The Keeping It Real With Arthritis stories are back and better than ever. For the first time, we hear from both men and women. These fifteen stories are a must-read if you or anyone you know happens to be diagnosed with any of the one-hundred types of arthritis out there. These riveting, powerful, and encouraging stories will help those feeling alone and hopeless, to become empowered and hopeful for positive changes in life.

SURUTHI

Hi everyone! My name is Suruthi, I’m 22 and recently graduated with a Master’s in Chemistry! I’ve had JIA since I was 3 but didn’t really understand my condition until I was older. I sort of had to though, so I could explain it to others when they would tell me I’m “too young to have arthritis” or that it was “a grandma condition.” As I kept getting these comments, including some a lot crueler than the ones mentioned, I wondered if I was alone.

Starting my Instagram page allowed me to connect with so many other beautiful people with chronic illnesses and feel heard and seen. I hope to raise awareness with my posts so that the future is kinder to those of us with a chronic illness.

 JODIE SHEA

At the age of 17, I thought I was invincible. The idea of chronic illness was not anywhere to be seen in my simple teenage brain. I was a freshman in college, I was the definition of untouchable. Considering we used to drink $10 vodka out of plastic handles and lived to tell the story, I would say we were all pretty much immortal. Little did I know, life had other plans for me and my joints.

It started by me waking up one day not able to raise my arms over my head. From there it progressed to me not being able to walk and having to use a wheelchair, down to 79 pounds, and completely bedridden. I went from a 17-year-old lifelong athlete, to unable to function independently. I was in so much pain. When you are in pain like that, it is impossible to discern where the pain is coming from. Pain was radiating through my entire body, a deep throbbing pain, that made functioning impossible. I was finally diagnosed with rheumatoid
arthritis.

Being diagnosed was a terrifying experience. The doctors told me I would need to start on chemotherapy and immunosuppressant drugs immediately, and forever. The drug the doctor mentioned, I had heard about on those terrible TV commercials. You know the one with the middle aged woman unable to play tennis at her, I’m assuming, very expensive country club anymore. The commercial obviously stuck with me, not because of the woman’s poor backhand but because the end of the commercial just lists all the terrible things that can happen to you, if you take that medication: MS, heart attack, stroke, cancer, DEATH. So casual, thanks doc. I also had no idea, someone, my age could get arthritis.

I continued in college, with less than $10 vodka. By some miracle, I graduated on time. Looking back, I have no idea how I did it. My college years were filled with a lot of happy memories but also really traumatic memories: multiple self-injections a week of chemotherapy medications and immunosuppressant medications, so many pills, missing out on social activities because I couldn’t get out of bed, bleeding out of my eyes/ears/mouth during class and onto a sorority girl’s notebook, vomiting nonstop. I mean it was a party 24/7.

Having an autoimmune disease is hard, there is no way to sugarcoat it. Chronic illness impacts every facet of your life outside of your physical health: your mental health, spiritual health, financial health, social life, EVERYTHING is touched by you having this lifelong incurable disease.

I found I was still struggling to find people close to my age to talk to about the struggles of living with chronic disease. When I heard my doctor’s office was starting a support group for RA patients, I signed up as fast as my deformed fingers could. I was disappointed when I arrived, the “refreshments” were prune juice and bran muffins and the topic of the session was, “disappointment when you are unable to play with your grandkids.” I bolted (well, limped) out of there as fast as I could.

I am now 26 and a full-time adult with a big girl job, which my doctors told me I would never see. I started @Jodies_Joints to connect with other people who are living with chronic diseases and their loved ones. I also like to share some accomplishments that I never thought would be possible for someone like me. I can exercise now on my terms, how I want. That has been a huge win for me, I love hearing about others’ wins, as well.

When I look back to when I was 17 and struggling so much, I always felt like I wanted someone who was like me: young and very sick. Someone I could look up at, and think “okay, I got this.” I hope to be that person for someone.

Please connect with me on social media, it’s my favorite way to interact with other people! I am looking forward to chatting with new people!

JOEL NELSON

Hi, my name is Joel Nelson (aka ‘Joel vs Arthritis’), and I have had some form of arthritis most of my life. I was diagnosed with juvenile idiopathic arthritis (JIA) around 12 years of age, although symptoms presented much earlier. Today, it is commonly referred to as psoriatic-associated JIA as I developed psoriatic arthritis in my 20’s. My doctors anticipate that my arthritis will continue to evolve until my mid-40’s.

I live in Norwich, the UK with my young family and Dylan, my son, who is the real star of this show!

I campaign for arthritis, autoimmune, and chronic illness awareness. Working with charities and independently, freelance writing in magazines, on https://joelvsarthritis.co.uk and organizations such as Health Union in the US. I specialize in pain, parenting, and the mental health aspects of life with chronic illness but think I advocate for many more areas.

Alongside my writing, I host a podcast, am a guest speaker on others, and regularly participate in national radio and television interviews, awareness campaigns and help as a ‘patient voice’ for research and feedback with Versus Arthritis, the Psoriasis Association, and many others. I also run a private Facebook Support Group (search ‘Joel vs Arthritis’ to find us).

Finally, I promote positive living with arthritis but don’t shy away from talking about the uncomfortable side. I rarely use filters in my photos and am my greatest critic – I show real life with chronic illness, not my, “best life’.

You can read more about my work and find details of how we could work together on my website: https://joelvsarthritis.co.uk. You can also find me on social media, where I am @joelvsarthritis everywhere.

MEAGHAN

Hi! I’m Meaghan. I was diagnosed with juvenile arthritis at age 2, I received treatment for a number of years until reaching remission around age 10. Fast forward about 9 years. I was a freshman in college and started to experience knee pain. I blamed it on walking around campus or living on the 4th floor of a walk-up but little did I know my arthritis was starting to slowly relapse. And because I had been in remission for almost 10 years I didn’t really think too much into it. I popped Advil like it was my job until summer break when I went to see a rheumatologist. My appointment was short- he had sent me for bloodwork in advance. I got to the appointment and he was completely dismissive, said all of my bloodwork was “fine” and I “seemed fine”. I mentioned my own history of juvenile arthritis. He said I had no markers for rheumatoid arthritis and my pain was probably just tendonitis so I should just exercise less intensely. I was so defeated and confused. It was at this point I genuinely started to think I was just making this up or had an embarrassingly low pain tolerance. Who knows but I was told I wasn’t sick so I tried to believe it.

I carried on with moderate joint pain taking lots of Advil, doing lots of physical therapy until I was 24 when I had an intense full body flare. I couldn’t walk, eat. I should have gone to the hospital but was too stubborn. The rheum I saw then said I had some inflammatory markers in my blood but no rheumatoid factor so she didn’t have a “clear diagnosis”. This rheumatologist didn’t explore any family history, didn’t do a very thorough exam. I was so lost and overwhelmed. I stopped all meds and went on a strict anti-inflammatory diet. I convinced myself that something I was doing must have been causing the pain. I wanted to find the answers myself that I wasn’t getting from doctors.

It wasn’t until I suffered another massive flare that I was finally diagnosed with psoriatic arthritis. Finally, a rheumatologist took time to go over my family history, fully listened to all of my symptoms and concerns. I felt heard for the first time. I had actually come to the appointment with photos of my swollen joints, she looked at me, seeming disappointed in her field, and said it’s ok. I believe you. You don’t have to prove anything. This is the difference between a good doctor or not. Never stop searching for someone you connect with and feel heard by. Do not let someone silence your pain! Advocate until you get what you need.

ANALISA

Hi all, my name Analisa. I’m 38 years young, born & raised in NY; however, currently residing in TX. In my previous life, I was a pharmacy tech who helped rheumatoid arthritis & multiple sclerosis patients obtain their medications and obtain financial assistance through either the manufacturer or through copay assistance programs. I really enjoyed lending an ear and help people out in their time of need. Throughout, I remember listening to my patients complain about their pains, always thinking how I felt those same pains or had those same symptoms but I felt how could I possibly feel their pain? Was it just sympathy pains? How could I even compare?

I had been sick for many years but, no one could tell me what was wrong. The daily pains, the aches, the inability some days to get out of bed. My moods of hopelessness not knowing why I no longer felt like myself. I truly believed that I may have been overreacting or perhaps, making myself sick. I literally woke up one day and could not move and was completely swollen. My wrists and fingers were twice the sizes! It was so scary! I immediately went to see a doctor and was then referred to a rheumatologist. Finally, about 7 years ago, I came across a caring doctor, who diagnosed me with rheumatoid arthritis. I was devastated by this diagnosis but I finally had an answer to my age-old question. I am also unofficially diagnosed with Ehlers-danlos syndrome and postural orthostatic tachycardia syndrome. I have to follow up with my cardiologist for more tests.

Flash forward to now, I’m able to live a relatively “normal” life. I’m currently on Humira and am happy to say I’m doing well. It isn’t just medicine, it’s my outlook on daily life. Once upon a time, I stayed in bed all day feeling sorry for myself but now I try my best to get up and enjoy every day. I began to only think of the positive and leave the negative behind. “Every day may not be good, but there is something good in every day!”. This change helped me and all the people around me who were focusing on the negative. These are the cards I have been dealt and I’m playing to win! Focusing on the positive and all the good I have! I’m glad to have found such a supportive community within Instagram.

IG: theanalisamarie 

 

 

AMELIA

Hey everybody! My name is Amelia and I’m 18 years old from London, England.

I was diagnosed with rheumatoid arthritis two weeks before my 18th birthday, after years of pain and fatigue. It was a time of huge relief and also so so terrifying. I was told I had a few conditions in the years before diagnosis but this was only half of the problem.

I started my Instagram page @ra_my_journey shortly after diagnosis to find people like me and share my journey with others! The years I went undiagnosed affected me greatly, both mentally and physically. Having my page now gives me hope for the future, and allows me to share my advice I’ve learned along the way.

Experiencing my undiagnosed chronic pain throughout the school has shaped me into the person I am today. Now six months on from my diagnosis, trying to get my symptoms under control remains a challenge. I am learning each day to work with my body and taking gratitude from the small wins!

GEMMA

Hi, my name is Gemma and I was diagnosed with rheumatoid arthritis in 2013 when I was 19 years old. I missed hours of school and lost many friends as my health deteriorated. Once diagnosed and on medication, I started university where I studied early childhood studies and early years teaching. Now I’m a full-time early years teacher, although currently shielding due to the covid-19 pandemic.

I started my page @rheumatoiddiaries in 2019 to document my journey with arthritis. I didn’t think anyone would be interested in reading about my journey and I am continuously blown away by the support in the chronic illness community, and the comfort I find in connecting with people who understand how it feels to live with a chronic illness.

I take a holistic approach to managing my arthritis with medication, exercise, and amending my diet which I document on my page. I keep it real, showing the good, the bad, and everything in between.

KATY

Hello Everyone, I’m Katy, I was diagnosed with rheumatoid arthritis, 9.5 years ago with 12 months of going back and forth with my general practitioner. Being 28, I felt too young to be diagnosed with this ‘old person disease’. Little did I know of how common it is for people of any age. I’ve lived a very active life, taking dance classes from 2 years old, playing tennis from 7, and participating throughout school and university team sports.

My biggest fears at diagnosis whilst struggling to walk and dress were:

  • Will I still be able to work?
  • Will I be able to stay active?
  • Will I be able to have Children?
  • Will I lose my boyfriend and friends through not being fun?

I have been grieving the life I thought I wanted for a lot of the last 9 years, and when we went into lockdown back in March 2020, I started to realize and appreciate what I have:

  • I work full time
  • I still play netball
  • I am a wife (my husband has stood by me since my first symptoms)
  • I am a Mum to one amazing toddler (amazing most of the time)
  • I ran 2 marathons within 2 years of my diagnosis and I still run to maintain my well being
  • I performed in London 2012 opening ceremony
  • I am an active volunteer for @nras_uk

This drove me to launch my Instagram account @joint.adventure to give newly diagnosed people some hope that a life with RA and other chronic illnesses, can be far better than you ever imagined. I am incredibly proud to be part of this community and I will no longer hide my disease whilst it is tough. it is hugely rewarding and empowering.

HEATHER

My name is Heather, I have a wonderful supportive husband and 2 cats that I love to death. I’m 32 years old and was born with rheumatoid arthritis. I was diagnosed at 18 months old. I’m currently taking Humira for rheumatoid arthritis, and I’m doing so good on it! In 2020 my lab work came back completely normal for the first time in my life! Humira has really given me my life back. Right now I work for McDonald’s but I plan on getting schooling done to be a veterinarian assistant, it’s my dream job. In my spare time, I also advocate for people like me. If I can help one person get through their day and help give others a voice, I know I’m doing something right.

RENE

Hi everybody, my name is René. In the early ’90s, I was diagnosed with ankylosing spondylitis. My hips started to get damaged and my spine started to fuse. When I was 17, I was forced to quit my education due to the disease. At age 24, my hips were damaged to the point that I couldn’t walk and I needed 2 hip replacements. A whole year passed before I could walk again. Five years later, one of my hips got infected and needed to be removed. I had to live without a right hip joint for 3 months. My body needed to be completely infection-free before I could receive a new prosthetic. Another year that I wasn’t able to walk.

This all took a toll on my mental health to the point that I was done with life. Fortunately, 3 years ago that all changed. A friend got me into sports and a healthier diet. A great start but mentally I still had to change an old program. I stopped watching the news and started to brainwash myself with positive messages. I started to talk to myself that my life and health will get better. I programmed a whole new story into my subconscious this way.

My health did get better and I needed fewer and fewer medications. It got better to the point that after 20 years of not being able to run, I got to complete a half marathon last year. And I plan to run a marathon this year. If you are interested to follow my journey you can follow me on @motivmax

Thank you for taking the time to read and have a beautiful day.

CHRISTY WILLIAMS

Hi! My name is Christy Williams, aka “Coach Christy” as I’m known to the clients and athletes, I have the privilege to work with as a Certified Health Coach. I specialize in working with others like myself who are living with a chronic health condition and are fighting hard for the quality of life they imagined before their diagnosis. I live in colorful Colorado with my husband; we have two college-age “kids” and a beautiful fur baby pup by the name of Meela. I’m hoping that my health story will resonate with you or someone you know in a helpful and supportive way.

My journey with my diagnosis began at the young age of 24, after the birth of our first daughter (I am now 48). As a very active and healthy young adult, I was very perplexed by the myriad of complex symptoms I started experiencing almost over-night. It initially began with a swollen and tender left knee. As a lifelong athlete, I just shrugged this off as just a niggle springing up from my daily runs. Unfortunately, the swelling and pain did not resolve and began migrating around my body. I liken this to feeling like a “pinball” machine, jumping from one knee to the other, to one wrist to the other, and so forth, through all the joints in my body. It was when I could hardly move my jaw joint to eat one day, that I knew something was not right. Other symptoms included extreme fatigue (similar to how you feel when fighting the flu or other major virus) and a low-grade fever.

This led to a plethora of doctor appts; first to a family physician and a general internist. As is not uncommon, my blood work presented fairly normal, and being in my early twenties I was in generally good health. However, my joint swelling in my knees and spine was physically obvious with little range of motion and hot to the touch. This journey to finally landing in a rheumatologist’s office with a proper diagnosis took two full years! This is a common characteristic of the journey associated with these autoimmune diseases, and reason alone to spread the word and share our stories. If others are having similar experiences physically with not a lot of answers, hopefully, our stories can be discovered more frequently to short-cut the process of getting to health and wellness again.

My primary and most important message to share is that the most important and sought-after goal for those of us living with one of 100 different types of autoimmune disease (Lupus, Rheumatoid Arthritis, etc.), is gaining as HIGH of a percentage of remission that we can! I can’t stress enough how individual this journey is. Everyone’s disease process and severity are different, how one responds to medicine, nutrition and exercise is unique and different. What works for one, may not work for another. It’s tricky work! I aim to spread the message that these diseases are no joke. They are the #1 cause of disability in our country and should be respected and treated as such. I wish to erase stigmas surrounding those of us that live with these sometimes “invisible” diseases. I also aim to encourage support and encouragement inside our circles with those of us trying to solve these complex puzzles, that are our own health journey. There should be no judgment towards anyone’s successful journey to remission, however, they achieve this.

I am very fortunate and thankful to have finally found a high level of remission for the past 15 years using Remicade (a biologic) and sound nutrition (anti-inflammatory). These two pathways to remission then enabled me to very slowly resume an active lifestyle, which I used to rehabilitate my body. At rock bottom, I was visiting The Mayo Clinic in a wheelchair, but this journey culminated in realizing a lifelong DREAM of becoming an Ironman triathlete…twice. I really only wished for one major thing when I was at my worst point during the dark years before remission, to be able to raise my children as active a mom as possible. I am forever grateful for the combined efforts of medicine, nutrition, information, education, and support. It is my hope to offer this support and encouragement to anyone I cross paths with living with these conditions. We can do hard things. Blessing to all!

Thank you for allowing me to share!

Instagram: @coachchristy10

STEFANIE

I do not know any other life than one living with juvenile idiopathic arthritis. I was diagnosed with polyarticular juvenile idiopathic arthritis, at 13 months old.  My right wrist was the first joint to be swollen, and then it progressed to my knees and elbows. My childhood was different than most; filled with weekly therapy appointments, doctor appointments, and surgeries. I developed uveitis which led to two cataract surgeries, as well as glaucoma surgeries when I was in college. Despite this, my childhood inspired me to pursue a career in pediatric occupational therapy in college.

Throughout my childhood, I was active in advocating and fundraising for the Arthritis Foundation. After college, I got married and began thinking about starting a family. This is when I started to feel lost and desperate for community. I was ‘All Grown Up with JIA,’ now what? What happens when that group of children who have lived with JIA their whole life grew up?

So, I started my blog to chronicle my journey to become a parent. It was a longer journey than I anticipated, including IVF, and 2 miscarriages but fortunately ended in two healthy boys. Now as a working mom of two toddlers, I am just trying to figure out how to be ‘All Grown Up with JIA,’ and I hope you will join me on the journey!

ANANTHI

Hi Everyone. I’m Ananthi. I’m 34 and I’m a Biologist. I have rheumatoid arthritis, and new-ish to the condition as I got officially diagnosed in June 2020. My diagnosis and start of treatment would have been otherwise straightforward if it wasn’t for Covid.

My clinical presentation (as the docs call it) was “typical” for RA; very symmetrical (and very painful) flares in joints. I’m also seropositive meaning a blood test showed an elevated rheumatoid factor, so it was obvious what the diagnosis was. I was referred to the specialist at the hospital in March, but the pandemic hit hard and my appointment was postponed with no indication of when it was going to be rescheduled.

I was left to my own devices in severe pain. The next couple of months were both physically and mentally challenging. It was during this time I started my Instagram account @ar_versus_ra.  The wonderful Instagram community educated me, offered support, and made me feel less alone whilst I was in indescribable pain.

The pain was on another level, I couldn’t do the simplest of tasks e.g., getting toothpaste out of the tube, getting dressed, combing hair. As a result, I was battling with myself wondering if this was going to be my new normal. I had no control over the pain. However, I realized I could control my mindset, so I worked hard on this. I managed to pull together a can-do attitude, which I believe really helped me through the months whilst I was waiting for my appointment. I eventually got seen at the end of June and was put on 15mg methotrexate, and a short course of steroids to take whilst methotrexate kicked in. I’ve recently had to lower my methotrexate dose as it was affecting my liver, and now I’m having the internal battle of whether I should or need to increase the dose or not.

The chronic illness community has been a godsend to me over the past year, and I’m so grateful to everyone. I hope to support others, as others have supported me.

 

 

JAMES

What’s going on people, my name is James and I’m 26 from South London and live with rheumatoid arthritis and ankylosing spondylitis. I’m also a man, which may come as a surprise, as looking around the community we seem to be a rare commodity. The only positive thing I can say about arthritis is that it doesn’t discriminate on who it affects, so it is a surprise that the men are so silent.

I hope by sharing my story, I can help break some of the stigmas and encourage other guys to speak out about their condition. Arthritis is a condition that affects our minds just as much as it affects our joints, so I’ve been dedicating my time during this lockdown (aside from growing a horrendous beard), trying to raise awareness for young people living with arthritis. Also, I’m trying to spread a bit of positivity and questionable banter while I do so. The online chronic illness community is amazing and I’m so grateful to all you warriors out there that have helped me on my journey and given me the confidence to accept my condition and the strength to fight this chronic battle.

If you wanna come to join me on my journey and can handle a bit of swearing, follow me up on @jameshollens – I’m not as scary as I look promise.

JON

Hi, I’m Jon, I have “suffered” with RA for nearly 20 years now (I’m a young, 38-year-old).

When you have had the pain and the fatigue as long as I have, you tend to just battle on, and if anything it makes me a far stronger person than even I know. This is the point that I try and stress to others with similar ailments, but it took me a long time to accept this myself.

I live by the sea in a town called Weston super Mare in South West England, I have 4 kids (2 of my own and 2 stepchildren), and work full time as a sales manager for a housing society, so as you can tell my life is pretty busy.

I have never let my RA beat me, it has never been the cause of a “day off sick” but that doesn’t mean I don’t suffer, for me, this is the part others find the hardest to understand.

The comments of, “oh your too young to have that” or “have you tried taking  _______ *insert random plant name* it worked wonders for my mate’s dog,” are very commonplace but also very easy to ignore.

Over the last couple of years I have taken up the gym as a hobby, and the mental and physical benefits it brings me are huge (I just need to stop binging on chocolate now).

I’m always happy to answer questions on RA or help where I can, don’t be scared of it. We are not normal, normal is boring anyway.

If you enjoyed reading these stories, please consider sharing them with those whom you feel could benefit and to help raise awareness for arthritis of all kinds.

Do you have an arthritis story you want to share? Any insights, tips, or words of encouragement you would like to pass on to others out there going through similar situations?

If so, you’re in the right place. Message me over on my Instagram or Twitter @risingabovera 

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