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What It Was Like to Lose My Insurance While Facing X-Linked Agammaglobulinemia

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In light of the new administration flirting with the idea of repealing the Affordable Care Act, I wanted to share a journey from my past in the hope of offering some perspective as someone who almost lost his life as a result of medical bureaucracy and consequential loss of insurance.

First, a little background. I was diagnosed with X-linked agammaglobulinemia (XLA) at the age of 3 and began monthly IVIG treatment. When I was 18 I moved out of my parents’ house because I was miserable and we had moved away from my friends and my girlfriend at the time. My mother, who for a long period of time was also my nurse while we were doing home infusions of IVIG, helped me get set up with insurance through MediCal. This enabled me to continue my monthly IVIG while not having to live with my parents. I returned to Children’s Hospital Los Angeles, where soon after I began participating in a research study for Baxter, testing out a new formula for IVIG. The result of this was that my IVIG, which is normally incredibly expensive without insurance, was free for the duration of the research study, so MediCal was really only paying for my time with my immunologist and use of the hospital facilities.

Things were going wonderfully on the study. This new formula caused significantly less side effects than my prior medication, and I felt like I was finally able to give back in a way. I then made the grave mistake of turning 21 years old in 2004. I received a letter from MediCal that basically said, “You are an adult now and are no longer our problem. Best of luck to you. Your policy is being terminated effective immediately.” This was confusing and devastating to me, to say the least. I tried to appeal but was not successful. It made me feel like a ghost – like I didn’t matter at all or even exist. Children’s Hospital, however, was wonderful enough to allow me to continue my treatment as part of the research study. This continued for several months after my birthday until I was turned away by my immunologist, unless I could afford to pay cash for my visits every month, which of course, I could not. This is a decision I will never understand or agree with, and I have moved on and hold no grudges, but that is a whole other story for another day (perhaps). In this moment, fear and uncertainty became very real and tangible to me.

As time went by, I started to become run down, as I always do when I am “down cycle” (the days or week prior to my next infusion). This led to my normal sinus infection, which continued to slowly get worse. Meanwhile, I was trying to figure out what I could do. I was applying for jobs that offered insurance, continuing to try to appeal to MediCal, and seeking other options such as Disability Insurance. I was finally able to get an appointment with a doctor at the Disability Office. I brought in my mountain of medical records, my continually worsening sinus infection, which had now spread to my chest, and tales of woe. This doctor refused to look at my medical records and asked me to give him “the short version” of my medical history. He then abruptly cut me off and began to examine me. He was looking for rheumatoid arthritis (RA) symptoms – some symptoms of XLA often play out as RA. My joints often get stiff and swollen. This is what this doctor was willing to see me for. Of course, my joints were acting fine during this exam, so this doctor literally called me a liar and asked me to leave his office. As soon as I got to my friend’s car, I fell on the ground in a puddle of my own tears and proceeded to have a panic attack. This was my last hope, and it had just blown up in my face. I felt like absolute garbage, both physically and emotionally.

Nine months into my lack of IVIG treatment, my sinus infection had developed into full-blown pneumonia. This was the second time I had pneumonia, and it was by far the worst case I’ve experienced. I did a lot of self-medicating to try to be as comfortable as possible and had truly begun to accept the fact that I was slowly dying. One night, I woke up on my couch in the middle of a panic attack. I crawled to my bathroom, ripped my clothes off and watched my face turn blue in the mirror as I could not breathe from the combination of the pneumonia and panic. I woke up on my bathroom floor the next morning. A dear friend of mine walked me into the emergency room at the hospital he worked at, and I was admitted and treated for pneumonia. I told them I had no money or insurance. By now, I had been let go from my part-time job due to being too sick. The hospital assured me they would submit a charity write-off for me. This never happened, and the resulting bills ended up going to collections a year or so later and was a massive headache to clear up. I also had to max out my credit card to fill the prescription of antibiotics I was given at the ER.

Although I didn’t die from the pneumonia, despite coming extremely close, I was not exactly healthy after this either. Eventually I ended up moving back in with my father in the mid-west in early 2005 where I stayed until 2008. I was able to go to the local clinic and have a constant supply of heavy antibiotics and steroids to keep me breathing and mostly functioning, but I was constantly sick and in the depths of a depression. I felt more hopeless than I had ever felt before. There is permanent scarring on my lungs and I no longer have the vocal range I did before all of this. After a while I started going to school again to try and distract myself and feel a sense of purpose. Every doctor I saw was the same story – “Why aren’t you on IVIG? You know, you really need to be.” My response was always the same, “I am painfully aware of this, but I can’t afford it.” This went on for five years.

Everything changed when I was in Los Angeles visiting with some friends in 2006. I met a girl named Kelly through a dear friend during this visit. As sappy as it sounds, I fell in love with her the moment I saw her. We began talking on MySpace and over the telephone. She eventually came to visit me at my father’s house, and then we started dating. She gave my hope and purpose. We were long distance until I finished my Associate’s Degree, at which point I returned to Los Angeles to live with her. We got married in October 2008, and starting January 2009 I was covered under her insurance policy through the California State University System and was finally able to resume my monthly IVIG treatment. I continued to get stronger and better, and am now as healthy as I can be for someone with XLA and all that time without treatment. Now, I have a good job through California State University and am actually carrying the insurance for both of us now. It feels great to be able to give back to her for literally saving my life.

I continue to sit in my cushy office as I write this story out. I am safe here. I will always be able to get my IVIG as long as I work here, and I am grateful. But that is not enough. I know there are countless other people out there with all kinds of other rare diseases who only have access to treatment through the Affordable Care Act. I will never endure another huge lapse in insurance or treatment like that again. I simply don’t have it in me, and I refuse to sit by and watch this happen to anyone else if I can do or say anything about it. I am truly hoping this new administration does the right thing and seeks to improve and build upon what the ACA has started and continue to move forward, instead of taking steps back that will inevitably cause long-term damage and even death to those with pre-existing conditions and rare diseases that rely on programs like the ACA.

I have no idea how or why I survived that period of my life, but I also believe everything happens for a reason. I grew a lot during that time and learned a lot about my body and my resolve. I believe I am here now to share my story, advocate for those who can’t advocate for themselves.

Thank you for your time. I love you.

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The photo above is a detail shot of a public art installation I did a few years ago titled “Relics,” to bring awareness to health insurance issues as it related to pre-existing conditions and rare diseases. If you would like to see more of my work, you can visit www.davidlucienart.net.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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On the Imminent Repeal of the Affordable Care Act: A Letter to My Representatives

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The Crohn’s & Colitis Foundation of America (CCFA) has an articulate, thorough form letter available on its website that is automatically sent to your senators and representatives based on your address. If you have inflammatory bowel disease (IBD), know someone who does, or are an incredibly kind, empathetic soul who likes to advocate for strangers, please take advantage of this tool.

It took me less than five minutes to input my personal information and jazz up the letter with my own story.

With the transition of power happening here in the U.S., it is all but guaranteed that the Affordable Care Act (ACA or Obamacare) will be repealed. The GOP, who will now control the House and Senate and are the chosen party of our POTUS, have been working for years to try and repeal the ACA. It is at the top of their list to “repeal and replace” this cornerstone of President Obama’s work over the past eight years, with “repeal” being the certain part of the plan and the “replace” remaining a question mark. The GOP has no firm, clear, ready-to-go replacement plan in place. With this huge and largely unknown change on the horizon, it is more important than ever to defend and advocate for those with chronic illnesses who face the very real, very immediate threat of a lapse in health care coverage and discrimination from insurance companies for having a pre-existing condition. This is absolutely unacceptable and a step backwards in ensuring the life, liberties and the pursuit of happiness for Americans – unalienable rights our elected officials swear to uphold.

You can construct your own letter on the CCFA’s website and will find a copy of my letter welcoming the 115th Congress below:

Welcome to the 115th Congress! As a constituent and volunteer with the Crohn’s & Colitis Foundation of America (CCFA), I write to urge you to support health policies that protect patients’ access to the care they need. Below is information about inflammatory bowel diseases (IBD) followed by principles that we hope will guide your activities in the next Congress.

Crohn’s disease and ulcerative colitis, collectively known as inflammatory bowel diseases (IBD), affect approximately 1.6 million Americans. IBD are painful, medically incurable, debilitating diseases that affect the digestive system.

I was diagnosed with Crohn’s disease in 2010 at the age of 20. Since then, I’ve undergone surgery, tried six medications, countless vitamins and supplements, and have drastically changed my diet to still wake up to varying degrees of health day to day. I’ve balanced all of this while being a earning my bachelor’s degree, maintaining a full-time job, playing soccer and softball, performing improv, and volunteering with the CCFA’s Camp Oasis and Big Brothers Big Sisters LA in my free time.

I have personally benefitted from several of the provisions set forth in the ACA, and it is because of the health care I receive that I am able to stay healthy and lead such a productive and fulfilling life. I would love to see the continued health care coverage of those with pre-existing conditions, like myself, as well as any other American in need of heath care to be a top priority for our Congress in this and coming years.

The CCFA and I urge you to support the following health care access priorities:

– Ensure stability by accompanying any repeal of the Affordable Care Act (ACA) with a viable replacement. For patients with IBD, any interruption in coverage can lead to worsened health outcomes and consequences like surgery to remove all or part of the bowel.

– Maintain basic patient protections and prohibit insurer discrimination against chronic disease patients. Basic patient rights include prohibiting discrimination against patients with pre-existing conditions, allowing young adults to stay on their parent’s insurance until age 26, limiting patient out of pocket spending, and prohibiting lifetime annual caps.

– Improve the quality of insurance plans. Patients with chronic diseases like Crohn’s disease and ulcerative colitis need to be able to access a range of treatments, services, and specialists in a timely manner in order to optimize their health outcomes. Many patients are subject to medical management protocols like step therapy that delay appropriate treatment. National health policies must require minimum coverage standards, guard against discrimination, and ensure access to transparent and expedient appeals processes.

The following agencies support critical research on IBD in local facilities across the country:

– National Institutes of Health (NIH), including the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
– Centers for Disease Control and Prevention (CDC) IBD Program
– Department of Defense Peer-Reviewed Medical Research Program

These agencies must be provided robust funding in the annual appropriations bills in order to advance IBD medical research that will lead to new and better treatments and cures.

Lastly please consider joining the bi-partisan Congressional Crohn’s & Colitis Caucus. With 76 members at the end of 2016, the Caucus works together to raise awareness in Congress about Crohn’s Disease and ulcerative colitis, support medical research, and protect health care access. Please contact the office of Representative Nita Lowey (D-NY-17) to join this important group.

Thank you for your consideration for the above health care priorities of the IBD community. I look forward to working with you this year to support patients with IBD and other chronic diseases.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

We want to hear your story. Become a Mighty contributor here.

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The iPhone Apps I Use to Help Fight 'Fibro Fog'

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Anyone fighting an illness that affects cognitive ability understands the term “brain fog.” When you have fibromyalgia it’s called “fibro fog.” One of fibromyalgia patients’ biggest complaints, after pain and fatigue, is cognitive dysfunction. Many patients complain that fibro fog can be the most debilitating symptom. Fibro fog can feel like you are living in a haze, or underwater.

Fibro fog can also cause memory problems (short-term and long-term) along with confusion and problems with concentration. Some lesser known brain fog symptoms include problems with perception, problem-solving and multitasking. Fibro fog can cause aphasia and dysphasia. This can be embarrassing and frustrating when talking with others. It can often lead to a phone phobia or social anxiety.

I understand the frustration that fibro fog brings into daily life. It is one of the biggest problems I face. I isolate myself, making my social anxiety a battle every time I leave my house.

I have found ways that help control the impact my fibro fog can have on my every day. It’s not a cure – just some easily implemented uses of your iPhone. The more you use the features on your phone, the more of a habit they become and the more you can learn to trust it (mostly).

Contacts App

I keep essential information in the easy-to-use app. Just look up or add a new contact and input extra information you don’t want to forget. There is nothing like the guilt of a missed birthday of a loved one – I know. I add phone numbers and addresses (as many as I need – one for home, one for work, etc.), email addresses, birthdays and website URLs.

There is even a place for notes under the contact it pertains to. I have used it for reminders, such as a potluck meal needed or a condo buzzer number. I’ll even make a note if I have borrowed something so I remember to return it. It doesn’t work for library books, in my experience – those buggers still get returned at least a day late! Every time! Remember DVD rental stores? I danced when they announced no late fees!

I add notes with doctor contacts. Medical specialty, days/hours open and what the cancellation/reschedule policy is. I’ll add tests awaiting results, diagnoses, follow-up tests and medications. It’s so much less stressful to have the info at hand for future doctors I may see.

I like to make notes after medical appointments. I include a description of visit and the action plan on whatever follow-up is needed. It has helped when I am confused by medication changes. These notes have come in handy while talking to another doctor. My phone was perfect for the job.

The iPhone can be synced with other devices (desktop, laptop and tablet) to keep the info handy and up-to-date. It’s simple to add, edit or delete a contact at any time.

Camera Feature

There are so many versatile reasons I use my camera (rarely selfies, but too many of my dogs).

My sister showed me how she takes pictures of the closest sign to where she parks. (It might be a lane number, a floor or another marker you would recognize.) Better than my way – to aimlessly walk around clicking my alarm button and hoping to hear my car honk. I know I could also drop a pin. There are also apps to find your car but after trying them, I find this easier to remember!

I take a picture of any paperwork I may need to review. It is easy to upload the pictures to a tablet or computer for a larger screen to read on later.

If I am in a store and I see a few books that look interesting, I will take a picture of the covers and look them up at the library. There is usually a wait, but borrowing saves a tree and saves me money. I will buy books after I borrow them if I want a copy. That rarely happens since I don’t re-read books – there are too many others waiting to be discovered.

I have pictures on my phone for items like the dog food bag so I remember what brand/flavor they like.

Have an odd or very specific request on my grocery list? I take a picture of it or the flier; then it’s easy to look for it in the store and it helps match it to the right kind. I never remember without a picture if it isn’t “my” brand.

I’ll take selfies in changing rooms (only of myself, dressed!) when I am shopping for something specific, like a dress for a wedding, or when I’m not 100 percent sure about something. If I go to different stores I can remember what dresses, shoes, jeans, etc. I tried on and what they looked like. I try to get one picture of me in the outfits and another picture of the price tag that usually shows the store, size and price for comparison.

I always mean to take before and after pictures of projects I have completed. Even if it’s only to show myself. Every accomplishment should be rewarded. Chances are I worked through some major discomfort or pain to make it happen. It doesn’t need to be big – even an extra 30 minutes of self-care, like a hot bath. Or a treat like homemade comfort food.

Calendar App

I probably use my calendar the most. I try and remember to add all appointments and meetings as I make them – if I wait, I forget. I add reminders for when it’s time to make an appointment (like the dentist). I can schedule alarms and reminders ahead of time.

An area I find useful is scheduling phone calls, an area I really struggle with due to anxiety. (And one of the reasons I no longer work the front desk at a hearing clinic.)

I add daily reminders to myself. Errands I need to run, emails to return and items to remember (like those darned library books).

Everyday chores can be scheduled based on how my mind and body are feeling, my pain level and my fatigue. I can write down daily goals ahead of time but can move them to a different time or day if I am not up to do them when I had planned. It’s OK to have “no” days. Breaking up the week into smaller blocks of time is so much easier on my body than trying to do a marathon clean in a day.

I’ll keep a note and schedule bigger jobs for when I am having a better day. Or I wait until I have help or can delegate (e.g. husband mowing the lawn and son making dinner while I handle the laundry – three jobs done faster than it would take me to do one).

I keep track of things that come up and that will come up again. Dog grooming appointments, dog flea treatments. Oil changes and car maintenance. A handy reminder to check the hot tub chemicals. Medication renewals (this one is super handy). Even changing the clocks (hate it) and batteries in my smoke detectors for daylight savings. Hair appointments…whatever. I have used it to keep track of refund timelines on bigger purchases, in case we are unhappy with one.

Block off times daily (on repeat for as long as you need) for when I’m unavailable (e.g. if I have to take kids to and from school). Helps me plan the day better. Do you meal plan? Schedule it on the day you want to make it. This reminds me to take out something from the freezer.

I also use it to remind myself to schedule “me time.” It might just be a quiet bath, going for a walk with my dogs, getting my hair done or having a nap. I need to schedule time for it! Is there a TV program I’ve been waiting to see? I set a reminder or better yet, record it.

Sync to another device (laptop, tablet or desktop) so the information stays current and valid. Share appointments with family so they can see when you are busy and vice versa. This helps keep everyone on the same page and makes everyone accountable.

It can be set up with reminders of birthdays, anniversaries holidays or events via an email or Facebook.

If I’m having trouble remembering when to take my medication, I set it in my calendar on a daily repeat with an alarm.

Notes App

This is my second most used app, though I am using it less as I use my calendar more.

Have you ever walked into a grocery store sure you’ll remember the three items you need? You wrote a list, but if only you could find it… Then you wander the aisles, trying desperately trying to remember what you came in for. I am much better at keeping track of my phone than a list, though I still lose it in the house at least once a day.

I keep multiple lists set up and saved – the ones I use most often. I find it easy to add and delete items. I have lists for groceries based on the store. I try and prioritize jobs and break these down into manageable chunks of time. I try to ask for help and delegate when I can’t.

I have broken down my cleaning schedule by room and I try and do something every day. I find it also helps me remember where I left off if I do have to stop before the job is finished.

For big long-term goals, the to-do list is divided by room, job or project. I just add/delete as jobs come to mind or are completed or change priorities. I try and prioritize the jobs and break these down into manageable chunks of time. I try to ask for help and delegate when I can’t.

I keep a list of things I want to discuss with my doctor. A list of my current medications, vitamins and supplements for doctor appointments. The side effects of past medications and when I took them are useful when seeing other doctors.

Books I want to read, movies I would like to watch and songs to download all get added to a list, or I will forget! I also write down recipes to try (with a reference to locate the recipe later or the entire recipe if I don’t have a paper/pen handy).

Numbers to remember such as my library card number for online borrowing or my old video rental number (yes, I just deleted this five years after they closed – oops). Do not include account/password info, credit card info, etc. – use a secure app for these.

Write down notes of anything else that gets affected by fibro fog. Everyone needs help remembering different things – make note of them and try keeping a list!

When do I work on this? It’s a great distraction while waiting in a doctor’s office, waiting at the pharmacy, waiting in the car while my hubby runs an errand or while having a bath. Whenever I have a few quiet moments to settle my thoughts!

Some other ideas might be: kids’ clothing sizes, tracking info for Christmas shopping, gift ideas and already-bought gifts, tracking info for online purchases, immunization records, food journals, emergency info for others (such as an elderly parent), quick verbal directions, spending journal, meal plans for the week or the kids’ schedules.

Texting

I love text messaging. Being able to write out what I need to say creates much less anxiety than a phone call. Texting says to me, “It’s not important enough to phone about, but I am thinking of you, so get back to me when you can.” Or “I need a quick answer, not a conversation.” It helps me immensely with my phone anxiety!

Obviously, it is a great way to keep connected to family and friends. From “thinking of you” to special events. Conversations and pictures can be sent in “real time” so I can feel included if I am too ill to be there. Or I can send pictures to someone else that isn’t there. I can share them while texting, via Facebook or email. Sometimes they are awesome enough to print and frame!

When my brain is “autocorrecting” my mouth or I can’t find the word that I need, no one knows. I can take the time to respond and edit the text before I send it if it doesn’t make sense.

One of my specialists confirms her appointments via text message – I love it! My library sends out a return reminder two days before a book is due (and yet my books are still late).

More and more companies are using text messaging for promotions and customer service, making it easier than ever to reach out. Love it!

Alarm/Timer/Clock App

Before fibromyalgia, I was always on time, usually early, and people that were late were “rude.” I didn’t realize it was anxiety that was fueling me. I didn’t realize just how hard it could be for people to get themselves ready and out the door on time when they have a chronic illness. I do now – it’s hard, and I don’t judge people like I used to.

Since the fibromyalgia symptoms started, I struggle with getting anywhere on time. I am always underestimating how long something will take (a shower or traffic), the effort I’ll need or how I will be feeling.

I use my alarm to remind me to get in the shower – one of the things I procrastinate on. I set one 30 minutes before I should leave so I can try and get out the door on time. This gives me a little wiggle room while still getting out the door in enough time.

I use mine as a bedroom alarm clock. It charges on my nightstand so it works at reducing clutter (like a traditional alarm clock). I can’t stand the glowing light of a clock when I am trying to sleep, so this keeps it darker.

I can set an alarm to remind me to take medication. I know my “night meds” but if there are any I need to remember to take during the day, I use an alarm. I’ll set it when doing laundry to motivate me to flip the loads or fold. I use it while cooking (OK, baking…my hubby does the cooking) and find it handy to keep with me. I might not hear the kitchen timer if I am in another room or outside on the deck.

I use it to set limits. I set a timer for a set amount of time to work on a project (typically 15 to 30 minutes at a time). When the timer goes off I stop, or I’ll regret it later!

Using my phone also means I don’t need to wear a watch. This is useful since they hurt my wrists and I am allergic to most metals, so I usually get hives from them.

Weather App

Changes in weather are a huge complaint for those with fibro, myself included. I have a love/hate relationship with the weather app but I wouldn’t know what to do without it. Being able to look at the weekly forecast, I can “estimate” how my body will feel. Living in Vancouver, BC, we get a lot of rain… a lot! Dampness can set me into a fibro flare, so planning errands around those days are crucial for me.

I, like most people with fibromyalgia, have sensitivities to changing temperatures. Fibro doesn’t like when I am too hot or too cold. Being too hot makes me nauseous, dizzy, causes migraines and makes me very cranky. Fibromyalgia can cause an increased risk of heat stroke. Too cold and I am stiff, unable to warm up and I feel like I am going to break. It’s miserable.

Before going out, I check the weather again. Temperature changes can feel drastic, even just a few degrees. Layering clothing is ideal, and an extra jacket in the car is a great option. I keep a blanket in my car for emergencies.

It’s also handy to use when packing and traveling – are they having a hot or cold streak? What is the normal temperature? This way I can plan accordingly, with layers, for the different weather.

Other free apps I enjoy:

  • Facebook
  • Gmail
  • My bank app
  • Twitter
  • Pinterest
  • Craigslist
  • Yelp
  • Quora

Apps to look into while I wait somewhere (on my to-do list):

  • Toilet Finder App for IBS
  • Uber (if they ever legalize it here) for days I can’t drive, rather than stay home
  • Health apps to better track medical information, medication info (past and current), food log, exercise log, pain log, tests, results, blood work, etc. I suspect I will need multiple apps for what I want.
    • This might be an app worth paying for. And I hate paying for apps!
  • Better apps for Canadians (coupons, shopping etc.)
  • Online support apps for fibromyalgia, depression or anxiety

What technology do you use to help manage the day-to-day?

We want to hear your story. Become a Mighty contributor here.

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My Celiac Disease Is More Than Just a 'Tummy Ache'

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Two months ago I was diagnosed with celiac disease. To many of you this may seem like no big deal. You figure that I just can’t eat gluten, and I will be fine. But it’s not that easy.

When I get “glutened,” meaning I consume gluten, it’s more than just a tummy ache. First comes the intense tension headache, then comes the throwing up, overwhelming nausea, diarrhea and intense stomach pains. Still, this may not sound like a huge deal to you – more like a stomach flu than anything. The thing about celiac disease is that it’s an autoimmune disease, meaning that when I consume gluten, it is not like the typical allergy. My body begins to fight itself. My stomach launches into an inflammatory response which is what causes the above symptoms. My brain becomes foggy, and I become overwhelmed by pain. I have hit high levels of pain due to other chronic pain conditions, but this pain is by far the worst. I have hit a nine out of 10 with my celiac disease. I have sat on my floor sobbing, screaming and wanting to die from the pain of this condition.

Yet, most people are under the impression that I just get a slight tummy ache when I consume gluten. What these people don’t see are my last few months. The harsh truth is that before my diagnosis, I felt like I was dying. I lost 10 pounds in a short amount of time. I was unable to eat without reaching a level nine of pain, throwing up or a combination of the two. There were many theories thrown around for why this was happening — such as my Ehlers-Danlos syndrome — but when the blood test and biopsy came back positive it turned out to be celiac. I never even knew celiac could be this bad. When I had talked to people in the past, they had told me that when they eat gluten their stomachs hurt, but I did not realize it’s a kind of hurt that makes you feel like you’re dying.

The point of me writing this is not for pity. I don’t want to have you pity me for my chronic illness because it is something I did not choose and it will never change. What I want from you is understanding. Understand that 20 ppm of gluten in a product will set me off into a full-blown attack. Understand that you touching my snack means I can no longer eat it. Understand that my celiac disease is real and is much more than a tummy ache.

We want to hear your story. Become a Mighty contributor here.

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7 Reasons Why Giving 'Advice' About My Illness Is Hurtful, Not Helpful

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This week I found out that I had failed the last available drug licensed for Crohn’s disease in my country. This means that I am now at the mercy of off-label treatments while waiting for a new drug to become available. This means, that while my gastroenterologist will try everything he can to improve my quality of life, I’ve now run out of options that are reasonably expected to work. For me, this means becoming used to a level of disability that I do not welcome for the foreseeable future.

When I shared this news with friends I was surprised by their responses. I’m not sure what I was expecting. I suppose I was hoping for a level of empathy and a feeling of support; I wanted to know I am not alone in this. I’m fortunate that some friends provided just that response.

But, overwhelmingly, I was met with “helpful” suggestions to cure my Crohn’s. These included:

“Have you tried a vegan diet, it worked really well for me.”

“Essential oils might work, here’s a link where you can buy some.”

“I’ve got a friend with Crohn’s and know it can be managed, is there a self-help group you could go to?”

This was coupled with a wealth of articles sent to me promising “cures” for my disease. Each cure was a medicine I had tried, an alternative therapy that had no medical backing (that I had likely tried, too) or some new diet. Instead of feeling supported, I felt dejected and alone.

As someone who has battled with a chronic illness for over a decade, these types of responses are not new to me. What surprised me was that they were coming from people who had seen me struggle for years and who still seemed to have very little idea what my disease is or how it affects me. I wanted to share why “helpful” suggestions are often not helpful and offer an alternative; I know advice comes from a place of caring, but I need you to know that can hurt. Here’s why:

1. It shows you are not listening to the reality of my situation.

If I come to you with my thumb cut off and you offer me a standard plaster, it clearly shows that you’ve misunderstood my situation. What I need is a lift to A&E and some pretty immediate first-aid.

When I come to you and tell you I’m out of treatment options, that I feel terrible and that I can no longer lead the life I previously enjoyed, you suggesting that I take essential oils is the same as offering me a standard plaster. It completely ignores the reality of my situation.

2. It subtly suggests my illness is my fault.

When you say “have you tried this diet, it cured this person” what you’re saying is that there is a cure and that if I tried this cure I wouldn’t continue to live with this illness. Crohn’s, like many chronic illness, cannot be cured. I can promise you, I have tried everything I can think of to improve my situation. Every single day is a battle to improve my health. If you knew how many things I have tried, elemental diets, liquid diets, FODMAPs, Lofflex, paleo, probiotic and a myriad of bizarre mixes prescribed by “nutritionists” you may not be so quick to suggest another “cure.” Trust me, I’ve tried it and whatever it is you’ve found will not cure Crohn’s. It hurts to hear the subtle suggestion that I’ve let half of my life be dictated by a disease when I could have just taken some omega-3 tablets and been fine.

3. It’s about you.

If I say your suggestion probably won’t help improve my condition and your response is to be hurt or offended, then that shows your advice was to make you feel better, not me.

4. It makes others believe your “cure” might work.

Unfortunately, people aren’t always the best at doing research. We all want to believe that people’s problems can be fixed quickly and easily — it makes us feel safer. So, when people see your post suggesting my illness can be cured by taking slippery elm, they may take a sigh of relief, because that’s one problem off their list. Your post can help perpetuate myths around chronic illness and mean more people fail to understand the impact and difficulties that goes along with living with one.

5. It moves the conversation away from my situation and into a conversation about the merits of your “cure.”

If I’ve told you some big news about my health, or even some small news, what I’m saying is that something is going on in my life and it’s impacting me. I’m reaching out, I’m asking for support. I’m trying to share with you what my life is like right now. Some days, support from other people is all that keeps me going, if I’m telling you things are getting difficult, that means that I might need help.

By telling me about your new “cure” you effectively shut down the conversation. I can no longer tell you about how I feel, because if I tried what you offered my problem would go away. Suddenly, I’m placed in a position where I can no longer expect empathy and a listening ear but, instead, must go off to Holland and Barrett to buy a case of turmeric pills.

6. It puts more economic and emotional strain on me.

Life costs me £550 more on average a month as someone who is disabled. Costs come from being unable to work, requiring specialist equipment, maintaining a specialist diet and from the costs of medicines and travel to appointments, to name a few. My finances and physical resources are spent on getting myself better. I see my consultant, my GP, I cook meals that I know I will be able to digest, I try and walk each day to stay healthy. They may seem like small things, but when you’re sick for a long period of time and suffer from fatigue, each little action takes a lot of effort.

Your suggestion might seem easy to fulfill. Just another diet, just some more pills, just one more appointment. But, on top of what I’m already balancing, it may be incredibly difficult for me to include into my life. I may not have the money to fund it. Importantly, I may not have the emotional energy to invest in another “treatment” that I know is unlikely to work.

7. It reminds me of how alone I am in this.

For me, what stings most about the advice I get is that it shows how little you understand my condition. Do you know what it is? Have you bothered to google it? When you suggest crystals to heal my Crohn’s, all that shows is that you fundamentally do not understand what I live with day by day. When that comes from a stranger, I can handle it. But when it comes from a friend, from someone who claims to care about me, I don’t understand why you haven’t tried to learn about something that has changed my life so much. If you want to learn, I can tell you. But when you offer advice that clearly demonstrates you are ignorant about my condition it reminds me that I’m alone; because the people around me don’t even understand the basics, let alone the complexities, of this disease.

What helps:

But, like I said earlier, I have got some amazing friends and family who do make a difference and offer great support. I wanted to share what they do and why it works, just in case someone else might benefit from their knowledge.

1. Listen to what I’m telling you.

In order to support someone, you have to understand what they’re facing. There’s only one way to do that: listen to them. That means, listen to what they say, ask questions to clarify any misunderstandings and then listen some more. Once you know what their situation is you’ll be in a much better position to help support them.

2. Learn about their condition.

Chronic illnesses can be complex. There’s a lot of medications, a lot of technical terms and a lot of bad research. It can be overwhelming navigating everything and it’s likely your friend or relative has been handling all this on their own. Become your friend’s research ally. The internet provides a wealth of brilliant and terrible information. Learn to be discerning. If they think it would be helpful, ask your friend to tell you what’s going on with their illness so you can find out more about how their illness affects them. Gain knowledge, weigh the evidence and learn to differentiate between sensationalist media and information that may offer real help. Information is power.

3. Offer practical help or support.

Living with a chronic illness is tiring and stressful. It’s isolating. Each day I fight my body so that I can look after my basic needs. Cooking, cleaning, and keeping myself sane is about all I can do. I may look like I’m functioning well, but it’s taking everything I have to maintain that illusion.

You can help! Ask me what I need. Find out what I can eat and make me a meal. Come ’round mine and watch rubbish movies with me. Offer to come to appointments. Take me to the shops. Even sending me a nice message over Facebook or a letter helps enormously. Anything that helps me feel cared for and supported is immensely appreciated.

4. Accept I may not get better.

This is a hard one, but you may need to accept I may not get better. This isn’t a sprint, it’s a marathon. If you want to be in my life, you may need to learn to be a friend in a different way. There may never come the wonderful day when I have energy, when I can be what I once was, when I can offer the same practical support to you.

But, my life still has meaning. I can listen to you, I can still be fun, I can offer a different insight in the world. I hope I’ll be better one day, but I might not, I’ve accepted that – you need to, too.

5. Remind me that I am so much more than my illness.

My best friends, the ones I love the most, find ways for me to enjoy the world around me. They see what I’m passionate about, they see my limitations, and they find a way for me to enjoy my passions while acknowledging my limits. They get in their PJs with me and eat ice cream while we discuss politics and books. They plan trips in advance so I can make sure I have everything I need. They take me out my bedroom and into the big wide world. They remind me of my humanity.

I love these people. I wouldn’t continue to survive without these people. If you can, be that person to someone. I promise, it’s worth the investment.

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Why I'm Not a 'Secret Celiac'

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Everyone at school knows I have celiac disease. If the fact that I singlehandedly run The Celiac Saga was not nearly enough of a clue, my speech at one of last year’s all school assemblies should have done the trick. I’m passionate about celiac advocacy, and my hope is that one day, the world can catch up to the level of celiac-savviness that we have had to develop. Anyone who knows me personally is aware of the fact that I am more than happy to talk about my experiences, my symptoms, and to help out those who are struggling to adapt to their new lifestyle.

I am incredibly open about having celiac disease. But I will admit, there are times when I wish no one knew — especially my peers at school.

It’s not that anyone is outright cruel about it — there is no waving of bread in my face or taunting, but it’s the little ignorant comments here and there that add up. Comments like, “Wow, I would literally die if I couldn’t have bread” or “Dude, that must suck so bad” are harmless, but they can get old pretty quickly. I usually laugh it off, but there was one comment said this week that really got me thinking.

“Wow. That must be really, really hard. I can’t imagine having to live like that.”

And they’re right.

It’s hard, it’s frustrating, and it’s scary knowing that so little of something so common can knock me out for weeks. I remember how terrified I was when I was first diagnosed, how scared I was (and still am) to dine out, and how bitter I was that this disease had happened to me.

But then I remember how frustrating and scary it was to have constant stomach aches for a decade. How frustrating and scary it was to not be able to get out of bed. How frustrating and scary it was to go to doctor after doctor, only to be called “crazy” or “anxious.” I remember how relieved I felt when I was diagnosed, how the promise of a better, healthier future greatly outshone the hurdles this disease brought with it.

I remember the hidden gems I’ve found since getting diagnosed — the gluten-free bakeries, the allergen-free cafes, the amazing new foods I’ve gotten to try. I remember all of the wonderful people this disease has brought me to, how awesome of a baker I’ve become, and how much more confident and open I’ve learned to be because of this disease.

And in this moment, as I think over this comment, I no longer wish that no one knew. There is nothing that will change the fact that celiac disease is complicated and messy, but if I had the chance, I wouldn’t wish this disease away. The new opportunities I’ve had and people I’ve met because of my diagnosis makes every single ounce of frustration and fear worth it, and I refuse to let small doses of ignorance shame me into wishing I was silent about my disease.

I am a celiac, and I am proud.

This blog was originally published on The Celiac Saga.

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