In recovery for anorexia with purging tendencies. Severe asthma and tracheobronchomalacia Working towards getting more control over anxiety and depression
Community Voices

Please listen

Things are just really hard right now. Being a full time college student, double majoring, minoring, and doing two endorsements is a lot to take on. My health hasn’t been great. My lungs are really inflamed and I can’t breathe well at all. My asthma is out of control. I’ve also been having trouble with my vocal cords and voice box due to my trach. I can’t produce enough air pressure in my own to make sound so I tense up all my muscles to make noise. Doing that for two and a half years has taken its toll on me. No I can’t even talk without pain, let alone sing. And I have a scholarship that I only get to keep it I do choir. But at this point, it’s not about the money, it’s about the fact that I can’t do something I love. It’s about having to give up the one thing that I actually felt I was good at. I feel like I’m sacrificing my mental health for the sake of my physical health and it just sucks. I just want things to work out but they never seem to and I’m exhausted of trying to find people to help me. I saw a voice therapist and she didn’t understand the problem at all. In fact what she told me to do just made things worse. I just don’t know what to do. #Anxiety #Depression #listen

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Community Voices
Community Voices

What advice do you have for someone that has a chronic illness starting college?

I have severe asthma and tracheobronchomalacia. I have a tracheotomy and have to use a ventilator at night. I also have really bad anxiety and depression which I am working in treating. Any advice would be really helpful. I want to be as successful as possible.

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Community Voices

I’m overweight. I have an eating disorder. I’m anorexic with purging tendencies. I get compliments about my weight loss but I’m restricting and purging and punishing myself.
Recently, I had to buy a dress. The sizing seemed to run small, so to fit into the dress, I’ve been restricting a lot. My therapist wants me to go back to treatment. But some of my doctors still believe I’m losing weight just because I want to slim down. But really I’m struggling so much. I don’t want to go back to treatment. But I know I need to.

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Community Voices

Does anyone have tips on how to be honest with my psychiatrist and my therapist about my thoughts of #Suicide and #EatingDisorders behaviors?

I never have enough courage to tell them how I’m really feeling.

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Talia Drewe

The Struggles of Being a Chronically Ill Teenager

I don’t know what is worse: Having a common disease that is chronic, or always having to explain why I carry so many medications. Few people notice that is offensive to say, “But asthma isn’t that bad! Could it be something else?” These aren’t reassuring comments, every month I get told it’s still the same thing. But every time someone mentions that it could be something else, panic sets in. I feel myself suffocating as I feel the pile of bricks sitting on my chest, wondering if it’s something worse. Having to explain myself to the security guard at the airport or run out of class unable to breathe is embarrassing. It’s not a stranger’s right to know my entire life story – that’s between my friends, family, and doctors. So, every time I explain myself, I find myself scrambling to put my disease into words, even though it’s so common. My only wish is that people understood that whilst asthma is very common, people can have it so bad that they’re carrying around three medications a day just to stay alive. I may look physically well, I may live a somewhat normal teenager life by going to school five days a week, dance and band practice three days a week. But that doesn’t mean I don’t fight to be able to do this. Many days I don’t even have the energy to get out of bed. I don’t want to have to explain myself for another day or sit in the sickbay because someone decided to use deodorant around me. It’s embarrassing, and quite frankly, I can’t find the words to tell them not to. I don’t want to be the reason someone has to get made fun of in class because they stink. I don’t want that burden, so I struggle on my own in sickbay. I hate having to call my father to pick me up. He has a busy life, and he also has a chronic illness. But at least once a week, he finds himself at my school picking me up because my body doesn’t function properly. Waiting for my body to fail me again is tedious. I’m always terrified that I’ll get sick again, that I’ll fall behind and be forced to repeat the year. I work myself to the point of making myself sick because of this fear that my body will just stop. I’m terrified that I’ll have to call an ambulance to the school because I’ll pass out in class again, or I won’t be able to breathe. It’s humiliating knowing that there’s nothing I can do about it anymore. I spend weeks in hospitals sometimes. It’s hard being a 16-year-old, confined to a bed with itchy nasal prongs rubbing sores into her nose. Every time I get messages from classmates saying “get well soon” and emails from teachers saying “here’s what we covered,” it isolates me because I feel nobody wants to visit me. Through all my hospital admissions, I’ve had two friends visit me. It isolates me as I see them living their lives through posts on social media whilst I have the view of the playground outside the children’s ward, or the view of the nurse’s desk and blue curtains in the ICU ward. Everyone wills me to be strong through this, but when I’m carrying an oxygen tank through the school grounds or making friends with someone in a hospital, it tears me down. I don’t choose to make those friends, but when all that’s on the TV is kid’s movies, you’re forced to make friends with parents of kids and nurses. People have an assumption that every time you get sick, you’re better adjusted to it – but it destroys me. I’m always embarrassed to explain how I eat so much yet never gain weight. I’m always sick. My body uses all my energy to keep breathing. I can’t eat that much, so when people judge me and say rumors that I have anorexia nervosa, it is so hurtful. “It wasn’t my choice,” is what I always reminded myself. But when those comments stopped, I thought everyone realized it wasn’t my fault. But then rumors started that I was gaining weight too quickly, I was becoming “fat.” I stopped eating again, it got me into a lot of trouble with my family and doctors. But I stooped to the level of believing rumors, something that I vowed I would never do a long time ago. I always find myself thinking about amazing opportunities I’ve missed, classes I’ve failed, friends I’ve lost. Every time I fail a class someone says, “But you’re so smart? How did you fail?” It wasn’t my choice to be connected to a drip and on oxygen, trust me. I eventually learned that if someone wasn’t willing to accept that I can’t adjust to the pain of knowing everything that I’ve lost then they’re not worth being in my life. So, whilst someone tells me to be strong, I’ve had to accept the fact that my pain will always be here – physical or mental. My illness isn’t going anywhere. Until there is a cure found for what I’m going through, the physical pain will always be there. One thing people forget about living with a chronic illness is that feeling pain is OK. Going to therapy is OK – even recommended. For me, I find it hard to get over my sense of guilt, knowing that there are countless people going through it harder than me. But I remind myself that feeling pain is OK. Taking the time to remember we aren’t in a race to win being the sickest person on Earth isn’t a crime, it’s my way of accepting that we all go through different pain. Getty Image by monkeybusinessimages

Community Voices

Eating disorder thoughts and behaviors

I’ve really been struggling lately. I kept telling myself for the past few weeks that I wasn’t eating because I was anxious for finals, but finals are over now and all I can think about is how to avoid food. I’ve gone back to chewing a lot of gum and drinking a lot of water. I just need to keep losing weight. Being overweight but being anorexic is so hard. Most people think I’m just slimming down because it’s the right thing to do, but I’m actually punishing myself and starving myself to the point that it’s hard to function. I’m just really really tired of doing this. I don’t want to go back to the partial program I was in, but I’m worried my doctor will make me when he sees how much weight I lost in such a short amount of time.

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Community Voices

My dad is sick and it might be the beginning of the end

My dad has Bile Duct cancer. He’s beat the odds already but at his last appointment at the Mayo Clinic, the doctor said he had varicies in his esophagus. On Thursday night, he yelled for help and that he felt really weak. He passed out. He was too weak to move and his color was really bad. We called 911 and the EMTs said his blood pressure was dangerously low. We later found out that the varicies had come open and he was bleeding internally. His stomach was filling with blood. The doctors think they stopped the bleeding but it is only a temporary solution. He is in the ICU and he is in so much pain. A lot of things are going to change. He won’t be able to work much. He will be very weak. He looks so small in his hospital bed. When he had the breathing tube in, he wouldn’t even respond to me squeezing his hand. The doctors have said to expect the worse. Things don’t look good.

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Wendy Jordan

Experiencing Medical Gaslighting as an Asthma Patient

Having a chronic illness can be tough. You can’t even begin to explain to anyone what it’s like to have something looming over your head all the time — like a cloud hanging out over your head or like having a shadow following you. You think of all those things you love to and get reminded very quickly that you often can’t do them anymore. Then you have the attitudes of other people to contend with. Seeing memes where people overcome a disability aren’t always empowering. Yeah, it’s wonderful that a person can overcome something and do a sport or job they love. But not everyone has that kind of luck. Before my asthma became as bad as it is now, we’re talking over 10 years ago, my life was totally different. I had asthma but it was easily controlled and only got bad occasionally. I used to cycle five miles to and from work or college. I was a typical-looking young woman who loved going out with her friends and shopping. I was living in my first ever home (an attic conversion, two flights of stairs; no chance of that now!) and should have had my whole life ahead of me. It all changed after getting a bilateral pneumonia — that was the start of the descent. I’m not the kind to moan about how things are; I am grateful that my younger years could be filled with those wonderful experiences. I wasn’t always the healthiest and have had medical problems since childhood (they thought I’d be in a wheelchair before I was 21 thanks to medical issues, spinal deformity and HSP). As a kid, I couldn’t run and had problems walking. The school used to gaslight me and say it wasn’t anything but me being difficult. They convinced me that I was just useless and lazy. One teacher used to tell my mum I was just doing it for attention or to get out of hard work. I’m lucky as my mum fought in my corner and got me out of there, but the damage to my mental health was done. When you get a diagnosis of any mental health issues, soon enough that becomes the root of everything and the doctors often won’t see past it until they decide it’s not “in your head.” Sometimes I have presented to the Accident and Emergency department with asthma attacks but been triaged as having panic attacks, left to “calm down” and then found seriously ill. One of the worst experiences in a hospital occurred because a consultant was so convinced I was just “crazy.” I was 26 years old and had been admitted to the Respiratory High Care ward with a bad chest infection which triggered my asthma. I was so tired and my body ached. The consultant strode in with his team, completely ignoring all the notes. He pulled my oxygen off and stood talking to his team about me like I wasn’t there. “This woman regularly presents to us with what she says is asthma. My personal view and looking at her lung function tests is that her asthma is mild and this is a psychological problem. Stop all her medication and see how she goes.” He then left me. Within half an hour I was struggling to breathe, but I wouldn’t let the nurse put my oxygen back on until I was unable to fight. Another doctor came and restarted everything, but I was shaken up. A few days later, I saw the consultant again. This time he spoke to me. “Why did you reinstate your oxygen? You don’t need any treatment, you just need to stop this attention seeking behavior.” I explained that the nurses had reinstated the oxygen and got another doctor to look at me (because in his mind, I had apparently only done so because I didn’t like what he’d said!) This was in front of everyone on the ward, nurses, HCAs and patients. He then said he was throwing me out and that if I “showed up on [his] ward again, [I] would get sent straight to psych.” He stormed off after this and I broke down. I’m not one to cry for no reason, but I felt so bullied and cornered. My mental health almost made it open season to ridicule me in front of others. Everyone in the ward came in and hugged me, but I felt so low. The letter they sent to the GP following an admission was full of lies. My CT scan had been “misplaced” by the consultant and the new LFTs were dismissed as well (I got a copy of those myself so it couldn’t “vanish”). I felt so low, demoralized. Once again, my mental health was used as a way to make me feel like my illness was in some way my own fault. I’ll be honest, as soon as I got home, my then flatmate caught me attempting suicide. He held me as I sobbed and screamed. Without him, I’ve no doubt that I wouldn’t have looked back or stopped. At that moment it dawned on me — none of this was my fault. And if you’ve been put through similar, none of it was yours either. Our disabilities as diverse as we are. Some are “overcome;” others are harder to get through. We aren’t failures for not being able to do exactly the same as the people in those memes. We should be kind to ourselves and other people, remembering we don’t always know what they’re going through but we sure as anything know our own bodies and limits. What makes us strong is physical endurance, but what makes us mighty is our mental ability to keep going, even on those bad days or to stand up and tell someone who has tried to gaslight us that they are wrong. Oh and if you’re wondering, I put a formal complaint against the consultant; he’s no longer practicing. My friends and family supported me through the whole process and I am thankful for them.

Paige Wyant

15 'Embarrassing' Side Effects of Prednisone We Don't Talk About

If you’ve ever taken prednisone, you know it can cause some pretty wacky side effects. Prednisone, a steroid that helps reduce inflammation and suppress the immune system, is a common medication in the chronic illness community. While it can often be a huge help in relieving symptoms, like many meds, that relief may come with a “cost.” While there’s no reason anyone needs to feel ashamed of health issues or side effects that are out of their control (and if you’re not, don’t let us stop you!), it can still be tough when weight fluctuations or mood changes turn you into someone you don’t recognize. It may be difficult to talk about some of these side effects, but being honest and open about the many ways prednisone can affect someone is an important step toward raising awareness and promoting more understanding and compassion towards the people taking it. That’s why we asked our Mighty community to share an “embarrassing” side effect of prednisone they’ve experienced, and how it affects them. If you’re struggling with any of the following side effects, know you are not alone. Here’s what our community shared with us: “ I turn lobster red all over. People think I am super sunburned in the summer or dying in the winter.” – Jil S. “Ugh, I have such a love hate [relationship with] my steroids. Embarrassing side effects for me would be the rapid weight gain and horrible stretch marks all over my body that came with the Cushing’s disease because of the steroids. But the most embarrassing one for me are the ‘hot flashes’ and uncontrollable, profuse sweating. I’m always trying to find clothes that help hide it, sit on chairs that won’t show my butt stain of sweat, keep my hair back because half the time it’s so soaked it looks like I just got out of the shower, and avoid hugging people because I’m just so soaked that there’s no way they won’t feel it. So I always tell them air hug so you don’t have to touch me and my soaking wet face, back, arms etc. LOL. It’s such a mess!” – Jen K. “ Moon face, buffalo hump. ” – Joan W.A. “ How hard it is to wean off them! The overwhelming exhaustion, the Parkinson-like tremors and the severe muscle cramps that wake you up in the middle of the night. Oh and acne… everywhere…” – Sian S. “Definitely the weight gain! And painful attempts to lower the dosage that last at least two weeks, so I stay home and disappear from life during these times.” – Mighty member Pat “ Ravenous and insatiable hunger – to the point of binge-eating, which is not something I normally do.” – Kat H. “ The destruction of my teeth after long-term use of it.” – Marie B. “ My anxiety goes absolutely haywire… The last course I did, on day two, I had to go home because I initially thought I was having a heart attack and spent the entire day with my wife having to consistently take my pulse, helping me to breathe and otherwise try to calm down. I’ve had pretty bad panic attacks in the past, but nothing remotely close to how bad it was that day.” – Cole K. “ D angerous levels of rage and strength – my husband was taking it after a severe allergic reaction to a bee sting. The rage levels and strength and energy were so strong that he legitimately lifted and carried an 8-foot sleeper sofa outside, down the stairs and loaded it into our pickup truck. Alone! That sofa weighed more than he did. Later, the doctors told him that he was lucky his heart did not explode from the stress he had put it under by both taking the medication, and by lifting that sofa alone.” – Lona S. “ The urge to eat… once I ate so much someone else told me they’d throw up if I ate any more.” – Amy C. “ I was on prednisone for a short time in high school. I started randomly crying and just didn’t want to live anymore. Now I am no longer allowed to take prednisone.” – Rebecca J. “For me one was the weight gain like anyone but the biggest one was the hot flashes. My face would turn all pink and everyone would ask if I was OK and I would snap at them.” – Tori H. “I’m more irritable and it’s hard to sleep at night and it causes stomach issues. The worst was being super hungry all the time – no amount of food helped and I would literally snack all day, which I don’t do.” – Shandi C. “ Cataracts for me.” – Kathi G.S. “ Horrible mood swings and I can’t get angry without crying to save my life. The last time I was on them I was on my period so I had a horrific case of PMS. Additionally I’m usually on them because of joint issues so I get stir crazy because I’m not supposed to move to let inflammation go down. Stir crazy plus mood swings plus PMS do not mix well.” – Katrina C.O. For more on our community’s experiences with prednisone, check out the following stories: 17 Things People Wish They Knew When They Started Prednisone My Declassified Prednisone Survival Guide 12 Photos You Might Relate to If You’ve Taken Prednisone How I Learned to Love My ‘Prednisone Cheeks’ 16 Memes That Might Make You Laugh If You’ve Taken Prednisone