We’ve all been scolded for being on our phones, laptops and tablets. In this current age of rampant technology, it is understandable that these convenient devices can inhibit human interaction. While this is a growing issue, there is another side to this conversation that no one seems to be discussing.
What if technology was your only source of social interaction?
What if a disability, disease or mental health challenge inhibited your ability to have regular social interactions.
To these folks, a computer, tablet or cell phone may be the single source of not only entertainment, but also friendship and connection to other human beings.
Isolation is one of the most difficult parts of having any disability or illness. Not being able to socialize like we once did is a difficult card to be dealt, along with life long, incurable illness.
Most of us, before our diagnosis led very social, exciting lives. Most of us have had to mourn not only the life we once knew, but the friends that isolation took with it.
This is why it is SO important to keep in touch with your disabled friends and family and never judge them for the amount of time they spend on technology.
You never know how one text message or phone call can make a difference in someones life, for the good or bad.
For example. as a former career oriented women with a robust social life, since my diagnosis of Adrenal Insufficiency caused by my congenital disorder, Medullary Sponge Kidney I have had to reclaim a new life. I am no longer able to work a full time job and am mostly homebound. Due to health, I was forced to move away from my home state and am isolated in a foreign place for access to rare medical treatment. Texts, phone calls and social media are the main way I communicate with my friends and loved ones now. My extroverted soul aches in the isolated four walls I live in now.
I recently texted one of my loved ones, repeatedly, with no response.
I know it shouldn’t, but since that is my only source of communication with people, it hurts my feelings sometimes when people seem to be too busy for a three second reply.
This person’s response to my repeated text was “Sorry, I try not to be on my phone much.”
And I thought. “What a luxury.”
I miss the days where I didn’t have time to look at my phone because I was so busy running the geriatric home I was the director for. I was so busy perusing my degree in medicine I didn’t have time to scroll through social media. I was out in the world. I was an extrovert who was allowed to be extroverted.
Now, texts, calls, FB messages etc are my sources of social interaction, other than my weekly treatments at the hospital.
Social media and phones can be a source of JOY or a source of STRESS. It’s all in HOW you use it. It’s all in what you expose yourself to. It’s all in the people and content you ALLOW in your life.
If you are homebound and isolated, please don’t feel alone. There are many communities and support groups that understand the struggles you may be facing.
You are never alone, even if your only friends are in your phone đ
Another point to be made is how important streaming services and TV can be in the life of someone chronically ill.
I know we all have felt guilt at some point for how much binge watching we’ve done, but honestly this practice has it’s place!
There are days where I am in so much pain and feel so miserable from my disease that I have to have a distraction. My mental health depends on it. Sometimes, watching a comedian on netflix or a comforting classic movie is a much needed distraction for those of us who struggle with difficult diseases or disabilities.
There’s only so many deep breathing exercises, meditation and yoga you can do and sometimes you just need to rest and recuperate.
I know sometimes we feel guilty for the amount of resting we do, but when you battle a disease 24/7 365 with no remission, it is completely okay to need a distraction in your life.
If netflix, youtube, hulu or whatever is that distraction for you, by all means please do not feel guilt over that. You deserve to rest. You deserve to be able to enjoy movies, shows and entertainment just like the healthy people.
I will close with two messages:
1- Don’t let anyone berate you about being on technology if you are using it for POSITIVE reasons.
That being said, if technology and social media is becoming a source of stress, it’s ok to cut back on it. Just don’t isolate yourself completely. You deserve to be heard, understood and loved.
2- If you love someone who is homebound, sick or disabled, respond to their texts, messages and phone calls when you can.
I get it, you’re busy. But we should never be too busy to let someone know we care Sending a text takes 3 seconds, but it could make someones whole day! Make people you love a PRIORITY. Especially those with chronic health issues, they may value your efforts even more. <3
Wishing you hope, healing and happiness!
Love, Win
To read more from Winslow you can visit her website-
According to the Merriam-Webster dictionary, the word âchronicâ is defined as: continuing or occurring again and again for a long time, always present or encountered. The word âpainâ is simply defined as: mild to severe discomfort and suffering. If you combine the two definitions of the words “chronic” and “pain”, we reach a sole statement that describes the life of those whose ânormalâ has become something most people cannot comprehend: mild tosevere discomfort and suffering that is continuing and occurring again and again for a long time, and is always present and encountered.
Chronic Pain is Life Changing
As is the case with a lot of chronic pain warriors, my life didnât start out this way. There was once a time when my life didnât involve seeing my doctors more often than my friends; when pharmacy visits didnât happen every other day; when I didnât have to end up in the ER on a Wednesday night, curled tightly into the fetal position; when I didnât spend my nights tossing and turning because of the insomnia; when I didnât have to open a medication bottle multiple times a day.
There was a time when when I didnât have to research for hours on end just to understand what happens beneath my own skin; when I didnât have to sit and rest after a shower; when I didnât have to try to explain things about my body to other people that even I donât understand fully; and a time when I wasnât intimately familiar with the definition of âchronic painâ as a result of life has become every minute of every day.
Everything changed on of March 21st, 2011. It happened in the blink of an eye. It was a Monday, a bright and sunny afternoon, when an overthrown softball collided with the back of my skull as I was leaving our schoolâs softball field. I donât remember much of that incident, except for three distinct things: my coachâs voice close by which was ricocheting around me like a bouncy ball; the cracking sound of the softball hitting my skull resounding in my ears like an echo in a cave; And lastly, the pain. The pain is what I remember the most, and rightly so, as it hasnât stopped in 8 years, 5 months, and 25 days.
My Chronic Pain Journey
Throughout these years, months, and days, it has been a perplexing, debilitating, yet rewarding and valuable journey. There have been countless moments where I canât even seem to even hold myself up anymore, falling to the floor and weeping for the soul thatâs exhausted and depleted, and wondering if this is a life worth even living. I watched the doctor that I had trusted for 4 years look me in the eye and confidently tell me âI donât believe youâre in that much pain.â I had turned to her to help me find answers to my never-ending questions and search for treatments that would help give me just a small glimpse of blissful relief, and this is what she said to me. She didnât see the way I collapsed in the hallway; she didnât  hear my sobs outside of her pretentiously white-walled office; she didnât see my family pick me up off the ground, all the while telling me repeatedly âwe believe you.â
Living chronically ill isnât for the weak, it has more hard moments that you would ever be able to imagine. However, there are also some moments that have made this journey that Iâve been living worth it in the end. For example, it has taught me how self-love is one of the most important things in life. One morning, as I stared into the full-length mirror that I attached to the back of my university dorm door, all I could see was a shadow of someone I once knew, someone I couldnât even recognize. Staring at my reflection with my roommates laughing on the other side of the door, I said to my reflection, âI am going to love you one day, give me some time.â I realized that just because our bodies feel like a prison, that doesnât mean we should treat them that way. And sometime later, before I even knew it, I stared at that same reflection and saw something else. I saw someone who adored their body, even if it malfunctioned.
Living life with chronic pain, a mild to severe discomfort and suffering that is continuing and occurring again and again for a long time, always present and encountered, might be hard for others to understand, but itâs an understood normal for us chronic pain warriors. We wake up every morning to endure another day, with a strength we didnât know was possible. But itâs so important to love yourself, despite the reality your body puts you through. I loved myself as I walked across my university stage and received my college diploma; and I also loved myself as I sat in the ER in excruciating pain on a Tuesday night. Your body deserves the love you have to give, too.
I have been a chronic illness warrior since I was 4 years old and now I’m almost 30. It’s been a long road. First, I was diagnosed with Juvenile Rheumatoid Arthritis, which then was complicated by Lyme Disease contracted in my early teens but not diagnosed until a decade later. Finally, in the last 3 years I have been diagnosed with Postural Orthostatic Tachycardia Syndrome and Ehlers Danlos Syndrome. Crossing my fingers that’s everything diagnosed!
Watching The Other Kids
Growing up I fought back a lot of bitterness and resentment as I watched the other kids, teens, and twenty-somethings living their lives. I wanted to play sports, go out dancing and drinking, get a job I loved, or at the very least not need crutches and pills to get through my day.
I spent decades shuffling from doctor to doctor and doing what they said, thinking of my body as a malevolent adversary more with each passing year.
Changing My Perspective
Three years ago I got a job at a gym during a period of remission. As I learned about fitness and got deep into the strength athlete world I began to shift how I thought of my sick person lifestyle. Surrounded by people who did their PT, stuck to their diets, and took their supplements with religious intensity, I no longer felt alone. Here was a mindset I understood and, although my results didn’t look like an athlete’s, the similarity in lifestyle began to change my perspective.
Today, in recovery from one of the worst flares of my life, I balance my time between napping and gym-going. I lift weights and use a cane. I take creatine and also NSAIDs. My diet is dictated by painful digestion and I also count my macros. For the first time in my life I see my body as, at worst, a project I’m working on and, at best, my teammate in life.
The Athlete’s Approach
The athlete’s approach to chronic illness hasn’t solved all my problems. When I’m in pain for days on end I still sink into a stupor of depression. I still hate the choices I make to miss important events with my friends or give up a job I love because of my health. I may never be able to have children or pursue a high-powered successful career. But this new mindset has given me a rope to hold onto in the dark days.
On Instagram I follow a mix of powerlifters and spoonies. I find I have connections to both groups. I write mealplans and teach yoga for athletes and coach spoonies on managing their energy levels in flares and during recovery periods. I get to learn new ways to activate my quads before a squat from a powerlifter and then scroll a bit more for a new way to use turmeric to reduce inflammation from a spoonie. It’s a beautiful meeting of the worlds of sport and sickness and I’m learning to find the balance.
It Is Possible!!
I’m signed up for my first powerlifting meet this fall. I know my numbers are going to be awful and I wont be even slightly competitive in the sport. But I’m doing it. I’m getting up there and doing the thing while still being sick, which is more than my pre-athlete mindset would have even known to dream.
I spent years trying to get better so that I could do things. Now I’m trying out doing things and getting better all at once. Doing things and being chronically ill simultaneously. It’s hard. It’s a daily battle and I slip and I fail and I cry a lot. But it is possible. And I’m doing it. And you can too.
One of the hardest things about living with chronic illness(es) is that itâs exactly that: chronic. You know itâs never going to go away, and while you may have periods of time where you feel slightly better, eventually it gets worse again. There is no break, no pause button, let alone a cure. Sometimes those things that help can be exhausting and equally painful, such as surgeries and therapies. It consumes your entire life, and it can be difficult to learn how to not let it take over your life.
Everything Changes
Around ten years ago, my diagnoses started to roll in – although my symptoms had been coming and going for much longer. A brief summary of some of my conditions – and sadly, I will most likely forget a few – include:
Functional GI Disorders and a stomach hiatus hernia
Cervical spondylosis, protruding discs, scoliosis
Hypermobility and a grade 2 ATFL (anterior tibiofibular ligament) sprain/tear
Lately, my neuroradiologist has started to look further into all of my problems and has also asked me to look into EDS (Ehlers-Danlos Syndrome) and POTS (Postural Orthostatic Tachycardia Syndrome). His idea is that diagnosis wise, I have them, but it is my body and only I can determine how accurately these encompass my symptoms.
Someone like myself who has multiple diagnoses that require a lot of specific treatment and care is referred to as a person with âcomplex care/health needsâ. This makes life a little harder, as my doctors donât really communicate much with each other and I end up having to point out that I canât have certain medications or do certain things because of other conditions. While I have gotten used to it, it can be difficult when Iâm particularly struggling with one thing and am tempted to just go âoh well Iâll risk the heart attack and take these just to be in less painâ!
Dancing Through Life
When I was younger I loved performing. In fact, I still do – my dog frequently enjoys my performances of various songs from musicals I love when I have the house to myself. Up until I was sixteen I did a lot of dancing, and it dominated a lot of my time, which I loved. I like to be kept busy! I also did a lot of acting and singing and playing the piano. The ATFL sprain, which was initially thought to be a simple, minor sprain, put a stopper to that (along with the beginnings of regular palpitations and arrhythmia).
When I initially stopped dancing, I truly believed that in a couple of years time Iâd get back to my normal self and start dancing again. I was also having a lot of regular back pain, which doctors always brushed off. Who doesnât have back pain these days? When I was at drama school, the pain just wouldnât go away and I always seemed to be unwell. Eventually, this ended with me in hospital for a week, using a Zimmer frame to slowly get around, and I quit drama school (I didnât feel too bothered by this) and my job working on the London 2012 Olympics ceremonies.
In September 2013 I went to University. While there, although I continued to be in constant pain, had at least one million chest infections (alright, one million is a mild exaggeration), and a minor surgery, I managed to do 2 shows a year. One was a small stand-and-sing show, and one was the end of year cabaret. I absolutely loved doing those, despite the first two years I did the cabaret shows with a torn rotator cuff and sprained ankle, respectively. Iâm really happy that I managed to do them, because I absolutely love musicals and they made me so happy! I also did a lot of yoga at university, and Iâm so glad I did that while my body was still capable.
The Winner Takes It All
After leaving university I lost a lot of who I was, but I forced myself to keep being that person. I worked full time at a restaurant for a year, where I had been part-timing for two years while I studied. I went on tour for three months. I worked for a catering agency for a few months, taking every shift possible without regard to the fact that all humans need a day off sometimes. I forced myself into shoes that hurt my feet, to carry plates with hands that had lost all sensation and pick up crates of drinks with searing sciatica. I toured guests through famous sets with a grin on my face, spewing knowledge through the brain fog.
That year taught me so much, and although I did have a lot of fun and have so many fond memories – I wouldnât put myself through it ever again. My body has suffered so much from the time I spent pretending I was still okay, doing jobs I was good at despite knowing that I was damaging my health. Perhaps I was in denial about how bad my health really was, hiding it under the smiles and appearance of an able body? I could carry the heavy things and walk all those stairs and work fifteen hour shifts – by sheer force.
Who benefited from all of that? Certainly not me. Sure, I earned decent money and got to go on great holidays and buy nice things. But ultimately, that didnât help me. Having money didnât make me less ill. It helped with purchasing things that I need, but I barely had the time to use them since I was always at work. Bubble baths were my savior. I somehow managed to go on dates, meeting for lunch or dinner before I had to go to work, applying eyeliner to distract from my tired eyes. Obviously, that fizzled out after a few months. I no longer had the energy to go for lunch or meet up or do anything except get home and sleep until I had to work again. People were always telling me âIâm sure youâll feel a bit better when youâve got some restâ – but I neither believed them nor had the time to rest. I knew my body didnât have a âget wellâ mode anymore, so I didnât stop.
Until I went to my parents for the Christmas holidays and actually had consecutive days off. I was exhausted. I knew then that something had to change. I could not continue forcing my body into these extremes, and wasting time that should be spent with family and friends desperately trying to recover from the pain by myself. I suddenly realised I was losing far, far more than I was attempting to gain.
Me and the Sky
In January 2018, I started to work at a special needs college through an agency, having wanted to do something different. I had worked with children and young adults with disabilities for around four years by then, so I was really happy to be in this setting. Although I had spent my entire life vowing never to teach, I quickly started to enjoy doing this job. I have worked in three different classes, and have been the teacher for all three at this stage – something I never thought Iâd do! While the job is definitely stressful and exhausting, getting to push the boundaries of what society limits young people with learning difficulties and disabilities into is incredible.
Teaching and supporting young adults who have had barriers constantly put in place opened my eyes up about my own way of living with chronic health conditions and disabilities. When I take these students to their work placements, or see them achieve something they couldnât do a year ago, I realise I need to have that level of advocacy and encouragement for myself. If I am telling people to use their mobility aids, or finding adaptive equipment so they can make themselves a drink or a sandwich, why have I been ignoring the fact that I ought to be doing this too? I have this knowledge and ability to teach people how to do useful life things, yet I am not doing these same things for myself.
Itâs strange being able to work but not being able to do things like wash my own hair on a regular basis. I suppose I put all my energy into doing my job, and every so often Iâve got the energy to make myself dinner after work – although more often than not, I end up putting something in the oven while I shower. Usually with chips as a side, or pasta on a better day. But mostly, I am grateful for the change to, for a few hours a day, box up my own problems and focus on doing my job – because the job certainly requires a lot of my attention. Of course, I need breaks and I need the occasional time out for a migraine, or I wear slippers all day because my feet are too sore for shoes. I am aware that one day, maybe sooner than Iâd like, I will not be able to do this job. This is only something I have recently accepted, and am working on being okay with. For all I know, that could be this year – or it could be twenty years from now.
Being able to work with complex care needs is (aside from a blessing and an extra load of stress) almost like being able to âdo it allâ – and yet itâs far from it. If my colleagues are exhausted, stressed and in pain, what does that make me? Yet Iâm fortunate to have good support at work – aside from having on site nurses for the students and a safe place for my medication, we have an Occupational Health nurse who helps with risk assessments and work adjustments/advice to management so that I can do my job safely and effectively. Without this, itâs unlikely Iâd be doing this job.
Mama, Iâm A Big Girl Now
We can all agree that twenty six is definitely an adult age – although I, along with most of my friends, still nervously laugh at the idea of being an adult. Responsibilities? Doing things? Earning money? Saving money? What on earth was wrong with just going to school for a few hours a day with your friends and then doing the fun things with some pocket money you maybe had to wash the dishes to earn? Either way, itâs an adult age, whether I like it or not.
I spend a lot of time at my parents’ house – despite the rent I pay for my own apartment (although at the time of writing I donât have my own place thanks to a horrible experience with awful property management and a collapsed ceiling). Sometimes this is by choice because I do like to see my parents and my dog. Especially my dog! Her name is Holly and she is the most loving staffie you will ever meet. Anyway, I spend a lot of time at my parents’ house, but not necessarily by choice.
Going to my parentsâ house, while a long drive from work, means there is dinner for me at the end of the day where Iâd be too tired to make it myself. It means somebody can wash my hair, and pick up prescriptions when Iâm too exhausted to do it myself. I spent about two months recently commuting after leaving my apartment, and it was both exhausting and a blessing. I would not do it again though.
Like most mothers, mine is very protective, especially what with me being so unwell. Every so often she tries to sway me to just stay here where I can be looked after, and I think this is something many with chronic illnesses face. I know some people do move back to their parents because they cannot handle living alone with the state of their health – and have the same push of benefits and drawbacks. Nobody really wants to still be living with their parents in their twenties, no matter how much you love them. Despite being unwell, we do have our own lives and like to do things our way. My agreement is that Iâll get help, such as hiring a cleaner and see if I can get somebody to assist me with things like washing my hair, and do online grocery shopping rather than drag myself around a store. I hate that I canât do these things for myself, but itâs important to accept that in order to live independently I will need support with some aspects – and thatâs okay.
Who Lives, Who Dies, Who Tells Your Story
I am so incredibly fortunate for my support system. From that perspective, I really lucked out. My family, friends and colleagues are understanding, supportive and excellent advocates. Whether itâs making me a cup of tea or taking me to a hospital appointment, or accepting that meeting up will involve me lying on the floor with a hot water bottle, they have never once complained or questioned things. Even at Christmas, when my family all flew in and I spent most of my time in bed because I was so unwell and couldnât do anything on Christmas Day.
My little circle of close friends have known me for twelve years now, so theyâve really been on the whole journey with me. I still do things I love when I can, and having a wheelchair has definitely helped with that recently. It meant I could go to the beach with them, where they wanted to walk around the lanes and I knew Iâd struggle. It also means when I have a low energy day, I donât waste it on forcing myself to walk around somewhere and then paying for it big time later. Itâs life-changing. But they also know Iâm stubborn and will climb cliffs with them even if I have to crawl down them later, just so Iâve done what I love doing.
I only recently became more open about my health with everyone – probably only the last two years did I start to talk about it properly. Interestingly, people always end up coming to me and saying that their friend or colleague has something similar and give me a suggestion (certain massages or things like CBD oil) or say they were able to advise someone else with something I had told them. My mom even discusses me with her patients! Even though I donât know these people personally, it gives me a further sense of extended community support. Iâm not alone in this.
âGet well soonâ may be an impossibility, and thatâs not the easiest concept – no matter how often we say that itâs fine. Part of me will always miss the âold meâ who could do everything that I no longer can – but I also love the ânew meâ who perseveres through every single day and discovers more things that I am capable of. Turns out, I love to crochet (except when it dislocates my fingers) and I still love to sing and play the piano when I can. I love that I have friends who enjoy meeting up for a cup of tea, or drive over an hour to my apartment for takeaway and movie night. My best friend came all the way down from Manchester and all we did was sit on my parents sofa watching many episodes of Friends and a meal out. You guys are the best friends this broken little blonde could ask for.
The online chronic illness community is also incredible – I recently posted a story about my ovarian cysts, which I knew little about as the doctor didnât explain them, and suddenly everything was so much clearer. I felt less alone, less like I was in my own corner of impossible pain. I love being part of the Unchargeables team, sharing my journey on Instagram and getting to talk to fellow warriors every day!
Being unwell has almost consumed my life, but I will continue to resist it taking over every aspect of it. Whether itâs the occasional beach walk, dislocated fingers from making pies, or doing my job with an ice pack tied to my head – Vai is still here. Sure, Iâm not getting any better – and I will have days where I feel ready to give up. I have days where all I can do is lie in bed doing nothing because Iâve lost all motivation. But the time comes around where I draw on my eyebrows, put on my big hoop earrings, and continue to fight. Sharing my story has helped me come to terms with many things and a sounding ground for new and old problems.
About The Author
Vai is Lithuanian who has lived in England since the age of 2. She has a love of theatre and performance (she danced semi-professionally in her teens) and has a degree in Drama. She discovered her passion is in teaching SEN college students and supporting young people with disabilities. Vai has been diagnosed with several different chronic conditions and thinks it’s important to share her experiences of living with chronic illnesses to support others going through the same thing.
Hello, my name is Stacey Moisant and I am chronically ill. My story began about 35 years ago when I was diagnosed with Diabetes Type I. I was sent to a hospital locally and for 2 weeks. I was taught how to take insulin multiple times per day and how to eat by measuring out my food; back then it was a ½ cup of this, 4 ounces of this, a small handful of that. I have since learned how to carb count and have been on an insulin pump for almost 20 years.
Diagnosis After Diagnosis
Then around 13 years of age, I began falling and having issues with both of my knees swelling terribly and being very painful. After four surgeries I was diagnosed with a ârareâ form of Rheumatoid arthritis. I call it ârareâ because it doesnât show up in any of my blood work it only shows up in the fluid surrounding my knees. After multiple physicians telling me nothing was wrong or I no longer had rheumatoid arthritis I finally found a doctor who ran a test called Vectra DS which shows how severe my condition was. The results came back zero to 29 is low severity, 30-44 is moderate and 45 to 100 is high; mine came back as 52. My joints had already began to disfigure so my new physician started me on Humira. My hopes are that my joints stop moving and my pain decreases.
In the midst of trying to find a doctor to believe me about the rheumatoid arthritis, I started having severe abdominal swelling, I couldnât eat without throwing up and in a great deal of pain. I was diagnosed with Gastroparesis. On top of being Diabetic, I had to learn what I could and couldnât eat with this disorder. Pasta, pizza, potatoes, you know all the good stuff, was now off limits or at least limited ⌠do I want to hurt, is that food worth the pain? Sometimes the answer is yes and sometimes itâs no.
A few years went by with no new symptoms, no new diagnoses, just living day to day. I woke up and my husband and I decided to go to the grocery store and I had a twinge of pain in my right back but really didnât think much about it until half way through our shopping trip I doubled over in pain. We rushed home, I just wanted to lie down for a little while and see if it would subside. By this time my pain tolerance was very high and what use to by a 10 was now about a 6, so I lay down and about ten minutes later I rushed to the bathroom thinking I had to urinate and nothing, just more pain. I got my husband and he rushed me to the hospital to find out I had papillary necrosis in my right kidney. After about 15 surgeries to fix this, I am happy to report I have no further issues with my kidneys. They are hanging in there for the long haul.
At this time, I am now around 37 years old and I believe that my gastroparesis is acting up and I go to see my doctor after being in the ER due to vomiting and nausea etc. He took a CT scan and decides he needs to do a procedure to go in and look at my stomach and pancreas, the procedure is called an ERCP (endoscopic retrograde cholangiopancreatography). After my first ERCP I was diagnosed with a Sphincter of Oddi dysfunction and had to have a stent placed to keep that area from swelling shut. Then, I had to have another and another and another. One of the side effects of this procedure is pancreatitis and after the second procedure I again doubled over with pain and was rushed to the ER to find out I indeed had pancreatitis. Now you talk about pain but until you have experienced pancreatitis you have no idea what pain is. I thought I was dying. Due to the pancreatitis I have had multiple ERCPâs, 3 GJ tube placements, multiple hospitalizations and countless doctor visits. My GI doctor and I feel like family. He is an amazing man who has kept me alive for 11 years now.
Keep Living, Keep Moving & Finding Joy
I worked in the medical field for years; working at our local childrenâs hospital helping children to realize that yes they are sick and uniquely different, nevertheless you keep moving, keep living, keep finding joy in life and âif there is a will there is a wayâ. I have since been deemed disabled but I still make it one of my missions that with all of the above diagnoses and along with multiple others like hidradenitis, cellulitis, Mortonâs neuroma, dyshidrotic eczema, GERD, fibromyalgia, high cholesterol, thyroid disorder, obstructive and central sleep apnea, obsessive compulsive disorder, depression and anxiety to name a few I can still get out of bed and live a productive life taking care of myself and my family.
I am now 46 year old and truly believes that because I am chronically ill doesnât mean I canât find good things in life. I keep myself busy with crafts and pen addictions and taking care of my ailing parents. I try to do everything with a smile on my face and love in my heart. I have one child in which we adopted at the age of 3 now going on 20 years old. She is my greatest achievement in life. I never thought I would have children or be able to raise I child due to all of the pain that I go through on a daily basis but with Godâs help and direction I keep moving forward.
Check out Staceyâs instagram to follow her chronic illness journey.
My pain story goes back many years. I remember suffering widespread body pain from my teen years and on – I’m 56 now. Mostly it was mild for many years, but enough that I knew it wasn’t normal. I ached all the time, but back then, I was living a pretty transient lifestyle and it just wasn’t at the forefront of my mind. I finally settled down, had kids, entered and left a couple of relationships, and then met my wonderful husband.Â
Over the years I’ve had my share of surgeries, including appendix, uterus, then stomach surgery in 2004 for severe gastric reflux disease. In 2007, my body went into overtime with health problems, and I ended up having surgery to remove my left ovary, then my gallbladder and then my right ovary – all happening within a 6-month time frame. Talk about body trauma!Â
My surgeon also discovered that I had scar tissue covering my bladder and bowels each time he operated and that I’d probably had endometriosis for years without knowing it. It certainly explains a lot of why I had so much pelvic pain over the years.Â
The List Of Chronic Illnesses Goes On and On
So now, in addition to my Fibromyalgia and Myofascial pain, I live with:
Chronic Pain / Chronic Fatigue Syndrome
Osteoarthritis (in all my major joints)
Forestierâs Disease (aka D.I.S.H., a spinal condition affecting my thoracic spine)
Bone spurs on fingers on right hand, plus inflamed tendons in right palm
High Cholesterol
Raynaud’s Disease
Hypothyroidism
Brachydactyly Type E (a genetic bone condition I was born with)
 Pam In Pain
Iâve been lucky in that Iâve had good family doctors in both cities Iâve lived in (Calgary, AB and now Langford, BC). I was referred to and accepted into outpatient treatment at the Chronic Pain Centre while living in Calgary, and there, I worked with a team including doctors, physiotherapists, a psychologist, and others. We tried several types of injections for the Myofascial trigger points, including Botox, but nothing helped. My Fibromyalgia wasnât really treated other than putting me on Lyrica first and then Cymbalta, and thatâs all the treatment Iâve had for it.
I have been on Disability since 2009 as I can’t sit, stand, lift or carry for more than a few minutes at a time…I’m constantly having to move or shift position to prevent my muscles from stiffening or going into spasm. The doctor who diagnosed my Fibro and Myofascial pain said it’s among the worst he’s ever seen. I’m never pain-free, I’m constantly exhausted because I can’t get into the deep restorative sleep….I’m loopy and dizzy from drugs and as much as I keep a positive attitude, I’m frustrated beyond belief that this is what my life has become.Â
My body is hypersensitive to many things including the feeling of labels in clothing, loud noise, smellsâŚ.you name it. I’ve also developed persistent excessive sweating – I can be in a freezing cold area and have goosebumps all over, but I’ll be sweating from my head, arms and chest. So embarrassing and uncomfortable!!
For a period of time, I attended group classes at the Victoria Pain Clinic for relaxation, diet, exercise, etc. and it did help to learn other ways to focus and cope. It also helped to be with people who “get it”. My husband is a saint, and treats me like a princess, but as wonderful as he is, he can’t feel what I feel. Sometimes, the best thing I can do is soak in a hot bathtub and try to focus on other things, but nothing ever makes the pain go away. I pray a lot – my faith in Christ is huge, and I allow myself to be taken care of so I can focus on healing. That was a hard step for me, but a necessary one. I’ve always been the doer, but now…I need to step back and take care of me.
In 2017, I had my right hip replaced because my osteoarthritis was so bad, and there was an impingement as well, which meant the head of the femur wasnât sitting in the hip socket properly. The surgery took a couple of hours to do, and I was in the hospital for just 2 days before I went home. The nurses had me up and on my feet, the day after surgery and there was actually little pain. My recovery took approximately 6 months and while Iâm still using a cane, itâs because I have knee problems on the same side, not because of the hip. My hip feels great and Iâm so pleased with the surgery. My left hip will need to be replaced as well, but hopefully not for another year or so.
The Future Is Full Of Hope
This year, I will be facing brain surgery as a result of my Trigeminal Neuralgia. Iâve run out of treatment options as the drugs I take no longer are effective. Iâve even tried Botox for my TN, but without good results, so Iâm looking at a surgery called Micro Vascular Decompression to relieve pressure on the Trigeminal Nerve and hopefully it will leave me pain free!
So what have I learned through all of this?
I am stronger than I thought I was, and Iâm able to tolerate a lot more than I thought I could
You need a team, or at least one good partner to help you when you live with health issues. For me, itâs my husband Ray. I couldnât do this alone, but he makes everything better. He believes in me, he helps me physically with things I canât do, and he never makes me feel like Iâm âless thanâ for not being able to do things because of my physical pain or my fatigue.
Pacing – you need to be able to pace yourself throughout the day in order to live your best life with chronic pain and fatigue. That means letting some things slide in order to accomplish a few other things. For example, Monday may be a day for sweeping and thatâs it – dishes have to wait. Or, you do the dishes, but vacuuming gets put off until tomorrow. You need to learn how much energy you have and the best way to use it. If you havenât read the Spoon Theory, itâs a good example to explain all about energy and how much it takes for us to do everyday ordinary things.
You are enough, just the way you are. Period.
Accept that this is reality but never give up hope for things to improve.
I struggle with a lot of health issues, but my motto is âthere is always hopeâ. Itâs the name of my blog as well, where I write about Chronic Pain and Invisible Illness. I keep a positive outlook on life and I know that despite the fact thereâs a lot of negative things going on for me health-wise, it could be a whole lot worse as well. I feel blessed overall and I never take things for granted.Â
About The Author
Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com She also writes for The Mighty, PainResource.com and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC. She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie.
Weâve all been there. Something goes wrong somewhere and it delays us being able to get the medicines weâve come to rely on to make it through each day. Maybe itâs a problem with a doctor writing a prescription in time before you run out. Maybe you have the physical prescription, but the pharmacy it out of the medication and needs to order it. Maybe funds are tight, like they are for many of us, and you just canât afford the medication. It could really be any reason, but most of us have had times when this has been an issue. So now what?
My medication nightmare began over a month ago. I live in the Canary Islands, near Spain, but I order the thyroid supplement I take for my Hashimotoâs through a company in the United States. Since itâs being shipped internationally and has to go through customs, I am always sure to allow plenty of extra time. Iâve never had a problem, until now that is. Itâs been over a month and I still have not been able to receive my medication. No matter what I do, I seem to hit another roadblock. At this point, Iâve actually cancelled the order and attempted to reorder in hopes I wonât have the same issues, as Iâve never encountered this problem before, but only time will tell.
So what can you do if you run out of a medication? Hopefully, youâll never be in this predicament, but if you are, here are some things to try.
First, try to avoid the problem. It happens. Many of us take multiple medications throughout the day. Itâs easy to lose track of how many pills you need to make it through the week. You look at the bottle and think youâll be okay, until, before you know it, youâre down to your last pills. If you can, try to order the medication before youâll actually be out of it. This will also allow time for the pharmacy to order it if necessary. Some pharmacies have automatic refills to help with this, but a good way to ensure you wonât run out is to make a habit of reordering the prescription a week before the date it was last filled. For example, if you last filled your prescription on the 20th of the month, reorder it on the 13th of the next month. Set a reminder if you need to.
Second, pay attention to how many refills you have left. Often with chronic illnesses, you may take a specific medication for months or years on end. With the exception of pain medications, doctors will often allow multiple refills on a single prescription. Try to pay attention to this so youâre not trying to refill a prescription when no refills are available. Even when you or your pharmacist notices a new prescription is needed, the doctorâs office may not be able to fulfill the request immediately for any number of reasons. Therefore, itâs important to allow time for this. The one week rule from the previous paragraph works well here too. Ideally, you may have realized the need at your last appointment and requested the prescription then, but allowing the week buffer leaves enough time for your pharmacist to contact the doctor and the doctor to respond.
But what if you miscalculate or are even away from home and run out of your medication? Or maybe itâs a weekend and your doctorâs office it closed? There are a few things you can do. If youâre using your home pharmacy and have a history of taking a particular medication, your pharmacist may be able to give you an emergency supply of the medication, or just enough to make it through a couple of days until a prescription can be attained. You can also take the original bottle from the prescription into another pharmacy and, providing you have refills, the can fill the prescription or contact the prescribing doctor or even an on-call doctor when necessary. In a pinch, you may also be able to find a walk-in clinic and have the doctor there address your prescription needs.
Even with all of this in mind, sometimes life happens and youâre stuck without your meds. As a chronic illness sufferer, I know that with some of my medications, even just missing a single dose can make a huge difference. Then, of course, dealing with the resulting flare can be horrific and impact every aspect of life, from sleep habits, to brain fog, to eating, and participating in daily activities. This is the position I currently find myself in.
As I said earlier, Iâve been waiting for my thyroid supplement for over a month, but itâs caught up in customs. Initially, I tried rationing my medication to try to make it last longer in hopes that my order would arrive from the US. I would either take less doses each day or take smaller doses to stretch out what I had left. I figured something was better than nothing and really expected this to be a temporary situation. My body can definitely tell the difference. Even with the smaller doses, I was much more tired than usual, experienced more migraines, and just generally had more pain.
Now Iâve been without my medication for a while, and my body is not happy. Iâve become virtually dysfunctional. My fatigue is unending and the pain is unbearable. Itâs hard for me to complete work, do household tasks, and even spend time with my daughter. All I want to do is stay in bed all day.
As much as Iâd love to build a blanket fort and not come out until this nightmare is over, life must go on. For me right now, that means trying to organize my house and make it more livable as Iâve recently moved. I donât feel well. Like I said, Iâm exhausted, weak, and in pain, which is making it difficult to focus on even basic tasks. In the life of a Chargie, these factors can lead to disaster.
Not being able to take my medications has effected me in ways I would have never imagined. Recently, I was trying to make my house a little less chaotic and more settled after my move. I decided I would at least try to get rid of some of the empty boxes scattered throughout my house, as I thought this task required very little energy or concentration. Well, Things didnât quite go as I had planned.
I was attempting to fold a larger box to get it out of the way. Like I said, Iâve been feeling weak and my dexterity is waning from being off of my meds for so long, so the box slipped out of my hands. I bent down to try to catch it, when SMACK!!! I hit my head on the corner of a cabinet. OUCH!!! As if I didnât already have enough problems, I managed to give myself a concussion. Even the most menial tasks can require Herculean effort on a bad day. For more on this story, check out my YouTube video above.
Through all this pain and aggravation, I did learn a few things. First, plan ahead. Normally, I do this, but this time it wasnât enough as my meds are still being held hostage. Maybe now I know that what I thought was more than sufficient time may not be. Second, have a Plan B. In my case, thereâs really not much more I could have done for this particular medicine, but itâs good to know alternatives if you do find yourself out of a medication. Panic and stress will only make everything worse. Most importantly, if you do find yourself in this situation, be gentle with yourself. If you are already in a vulnerable and weakened position from being without your meds, pushing yourself will generally make you feel worse. While yes, life has to go on to some extent, pick and choose your battles so you donât make your flare worse than it needs to be. Everything else will still be there when youâre feeling better.
I have had stomach problems since I was a teenager, but I took me a until I was in my thirties to figure out the cause of my issues was actually Celiac Disease. As a teenager, I always had terrible cramps and acid reflux. By the time I was sixteen, my doctor put me in acid blockers to try to control my symptoms. I took the medicine every day for years and it helped, but my symptoms still persisted. Being that I was sixteen, the doctorâs attributed the cramps to my monthly cycle and figured the acid blockers would resolve the rest. But they didnât. I eventually just learned to live with the symptoms and go about my life. I thought this is just how my life would have to be. After all, I was feeling better, just not good.
When I was about twenty, my cramps became even stronger and more frequent and I was having trouble coping with the pain. I once again returned to my doctor, and he suggested that I do an elimination diet to see if what I was eating may be contributing to my symptoms. He suggested I replace the multigrain bread I normally ate with plain white bread or spelt which would be easier to digest and that I should eat a lot of yogurt, which has good probiotics and is easy to digest. He also prescribed a medication to help with the cramps. I made the dietary changes, took the medication, and it helped a little, but I was still suffering.
Itâs Hard to Work when Youâre Chronically Ill
While I was trying to figure out the cause of my gastrointestinal issues, I was also working a full-time job at a call center. This was the type of job that required you to clock in and out every time you took any kind of break. Even if you were just going to the bathroom, you were required to clock out when you left and back in when you returned. My symptoms had gotten so bad that I would have to go to the bathroom six or more times a day and I could be in there for ten minutes each time. Well, my employer took notice of this and I was called in for a meeting. As much as I tried to explain that I was legitimately ill and couldnât help it, all my employer saw was the time and my contract was not renewed. After about six months, this extreme flare finally calmed down. My stomach ache and acid reflux were just a part of my everyday life, but weâre not so bad that it was disruptive to my day or my life.
On Vacation, but not from my Symptoms
Some time passed and now I was about 26 and I went on a vacation to the Azores, Portuguese islands in the middle of the Atlantic Ocean. I looked 4 months pregnant! My stomach was extremely swollen and it hurt a lot. I had been been living on antacids and other medicines, but nothing was really working anymore. At the time, I thought my body may be reacting to the different foods I was eating. In this area, they tend to prepare everything using a lot of butter and I had stopped eating butter years ago, so I thought I must not be used to it anymore and thatâs what was probably causing my reaction. I was convinced the butter was the cause of my problems. Even when I just ate a salad, which obviously had no butter, I still felt really badly. It was so extreme. I was only there for a week or two, but when I showed people pictures from my trip, my physical transformation was so drastic that people would ask me if I really was pregnant.
I didnât know what was going on. As chronic illness life goes, you get some bad days, then you get some good days. Every year you have is different. Still, I was undiagnosed and I went on with my life. All the while, I kept taking stomach liners, acid blockers, and other medicines for my bowels. This became my daily regimen in order to live without constant abdominal pains and cramps.
Making Changes
Some more time past and now I was 31 or 32 years old. I started researching more into my health and looking into natural remedies and the holistic way of living. I wanted to change my lifestyle to try to feel better. I had stopped eating sugar years prior and it made me feel so much better, but I noticed after a couple of years, the effects of that wore off or something. I decided to make some other changes I hoped of regaining that feeling. I knew I had to do something drastic. Thatâs when I started the autoimmune protocol diet. For this diet, you cut out all sugar, lactose, gluten, rice, seeds, and beans and then slowly start reintroducing them back into your diet to see which ones are aggravating your body. For me, cutting out gluten was the hardest. Iâd literally dream of bread and croissants and pizza. It was crazy!
After being on the autoimmune protocol diet for about 3 or 4 months, I really did start to feel better and I tried to introduce things back into my diet. During that time, I would get together with a group of friends monthly, and we would cook and eat dinner together. This day, we each brought something to be grilled and so we would all prepare the food and then share it amongst the group. One of my friends made something breaded. I donât remember what is was, but it was being cooked on the same grill with everything else. As I was still not eating gluten, I did not eat the breaded food, but instead partook in the other options. but it was in the same grill.
By the time I got home and I was so sick! I got cramps and I had major brain fog. I couldnât think straight. I was sweating profusely and was sick and exhausted for three days. I thought this was an extreme reaction, so I started doing research into what could have caused it. Thatâs when I discover the cross-contamination that can occur with gluten. Still, I was surprised that I had such a strong reaction. I learned that this is actual quite normal when someone is exposed to gluten after long periods of time without it.
My Daughter is Following in my Footsteps
About six months later, I noticed my daughter, who was about four at the time, was very tired and cranky all the time. She was a picky eater and would only really eat bread, potatoes, doughnuts, and of course candy. This seemed strange to me, so I brought her to he pediatrician thinking she may have picked up a bacteria or parasite somehow. We went to the doctor and had her tested, but the tests were negative for any bacteria or parasites. Still, I knew something had to be wrong, so I asked her doctor what else could be done. He told me there were two things we could try. The first option was to virtually turn her inside out running tests to look for anything and everything. Since she was still so young, her doctor thought that would be extreme. The second option was far less invasive. He suggested eliminating gluten for about two weeks to see how she responded. This made a lot of sense to me in light of my own experiences with gluten, so we decided to give it a try.
Going gluten-free was very upsetting to my daughter at first. She had seen the strict autoimmune protocol diet that I had been following and thought that was what she would have to do too. I explained to her that what she was doing was not nearly as strict. She would not have to give up everything, only the gluten. Over the next three days, we finished all the bread and doughnuts and other gluten-containing foods in the house and went 100% gluten-free. The rest of my family wanted to support, so they stopped eating gluten too so she wouldnât feel so badly. Her dad, my mom (her grandma), and my sister (her aunt) all gave up gluten so my daughter wouldnât feel alone.
After four days, I had a different child. She had energy and was not so cranky. I could hardly believe the difference! Just by not eating bread, cookies and other gluten-containing foods, I had my daughter back. I still let her have some treats, like cake, but she ate the gluten-free kind instead, as I wanted her to still be able to eat similar foods to what she was used to. After a month, we went back to the doctor to report how it had gone. The doctor said that her improvements indicated that she has celiac disease.
Itâs in my Genes!
By this time, my daughter was feeling better and had gotten accustomed to eating the gluten-free foods, so my mom and sister thought it would be okay for them to go back to eating the regular bread and other foods they had given up to support my daughter, but their bodies had other plans. When they ate regular bread again, they got really sick. Unbeknownst to all of us, we all had celiac disease.
It all made sense now. As a baby, my daughter had the worst acid reflux. She couldnât hold her milk down and she never wanted to eat the porridge. It was difficult to make her eat stuff because she couldnât keep it down. Thankfully, now we know why. She had been diagnosed with celiac when she was 4 and now we know that it tends to run in the families.
Everything is Starting to Make Sense Now
It took me over 30 years to figure out that I have celiac disease. I believe that many of my autoimmune issues stem from me having undiagnosed celiac disease. Celiac disease is an autoimmune disease in which your own immune cells track the gluten enzymes within your small intestine. Your body is basically attacking itself. Looking at my timeline of all my diagnosis, I think this could be the cause of many of my chronic illnesses. I started having my Graves symptoms at 16, but I only got diagnosed at 19. Then at 28, I had Hashimotoâs Disease that went undiagnosed for about 6 years. After my Hashimotoâs diagnosis, I started having Raynaudâs disease, which is also an autoimmune disease that effects blood flow. If you donât figure out whatâs causing autoimmune conditions, they have a tendency to accumulate. Since I discovered my celiac disease so late, I wonder if that may have been the catalyst for my other conditions. I may never know.
I hope my familyâs story helped you in some way. I know by sharing my experiences with my own family, my mom and sister have given up gluten and are now feeling better. Itâs not for everyone though. Some people have experimented with going gluten-free to try to lose weight or think itâs the cure for any ailment, but itâs not. Going gluten-free is not necessary for everyone. If you think you may have celiac or be gluten intolerant, talk to your doctor and consider trying an elimination diet to find out. Some people can eat gluten with no problems, but for those with celiac, it is a real and serious autoimmune condition that effects their daily life and not just another dietary fad.
When youâre chronically ill, it can be very easy to lose yourself in feelings of low self-worth and self-pity, and to generally feel depression and despair. Often we lose the ability to do what we once could and just getting through each day can be a challenge. You tend to focus on what you are no longer able to do or what other people who are healthy can do. Even though you are sick, you can still try to focus on the positives or things you can do in order to live your personal best life. In our community, these small celebrations are called, âChargie Winsâ.
The Power of Positivity
I tend to be a very positive person by nature, so I subconsciously tend to find these âChargie Winsâ, even when Iâm having a really bad day. Like I said, it can really be anything meaningful to you that youâve been able to accomplish during a given day. For example, I have not been feeling well for the past few days. I canceled all of my plans and got no work done. Yesterday, I was finally able to take a shower and wash my hair and today I straightened my hair and did my makeup to record a video. To someone without chronic illnesses, these are things they take for granted that they are able to do everyday, but for me, these are Chargie Wins.
Do Unto Others
As I said, I have not been feeling well and have been in bed for three days. Itâs very easy for someone to feel down under those circumstances. When people donât feel well physically, it can also effect how they feel mentally or emotionally. When this happens to me, I find it helpful to focus on the positive. Something that always makes me feel better is helping other people. Iâll go to the Unchargeables Instagram account or Facebook page and read through the posts and try to give other people advice or encouragement. It can also be a good distraction from whatever I may have going on. Iâve found that when I support others, they return the support when I need it as well. It can even help to know that someone else relates to what you are going through. This also helps me to feel productive and like Iâm doing something good in the world.
I also enjoy looking at the Facebook and Instagram accounts for another reason: other people will share their Chargie Wins. This can be a good reminder to celebrate the little things when it doesnât seem like thereâs anything worth celebrating. Itâs also a reminder that everyone has their own challenges and good and bad days. Sometimes it just gives me a gentle reminder to stay positive and tomorrow can be a better day.
The Path to Acceptance
At times, my health will not allow me to be on the computer or use screens. Since so much of my work for the Unchargeables requires being at the computer, these days can be difficult for me. I have learned that I just need to accept this and hope that things get better, but for now I have to just do whatever I can do. On days like this, I will practice self-care and do things like listen to podcasts, cuddle with my animals, or spend quiet time with my daughter instead. Life with chronic illness is unpredictable. You never know how you will feel from one day to the next. Thatâs why it is important to set realistic goals for yourself and manage expectations. With this comes acceptance. For me, acceptance means that today was a bad day so I didnât accomplish everything I wanted to and hopefully tomorrow will be better.
My capacity for acceptance was challenged during my recent move. I had planned out my entire week. I told myself I was going to do a certain amount of work and packing each day in order to meet my goal in time for my move. Well, thatâs what my mind said, but my body had other plans. When the first day of packing came, I was physically unable to do it. I thought, well, itâs not a big deal. Iâll just do more tomorrow. Tomorrow came and I still was not feeling well enough to do anything. The same thing happened the next day. Part of me wanted to scream! My plan did not work and I was off of my schedule and still had so much to do. I calmed down and realized that there was really nothing I could do about it. That was something I had to accept. I would get everything done at my own slower pace as I was able. Sometimes you have to amend your expectations to fit circumstances you cannot change.
Itâs Hard to be a Mom
Another area of my life where acceptance comes into play is when trying to raise my daughter. Being a chronically ill mother is the worst! I often feel guilty for not feeling well enough to play with her as much as she would like. I canât always take her to the park or the movies or even just outside to play. My body will not allow it. I feel guilty for not being able to do some of the things parents who donât have chronic illnesses can do with their children. Itâs hard, but Iâve learned acceptance in this area of life too. On my bad days, Iâll try to do things like cuddle with her and watch a movie or even reading stories.
Iâve also accepted that I need help sometimes. I have told the other kidsâ parents that Iâm chronically ill. I will plan play dates for her with other kids so that she can still have fun even when I am not feeling well enough to play with her. I have told the other parents about my illness so that they can not only be there for my daughter, but myself as well. Everyone needs help sometimes, but when youâre chronically ill, having that support system becomes even more important.
Thereâs Always Tomorrow
Iâve learned that the biggest part of staying positive when living with a chronic illness is to manage expectations. For many of us, those expectations are drastically different from those which we had for ourselves prior to becoming chronically ill. Instead of focusing on what we used to do or can no longer do, it it important to shift attention towards the victories we can attain. These Chargie Wins, though they may seem minor to those who are not chronically ill, should be celebrated for the accomplishments they are. Furthermore, even if something did not work out quite as we would have liked, accept that it may not be able to be changed, but know that tomorrow is another day.
I didnât know I had celiac disease, also know as a gluten allergy, until about six years ago, and now I have to be careful eating everywhere I go. Gluten can be anywhere, even hidden in places that you wouldnât expect it to be. I have had to become a food label detective in order to keep myself as well as my daughter safe. When you have a gluten allergy, or any food allergy for that matter, there are some things you need to consider in order to remain safe.
Think and Prepare Ahead
Recently, I was visiting my friend, Hemme in her home. She knows me very well and is aware of my dietary restrictions, so prior to my visit, she asked me for a list of foods that will be safe for me to eat during my visit. I sent her a list of foods that are generally okay for me to eat, and she actually did a great job accommodating my gluten allergy. Even still, I nearly had a reaction.
She was preparing fish with a breading and thought that she could simply make mine without the breading and I would be fine. What she didnât realize is that by having the fish on the same tray or even in the same vicinity, cross-contamination could occur. This is a huge problem people with gluten allergies commonly encounter. She was really happy I caught her and called this to her attention before I got sick, but such realizations are not so easy when dining out in a restaurant.
Then, Hemme was going to prepare some pasta. I eat lentil pasta because I canât have the corn or rice that is often in other kinds of gluten-free pasta. She consulted the list I had sent her prior to my visit and bought lentil pasta for me to eat with my fish. Hemme bought frozen lentil pasta instead of fresh or dried. I read the package and sure enough, it contained cornstarch and rice flour, so I could not have that either. Sometimes things that seem like they are safe at first glance really arenât.
The Packages are Lying!
Iâm sure we have all been to the grocery store and have gotten lured in by all the different packages. We look at the front of the package and pick which variety of a product to buy. It may list a few key ingredients and maybe some nutritional information, but thatâs just the beginning of the story. In order to get the full picture, you have to turn the package over to the back. That is where youâll find the rest of the information: all the ingredients and nutritional information.
Sometimes, you even have to be a scientist or detective to find out exactly what you are eating. Especially with more processed foods, ingredients may go by different names or contain additives to make foods shelf stable for longer periods of time. Sometimes you almost need to recognize the elements of ingredients or certain key words to know if something is safe to eat. It can be very deceiving. For example, something that does not typically contain corn may use corn syrup as a sweetener. If you canât have corn, then you also canât have corn syrup or corn starch, and therefore this product is unsafe to eat.
The Dangers of Cross-Contamination
My daughter also has celiac disease. I have to educate people as to what is safe for her to have when I am not with her. She went to my friendâs house one day to play with her daughter. Iâve eaten there many times before and have never gotten sick, so I thought she would also be safe eating there. My friend is always very careful about how she prepares food, but she had gotten her some fries from a takeout place. Well, later that night, my daughter wasnât feeling well and I recognized her symptoms as a reaction to gluten. I was really surprised. I thought maybe I hadnât cleaned the oven well enough after my boyfriend used it to make regular (non gluten-free) bread. I questioned my friend about what my daughter ate when she was with her, and she told me about the fries.
What my friend didnât understand at the time is that even though the fries themselves might be safe, if they are fried in oil with other things that contain gluten, this can cause cross-contamination. Thatâs why when we go out to eat somewhere, we have to be sure that if she orders something like fries, they are the only thing the oil is used for. The restaurant using the same oils to fry something like chicken nuggets can result in an allergic reaction. Similarly, cooking areas and utensils need to be sanitized or designated as for gluten-free use.
Allergy Vs. Intolerance
Some people may not have a true allergy to gluten, but are rather just gluten intolerant.
When youâre gluten intolerant, you may get sick when you are exposed to gluten. Your stomach may hurt, or youâll feel tired and just generally may not feel well. With a gluten allergy, also know as celiac, your body will actually attack the enzymes of gluten within the body creating an autoimmune response. This can often lead to other health issues as well. While not confirmed, I suspect that some of my other health issues may actually stem from having celiac disease and eating bread and pizza for 30 years.
Gluten is Everywhere!
Gluten is a group of proteins, termed prolamins and glutelins, stored with starch in the endosperm of various cereal grains. It is found in wheat; barley, rye, and oats as well as products derived from these grains such as breads and malts. Itâs is found in many of the most common foods we all enjoy eating and can be very difficult to avoid. Itâs in breads, cookies, cakes, pizza, cereals, and many other places that you wouldnât suspect.
You always have to check the back of the package when you are trying to avoid gluten because, like I said before, the front of the package lies and the back of the package actually tells you whatâs inside. You have to make sure that it says that it doesnât have any wheat or wheat derivatives in it and that it actually says, âgluten freeâ. Gluten can be in unexpected places, even in foods youâd think would be safe, like chocolate or hamburgers. It is necessary to become a food detective and read what exactly goes in to a given product. This can be tricky as it can vary by brands of similar products and even by different varieties of a particular brand.
While I focused on gluten allergy and intolerance, as that is what effects my daughter and me, the same potential dangers exist when addressing any food allergy or sensitivity. Always consult the back of labels when addressing any food allergy or sensitivity. Even things that appear safe at first glance may not always be. Beware of cross-contamination. Taking these steps will help keep yourself and your loved ones safe and free from food-related reactions.
