Category: Unveiling Invisible Illnesses

Health, Unveiling Invisible Illnesses

How To Be There For Someone With Chronic Illnesses

mistibludream
    • Don’t ask an open ended question in regards to helping out. An example is asking someone if there is anything you can do to help; this is too broad of an offer. Though it is very kind, most likely the person you offered help to will feel too embarrassed to think of a specific thing. Instead, offer specific help, such as a house cleaning or dropping off dinner on an assigned night. Not only is this assistance incredibly helpful, but you also surpassed the uneasy ice breaker. No one knows what scope of help you are willing to give, nor do they want to feel like they might be asking too much. So, if you truly want your assistance redeemed then don’t give them the option to think and ask… just tell them when and how.
      Let them vent. You don’t have to have any answers or advice, just listen. We are used to small talk and the autopilot response, “I am fine, and you?” Advice is usually not something we are looking for unless we ask. It is likely we are very familiar with our health and have been living with chronic illnesses for some time. We tend to research, educate and advocate for our health. However, if we don’t feel like talking about it then just being present and distracting us from our health is a nice break. But when we do want to open up and vent about our health, just listen.
      We are not lazy. “It must be nice to be in bed all day,” is going to get you the asshole award. Trust me, we would rather have a life or be out at the beach, out with friends or working on a fun project, but instead we are prisoners to our own body. Be mindful that spending the day in bed is not as glorious as it sounds for a chronically ill person… that means it was a rough day.
      “You don’t look sick,” or “you are too young and healthy to be sick,” is something that we hear often and it only shows ignorance and a lack of empathy. Invisible illnesses are not obvious or blatantly apparent and because of this, we are often dismissed by medical professionals or deemed drug seekers. When you say that, it feels like betrayal and a reminder that no one understands. We may post our good day selfies or fun outing but what you don’t see is the 24/7 pain, depression and grieving, the tears, the complications and multiple doctors visits. You see a mask, warrior paint and the fake normal version of ourselves. We just hide it well.
      Gift suggestions: If we are in the hospital or recovering from a surgery, here are many little gift suggestions. After being asked by a friend what to bring to a hospital visit, I came up with some awesome go-to items: face wipes, lip balm, books, magazines, fuzzy blanket, essential oils, snacks, headphones or anything from my Amazon Spoonie List or Wildling Apothecary.
      Patience. We feel guilt and a whirlwind of emotions for having a chronic illnesses and for anyone who is involved. Your patience and support means the world to us, even if we have a hard time showing it. Don’t be afraid to point out our flaws but please try to be understanding and forgiving, as sometimes we don’t realize our suffering is showing in ways that can affect you, like an attitude or resting bitch face. Just tell us it’s okay and help is through instead of getting mad and angry.
      The Spoon Theory. We have a name that we call ourselves: spoonies. There is a spoon theory. In a nut shell, we have about twelve spoons per day. Each spoon represents our energy. Taking a shower might cost 2 spoons and cleaning our bathroom is about 5 spoons. Running errands and a doctors appointment takes about 5 more spoons. Then we are out of spoons that day, meaning we are tapped out and exhausted. Sometimes we even have to borrow spoons from the following day, leaving us bed bound. Many of us are trying to stretch our spoons out through the day, so when we cancel last minute, try not to get upset. Chances are we are pretty bummed about it but ran out of spoons. We still love being invited though!

    Thank you for caring enough to read this.

    Health, Unveiling Invisible Illnesses

    Moving Forward in 2019

    mistibludream

    2018 was a good year, despite having cancer, multiple surgeries and a few ups and downs. 2017 was awful and scary. My heart was at it’s worst. My POTS flare was the worst I ever had in my life. No doctors were on my side. I was having potentially fatal heart arrhythmias and I am shocked that I am here to tell about it. I am forever grateful for my pacemaker and supportive family.

    2018 was the year I got my health under control. I learned my body and what I can handle. I take care of myself and minimize toxins in my life. I advocate for myself and after 33 years I found out what was wrong with me and that it isn’t normal to feel pain every day, among a million other things. Despite no cure, simply having an answer has made my life better by educating myself, spreading awareness for others and learning about what is best for my health, as opposed to being in the dark.

    2019 is here and we all say that each new rotation around the sun will be the best ever, but I have learned that it is okay to feel. It is not okay to plaster fake positivity over emotions. I set goals daily, weekly, monthly, yearly and will continue to work on every aspect of my life whether it is day 1 or day 365.

    Sometimes I have bad days and I hate that it affects others, especially those who love and care about me. I am not going to share just my perfect moments and give people Sunday’s best version of myself. I am human. I know I am not easy to deal with sometimes. I am sorry, but this is me. I’m working on it.

    This year, for me, is about acceptance and moving forward. I have been grieving the reality of my health and the limitations and life changes that come with it. I was angry. I was in denial. It is important to focus on the good things in life but that doesn’t mean you need to pretend that tough times exist…. just don’t dwell there. I accept the cards I am dealt. I refuse to be in denial, ashamed or to hide, and will learn how to cope better and continue to improve the things that I can control.

    I hope you all are inspired by a fresh start but don’t forget that you can start fresh anytime. Each day is a new story to write. We are in control of how we navigate through our story and how we handle the things life throws at us. Pick your own adventure and make it a good one.

    Health, Unveiling Invisible Illnesses

    Unveiling Invisible Illnesses with Natalie Rose – Lupus

    mistibludream

    Natalie is a very goal-oriented, adventure-seeking, well poised young woman. She also has that laid-back but tough vibe. An invisible illness is an illness that is not apparent or obvious. Looking at Natalie, you would see many other qualities about her and never jump to an illness. However, she has Lupus.

    Lupus is an autoimmune disease that causes fevers, joint pain, fatigue, rashes, mouth ulcers, hair loss, sensitivity to the sun, pain and a wide range of various symptoms caused by your immune system attacking your healthy cells. Lupus comes in flares. It also must be managed and under control or it can be very scary and complicated, especially if your flare consists of a vital organ.

    As you can imagine, Lupus is hard to diagnose with so many symptoms. When you are not currently experiencing a flare, your blood work levels can look normal at that time. Getting in with specialists can take a long time as well. This also makes it complicated for diagnosis. There are twelve million misdiagnosis per year. Natalie shares her story in hopes of raising awareness and helping others in the same boat.

    What is your official diagnosis and when were you diagnosed?

    Systemic Lupus Erythematosus (SLE). I was diagnosed about 2 ½ years ago with Discoid Lupus, but my doctor warned me that SLE was still a possibility. About a year after that, a flare up landed me in the ICU; after seeing several different doctors, I was diagnosed with SLE.

    Looking back, how long where you having symptoms before you got diagnosed?

    At least a year or two. I had skin legions on my head and every doctor I saw diagnosed it as a fungus. After being on serious systemic fungal medications and seeing no change, I finally found a dermatologist who biopsied and diagnosed my legions. I always dismissed the joint pain as a side effect of being in the service industry for so long, but it turns out that my immune system was attacking my joints. I thought it was normal for people to be exhausted all the time, turns out it’s a symptom called “chronic fatigue.”

    What do you do to keep your symptoms managed?

    The most important thing that I had to learn was stress management. I quit the job that I hated. I’ve ended several relationships that caused me more stress than happiness. I learned how to either avoid stressful situations or take them in stride, rather than let them consume me. I wear sunscreen every day and do my best to cover up when I’m in the sun. One of the symptoms of lupus is being extremely photosensitive. Not only do I burn very easily, but it contributes to my other symptoms. A day in the sun usually means a few days of chronic fatigue and worse than usual joint pain. I try to get appropriate rest. Sometimes I have to bail on something I really wanted to do so I don’t push myself too hard and end up sick. It’s all about knowing your body and understanding your flare ups.

    What advice could you offer to someone who is currently struggling with the same illness?

    Keep a diary of symptoms so you can understand what leads to flare ups in order to try to prevent them. Don’t push yourself when you’re not feeling well, and certainly don’t let anyone make you feel bad for taking care of yourself first. Don’t let it hold you back though. I still enjoy all my outdoor hobbies, I just cover up and wear sunscreen. I’m still a career woman in a stressful field, I just manage my stress well. Most importantly, I would say not to waste time with people who are dismissive of your disease.

    What is the scariest moment you have experienced because of your illness?

    The time I ended up in the ICU. I woke up with a sore throat, and 10 hours later I couldn’t swallow, and was having trouble breathing. I had a simple cold but my immune system attacked my lymph nodes. I spent 3 days in the hospital on a high dose of steroids. I couldn’t eat or drink for a few days, and still had trouble for a while after that. While in the hospital I saw multiple hospitalists, my personal physician, an ENT doctor, a rheumatologist, and even an infectious disease doctor. They ran every test imaginable and just came back with the response, “looks like it was lupus”. It was by far the most painful and frightening experience of my life. Every time I get sick I worry if I’ll end up in that same situation again, or worse.

    How do people react when they discover you have an invisible illness and how does that make you feel?

    Most people don’t know what Lupus is, or they have some hazy image in their mind from episodes of House. For the most part, people are dismissive or just don’t understand. I think because you look happy, healthy, and young, they just assume that it’s not a big deal or not real. People often tell me that they’re “sorry.” I don’t want anyone to feel sorry for me. My life is pretty great, I just have an autoimmune disease that I have to live with. It’s really disappointing when people are dismissive of my symptoms. I don’t like or need anyone’s sympathy, but sometimes I would like to be able to rant about how terrible I feel without feeling judged or trivialized. I don’t like being held back by anything, so I get rather upset when a flare up causes me to call out of work, or bail on something that I want to do. It helps to be able to talk about it sometimes.

    What way can others show support to someone with an invisible illness?

    Just listen to us and try to be understanding. We know how to take care of ourselves, but sometimes it’s frustrating and overwhelming and we need a shoulder to cry on. If you’re in a relationship with someone who struggles with an invisible illness you should read up about it and be there for them as best you can. Don’t downplay or ignore their symptoms. Personally, I feel like laughter is the best medicine. My friends will make jokes about me being a vampire or how I need to start carrying a parasol. I much prefer that over someone telling me how sorry they are or being treated like I’m fragile.

    Favorite quote:

    When the going gets weird, the weird turn pro. -Hunter S. Thompson

    Three things you can’t live without:

    Great food, great friends, and my dog.

    What are your goals? Where do you see yourself in five years?

    Haha, I have a ton of goals! Anyone that knows me would describe me as very goal oriented. My goals are a little different than most because I’m not going to have children. In five years, I want to own my own home somewhere close to the water. Preferably on a creek somewhere in Melbourne. I plan on being very successful in my career. I’m working on getting in shape, so in five years I plan to be on a great work-out routine and to be healthy and fit. I just recently completed my dive certification which was one of my goals. Now I want to have all the certifications I need to be able to dive wrecks and caves. I plan to be travelling a lot and exploring beautiful new places as much as work will allow.

    *Photos taken at Traditionals Cuts, Shaves and Brews in Eau Gallie Arts District (Melbourne, Florida) by Misti Blu

    Unveiling Invisible Illnesses

    Unveiling Invisible Illnesses Documentary

    mistibludream

    Unveiling Invisible Illnesses – Documentary

    First interview down!

    I am looking for more volunteers to share their story on struggles with invisible illnesses, misdiagnosis, medical negligence, rare diseases or anyone in the medical field or a loved one who wants to share their side.

    mistibludream@gmail.com

    @mistibluday

    Health, Unveiling Invisible Illnesses

    Unveiling Invisible Illnesses – Stargardt Disease

    mistibludream

    Stargardt Disease, also known as macular dystrophy, is a genetic eye disease that causes progressive damage and degeneration of the macula. The macula is responsible for seeing sharp straight-ahead vision. The ABCA4 gene is linked to macular degeneration, which is central vision loss. The light sensitive cells in the retina deteriorate and affect the ability to fine focus, primarily the central vision.

    An invisible illness is a disability or illness that is not immediately apparent or visible. These illnesses significantly impair daily living and normal activities while the individual appears normal and healthy. It is my mission to raise awareness on each chronic illness, lessen discrimination from the public, reduce misdiagnosis, to help others feel connected and not alone with their diagnosis, to share our stories to friends and loved ones for better understanding.

    I interviewed Alyssa Hullinger to learn more about her invisible illness so that I could share her story. The first photo I took was to test my camera settings and the focus was on the background, all around Alyssa and not on her. After uploading the images, I viewed that first photo and realized: that is probably how she see everyone.

    What is your official diagnosis?

    Stargardt Disease

    When did you get diagnosed and how long did it take after initial symptoms?

    I began seeing some “spots” in June of 2016. I was 7 months pregnant with my daughter at the time. In January of 2017, I went for a routine eye exam and found it very difficult to read the chart, specifically with my right eye. My eye dr is a close friend, she checked me out and brought in the ophthalmologist to ask his opinion. After he had a look, they immediately brought me in for a CT of both eyes and recommended I meet with a retina specialist. I met with the retina specialist in June and he suspected one of two genetic diseases that affect the macula. He recommended I see the genetic specialist at Bascom Palmer in Miami. I was diagnosed with stargardt’s by the genetic specialist in October of 2017.

    What advice do you have for anyone struggling with this same diagnosis?

    Stargardt’s is a degenerative disease and not one person is alike. I was angry for quite a while when I found out that I “should” expect to completely lose my central vision. The disease takes away the ability to see fine details. It is terrifying.

    I would tell them that it’s ok to feel whatever emotions it is that they are feeling. Feel it out and then discard it. Because focusing on what you are afraid of will only bring it to the forefront. Be grateful for the things you can still see. Look at things. Really look at them. All of the time. Don’t miss any opportunity to watch everything. Study the faces and hands and bodies of the people you love most. Be in full time gratitude for all of the things you can see right now.

    What are three things you can’t live without?

    Of course my husband, my daughter and our new baby on the way. My family is my whole world. My husband is my rock.

    Good coffee!

    Adaptability.

    Favorite quote:

    It may be that when we no longer know what to do,

    we have come to our real work,

    and that when we no longer know which way to go,

    we have begun our real journey.

    The mind that is not baffled is not employed.

    The impeded stream is the one that sings.

    –Wendell Berry

    What are your daily struggles?

    My biggest challenge is seeing faces. It’s so disheartening to not recognize people I have known forever. It is very challenging to make out the details in faces. Especially in backlit or dim lighting. The other day, I held out my hand to introduce myself to a person I’ve known for years. Also, reading to my 2 year old. I have a light that I clip on to books to be able to see a little better. It’s still a struggle sometimes to see words written in fancy fonts. Again, the fine details are challenging. I’ve learned to take my time when reading to her. She doesn’t understand why I’m reading slow and often becomes disinterested. Driving is becoming more challenging as well. I stopped driving at night (unless it’s a very short distance) and I won’t drive in places that I don’t know, even in daylight. I sometimes need to be reminded that I already know everything will be alright.

    How do people respond when they find out about your diagnosis?

    The most frustrating and most common response is when people ask “can’t you wear glasses?” I do wear contact lenses and/or glasses for near sightedness which is unrelated to this disease. Since my diagnosis, I have been getting my acuity tested every three months to help fine tune the sharpness of what I can see; my eye dr is magic. But no, there aren’t glasses that can “cure” this. If it was that easy of a fix, I certainly would already have them! I have kind of crafted a short description of stargardt’s to explain why my vision is altered. Usually the response after my speech is “that sucks!” Most people, especially my coworkers at my part time job, are super helpful when I ask what something says or for help finding things. I’m so grateful for their patience and kindness.

    What inspires you and keeps you motivated despite your invisible illness?

    My dear sweet great friend, Katy is one of my sources of inspiration. She rocked and lived like no one I have ever known, and she continues to rock on. Since the moment we met, she has inspired me to be better and do better. Also,my brother, Jimmie. No one works harder then he does. On top of his tireless dedication and determination, he is so kind and humble and generous. He is full of heart and his heart is love for his family and career.

    My motivation is my family, of course. My husband has my back, always, and making sure to teach our children that there is always another way; we just have to get back up and keep trying. Also, I’m blessed with incredibly supportive, strong friends.

    Health, Unveiling Invisible Illnesses

    Unveiling Invisible Illnesses – Preeclampsia

    mistibludream

    Roxanne is a strong woman with a masters in education and a passion for caring about others. The past few weeks have been roadblock after roadblock. Towards the end of her pregnancy, Roxanne was diagnosed with preeclampsia. She had to deliver her daughter early, by c-section, missing her maternity photo session and her baby shower, while worrying about the health of her preemie. After weeks in the NICU, they finally get to enjoy life at home as a new family of three, then Roxanne had a gallbladder attack. Soon after, she lost vision in one of her eyes.

    I came to visit her in the hospital and she was in great spirits. While staying positive and hopeful, I still see a glimpse of worry tucked away. I recently came up with the name Post Traumatic Health Disorder (PTHD). Amidst the healing, support and love, it can still be tough not to be scared.

    Roxanne shares her experience in hopes to let others know that they are not alone. As grateful as a new mother can be, it may also be difficult to see others have normal pregnancies and birth while going through many storms. At the end of the day, things could always be worse and we are given what we can handle and we grow from these experiences. We teach others how to be just as strong.

    *I will continue to update this post, should there be any health updates while she is in the hospital or after she is discharged.

    What is your invisible illness/diagnosis?

    Preeclampsia, which has now become high blood pressure (hypertension), and idiopathic optic neuritis.

    When did you start experiencing symptoms and how long did it take to get a diagnosis?

    I had no idea I had preeclampsia until I was taken to labor and delivery at 32 weeks and told I was delivering that night. They said this was the only way to resolve preeclampsia. Luckily, another hospital I was taken to did not want me to deliver, but allowed me to be on bed rest after 24 hours of a magnesium drip and 24 hour urine collection. My diagnosis then was mild preeclampsia with edema, high BP, and protein in my urine. I was told to have NST (non-stress test) and labs twice a week to ensure the baby was doing well. I received two doses of steroids to speed up the baby’s development of her lungs, just incase she came early.

    How many weeks were you when you had Brinley? Did you have any symptoms leading up to having her early?

    I was 34 weeks and 5 days when I had another screening and was told my placenta has given out and she needed to be taken out by csection before she was stillborn. She wasn’t get blood and oxygen quick enough.

    Did you have any health issues after she was born?

    My health issues continued after she was born. I continued with the high BP, but swelling and edema went away. Brinley was in the NICU for two weeks. We were only home for a week when I had a gallbladder attack. I was three weeks postpartum and thought it was still preeclampsia related. We got to the ER and after testing, I had no swelling, high BP still, but no protein in my urine. I had my gallbladder removed at 5 weeks postpartum, and at 6 weeks postpartum I was taken off BP meds and dismissed.

    Fast forward to 8 weeks postpartum and my eye was sore. With just one eye hurting, I figured it was from being tired with a new born so I brushed it off. I finally went to the optometrist where we thought allergies. It wasn’t. It got worse the next day and by day four I had lost all vision in my right eye. I saw an opthamalogist (a medical doctor) and had an MRI. They were looking for what was causing the blindness. I was diagnosed as optic neuritis. This means that something else is going on, because it’s not a single diagnosis but an underlying symptom of something bigger. Next, I’m admitted in the hospital for five days of high-dose IV steroids, and watchful eye on my BP and blood sugar. They have run many tests. I’ve been poked and prodded: two MRIs that show I’m perfectly healthy, and cleared from MS, lupus, Lyme disease, NMO, ANA, and everything auto immune. We still wait for the spinal tap to come back, but until then… it’s still just idiopathic optic neuritis. We are now on day four of steroids and my vision is slightly improving to where I can see shapes. It may take 4 weeks to a year to get back to where I was, but I will never be 100% in that eye. It’s scary, and my maternity leave has consisted of me and my newborn daughter taking turns in hospitals.

    How do you juggle general postpartum with having health anxiety from so many traumatic health experiences in a row?

    I don’t juggle. I’m just taking each day at a time. I’m not sure what else to do but to express my feelings and learning to try and deal with the fear of what’s next.

    What advice do you have for anyone who is experiencing what you have gone through?

    Trust your body and your instincts. I’m the most stubborn person I know, and I’ve had to push that aside and lean on people. My husband has been my rock, and without the support of him and my family and friends, I’m not sure I’d be doing as well as I am. Mental health is also important, so I’m seeking therapy now to help deal with anxiety and I will be the best I can be for my family.

    Favorite quote:

    It used to be, “What doesn’t kill you makes you stronger.” But it has progressed to, “This too shall pass.” It has to; and I will come out stronger than ever.

    Three things you can’t live without:

    My family, friends, and the ability to have a voice to help others and express that no matter what, you are not alone in your struggles.

    What is the best way to support someone in your position?

    Listen. Don’t react or give advice until it’s asked for. Listening and understanding, to a person struggling, is much better than just cutting them off and offering a solution. Sometimes we just need someone to hear us and know that our fears and anxieties are real and justified. It’s easy to tell someone to get over it or just move forward, but with trauma, no matter how big or small to you, is still trauma to that person dealing with it. It affects us all differently, but in the end…you are not alone.

    Health, mental health, Unveiling Invisible Illnesses

    The Invisible Battle of Chronic Illness

    mistibludream
    Ehlers Danlos Syndrome is an umbrella of many ailments that fall beneath it. This genetic disorder manifests in many ways; various joints and organs are affected and there is a large range of severity on each spectrum. None of us EDSers are the same. We call ourselves zebras because most doctors think of horses when they hear hooves, but rarely it can be a zebra. We are the zebras in the medical world. There is no cure for EDS but each symptom can be managed separately. It is tricky because we sometimes have several specialists to manage each symptom, or comorbidity, which can resemble having a full time job. Juggling this health conditions not only takes a toll on our energy but it also takes up most of our time. 
    On a regular basis, I see several specialists: cardiologist, electrophysiologist, pulmonologist, cardiothoracic surgeon, rheumatologist, neurologist, otolaryngologist (ENT), endocrinologist, gynecologist, gastroenterologist, and of course my general physician. I also sometimes see a chiropractor for traction and the use of some machines to help build strength in my lower back. I don’t have access, but need to see a geneticist, nephrologist, ophthalmologist and orthopedic specialist. That is about 12-16 specialists every 3-6 months. If I see fourteen doctors four times per year, just as a guess, that is fifty six doctors appointments in a year! I also end up in the ER, on average, about six times per year and usually have one or two hospital admissions… on a good year. This year, I had a few surgeries already and last year I had a pacemaker put in. Last year I probably had close to fifty emergency room visits so we won’t count that year. 
    An average day for me is waking up around 2am-4am with lower back pain, thirst and several bathroom breaks. I never truly sleep through the night. I have a dysfunctional nervous system (dysautonomia) and suffer from Neurocardiogenic Syncope, Postural Orthostatic Tachycardia Syndrome, sleep apnea and issues with my body temperature, blood pressure, heart rate and more. My pain level has NEVER been under a five on the 1-10 scale. Not even for a moment. I usually have to be out of bed by 7-8am because my body is so sore when lying down for a long time. Even if I am sick, I have to get out of bed or the pain is so severe that I can not breathe. This means that I can not sleep for over six hours without a break, or the pain is unbearable. 
    I take most of my medications and supplements in the morning. I usually start my day off with a headache, nausea, low blood pressure and a general feeling of being hungover but without the fun tequila shots. As I make it to midday, my entire body aches. Every cell in my body hurts. I feel so fatigued and exhausted, even if I didn’t do much. My head hurts and if I am around strong perfumes, chemicals or exposed to any chemicals in my food, I will have a runny nose, body aches and migraine with aura (visual disturbances). My lips and left hand go numb, simultaneously, about five times a day. No one knows why. My symptoms often mimic a stroke so I fear that one day if I have a stroke, I wouldn’t know the difference. I have chemical sensitivities that are hard to avoid. Wearing a mask and watching what I eat helps. Usually by 5-6pm, I am ready to collapse. Sometimes I make it through, with a smile on my face, because I try to live my life to the fullest. Despite how I feel, I push it to the limit to be the best mother, wife, friend, student and so on. I refuse to give up no matter how hard it gets.
    By evening, I have made it through the day and usually my body temperature is low and I am freezing but somehow feel like I am burning up and running a fever. My temperature usually will read 96-97 degrees. It is incredibly uncomfortable to feel hot and cold at the same time. My chest feels heavy at night and if I lie on my back I start to feel fluid in my lungs. On a tough day, I will breathe so shallow while I fall asleep that I jump up gasping for air, with low oxygen and a racing heart. Other nights, I can’t sleep because memories flash back from the past when I was in the back of an ambulance or in the ER with chaotic arrhythmias. I close my eyes and hope to get to the next morning. It all starts over again in the morning. 
    Depression can be a struggle for those who suffer with daily pain or frequent traumatic hospital visits. I recently came up with the term “Post Traumatic Health Disorder.” Depression can also be a factor because we feel like we have lost the person we once were and are prisoners to a body that doesn’t feel like it belongs to us. Our friends drop like flies the more we cancel on them, relationships are strained and many physicians don’t take us seriously because oftentimes these symptoms don’t show anything in blood work and we are passed off as a mental case. Many doctors are not familiar with rare, genetic disorders so they typically label us with anxiety or a catch-all diagnosis and send us on our way. We feel alone and like no one understands. It is scary, disheartening and frustrating. Seeing a therapist is important, as well as finding a support group.
    Having an invisible illness is a battle and we all think of ourselves as warriors. We are warriors. We battle and fight every damn day. Tears are shed on the battlefield often and we watch our tribe through ups and downs on our online support groups. We have lost some and watched others give up. We keep fighting and supporting each other and raising awareness while we struggle to make it out of bed.
    Always be kind to others, as you have no idea what they are battling under all that makeup and forced smile. And to those who are my fellow warriors, I believe you.