have an inpatient stay at Great Ormond Street Hospital, it was the week before my AS Levels. To say the least, I was very stressed. Missing school, going into the hospital and then exams the week after! But I was able to cope through the support of many people.

I think that having support from other people is probably one of the most important things for keeping up with school when you are in the hospital so much. First, my teachers made sure they sent me all the work I missed and were available to email to answer any questions. Secondly, the hospital staff always made sure I had time to revise in my room and one of the student nurses helped explain some math. Lastly, and most important to me, were my friends and family. I video-called my friends during the evenings and they kept me up to date with the latest gossip from school. I will never forget the time when I was speaking to my friend and had to get a blood test. The nurse said I could carry on speaking to him but then I passed out…gave him a little bit of a fright!

 

Usually, I really enjoy school. For me, keeping up with work has always been a distraction to everything else that is going on. I have never wanted any of my health issues to prevent me from doing well. I don’t see why I should ever be limited to the things I am able to achieve just because I experience symptoms that other people my age don’t have.  Having this attitude has meant I have been able to get into my dream degree at one of the best universities in the UK. Although some young people have symptoms that are not considered normal, I believe it is important we still get to experience things other kids our age get to do, even if it is just attending a hospital school or going to the hospital shop with some friends because unfortunately, this is what some children are limited to.

I have always found it hard explaining to my friends why I have yet again missed the group presentation, or why I wasn’t able to go to someone’s birthday party, or why I miss lots of lessons. As time went on they became more understanding, so if you are in this position, give it time. They are your friends – they want to support you as much as you can, they just might not know how. So give them a hint! Don’t be ashamed to ask for more help. My school is really understanding and have given me rest breaks in exams, allowed me to leave lessons if I need a break and my head of year meets with me regularly to check my progress both inside and outside of school. It’s hard being different from everyone else and having to monitor my health, but I got used to it very quickly and it always shocks me how understanding people are. There are also some perks, such as using the lift at school!

Obviously, school is important, but your health is even more important and should be your main focus because you will be able to have increased success in school with better health. Also remember that while school is important, so is a social life, so even keeping up with your friends might make you feel better.

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Thinkstock photo via AntonioGuillem.

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The Most Impressive Thing a Doctor Can Say to Me

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At the age of 14, I have been to over a dozen doctors and specialists, and the one thing I find interesting is how they try to impress you. It seems to me like society accepts people who pretend to have all the answers and facts instead of those who are simply honest and humble, saying the words “I don’t know.” Doctors are no exception.

Which brings me to the point: While I understand that doctors want to appear intelligent and well-educated (and they almost always are), when you have been to countless doctors who try to throw every inexplicable reason for your symptoms at you, you begin to wonder how much they know and how much they are faking their knowledge.

I have heard everything from “you’re faking it” to “you need to exercise more” to “it’s just your anxiety.” While, granted, I maybe should exercise more and I do have anxiety, I know for a fact (and I suspect they do too) that these things are not the culprit of my poor health. I speak as an ill person looking for answers when I say the most impressive quality in a doctor for me is honesty.

 

Let’s be real. The person who holds your health and possibly the answers is probably the person you would want to be most honest. That’s why, for me, the most impressive sentence a doctor can say is “I don’t know, but I promise to try to find out.” In this sentence they are admitting they are human, they don’t hold all the answers, and that’s OK. However, they are not crushing your hope because they are promising to find out.

I am not writing this to criticize doctors. I am writing this hoping a doctor will see it or a patient will bring it to a doctor’s attention that they do not have to have all the answers, and being honest is all that people can expect of them.

All I want from doctors is honesty and the simple phrase above would mean the world coming from health professional.

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Thinkstock photo via Design Pics.

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