Finding The Good In Life – Stacey’s Spoonie Story.

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.

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.

August 5, 2019July 31, 2019

Breastfeeding and Chronic Illness (My Personal Experience)

My Experience Breastfeeding with Chronic Illness

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 20^th 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.

The Exhaustion of Adjusting to Breastfeeding with Chronic Illness

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.

March 30, 2019March 10, 2019

Expert Advice on Battling Arthritis Pain

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.

Expert advice in battling arthritis pain — 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.

Aquatherapy for arthritis pain relief — 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

March 25, 2019June 21, 2019

The Guilt of Being a Parent and Chronically Ill

Trigger warning: loss and miscarriage

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.

Having a child and dealing with guilt while chronically ill

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.

About the Author

February 1, 2019January 29, 2019

The Search For An Answer, a short story

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.”

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

September 24, 2018September 24, 2018

Pain Awareness Month: Why Does It Matter?

Learn about chronic pain during Pain Awareness Month at The Unchargeables.

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.

September 12, 2018June 21, 2019

Living with Limitations

I was a physically active person in high school. I was a two-sport varsity athlete playing baseball and golf and a two-time MVP golfer for my high school. I loved to be outside and active. At 19 years old I joined an adult softball league and continued to be active. But somewhere along the way I realized that my body wasn’t doing what it used to and it ached more than I ever could have imagined. I knew my mother had rheumatoid arthritis and fibromyalgia. I knew that both are thought to be hereditary, but I never thought it could happen to me. Years, many tests and doctors later I was diagnosed with rheumatoid arthritis and fibromyalgia along with a few other chronic illnesses. I was crushed.

Learning to Live with Limitations

The pain began around January 2016. I tried to get exercise by walking and swimming, but slowly I started to feel worse the day after I would exercise. The pain worsened and fatigue began. Eventually I could barely get out of bed. I felt worthless- I couldn’t play baseball anymore, I couldn’t walk a round of golf, I could barely walk around the block. I had to learn to tie my self-worth to something other than my physical abilities.

Finding other things to help with my self-worth was difficult at first. I was and sometimes still am grieving the loss of who I was and what I used to be able to do. I started avoiding people, not going out and not doing anything more than what was required. I became depressed, which wasn’t new to me, but it was a different kind of depression than what I was used to. This depression had a legitimate cause. I felt like I was right to feel awful, anyone would in my situation, right?

With having depression and being on Prednisone for the pain before I even had a diagnosis, I began to eat more and more, exercise less and less and I began to gain weight. The weight gain caused even more depression. I was really felt worthless. It took a long time to recover from the depression and sometimes it still comes back, but I was beginning to learn to put more value on things other than transient physical capabilities. I pushed myself to get out more, I made new friends and got back in contact with old ones. By the end of 2017, I received a multitude of new diagnoses and I had friends to talk about it with. By being open about my chronic illnesses both online and in my day-to-day life, I gained friendships with other people who understand what it’s like to be in a constant war with your own body.

I decided that I wouldn’t allow my chronic illnesses to hold me down. I would eat healthy and get exercise. I’m still working on that, and it’s not easy, but I’m slowly feeling better and getting healthier. Here are a couple things I’ve learned.

Know Your Limits

When I was first diagnosed I was told by my doctor that exercise helps and as much as I hate to admit it, my doctor was partially right. Exercise does help, but I had to learn to go within my limitations and I had to slowly increase what I do in the gym. Doing too much is detrimental, but doing just enough makes my body feel better and makes me feel better emotionally. Even just doing a little bit of exercise made me feel more productive and gives me a feeling of accomplishment.

When I first started going to the gym, I started off doing the same amount of cardio I did when I was an active athlete – 30 minutes on the elliptical. That was a huge mistake which I paid for the next day in bed in agonizing pain from overexertion. I had to learned from that to start small and build up to doing more. I went from 15 minutes of cardio a couple times a week, to 15 minutes of cardio 3 times a week, to cardio plus some weights, and now I am adding yoga on top of 20 minutes of cardio 3 times a week. It’s been a process of trial-and-error and learning. Sometimes I make a mistake that causes me more pain, but mostly it’s been a slow progression of getting my body used to exercising again.

Stay Positive

For me, staying positive is the hardest thing to do. I hate that I even have limitations at 23 years old and sometimes I beat myself up over things that are out of my control. The hardest part of getting healthier is to remain positive when I don’t see any results. When I slip up, I have to remain calm and let it go. When I can’t do what I want to, or what I decide I should be able to do, I have to remain positive.

Positivity is the key to get anything done, from doing housework to getting healthy. If all you see is the problem, you can’t see the solution. It’s about going forward without always seeing what’s coming. It’s about forgiving yourself for not always being able to do what you want and it’s about learning to love yourself despite what you can’t do. And that might not be easy, but it’s about trying to remain positive through it all. That’s how things get better.

About the Author

Chris is a 23 year old college student who lives with several chronic illnesses. Chris loves meeting and talking to new people, especially those who struggle with similar things.

August 1, 2018August 1, 2018

A Comedy of Errors: When Doctors Doubt Their Patients

Don’t be afraid to confront a doctor if they doubt you.

When’s the last time you were really honest with your doctors? Never? That used to be me.

Anyone with any type of chronic pain knows that there are better days, bad days, and the worst days. If you battle chronic pain, I’m also betting you minimise it to those around you. You put on a brave face and don’t reach out for medical support anywhere near as often as you should.

I’m very much the same. I rarely reach out to my team of medical professionals unless I really, really need to. This is partly because of numerous negative experiences in the past and partly because I don’t want to be a bother. However, a month ago I went from feeling as well as I ever will be, my version of normal, to feeling worryingly unwell in just a matter of hours.

A Flare-Up Like No Other

Not a lot scares me when it comes to my health. To my husband’s frustration, I continue to minimise even the severe symptoms and won’t admit when it’s getting to be more than I can handle. However, on this day I was genuinely scared by this sudden onset of pain in my ankles (later spreading to other joints). This, and the other symptoms that I had, felt like no other flare up I’d ever experienced. So I reached out to my GP, but failed to get past a particularly obstructive receptionist. I didn’t have the energy for a battle, so I accepted her dismissal and ended the phone call.

Several hours later I had grown much worse, so I called back for an emergency appointment. I was refused this, so I asked for a GP to ring me back. After several requests, I was granted this. To cut a long story short, my GP was unhelpful at best and entirely dismissive at worst, which was surprising as she had always been one of the better ones. I was refused stronger pain medication and told to wait until morning for a blood test.

A short time later I had become utterly consumed by the pain and was genuinely becoming very concerned. I called an out of hours service who wanted me seen immediately, given that I have a disease which means my immune system isn’t working. I’m also on a lot of complex medications which can cause issues of their own (as well as suppress my immune system). It turned out theirs was the right call. I ended up in hospital for a week while the doctors tried to get my pain back under control and work out what on earth had happened to cause such a rapid decline in my health.

Never Was A Story Of More Woe?

Before I share what happened next, I wanted to just pause to share the purpose of this article. Now I know you may be thinking this is a tale of woe and misery. But it does have a positive ending. I’ve chosen this experience to write about because it’s one I come across time and time again in the chronic illness community. I hope to encourage you to speak out the next time it happens to you…in whatever form it may take.

So, there I am stuck in hospital, exhausted but in too much pain to sleep. I was trusting the medical professionals around me to care for me and get to the bottom of what was going on.

Issue #1: You Can’t Still Be in Pain!

The first issue that cropped up was several nurses trying to tell me that the morphine MUST be stopping my pain. They questioned how I could possibly still be in agony while pumped full of IV morphine and slow release morphine. I couldn’t answer that; I just knew I was still in a lot of pain even with all these drugs in my system. My rheumatologist later told me he wasn’t surprised that morphine only just took the edge off the pain because it isn’t really designed for this type of pain. Sadly, there is currently no alternative.

Issue #2: Oops…

The second issue that cropped up was that the hospital delayed contacting my rheumatologist, despite my numerous requests because I knew he would know what to do. When they did eventually contact him and get his recommendation, which was steroid injections to try and get the inflammation causing the pain under control, they accidentally administered the injections twice! Thankfully it did me no harm, but it was far from reassuring.

Issue #3: A Ridiculous Diagnosis

The third, and perhaps most important issue, was when a junior doctor decided I didn’t have Rheumatoid Arthritis. Unknown to me at the time, she had checked my bloods. (My blood tests are different from many of those with RA because I am seronegative). Despite there being a wealth of information on file from my specialists, she decided she would interpret my bloods with no experience of autoimmune or inflammatory disease. She concluded that I didn’t have Rheumatoid Arthritis at all. What she did conclude was I must have simultaneously broken both ankles without realising. Go ahead, you can laugh. I did when I later found out because it was so utterly ridiculous. However, many of you with a chronic illness will know this type of experience is not unusual, which is no laughing matter.

At the time this junior doctor was “treating me,” I had no idea about any of the above. She lied and told me the Rheumatology department had requested x-rays of my ankles. I went along with this because it wasn’t unreasonable. I had the x-rays despite crying with pain trying to bend my feet into the correct position for the radiologist. The doctor later made a passing comment that my x-rays showed I hadn’t broken my ankles, which I thought was odd, but was too exhausted to think more about it.

The search for the cause of this crazy pain continued. Eventually I got so fed up, I called my rheumatologist from my hospital bed and got an emergency appointment with him the following day. It was only as I was being discharged that following day that a doctor came to apologise to me. I had no idea why she was apologising until she explained the junior doctor who requested the x-rays had been reprimanded for requesting them and for jumping to incorrect conclusions about my diagnosis.

Speaking Up

Normally, I would have smiled and said it was fine and let it go, because I have the utmost respect for medical staff. They have an incredibly challenging job, and I understand all doctors must learn and knowledge comes with experience. But this time something stopped me, and I called the doctor back and asked if I could speak with her. I spoke more calmly than I felt when I told her that the care I had received in her hospital was well below the standard I expected. I highlighted several issues (some not included in this article) that I was unhappy with.

Most importantly, for the first time in five years, I then went on to tell her honestly how it feels when medical professionals don’t believe you or your pain levels and the damage that can do. It was an emotional conversation, but by the end I was so glad I had done it. A doctor heard, for perhaps the first time, how it feels to be a chronically ill patient and how much harm it can do when doctors don’t believe us. She appeared to take it on board and discussed action she would take to help other staff understand more about invisible illnesses and chronically ill patients. I hope it made some difference that I spoke up; it certainly helped me.

My rheumatologist worked out that the reason for me being so poorly was an infection, which had also caused a drop in my temperature and issues in my liver. The hospital had all this information, but because there wasn’t an obvious cause, it seemed easier to see me as a hypochondriac.

Your Voice Matters!

The point of writing this article was because I know so many of us with invisible or chronic illnesses regularly face doubt from so many people. It is incredibly hard when you feel those most qualified to help you don’t believe you. I want to encourage you to speak up about this. Doctors are humans, too, and we don’t need to fear them. They make mistakes and don’t know it all. They can learn from us as much as we can from them.

Working together with your doctors is vital to your mental health, as well as your physical health. Never be afraid to disagree with them, educate them, or be honest with them if their attitude is hurtful. In my experience, the best, most respected, and knowledgeable doctors are those who listen to and learn from their patients.

It is so important to be actively involved in your own treatment. You know your body best; don’t afraid to speak up when something concerns you. An honest conversation may just mean a better relationship between you and that doctor, or a better experience for a future patient.

Thanks for reading, and don’t forget: your voice matters.

About the Author:

Rachel is a 29-year old Chronic Illness blogger at www.whatapain.co.uk living in the North of England. She was diagnosed with Rheumatoid Arthritis in 2015. Rachel is 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.

July 5, 2018June 21, 2019

Chronic Illness Means Taking One Day at a Time

Life Altered by Multiple Chronic Illness Diagnosis

Chronic illness has completely altered my life. I went from a two sport varsity athlete in high school to a person who functions at a pain level that would leave most people bedridden. Now life has been consumed by handfuls of pills twice a day, at least one doctor’s appointment a week, constant pain, exhaustion, and more difficulties. After struggling for over a year to get an accurate diagnosis I finally ended up with several: Rheumatoid Arthritis, Sjogrens Syndrome, Graves’ Disease, Fibromyalgia, and Irritable Bowel Syndrome.

Seeking Sobriety and Answers

I can’t tell you when the pain started. I spent years as a full time heroin addict, and while I was using I wasn’t in pain. But every attempt to get sober left me in agony even after withdrawing from the drugs; which only lead to relapse after relapse. Every attempt at sobriety would lead me to a different doctor for an answer, but every doctor assumed it was Post Acute Withdrawal Syndrome. I knew in my heart there was something seriously wrong, but I couldn’t find anyone who believed me. Eventually I managed to get sober and continued my fight for an answer to my pain. Every doctor I saw just assumed I was looking for drugs, even when I told them I didn’t want any narcotics. I went from doctor to doctor looking for someone who believed me and would help me finding an answer. I finally found one, over a year after I began my search. A few months later I got my answer. It came with a laundry list of health problems.

Chronic Illness Diagnosis Too Much to Bare

A few weeks after getting diagnosed with fibromyalgia and rheumatoid arthritis I landed in a mental hospital for a suicide attempt. I was so overwhelmed by the idea of dealing with pain everyday for the rest of my life that I assumed I couldn’t do it. I didn’t really want to die, I later realized, I was just afraid of a life of constant pain. Fear is a completely overwhelming emotion and I was terrified thinking of the kind of life I was being forced to live.

Struggling to Stay in School

Throughout all of this I struggled my way through college. I am currently studying the prerequisites to get into the nursing program. Just this past semester I developed a serious infection that was sensitive to only five antibiotics. As it turned out I was allergic to four of them. I spent weeks covered in a rash because of constant allergic reactions. I ended up with a PICC line to take the final antibiotic that would work, which was only available as an IV antibiotic. It took three weeks on that medication to heal. Thankfully it worked and I was finally free of the infection. But throughout all of that keeping up with classes wasn’t possible and one had to be dropped.

Immunosuppressant Therapy for Chronic Illness

Once I was free of the infection I could start my treatment for the Rheumatoid Arthritis- it was an immunosuppressant. This medication, which is also used in chemotherapy, makes me sick for at least one day, usually two. Once I realized this fact my mental health took another turn for the worse. This time going to the hospital was not an option. It was only a few weeks away from finals and past the date to withdraw from the class. The doctor upped the antidepressant which caused suicidal thoughts. I decided that if the next change my doctor made didn’t help I would take my parents wrath and go to the hospital for help. Thankfully the change the doctor made worked. I was no longer suicidal. The depression remained as a hard consequence of chronic pain.

Looking for Positive Side of Chronic Illness

Everyday is a struggle to keep looking for the positive when it all feels negative. Sometimes I think the light at the end of the tunnel is just a train that’s going to hit me at full speed. And sometimes that is what it feels like. But I searched for a group of people who understand the kind of struggles I have. Thankfully I found a few and began to make friends with others who have similar challenges. I began to talk to my family members who also struggle with chronic illnesses. I created a beautiful new relationship with my mother who struggles with almost the exact same situations as me. Anyone can find help through The Unchargeables Chronic Illness Support Group.

Chronic Illness Self Care

I realized that I can’t look at my whole life at once but instead I now try to take it a day at a time and go easy on myself. I can’t control what may or may not happen in the future, but I can control what I do today. And today I choose to allow my doctors to attempt to put my body back together while I focus on what I can do to better myself. I do what’s put in front of me: run the errands, study, go to appointments, and on and on. When things get overwhelming I do some self-care. It’s hard for me to do self-care because I tend to forget about it with everything else going on. I love taking baths and writing poetry and that’s what I try to do as often as possible. Life is still hard, but every day I do something, even if all I can do that day is get dressed. I’m grateful that today I have people in my life who understand my struggles and love me through them.

About the Author

Chris Thoman is 23 years old, a 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. You can follow Chris on Instagram at https://www.instagram.com/foreverandalwaysarebel/

May 17, 2018May 17, 2018

Social Media: It’s A Stranger Thing

The recent security issues on Facebook have a lot of people wondering if they should delete their accounts. I see the validity of the concern, but in no way would I even consider deleting my account. Why? Well, it’s quite simple.

I Just Need Someone to Listen and Not Judge

Strangers on the Internet understand me better than many life-long friends and even family. I live with rheumatoid arthritis, fibromyalgia, thyroid disease, and a skin disease called DSAP. I struggle daily to get through the simplest of tasks because I live with chronic pain. My family and friends are very supportive and I know I am lucky, but even when they try to understand my pain, they just don’t get it at times. Honestly, I’m glad they don’t live in pain like I do.

Living with a chronic illness is very difficult. If I need to vent about the difficult times, I find people close to me either pity me or try to fix things for me. There are even outliers in my life, like a former boyfriend, who accused me of faking things to get out of doing stuff. It wasn’t true and that accusation is a big part of the reason that we are no longer together. Then there are the people who just want to cure me with all kinds of diets and treatments. Sometimes, I just need someone to listen and not judge. This is where Twitter and Facebook play an important role in my life.

Finding People Who Truly Understand Me

Finding groups of people on social media who understand when I post about living in pain is a blessing. I can post how hard it is to vacuum because my hand keeps going numb and I’ll get Sally Smith from Anytown, USA responding to me with, “Me too!” or “I get it!”. The simple fact that I know I am not alone is so reassuring.

Prior to social media, I felt totally isolated. My close friends were all married and starting to have kids. None of them had time to help me or be with me as I went from doctor to doctor to try to “cure” myself. I became bitter and resentful. Their lives all moved forward while mine was bogged down with pain and illness.

In 2009, I found a blog about a woman living with RA. I showed her cartoons to a coworker who said, “She sounds exactly like you!” It was one of those “aha!” moments and it changed my life. I started seeking out people on social media who also had multiple chronic illnesses. Since joining Facebook and Twitter, I have developed life-long friendships. Through social media, I helped to cofound a non-profit, traveled to Washington D.C. to advocate for patient rights, and have found comfort with strangers who simply get how hard it is to live the chronic life.

My personal Facebook account is filled with people who know me longest but my Facebook blog page and my Twitter account are filled with people who truly understand me. I value each one. Don’t get me wrong, I make a conscious effort to only share certain information online; I’m not oblivious to the dangers of social media. Not everyone is nice, but the ones who are make all the difference on a tough day. I value these interactions with fellow patients online and plan to continue my patient journey with others who truly understand me.

Want to connect with other Chargies? Visit The Unchargeables Facebook page!

About Author Kelly Conway:

”I am a patient advocate living with multiple chronic illnesses including fibromyalgia, thyroid disease, rheumatoid arthritis, DSAP, and high blood pressure. I work full-time as a speech-language pathologist and trying to balance my health and career is difficult. I’m the cofounder of IFAA (International Foundation of Autoimmune & Autoinflammatory Arthritis) and the author of the blog “As My Joints Turn: My Autoimmune Soap Opera.”