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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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Why I Remain an Optimist Despite My Chronic Illness

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I am, and always have been, an eternal optimist. But dealing with chronic debilitating health problems can really shake your resolve to stay positive. I have struggled a lot lately to keep my sense of optimism. There is honestly nothing that can make you feel more hopeless than having a doctor tell you they don’t know why you are hurting and they really can’t help you.

Today I had yet another doctor appointment in an attempt to find the cause (and if I’m lucky, the cure) for a very intensely painful flare-up I have been experiencing. I realize I may have to accept it as yet another part of living with fibromyalgia, but because some of these pain symptoms were new, I thought it was worth exploring.

I started by going to see my gynecologist, as I really think I have endometriosis. She did an ultrasound and found that I have polycystic ovary syndrome (PCOS). On to a specialist, who confirmed PCOS and put me on medicine to treat this.

 

That was two months ago, and I am now four months into the most painful flare-up I have ever experienced. I have been having cramps and stabbing pain in my pelvic area for four months straight, along with hip pain, thigh cramps and lower back pain.

I want to just “push through” the pain, but this pain (unlike my normal fibromyalgia pain) tends to worsen with exercise, and I have been pretty well trapped on my couch for the past four months with no sign of improvement. I got to a breaking point on Sunday after I attempted to attend church. I was feeling so isolated from my friends and thought I would try sitting through a service. But unfortunately sitting has become it’s own special torture, and I was in tears by the end of the hour-long service.

This is my life now, trapped in my own body. I keep remembering I am only 29. I keep running over the possible diagnosis and treatments and realizing I will likely be struggling with these issues for many years to come. PCOS, I’m already being treated for, and this will likely continue until menopause as it is hormone-related. Even a hysterectomy is unlikely to help with PCOS, as taking out all of the organs causes a higher health risks. Most doctors now tend to take out only the uterus with a hysterectomy (that procedure has much lower risks, but would not help with PCOS).

I had also been researching treatment options for endometriosis in case I have that. There is ablation (which my doctor did not recommend as it can cause other problems and doesn’t tend to help endometriosis; plus, as I do not have any signs of endometriosis in my uterus, I don’t think that treatment option really even applies to me). There is laparoscopic surgery to diagnose and remove adhesions if endometriosis is found. My doctor really did not recommend this for me either. She said based on the pain I was experiencing, I might not even have endometriosis. And if I do have it, she said the surgery would at best be a very temporary help. She said the adhesions will likely come back, and the pain of recovering from surgery really outweighed the possible benefits for me (especially as I have a history of not recovering well from surgery.)

The only option left is a shot called Lupron which mimics the effects of menopause on your body, but it can only be used as a temporary fix because going through menopause early can cause a whole slew of other health risks. Doing a hysterectomy is not recommended, because endometriosis is caused by hormones, and taking out the uterus can actually cause the adhesions to have more space to grow and allows the condition to worsen. Basically, neither diagnosis has much likelihood of improving until menopause, a good 20 or so more years for me.

Nothing will make you feel hopeless and defeated faster than a doctor telling you they can’t help you. That you are already taking the best (and only) treatment they can offer you. That there is nothing else they can do.

You see, I am an optimist. But how do you hold out hope when there is no hope? When there is no cure and no treatment to help you? I found myself sitting in the doctor’s office repeating over and over in my head, “You can’t help me.” But it is still so hard to accept, so hard to understand. So many of my friends and family members have told me they “just want me to feel better.” But over and over again I have had to admit I can’t be cured. Again and again, I have come across a new possible diagnosis, I have run the multitude of tests, only to be told that what I have is chronic and permanent. There is nothing that will make you feel defeated faster than knowing you are absolutely out of options.

So how can I reconcile being an optimist with accepting that my condition is chronic? I have learned it is absolutely OK to admit I am sick and can’t be cured. It’s often hard for people to accept this is the case, especially because I am so young. But honestly, accepting my reality is not the same as admitting defeat. When I say I am sick, it doesn’t mean I am a pessimist or giving up!

I will keep being an optimist by choosing to see the rainbow in every storm. I choose to look for the silver lining. It’s not always easy. But I think about the small things. For instance, I’m able to stay home because my husband has a job that pays well enough for him to support us both. I know many people who have had to keep working despite their health problems, and I am able not to work. And I am grateful for that!

I have an amazing dog who is always ready to snuggle up with me on my bad days. I have the comfiest couch known to man. Our air conditioner broke down and we were able to replace it. I have amazing family and friends and the most understanding and supportive husband, each person in my life helping me deal with this illness in the best way they know how.

I have many, many things I can be thankful for even on the worst of days. Some people will say, “If you don’t have your health, you don’t have anything.” But I challenge that statement. I say that as long as you are alive, you can find something to be grateful for no matter how small it seems.

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Thinkstock photo via DeepGreen.

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When You Have an Invisible Illness and You're Judged By Your 'Cover'

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The first time I realized the accuracy of the name “invisible illnesses” was in an emergency room.

If you met me that day, you would likely see a young, quiet blonde haired girl with no signs of physical injury. However, the saying “don’t judge a book by its cover” is painfully accurate. I was quiet due to the fact my tonsils had swollen to the size of oranges. This was due to a myalgic encephalomyelitis ravaged immune system that had decided to pack up and go on holiday right as the Epstein-Barr virus decided to set up shop. And when you can’t open your mouth without drooling everywhere, it’s nice to sit and just focus on breathing through the tiny hole in the fire pit of your throat.

Sitting behind me was a middle-aged woman and her husband that had arrived just after me. I may have had an almost completely blocked throat, but my ears were working just fine. Fine enough that I heard the woman turn to her husband as a nurse called my name, and mutter,
“Must be one of those hypochondriacs. She’s too young to be really sick.”

Since then I have heard enough variations of that sentiment to produce a full color spectrum. It has come from every angle more times than I can count. Hearing statements like that used to make me question if I’m sick enough. But being sick at all is sick enough. Feeling restricted in any way due to your illnesses, physical or mental, visible or invisible, traceable or not, is sick enough. I am valid, because I feel this way, and I know this isn’t “normal.” And hearing these things doesn’t make me angry. It makes me sad, and I’ll tell you why.

Woman from the emergency room, I would love it if what you said was true. It doesn’t seem likely that young people can get sick in no visible way. Yet, the most common time for people to get myalgic encephalomyelitis is between their 20s to mid-40s. It’s the same with many invisible conditions, such as fibromyalgia (ages 25-55), lupus (ages 15-40) and Crohn’s disease (20-29).

But I know why you thought that I was “too young.” It’s common for people to think that, because we are part of the group of invisible illnesses. Doctors used to call it the “yuppie flu,” because no one could see it physically, or through medical tests. The sentiment and all varieties of it is still a running theme among both the public and medical field. The problem isn’t with us, it is with the way society views (or doesn’t, in this case) invisible illness.

Times are changing with more people speaking out about mental and physical illness through movements like #MillionsMissing, or awareness months, or even just educating one person. We hold our power in sharing our stories, and educating others around us. We have been bought together, and we are stronger for it. And the more we speak up and normalize our existence, the less people will assume illness must be visible to be valid.

Woman from the emergency room, I hope meeting me changed your perception of what illness looks like. Because when you walked into the emergency department an hour later I saw you really see me. I saw you observe how I was hooked up to an IV, while my nurse took my vitals for what seemed like the hundredth time. You heard the doctor telling him to administer medication in an hour, three hours, six hours. Because you then made eye contact with me, and in that moment, I hope you understood: my illness doesn’t always have to be visible for you to see it’s real.

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Thinkstock Image By: 1Viktoria

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