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.
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 “rare” form of Rheumatoid arthritis. I call it “rare” because it doesn’t 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 couldn’t 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 couldn’t 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 it’s 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 didn’t 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 ERCP’s, 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 children’s 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 “if there is a will there is a way”. 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, Morton’s 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 doesn’t mean I can’t 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 God’s help and direction I keep moving forward.
Check out Stacey’s instagram to follow her chronic illness journey.
During this period of spreading breastfeeding awareness, I want to share how breastfeeding while experiencing chronic illness has affected me; I guess you could say I’m not the average mom. Depending on who I asked, I was told that breastfeeding was either easy or difficult. When I gave birth to my first daughter on the 20th of June 2017, I thought I’d take to breastfeeding with ease since I had watched a ton of videos and attended breastfeeding classes. This, however, was not the case.
After my daughter R was born, I struggled with getting her to latch on and instantly felt like a failure. I decided to consult a lactation consultant to come in because I did not want to give up. When she came in, we had to discuss what was going on. We discussed that R was a “lazy baby” and sucked on her wrist throughout my whole pregnancy. We had to used SNS (supplemental nursing system) and a nipple shield to convince her to latch. I cried many times throughout my stay because I had to use the SNS twice with the nipple shield and some formula just on me to get her to taste it another time. I remember feeling bone tired while R was nursing for hours at a time in the hospital, with the nurses coming in and badgering me to feed her more often. During those times it had felt like I had just finished nursing her, yet they would come in and tell me I wasn’t nursing her often enough.
My Experience Adjusting to Breastfeeding
During the first month at home, I was glad it was my summer break and that I did not have to stress about going back to work. I cried many times during the day and night because my fibromyalgia was flaring up and it hurt for R to be nursing for long periods of time. I struggled mentally at this time because of my PPD/A and I was struggling to build a relationship with my daughter. I never have experienced such pure and utter exhaustion like I did with struggling to breastfeed, experiencing a loss of sleep, and my chronic illnesses flaring up. I wanted to give up many times, and hearing some others just tell me to use bottles so that they could feed R didn’t help with my mental state. I also had people tell me not to breastfeed in public and to isolate myself whenever I needed to feed her. I found it was hard to carry her when I needed to walk with my service dog and just trying to find a place to nurse without people tripping on the dog or walking on me was difficult.
My husband has been a huge support,
along with my parents, for both our girls because they will take my girls and
let me sleep in in the morning. In the newborn stage (0-3 months) my girls woke
up often to feed, but it happened around the same time throughout the
night. No longer experiencing this interruption of sleep predictability helped
me to cope and not be as grumpy or frustrated with my sleep being
interrupted.
The Stigma that Surrounds Breastfeeding
Breastfeeding can be difficult for anyone, not just people with chronic illnesses. There is a stigma with breastfeeding that goes around along with a lot of misinformation. Unfortunately, there is a huge push for anyone who is breastfeeding to go and nurse in another room, bathroom, changing room, etc… There seems to be a huge push for formula and bottle feeding because it’s “more convenient” and allows others to feed the baby to “give mom a break”. There are even suggestions to just pump and bottle feed, but that is not an easier option because every time that the baby feeds, mom still needs to get up and pump, then take care of the pump parts and put the milk in storage. There’s a lot of work no matter what, and it can be a struggle.
Medication and Breastfeeding
Having chronic illnesses and making the choice to breastfeed will limit your options concerning medication. Even though you are not pregnant, you still have some limitations or weird changes of limitations on medication. After having my second daughter W, my body went into a flare with lupus and fibromyalgia. I discussed with my doctor what we could do, and he put me on a new medication that would not affect my daughter since I am still breastfeeding. I had to go back to my doctor this past week because the medication was working, but not at a therapeutic level.
He decided to up my medication again by 0.5mg (small increases as needed because everybody is different) and then discussed that I am still inflamed in my ears but the fluid in my inner ears was finally gone. We had initially wanted to put me on gabapentin, however, after my doctor went and looked up to see if it would be safe, he and I decided that we could not take the risk. The medication I was put on instead was one that claimed a minimal amount goes through the milk to the baby. We would have to monitor W as well as myself to make sure no harm or side effects were occurring.
It is a “safe” medication, but in the “if the benefits outweigh the risks” manner. I was slightly devastated because my pain is coming to a point where I am losing more sleep than I already was to begin with. Pain can also affect your libido, patience level, etc… We have now gotten to where we need to focus on herbs if possible, to help with my nerves since most medications for pain are not recommended for long periods of time while breastfeeding. If my pain gets worse or even more unmanageable then we will revisit and evaluate what we need to do as our next step.
For now, I am going to stick with breastfeeding because it is beneficial to my daughter. My daughters both do not respond very well to formula and I would have to special order one from out of the country, which my insurance will not cover. When I consider the cost, benefit and time (easier/quicker to breastfeed than prepare a bottle), I am keeping everything in mind and staying in contact with my doctor to make sure I am not sacrificing too much of my physical, mental, emotional, and spiritual health. My experience is going to be different from anyone else’s experience, and I am always a “fed is best” advocate. I will never advise someone to compromise their own health when their child needs their parents alive more than anything.
I have lived with Chronic Pain and Chronic Fatigue for over 30 years now…I recently turned 57. My illnesses include Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a spinal condition called D.I.S.H., Gastroparesis, Atypical Trigeminal Neuralgia, Diabetes Type 2 and Bipolar Disorder. Most of my illnesses are invisible. To look at me, you would probably think I’m a healthy woman, but in reality, I’m suffering every day, all day. I use a cane for mobility and often a walker, and when the distance is too far, I use a wheelchair. Despite that, I have been on the receiving end of some hurtful comments and I’d like to address them here.
1. “You don’t look THAT disabled – are you sure you need that cane/walker/wheelchair?”
Yes, I’ve actually been asked that. Now, it’s important that you understand I’m a great advocate for myself, and I don’t put up with nonsense like that. My reply was “exactly HOW disabled do I need to be to use these mobility aids?”. They, of course, had no answer for that. Please don’t make comments about our abilities or lack of them. I do what I need to do to keep my body moving. I’m the best judge of my condition and what I’ll benefit from, not you. Unless you’re walking in my shoes, please don’t judge me.
2. “Oh, I’m tired too, I know exactly how you feel.”
Ah, Chronic
Fatigue…how I hate you so. And unless you’ve been diagnosed with it, you have
no idea what ‘tired’ really is. Chronic Fatigue leaves you so debilitated that
you could sleep for 16 hours and still wake up exhausted. You have to rest
after having a shower or bath because you’re shaking so badly from the
exertion. Chronic Fatigue is like swimming in concrete, every movement takes
enormous amounts of energy and the simplest tasks like brushing your hair or
washing your hands take effort and concentration.
Don’t forget about things like working or raising kids when you have Chronic Fatigue…you feel like a lousy employee or an unfit parent when you suffer like this. Every task is a Herculean feat and there’s no way to win. Oh, and it’s every day and night too!
3. “Have you tried (fill in the blank)?”
I appreciate that people want to help, I really do. The thing is, I’m desperate to feel better, so I’ve tried everything that’s out there. Every drug, every therapy, every alternative option including CBD products, Essential Oils, Nutraceuticals… you name it, I’ve tried it.
When you make these suggestions to me, you make me feel like I’m not doing enough; and it diminishes the hard work that I HAVE been doing to get well. Again, I know people are trying to help, but just stop it. You’re not helping at all. If you really want to make a difference, ask your loved one or friend with a chronic Illness if there is any research you can do for them in regards to new treatments. That way, you’re not taking control of the person’s health, but you’re still offering to be helpful. And if we say ‘no thank you’, take that at face value and don’t surprise us later with a list of “things” that might help.
4. “Well, you don’t look that sick.”
This goes hand in hand with number one. First of all, how sick do I have to look to satisfy you? Do I need to have dark circles under my eyes, and have greasy hair? Wear sloppy clothes because I’m too ill to care for myself? I may be chronically ill, but I still take pride in my appearance, especially if I’m going to be in public. Sure, it takes effort, but to me, it’s worth it. Some makeup, a nice outfit…it doesn’t take much, but I want to look as good as I can because my illnesses already robs me of so much in my life. Why should I let them take away from my personal appearance as well? And no offense, but I’m not living my life to meet your standards anyway…I’m living life to meet MY standards, which haven’t changed from before I became ill.
5. “When are you going to get better? You’re always in poor health.”
Hmmm, let’s define the word “chronic” for you. It means ongoing, persistent, without end. As in, my Chronic Illness is never going to go away. I may have periods of remission where my body is cooperating and things are better than they have been, but that doesn’t mean the illness has gone away…it just means it’s in remission. At any point, things can change and I could find myself bed-bound. Again.
When you ask a person a question like this, it only serves to depress us. We’d love to get better and live a normal life again, but this is a life sentence that we’ve been handed; and there’s no parole. Please don’t say this to someone living with Chronic Illness…tell us instead that you hope things will improve for us or that you’re not giving up hope for better days ahead. That’s what we hope for too.
I know that people often don’t mean to be rude or ignorant, but sometimes the questions seem to be asked without people thinking first. Please remember that we have been living our lives like this for probably a long time, and we’ve heard it all before. Think before you speak and put yourself in our shoes before you ask a question. Would you want to answer it? If the answer is no, then don’t ask. Just tell us you’re thinking of us and sending good thoughts. We appreciate that the most.
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.
Living with a chronic illness of any kind can truly impact all aspects of one’s life and make many things difficult. Poor health can put a strain on everything from your job and work life, as well as the relationships that you hold most dear. Over the years I’ve found that one of the hardest parts of living with a chronic condition is keeping your relationships healthy. While this may seem odd to those who haven’t walked this path, sadly, it’s very much an issue.
Until you are sick, you don’t see how much a strain can be put on your relationships by a chronic illness. When you have to routinely cancel plans or spend long periods at home in bed, it can be incredibly hard for those in your life to understand. This especially occurs when you have an ‘invisible’ condition such as Lupus or Multiple Sclerosis.
There are many things that those who deal with some kind of chronic illness (myself included) wish our able-bodied counterparts could understand. In this article, we are going to look at 5 things we wish our friends and family understood about living with a chronic illness.
I DO NOT like cancelling plans
Contrary to many people’s beliefs, most of the time we don’t like cancelling plans. Sure, there are times when we just don’t want to do something or go anywhere, but that can be the case for anyone, NOT just those who are chronically ill. Most of the time we would much rather be out and about doing things and being around people than be stuck at home. But sadly, sometimes that is not an option and we have to cancel plans. It is often easier to assume the worse than it is to find out what is really going on. People can often draw their own conclusions instead of asking why people with chronic illness are doing things like cancelling plans. I have found that in order to help those around us understand what it’s like to live with a chronic condition, we have to be willing and ready to be open about our health. We also have to be willing to work with those closest to us to help them understand what it’s like on our side of the table.
My health does not define me
My health does not define me – While our health may impact almost every aspect of our life, it is not all that we are. For instance, I am not just Amber who has Lupus. I am so much more than that. I do have lupus, but my illness is not what solely defines me. I am Amber with Lupus, who is a daughter, a sister, a friend, a patient advocate, and so much more. So please remember we are so much more than our health and should never be defined by it.
Just because I look okay, does not mean I feel okay!
It is easy to put on a brave face and to cover how badly I feel with makeup, for a short time. Outwardly I may look put together, but what you wouldn’t know is that it took hours to get ready because I had to take a break every few minutes. Living with an invisible illness is tricky, people can never tell I feel based on my outward appearance. So I wish people would please just ask, instead of assuming.
Please don’t compare my illness or symptoms to another person’s
Just like no two people are the same, no two cases of a chronic illness are the same. You may know three people who all have Lupus, but more likely than not they don’t have the same issues. Please don’t compare me to anyone else you know with my condition. You would never compare two Americans just because they are American, so please don’t compare the chronically ill. Also, if you know someone who died from my condition, I don’t need to know!!!
Just because I felt good yesterday does not mean I will feel good today
Many people who are not chronically ill do not understand that in order to get out of the house, we have to scrape together energy and will likely pay for it tomorrow. Please don’t assume that just because I was out for a girl’s day yesterday that I will feel like going to brunch today. Chances are that if I really pushed myself yesterday, I will be paying for it today and quite possibly for several days to come. Please don’t assume that I am being untruthful when I say I am in bed today, just because you saw me when I was out yesterday.
Many people have a hard time understanding chronic illnesses since the majority of conditions that are chronic are invisible, meaning they can’t be seen by the naked eye. That alone can cause issues in relationships because one cannot see what the other is dealing with on a daily basis. The pain or the shortness of breath can’t be seen and therefore often can’t be understood. This is why it is imperative that we, as the chronically ill, provide education to those around us. It is imperative that we explain to those closest to us what a good day for us is as well as a bad day. If we never explain why we are always cancelling plans, people may eventually start to assume it’s due to something they are doing, rather than the fact that we just don’t feel like going out. It is also important that we let others help us remember, as noted in number two above, that we are not defined by our illness. While we want others to remember this, we also need to remember this for ourselves.
In closing, we can’t expect others to understand the things discussed above if we don’t ever tell them. If we never share our health with those around us, we can never expect people to fully understand. It’s important to try to ensure happy relationships with friends, which requires communication and understanding.
About the Author
Amber writes at theworldseesnormal.com. She is a Registered Nurse by but due to her illness she is no longer able to work outside the home. Although her years of medical background give her a different point of view on many topics. Her goal in life has become raising awareness for the issues those with chronic conditions face, as well as for the conditions themselves. She also wants to make sure that those suffering from a chronic illness know that they are not alone in their fight.
In November 2008 I found out I was expecting my first child, and both my husband and I were over the moon. Life was peachy… Until I started suffering from strange symptoms, which at first I put down to the pregnancy. Slowly but surely the symptoms worsened. I was dashing to the toilet over ten times each day, losing blood, and was in lots of pain around my stomach and back. I became terrified that something was wrong with my baby. I went to visit my GP, who quickly came to suspect that I may have Inflammatory Bowel Disease. The confirmatory tests could not be done due to me being pregnant, so I was given foam enemas to help the inflammation. I gave birth to a healthy baby boy, and could then finally be booked in for the Colonoscopy I needed in order to reach a diagnosis.
My Diagnosis
In late 2009 I was diagnosed with Proctitis, which is a form of Ulcerative Colitis affecting the lining of tissue of the inner rectum. I initially kept it under control with medication the doctor offered as the first port of call, and because my disease was mild at this point it worked. Naively I totally underestimated the severity of my disease, and I thought my medication had cured me. I often didn’t bother taking it and generally did not look after myself. I ate too much of the wrong things, drank too much and weighed a lot more than I should have.
Fast forward to 2015 and I became incredibly unwell. I was diagnosed with Pan Ulcerative Colitis which meant the disease was now throughout my entire large bowel and I was flaring terribly. I became housebound and was no longer able to work as a Forensic Science Lecturer, which is a job I adored and had worked so hard for; I had just achieved promotion. My consultant put me on a biological drug treatment called Humira, where I had to self-inject weekly at home.
After a while, it was clear the injections alone were not completely working. I felt a bit better but still not right. I was still not able to go out for long periods. After trying many different diets which didn’t work I decided to try to adopt a plant-based lifestyle. The combination of my new medication and ditching dairy and meat worked. I got my life back, I lost weight, and I could go out with my family again. I even dared to go on holiday. However, I had lost my job, a job I had spent effectively five years qualifying for and just having qualified with my masters, this was a huge blow.
A Fresh Start
I couldn’t see myself doing anything other than teaching, but I had to
try to remain positive. I clung on to the fact that not working meant I could
be there for my children during the school runs, the bath and story times, and
all the school plays and assemblies. I also had the exciting thought that I
could potentially do something for myself, something I had always dreamed of
doing but had never thought was possible.
I decided to go for it, and thought ‘what better way to earn a living than to work doing something I love?’ Clearly, I love food… (a little too much, but I’m working on it). So far I’ve lost four stone but still have two to go. I set up Glow, a meal delivery business, in January 2017. After a slight blip with my medication after it failed in October 2017, I seemed to settle on a new regime of eight weekly infusions with a drug called Vedolizumab that was administered at hospital. Again, I felt well, the combination of a plant-based diet and the vedolizumab made me feel great. I continued to drop the weight and found myself falling more and more in love with the vegan way of life! I have now switched all beauty products, cleaning products and clothes over to cruelty free brands and even my children decided to come on board in February 2018 and they became (mini) vegans too.
I was so happy with my new-found wellness and lifestyle, I should have known it was too good to be true… Once again, my medication failed! It also left me with horrendous joint pain which was later diagnosed as Inflammatory Arthritis, and also Erythema Nodosum, which is a painful condition where the fat cells under the skin become inflamed. This results in tender, red lumps, usually on the shins. In my case both my shins became terribly inflamed and painful. Once again I had had to face losing the career I had worked so hard for and had built up to a point I was very proud of, simply because I couldn’t stand for periods long enough to complete my cooking and I couldn’t leave the house to complete my deliveries.
A Fresh Start… Again
I became so poorly in December 2018 that I decided to cease trading with my meal delivery business, thinking I could start up again when I felt better and was settled on new medication, or having had surgery if it was necessary. These plans were not meant to be, in January 2019 my Dad who had suffered for many years from Parkinson’s and Vascular Dementia passed away. Despite him being poorly, his passing was still a huge shock as he had been physically well up until only a week or two before he was taken into hospital.
When such a life-changing event happens, it makes you re-evaluate your life and what is important. I thought a lot about what Dad would have thought about the situation, and I had found myself in and listened closely to the opinions of my close family members. I realised I had been continuing with my business far longer than I should have, simply to keep up appearances. I didn’t want to lose face and for people to think I’d failed. When Dad passed away I realised I could not give a damn what people think anymore! I needed to do what was right for me and my family. I knew I needed to create a career that works for me, one I could still run from home but could do sitting down, or even laying down if I needed to. But the question was, what?
I have always enjoyed reading and watching other people’s blogs, facebook pages, and inspirational talk videos and wondered if it was something I could try myself. I was lucky that I had made a friend in the chronic illness world who runs the wonderful blog A Balanced Belly, a blog all about Jenna’s life with Crohn’s Disease and how she helps her gut health through a gluten and dairy free diet. After chatting things through with Jenna I decided to give it a whirl, what did I have to lose?
I still needed to earn a small wage, so I started buying and selling clothes, again something I can do from home. I set up my little blog House of Herbivores, which is all about life as a mum to vegan children. I share plant-based recipes, review vegan products, and also chat all things Ulcerative Colitis too. My recipes prove really popular with vegans and non-vegans alike, as the meat-free food movement becomes ever more popular and families are incorporating more and more meat-free meals into their weekly menus. It’s very early days, but things seem to be going really well. I have had lovely feedback on my fledgling site and have had my writing published on other blogs. My aim is to be able to monetise my blog in the near future, but I am still very much in the early stages of my plans.
It has been quite the journey over the last ten years with Ulcerative Colitis. I count myself as incredibly, incredibly lucky. Yes, I have been diagnosed with a chronic illness, but that does not define me! Over the last ten years, I have also had two wonderful, intelligent and compassionate children. I qualified as a teacher and completed my masters (yes it nearly finished me off but that’s beside the point, and is a story for another day). We have moved into our forever family home and added a silly puppy dog into our family. I have made such happy memories with my family and friends, been on holidays I will never forget, and have made new friends thanks to Colitis and Veganism too.
I am constantly fighting for wellness and will never stop.
I am a mother, wife, daughter, sister, aunty and a friend. That is what defines me, and it is for those wonderful reasons that I will get through the challenges that inevitably lie ahead on this crazy journey that is chronic illness.
Always try to find the positive.
Emma is a freelance writer and cook who created the blog House of Herbivores – a vegan family blog. Emma was inspired to switch to a plant based lifestyle three years ago for health reasons as she suffers from Ulcerative Colitis, inflammation of the bowel. Emma shares her family favourite recipes, vegan product reviews, tips and tricks for the new vegan and insights into life as a vegan family.
With over 100 different forms, arthritis is not only common among Americans, but it affects people of all ages across the globe. It would be wrong to say that arthritis is a single disease – because it’s an umbrella term that stands for joint inflammation. In short, it stands for a group of joint conditions that affect one’s mobility by restricting the ability of their joints to function effectively.
Arthritis in Hands
A principal cause of disability in the US, arthritis is more common among people above 60.
According to the Arthritis Foundation, “Almost 300,000 babies and children have arthritis or a rheumatic condition.” It further says that “The most common type of arthritis is osteoarthritis, which affects an estimated 31 million Americans.“
And the worst part is, by 2040, over 78 million Americans are expected to suffer from this problem. So what’s essential for us to realize at the moment is the fact that when this condition affects someone, it not only creates a problem for them alone, but it also has a severe impact on their loved ones, friends, and colleagues.
When you have a loved one living with pain and discomfort, it affects more than just them. You may find yourself struggling to focus on your own job and the rest of the areas of life. The illness of your loved one affects your own mental state to a great extent because you are concerned about their health and well-being. And since you can’t always see them struggling with life, you tend to worry more from afar. Make sure you talk about your own concerns with a trusted friend or therapist if you feel you need a safe place to vent.
Here Are Some Common Forms Of Arthritis
Osteoarthritis
Stems from the overuse of joints with age, osteoarthritis is by far the most common form of arthritis. Also known as wear and tear arthritis, it’s a degenerative joint disease that worsens with age. People with this condition have cartilage damage, which leads to pain in the joint.
Cartilage is a thin, firm, and flexible connective tissue that safeguards the end of the bones in a joint by working between them as a cushion. It prevents the friction between bones; however, when it becomes damaged, it fails to fulfill its purpose, which eventually results in joint pain.
The factors that put you at the risk of osteoarthritis include age, genetics, obesity, joint injuries, and high-intensity physical activity. Some of these factors are beyond your control such as age; however, you can certainly avoid the risk that comes with obesity, joint injuries, and high-intensity workouts.
Rheumatoid Arthritis
A chronic autoimmune disease, rheumatoid arthritis is a condition that occurs when the immune system attacks the joints, which eventually results in inflammation and pain. If you fail to treat this condition, you will end up damaging your joints permanently. People with this condition get rheumatoid nodules – which are nothing but the lumps on the skin in areas that are subject to pressure like elbows and heels.
The immune system attacks the synovium – which is a thin layer of connective tissue surrounding the joints. And when it becomes damaged, it releases a chemical that affects bones, cartilage, tendons, and ligaments.
Risk factors for rheumatoid arthritis include smoking, genes, and hormonal effects. It is more common among females.
According to an NCBI study, “Rheumatoid arthritis (RA) is a chronic, autoimmune inflammatory disease with a female predominance, and is estimated to affect approximately 1% of the world’s population.“
Psoriatic Arthritis
Psoriatic arthritis is another common form of arthritis, and it mostly starts affecting people between 30-to-50 years of age.
It’s a disease that leads to red and patchy areas in the skin, and it affects both males and females equally.
You can divide different forms of arthritis into
Degenerative arthritis
Inflammatory arthritis
Metabolic arthritis
Infectious arthritis
Managing Arthritis Pain
Try Physical Therapy
The pain that results from arthritis can keep you from living a physically active life; therefore, it’s essential that you take the right type of treatment, which can improve your quality of life. People with arthritis, who fail to perform the activities of daily living with ease, don’t only struggle to gather that much-needed confidence but also have poor self-esteem.
Therefore, to live a happy, healthy, independent, and dignified life, it’s essential that you seek quality treatment. One of the best treatments for subsiding the pain that stems from arthritis is physical therapy. The reason it is considered one of the most effective ways of dealing with joint inflammation is, it doesn’t rely on surgeries and medications.
Yes, physical therapy is not only pain-free, but it’s also a drug-free and surgery-free treatment for managing arthritis pain and improving flexibility. It enhances the ability of your joints to function effectively.
A physical therapist uses a variety of techniques to minimize the pain that stems from injuries and chronic illnesses. For example, to relieve the pain that occurs due to injuries, they might use physical therapy techniques like Kinesio Taping, passive treatments to relax your body such as massage, heat and cold therapy, TENS (transcutaneous electrical nerve stimulation), and ultrasound.
However, when it comes to managing the pain that stems from arthritis, they generally use aquatic therapy, and there are several reasons behind that. It is a pain-relief technique during which a skilled physical therapist helps their patients perform effective exercises underwater.
Woman working out in the pool
Water Therapy
Water not only helps in performing the exercises smoothly but it also reduces the pressure on your joints. During the aquatic therapy sessions, your therapist will ask you to carry out only those moves that are healthy for you. It not only helps in minimizing the pain but also offers that much-needed relaxation.
According to Aquatic Therapy – a trusted wellness center in Atlanta, Georgia “Aquatic therapy is a viable option for treating arthritic joints. The water helps to provide compression, which reduces swelling. Apart from that, the buoyancy of the water unloads the joint, allowing for greater range of motion without the weight of the body compressing joints together.
However, before incorporating the exercises that you need to perform, your therapist will check your range of motion. For obtaining a deeper understanding of your health, they will also check your medical history.
Lose Weight
Overweight is the biggest problem for those struggling with arthritis pain. Since it puts enormous stress on your weight-bearing joints, it increases the intensity of the pain naturally. Yes, you got that right, when you perform physical activities, you feel severe pain on your weight-bearing joints such as hips, knees, and ankles because they have to struggle with your body weight.
Therefore, if you want to shed those extra pounds and improve your joint health, it’s essential for you to adopt a useful workout routine. Since you are already struggling with a joint disease, make sure that you consult a healthcare professional before starting your workout routine. Once they give the thumbs up, you can go ahead with it.
Also, make sure that you take the help of an experienced fitness trainer; otherwise, you might end up injuring your joints by performing the wrong moves.
Rely On Healthy Foods
Consuming healthy food is not only crucial for fighting arthritis pain, but it’s also significant in enhancing your overall well-being. Fish is highly vital for you to beat arthritis pain. Therefore, you should increase the intake of salmon, herring, tuna, and mackerel. They are rich in omega-3 fatty acids, which helps control inflammation.
Apart from increasing the consumption of fish, you should also include soybeans in your diet as they are a rich source of protein and fiber, which is very good for rheumatoid arthritis patients.
Try and increase your intake of healthy oils such as olive oil, sunflower oil, avocado oil, and walnut oil in your diet. Other healthy additions to your diet include broccoli, cherries, milk, yogurt, and green tea along with following a healthy eating plan. Limit sweets and focus more on fruits and veggies filling half your plate, along with proteins and carbs. Be wary of fad diets that make excessive promises – you may see some initial changes, but it’s hard to maintain these diets over the long run and weight gain usually comes back.
Last but not least, you should always try to maintain a positive attitude, enjoy warm baths with Epsom Salts, stay as active as possible, and get a good night’s sleep. These are all ways to help yourself stay as healthy as possible
A little back story, I was diagnosed with 3 chronic illnesses (rheumatoid arthritis, fibromyalgia, and lupus) when I was 17 and then after a car accident, they were in back to back flares and fighting which day they would “one-up” each other.
I tried to run off my husband by scaring him away by describing in detail the “horrors” of being a caretaker to me would be. He stuck it through with me and we got married August 8, 2014. Soon after, he had asked me to talk to my doctors about the possibility of getting pregnant. After making multiple appointments and talking with every doctor and specialist, we got the green light to actually try to get pregnant.
The start of my guilt of being a parent kicked in and never left.
I struggled with accepting that I could get pregnant after being told no for so many years. I wanted to try though since my husband was so excited. On February 14, 2015, we had our first miscarriage. The start of it as a telltale sign that it was going to happen was that my lupus flared up and I just could tell something wasn’t right.
The guilt set in fast and hard that my child didn’t survive because of my body, because of my chronically ill body. I spiraled into a depression where everything made me cry. Cat crossing the street, tears, a child laughing on the tv show, tears, husband made dinner like he did every night, tears. My lupus flare ended when I had a second miscarriage on November 18, 2015; the day before my husband’s birthday and the day I was going to surprise him with the news. I didn’t want to keep trying after that since my emotions and guilt just kept getting worse.
The summer of 2016, I was looking at puppies as a prospective service dog to replace my service dog since she was getting old. I picked up the puppy in September, and a few short weeks later I found out I was pregnant again. I was so afraid to tell my husband, let alone get excited for any check up because of being afraid. Fast forward to June 20, 2017, I had our adorable daughter, I will call “R”, at 10:16 am. My husband was ecstatic and I was reserved and quiet. I struggled with holding her and bonding because I felt guilty.
I felt guilty for a lot of things
1. R survived, but my body failed me twice and I couldn’t stop thinking about the two I lost and what they would have been like.
2. I kept thinking about how R’s life will be different because I, her mom, is disabled.
3. I couldn’t stop thinking about how much of a burden it was going to be on my husband because my chronic illnesses/disabilities are unpredictable.
4. Feeling like a failure as a mom already because I cannot be a normal parent.
It took about 6 weeks after R was born before I was willing to start trying to bond with her. I had the guilt from that because I knew that the early stages of bonding were beneficial. On top of that, I was returning to work towards the last week of August.
I struggled with every milestone she made, whether it was early or not, and then questioned whether it was because I was disabled that she would develop them early. I struggled when she started playing and growing up “too fast” in my mind because I knew that my chronic illnesses were causing me to miss some of what she was learning and growing.
A happy surprise!
I got pregnant with our second daughter around R’s first birthday, this one was a surprise to us, but we knew we would love her. During my pregnancy, I had the guilt of missing milestones for R because of me being extra tired and exhausted. It hurt to tell R over and over again that “mommy is struggling today and can’t hold you/play with you/read to you”. When I was getting closer to having our second daughter I cried over having to leave R with my dad while my husband, my mom, and I were in the hospital. I was taking away her playmate (my new service dog) and her regular babysitter (my mom).
My guilt was at an all-time high after I gave birth to our second daughter, February 14, 2019, I’ll call her “W”. I knew I was turning R’s world upside down and “forcing” her to have to learn what all was going on and have to share her precious mommy time with another one. Trying to split time evenly is hard, especially since my rheumatoid arthritis flared up right after I gave birth.
As I have been slowly recovering from giving birth, I have been slowly getting accustomed to two children, and having to learn to ask for help a lot more. This guilt will continue throughout my daughters growing up and I will have to cope with it.
I will need to breathe through their difficult questions as they grow up and realize just how different their mom is compared to their friend’s parents. I will also have to deal with the guilt that I am adding/putting more stress upon my husband with having to help raise our daughters and having to step into the caregiver role from time to time and more often as my chronic illnesses/disabilities progress.
I have realized that my guilt will come in waves and I will have to deal with them as they come. It is just like the stages of grieving that I have gone through and continue to go through as my chronic illnesses/disabilities progress. It is hard to reach out and talk to others about life, but I have learned to find someone to talk to that I can trust.
Now it’s time for me to spend a little time with W (only 12 days old) and pray that R (20 months old) doesn’t wake up calling me.
Adrian looked around the waiting room, noting that he was
easily the youngest person there. Most of the people sitting in the room were
easily a decade older than him, probably more, and that all of them were women.
This made him embarrassed. He knew that most people seeing a rheumatologist
were women and probably older, but seeing it in person was different.
Feeling uneasy while waiting
Adrian
tried to ignore his embarrassment by looking at the decorations on the wall,
which was all still life photographs. He had to suppress a snort, of course
that’s what was on the walls. Just like every doctors office, there has to be
boring, framed photos of nothing interesting.
“Adrian
Thompson,” the nurse called.
Standing up
slowly, Adrian followed the nurse to the exam room in the back. Even as he
followed her, he couldn’t keep up and had to walk significantly slower than her
because the pain in his joints was so bad. He immediately sat down in the lone
chair in the corner when he reached the room, ignoring the exam table.
“What
brings you in today?” the nurse asked.
“I’ve
been having pain and swelling in my joints, muscle pain, fatigue, and stiffness
when I wake up in the morning or if I move after I’ve stayed in the same
position for too long” Adrian replied.
She wrote
everything down, looked at him quizzically, and said the doctor would see him
soon. Adrian looked around the room after she left. He noted several arthritis
posters, a osteoporosis poster, and some three dimensional models of joints on
the counter.
The doctor
30 minutes
later, the rheumatologist, Dr. Erikson, entered the room. He read the notes
that the nurse had made and asked what brought him in. Adrian repeated exactly
the same thing he had said to the nurse.
“Hop
onto the exam table,” he said.
Adrian
flinched several times when Dr. Erikson pressed on points that hurt, then
ordered some blood tests and offered to prescribe him painkillers for the
intervening days until he saw him again.
“No,
thank you,” Adrian said, “I am an addict in recovery, I have 60 days
clean and sober today, and I don’t want to risk going back into active
addiction.”
“Good
for you getting sober,” Dr. Erikson said. And with that, he left the room,
telling Adrian to make another appointment in 30 days.
Second appointment
The
following 30 days were agonizingly painful and long. Adrian desperately wanted
to know what was wrong, because something was obviously wrong. The constant
pain was something he didn’t think he’d ever get used to, almost worse than the
pain was the fatigue that was making it hard to be a functional human being.
Adrian could barely remember what it felt like to wake up feeling rested.
Returning
to the doctor’s office, Adrian waited an hour just in the waiting room just to
wait another hour in the exam room. When Dr. Erikson finally, finally, showed
up, Adrian became hopeful that he might finally have an answer. He was
disappointed.
“All
your labs came back negative, there is nothing physically wrong with you,”
Dr. Erikson told him.
“So
what happens now?” asked Adrian.
“Here
is the business card of a good psychiatrist in the area. I’d recommend talking
to her and getting on the proper medication” the doctor told him.
Adrian was
so upset he couldn’t speak. Even a doctor, the best rheumatologist in a 50 mile
radius, thought he was making up the pain and various symptoms he was
experiencing. Adrian numbly walked out of the office and got into his car. When
he closed the car door, he finally broke down. He wasn’t crazy, was he? He
didn’t think so. But either way, he pulled out the psychiatrist’s card and made
an appointment.
Continuing the search for awnsers
Over the
next year, Adrian searched for an answer. He saw the psychiatrist, who referred
him to a therapist and a different rheumatologist, that rheumatologist referred
him to a different psychiatrist, who told him to see another rheumatologist. He
didn’t have anyone actually believe he was actually in pain until he finally
gave up on specialists and saw his general practitioner.
Adrian
told his general practitioner his symptoms, telling him about all the struggles
to find an answer, and he watched the doctor’s eyes light up. Adrian knew then
that he finally found a doctor who completely believed him, and he was
ecstatic.
“Here’s
an order for more blood tests and an order for getting your hands and feet
x-rayed,” Dr. Johnson said, handing Adrian the stated orders, “Come
back in two weeks and we’ll review the results.”
U.S. Army Spc. Juan Hernandez, Jr., McDonald Army Medical Center U.S. Army Medical Activity medical laboratory technician, draws a blood sample from a patient at Joint Base Langley-Eustis, Va., June 26, 2017. The JBLE lab technicians perform over a million tests annually and study the hematology, coagulation, chemistry and microbiology of the samples. (U.S. Air Force photo/Staff Sgt. Teresa J. Cleveland)
Adrian
immediately went to get his blood drawn, and two weeks later he was back at the
office, eagerly awaiting the results.
The results
“Adrian
Thompson,” the nurse called. Adrian got up and followed the nurse into the
exam room, and 20 minutes later Dr. Johnson came in.
He spent
five minutes looking at the results from Adrian’s tests, and then looked at
Adrian.
“I know
what’s wrong,” Dr. Johnson told Adrian.
“What?”
Adrian asked eager to finally have an answer.
“I
have two diagnoses for you. The first is about the joint pain. You have no
markers for it, but you have what’s called seronegative rheumatoid arthritis,
based on the high amount of inflammation and the damage to the joints in your
hands and feet. The second is related to the muscle pain, and there’s no
specific test for this, but I believe you also have fibromyalgia.”
Those were
exactly what Adrian thought he had from his research, but having confirmation
was both a relief and a weight on his shoulders.
“So
where do we go from here?” asked Adrian.
“I
will give you a copy of the results and write a diagnosis on a prescription
pad, and I’ll give you a card for a rheumatologist. He will know better on what
medications to put you on, but I’ll give you a couple of things to treat the
conditions while you wait to see the rheumatologist.”
Finally getting a diagnosis
Adrian
went home in a daze. As soon as he got home he called and made an appointment
with the recommended rheumatologist. With that done, Adrian got back into his
car and began the hour and a half drive to the beach, the place that always
seemed to calm him. Since it was still winter and he was in Washington, Adrian
made sure to take a heavy coat with him. He tried not to think much on the
drive, and to appreciate the beauty of the forest around him.
When he
reached the beach, he put on the coat and began to walk along to beach right on
the edge where the forest ended and the beach began. The beauty of the place,
with the rock cliffs in the middle of the ocean that somehow had trees on top
the constant green of the forest, and the drift wood that had washed up on
shore. This place always brought Adrian a sense of calm. Adrian got to be alone
with his thoughts since it was nearly deserted because it was no longer tourist
season.
As Adrian walked, he thought about how much his life would
change because of the two diagnoses he was just given. He didn’t know if he
would be able to continue to work at his goals, if he would be able to work as
a nurse like he was studying for. He didn’t know if he could continue to live
in this beautiful area, because the weather always hurt his joints. But most of
all, Adrian thought about how scared he was about the future. He knew what
advanced rheumatoid arthritis could do to joints. He had seen the pictures online. Adrian even
let out a couple tears as rain began to fall, counting on the rain to hide his
tears from anyone who might look at him.
Adrian
knew his life was about to change, and as he got back into his car to begin his
drive home, he tried to just be grateful to finally have an answer after over a
year of searching and allow the future to turn out however it’s meant to.
Chris Thoman is a 23 years old, college student, and lives with several chronic illnesses. He loves meeting and talking to new people, especially those who struggle with similar things as him. Follow him on Instagram
When the editors at The Unchargeables asked for someone to do an article on pain for Pain Awareness Month, which is recognized during the month of September, I jumped at the chance. Pain is something I am a living expert on and I thought I’d have no trouble at all writing an article all about it. Then, somewhat ironically, a flare up of my Rheumatoid Arthritis (RA) set in and the very thing I was supposed to be writing about caused huge writer’s block and left me too exhausted to put fingers to keys.
“Show People What It’s Really Like”
The past three weeks I’ve been so unwell that I’ve barely left the house, which means nothing very exciting has happened. This stumped me because while I wanted the article I wrote on pain to be informative and raise awareness, I had also hoped to keep it relatively positive. In my writing about life with chronic illness, I aim to instill hope and keep a positive focus; so being stuck in bed, not feeling very positive and with not a lot to say, I wondered what on earth I should write about. I spoke to my brother about this frustration and I had to laugh when he responded with, “Rachel, it’s ‘Pain Awareness Month’, not ‘talk crap’ month. Show people what it’s really like”.
He was right; this month is to raise awareness. Anyone already living with a chronic illness likely knows what living with pain is like. The purpose of this month is to show people who don’t know what it is really like and raise awareness by doing so. The purpose of this month isn’t to say, “Life is hard with pain, but it’s all sunshine and roses really.” That just isn’t true. So, as I write this from bed, with splints on both wrists, dosed up on painkillers, trying not to be infuriated that every position I sit in is so uncomfortable I wish someone would just knock me out, I’m going to share with you what my life can be like behind the doors I normally choose to close.
Trying to Be Positive About Pain
I’m a pretty positive person; I refuse to believe life is bad just because I got ill. I try not to let my illness stop me from being me and doing the things I love with the people I love. You’re more likely to see photos of me on social media out having fun than curled up in bed.
The thing is, I do spend a lot of time unable to do things I love. In fact, I even spend a lot of time unable to do things I don’t love like housework, washing and food shopping. One fun thing, or even one stupid day-to-day task can leave me bed bound. Pain and fatigue go hand in hand and being in pain all the time is absolutely exhausting. When pain takes over I hide from the world, not because I’m ashamed, but because who is interested in seeing or hearing about that? The reality is, people would probably be a lot more understanding if they did see and hear about that side of it. Being super positive all the time is not a bad thing, but when raising awareness, we have to share what living with pain is really like, not some Instagram-filtered version of it.
Imagine Living with Pain Every Single Day
I live with pain every single day. That is hard to comprehend unless you do, too. Before RA I couldn’t ever have imagined what this was like. Take a second and just imagine how your life would be impacted if you were in pain every single day, constantly.
There is no cure. You now have to live with pain all the time and you have to continue to function and live your life. Some days you may have pain levels of two or three out of ten on the pain scale; some days you will have pain that is a ten. Those are the days you will scream, cry and desperately long for something to make it stop.
The other days of moderate pain you must function as usual. Imagine how that would have changed the day you had today? Would you have showered? Would you have applied makeup? Would you have gone to work or called in sick? Would you have cooked tea? Tidied or cleaned the house? Picked the kids up from school? Done the shopping? People living with chronic pain must keep going and have to do all these things. Imagine how exhausting and difficult that would be.
Now imagine the ten out of ten pain days. How would you feel if you were unable to get dressed or clean your teeth? How would you feel if you couldn’t get out of bed or leave your house? Would you want to eat? Or would you want to curl up and sleep? You’ll be exhausted, but on days like this you will not be able to sleep. You will be in too much pain to stand a chance of sleep; welcome to painsomnia.
Now imagine a few months go by of this daily pain. How tidy and clean is your house? How many sick days have you had? How many social events have you missed? How many times have you eaten takeaway instead of a cooked meal? How many days have you managed to shower or get dressed? How many people have grown frustrated with you? How many friends have stopped calling to check on you? How many times has someone questioned if it’s really that bad or asked if you’re “better” yet? You can’t get better, there is no cure. How do you feel about the future now? How do you feel about facing a life of pain knowing how much it’s already changed your life in a few short months?
The Reality of Living with Pain
This is the reality of living with pain, and it isn’t pretty. The last three weeks I have managed to shower an average of every three days. I used to shower daily. I’ve worn makeup twice. I used to wear it daily. I’ve had to choose between preparing lunch or walking the dog, unable to do both. I’ve had to choose between brushing my teeth or brushing my hair, between changing the bed or changing my pyjamas. I’ve had to sit down to shower, I’ve had to lie down on the sofa after simply walking down the stairs, I’ve had to take a nap between getting dressed and getting a coffee.
The two days I managed to get dressed and apply makeup, to anyone else I looked perfectly normal. This is part of the problem, and this is why awareness matters. You cannot see pain, but people living with it need your understanding and compassion.
When Pain Causes Judgement
I recently went shopping with a good friend, who pushed me in my wheelchair because getting ready to go out had left me too exhausted and in pain to walk. While waiting for her to arrive at the shops a man walked past my car, parked in a disabled spot and glared at me. He literally glared at me the entire time he walked around my car. It was obvious he wasn’t sure I should be in that spot, even with my badge on display…and a wheelchair in the boot.
Makeup hides a lot, but it didn’t hide the tears that came from his judgement. Every day people living with pain encounter judgement and discrimination and that isn’t okay. You cannot see if someone has a disability or chronic illness by simply looking at them; they aren’t always visible. A comment of judgement, or even frustration, from someone who doesn’t know what it’s like to live with chronic pain can do so much damage. We need to be a little kinder to each other and show compassion.
Adapt and Try to Be Positive
The thing about pain is that you can manage it, but even with the best medicine, treatments and therapies in the world, there isn’t a cure for most chronic illnesses or the pain that accompanies them. You learn to adapt and live with it, and you don’t let it stop you living the best life you possibly can, but it does change your life. I refuse to be beaten by it and I refuse to dwell in the darkness that clouds me on the worst days. I have moments where I’m overtaken by negative thoughts and a sense of hopelessness, but I have learned how to pull myself out of that. I remain positive and focus on the good in each day, even if the good is that I simply survived that day.
However, being positive doesn’t mean reality should be hidden and to raise awareness we have to get real. You can share the reality of pain without letting a negative attitude consume you. I encourage you to speak to people about what it’s like to live with pain, and be real with them, whilst also keeping a positive attitude. Hopefully it will start some really important conversations and make for a future where people are a little kinder to each other.
Reach Out
If you know someone who lives with pain, I encourage you to ask them about it; you may open a door for them to be honest with someone for the first time. Sharing helps, and it certainly alleviates the loneliness that can often come with a chronic illness.
If you are living with pain, then please know you are an absolute warrior, a champion and you are so much stronger than you realise. Don’t be afraid to share your story and don’t be afraid to admit when things are rough. You deserve support, love and compassion. I know some days it can feel hopeless, and I know some days it can feel like you’ve lost everything, but please know you aren’t alone and everything you are is more than enough. If anyone tells you otherwise, it is their issue, not yours. Keep going, keep fighting and keep shining a light during Pain Awareness Month, and beyond.
About the Author:
Rachel is a 29-year-old Chronic Illness blogger at whatapain.co.uk, living in the North of England. She was diagnosed with Rheumatoid Arthritis in 2015. Passionate about challenging stereotypes and disability discrimination, she is married to an awesome bearded bloke and owner of a super weird rescue dog called Blue.
He was right; this month is to raise awareness. Anyone already living with a chronic illness likely knows what 
Now imagine the ten out of ten pain days. How would you feel if you were unable to get dressed or clean your teeth? How would you feel if you couldn’t get out of bed or leave your house? Would you want to eat? Or would you want to curl up and sleep? You’ll be exhausted, but on days like this you will not be able to sleep. You will be in too much pain to stand a chance of sleep; welcome to painsomnia.
The two days I managed to get dressed and apply makeup, to anyone else I looked perfectly normal. This is part of the problem, and this is why awareness matters. You cannot see pain, but people living with it need your understanding and compassion.
If you know someone who lives with pain, I encourage you to ask them about it; you may open a door for them to be honest with someone for the first time. Sharing helps, and it certainly alleviates the 
Rachel is a 29-year-old Chronic Illness blogger at