The 'Secret Society' You Belong to When You Have Chronic Illness

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I belong to a secret society! Masons? Nope. Scottish Rite? Nope. Illuminati? Nope. I am a member of the chronic illness secret society, rheumatoid arthritis chapter. If you are a member of the same secret society, you totally get this. If you don’t belong, you are now curious. However, I didn’t choose this secret society – it chose me. It chose many of my “brothers” and “sisters.” And, although we each belong to different chapters, we are connected in a way the world doesn’t understand. We speak a secret language and most of us live a secret life.

 

We attend secret meetings, too. The meetings may happen every month, every other month and/or every three months. It really depends which chapter you belong to and how well your studies are going. The world calls them doctor appointments, but we know them as a gathering of our members in one room – the waiting room. While in the waiting room, we find ourselves wondering to which chapter the others who wait with us belong. Sometimes we strike up conversations just because we know we are with “our people.”

OK, well, chronic illness isn’t a secret society, but it sure feels like it is. We walk amongst the healthy people and no one knows what we are silently carrying. For many of us our struggle is invisible. We don’t look like we belong to this secret society, but when in a crowd we can spot each other a mile away, like a familiar face. While at the grocery store, I spot the woman limping down the cereal aisle and I recognize her limp. It isn’t a limp she got from spraining her ankle at the gym. And as she reaches for the box of Cheerios, I can see her struggle to grasp it and place it in her cart. As I limp by dragging my left leg, I smile a smile that says, “I belong to your sisterhood.”

When we meet each other outside of the waiting room and in the healthy world, we connect in a way that is deeper than others because we know the world to which we belong is not an easy one and that our world can be secret and isolated. When a RA warrior meets a lupus warrior, they feel a connection deeper than just having autoimmune disease. They begin to talk about rheumatology appointments and medications and sometimes a lifelong friendship is formed with a total stranger. Don’t laugh, it has happened in my life. When people ask me how I met my best journey friend, I often want to reply, “methotrexate.”

Personally, I am sorry there are so many in my secret society, but I have to say we truly are an awesome group of people. I love our members. There is so much compassion in our hearts, so much empathy in our thoughts and we value our relationships deeply. We cherish the little things and the little life moments more than others. We know each other’s secret struggles, secret pain, secret isolation and the little victories of the day, like showering.

While our society is secret, we do our best to raise awareness so we can proudly wear our member jackets without puzzled looks from those who don’t belong. We long for our world not to be secret. Not that we want to recruit new members – our hearts hurt when that happens – but we want people to understand why we park in “that” space, need to eat at “that” moment or why we can’t do “that” tonight.

If you don’t belong to our secret society and you encounter us out, please feel free to ask us about our chapter. We would love to tell you our story. If you are a member, I will see you at our next meeting. Be sure to say “hi” if we make eye contact in the waiting room. I would love to talk with you.

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Thinkstock photo via VladimirFLoyd.

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What It's Like to Be Diagnosed With RA After College Graduation

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I never expected the summer after college graduation to be easy. After a relentless semester of job rejection after job rejection, I graduated without a clue about my next steps, so off I went to spend the month dog-sitting in my hometown in New Jersey. The days quickly felt long and lonely. So, I did what any financially responsible graduate would do, and spent my first dog-sitting paycheck on a monthly yoga pass, eager to alleviate some post-graduate anxiety.

I had just finally resolved a seemingly endless bout of foot pain, and was relieved to be walking effortlessly again. Each day, I walked 2o minutes each way to the nearby yoga studio, where I was happily surrounded by strangers twice my age. On day six, however, I began to feel an ever-so-slight pain in my knee. I was frustrated about dealing with yet another unexplained injury, but a quick Google search reassured me that rest and ice would be enough to do the trick. Unfortunately, as it turned out, this could not have been further from the case.

When my knee pain lingered for weeks on end, gradually growing less and less bearable, I finally bit the bullet and scheduled an orthopedist appointment. Just a few short days later, I was scheduled for a job interview in Washington D.C., followed by a flight to my parent’s house in Amsterdam, the Netherlands, which did not leave much time for medical emergencies. Unfortunately, this was precisely the time at which everything began to fall apart.

Suddenly, a short five-minute walk up the hill from the train station left me in hysterical tears, as did, oftentimes, a trip up or down the stairs. It took all of my strength to get off the couch or out of my chair to feed the dogs. I finally bit the bullet and took a trip to the orthopedist, who left a voicemail a few days later informing me, to my surprise, that I had Lyme disease. When I called my mom to inform her of my new diagnosis, she decided it was time for her to fly over to the U.S. I was still dog-sitting by myself at this time, although I had to call in some reinforcements when it became clear that walking was no longer a possibility. At this point, standing up to wash a few dishes was nearly impossible. If I did manage to do so, I would have to follow it up with a lot of ice, pain medication, and most likely, a nap.

These details about the level of pain I felt may seem excessive. Unless you have experienced physical pain of this kind, you will never understand the feeling of needing to explain or justify it to those around you. Although it may seem obvious, you cannot see pain on a person’s face.

My mom and I went to see an infectious disease doctor, who we hoped would give us a bit more information about my diagnosis, when I had contracted it, and how long the recovery process might take. Looking back, I realize that he never really looked at my knees, asked questions about my levels of pain of fatigue, or offered any words of support. But, at the time, I did not seem to notice. Doctors, we assume, are there to give us answers. How was I supposed to know to ask the right questions?

After another blood test, we were out the door and en route to my grandma’s house, where we would await my recovery. By this point, I felt like all of my friends lives were on fast forward, while mine was firmly at rewind. Slowly but surely, my friends were entering new stages of their lives – new jobs, new apartments, and new relationships… and I felt stuck.

My mom and I occupied ourselves with endless episodes of “Jane the Virgin” and a lot of our favorite foods. Many incredible friends and family members checked in with me regularly, but it was hard not to feel as though others forgot about me altogether, or simply did not understand. These few weeks may have flown by for some of them, who were busy working at new jobs or living in new cities, but when it sometimes hurts your hands and wrists to even turn the pages of a book, time can feel as if it is stuck in slow motion.

At times, I felt extremely grateful for the opportunity to slow down. I still do. I began to cherish the days with my mom and dread the day when she would return to living across the ocean from me. I wondered if I had rushed into the job application process, without taking enough time to truly think about what I wanted next. Most of the time, though, I desperately wished time would speed up. Day after day, I awaited any sort of change, but the pain continued to persist, and even worsen. I woke up every few hours with pain in my knees, neck, and shoulders, unable to find a comfortable position to sleep. It hurt to lie down, sit, stand up… it hurt to do anything and everything.

I could hardly remember what it felt like to live without pain. When I finally received a job offer, it soon became clear that it would be impossible for me to accept it, given the state of my health and the position’s rapidly approaching start date. I stopped the job application process altogether. I had no way of knowing when I would be capable of starting a new job or moving to a new city. Luckily, I had my mom by my side to make me laugh and lift my spirits, but it wasn’t always easy for her.

The writer in an electric wheelchair at a store.

After three weeks passed with no improvement in my health, we scheduled an appointment with a Lyme specialist, hoping for new answers. The new doctor informed us that my previous tests were largely unreliable and outdated. Yet again, I would need a new blood test, which also meant another week of waiting for answers. When I limped back into the office a week later, I felt a sinking feeling in my chest. I recognized the feeling from almost seven years prior, when my orthopedist informed me that I would need spine surgery. Something about the doctor’s face told me everything I needed to know, and I knew immediately that the news would not be good. Yet again, I felt my face flush and my palms began to sweat. I laid back in the chair as she laid out a series of charts. Her words began to blur together.

Rheumatoid arthritis is a condition in which the body attacks itself,” she said, sketching an explanation about cells on a notepad. “There are professional athletes who live through it, like the golfer Kristy McPherson.”

There was a clear elephant in the room, considering she had yet to attribute my symptoms to this condition, but the message was clear. I had no idea what “rheumatoid arthritis” meant, other than that it was responsible for my summer of misery. Though the doctor never used the term “chronic illness,” I knew enough to understand.

Understandably, she didn’t want to worry me with too many long-term details. Soon enough, though, I realized that I didn’t have much to tell my friends or family members about my diagnosis, because I still didn’t really know anything about it myself.

Questions rolled in quickly:

“Aren’t you too young to have arthritis?”

“But you don’t look sick!”

“So will you have it forever?”

“When will you be better?”

I even heard, “You’ll get through this! You’re strong,” to which I wanted to say, “But sometimes I don’t want to be.”

Unfortunately, that’s the thing about chronic illness. I may never feel completely “better.” Sickness is now a part of my life. Sometimes I feel strong and resilient. Luckily, I have the support of many loved ones who will be there for me even on the days when I feel quite the opposite.

This summer taught me a lot about pain, sickness, health, and all of the in-between. It showed me who would be there for me through all of this. Most importantly, it taught me that we have a long way to go when it comes to understanding pain.

Time and time again, I’ve heard, “We need to start treating mental illness like we treat physical illness.” When we say this, we do a firm disservice to the physically ill. We ignore the ways in which physical and mental health are deeply intertwined. We act like we have a clear grasp on physical illness, pain, and how to support people who battle them on a daily basis. From my experience, at least, that couldn’t be further from the truth.

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Why I'm Not Looking Forward to Retirement as a Person With Rheumatoid Arthritis

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In less than two weeks I will be 40. Some of you are thinking, “She’s old!” and others are thinking, “She’s young!” What it means to me is I have hit a time of life when my peers and coworkers are talking about retirement. And cue, feeling old! I mean, nothing screams “adult” more than moving away from talking about the hottest concert tickets and bars to the hottest investments. And no, I don’t work for a start-up company where people retire at 40. I mean, people are having conversations about how to set themselves up and invest so that a comfortable retirement is achievable at retirement age.

 

And now, at almost 40, when I am sitting listening to my peers talk about retirement, I realize how different my life really is. There are some situations when you feel “sick and different.” This is one of them. I am one of the 1.5 million Americans living with rheumatoid arthritis. My first symptoms of RA showed up when I was 30 and at 31 I was formally diagnosed. I really had no idea what that meant for my future, but I did realize it was life-changing – only because my family doctor told me he was “sorry” after giving me my diagnosis. I’m pretty sure my doctor would not apologize if it didn’t mean “life-changing.”

I recently realized my idea of retirement was different than my peers and co-workers at a work lunch a couple of weeks ago. While celebrating a co-worker’s 20-year anniversary with the company, the conversation swiftly switched to retirement. That day I heard things like:

“I need to save enough to take me into my 90s. My family tends to live a long time.”

“When I retire, I will take up an activity so I don’t grow bored.”

“I can’t wait to travel whenever I want.”

Then the conversation turned to me, “Elaine, what are you looking forward to in retirement?” My heart sank. I am usually an active participant in conversations, but at that moment you could hear a plate drop in the restaurant. What I wanted to say in that moment wouldn’t fit in the celebratory spirit of the conversation. So, I shrugged my shoulders to get out of an uncomfortable situation quickly.

The real answer is I won’t retire like my peers will. I probably won’t have a retirement party with a cake. Retirement for people like me is when my body can no longer perform work tasks. My retirement will come when my hands are no longer able to type, when my mind is permanently exhausted from painsomnia, when my immune system is compromised to the point that being in a work environment is dangerous, when work stress begins to affect my physical health, and when my hips and knees can no longer sit at a desk. Those will be the obvious signs I will need to give up on my career. Retirement isn’t planned for people like me.

Not to be morbid, but my future plan is to be alive and mobile. I know the statistics. I know there is a real chance for heart and lung involvement. I know the possible side effects of the drugs I take. It is the stuff we patients know but about which we don’t want to really think. And honestly, I think more about my medical future than retirement. My thoughts go from, Will my new drug cocktail be “the one” to put me into remission? to Will the new drug I am on actually work like it is supposed to? Rather than retirement, it is the medical future about which an RA patient often thinks.

So do I think about my future? Yes. Do I think about retirement? No. My goal is to live now, travel now and do what I enjoy now. As long as my finances and health allow it, I will do it. I am not waiting until retirement to make memories because I am investing in my life now.

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Thinkstock photo via Peshkova.

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The Challenges of Talking About Rheumatoid Arthritis

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Living with rheumatoid arthritis is hard; talking about living with rheumatoid arthritis, especially to loved ones and friends, is harder. Like the disease itself, there is nothing simple about putting the experience into words. How does one express the level of uncertainty that is part of our daily experience? How do you describe your level of pain accurately without falling into what appears to be a pity party?

These questions have plagued my thoughts over the years, especially since in the past many of my feeble attempts at explaining the complex situation that my life is, have resulted in embarrassment on my end and confusion on the part of the person I was seeking to help understand.

Part of the problem for me is that I don’t have a frame of reference for the other person’s experience. I don’t remember not being in constant pain; the very idea is so foreign to me that I tend to assume a level of understanding that just isn’t there. I have had a few acute injuries that give me a sense of what bad pain is for people who don’t live with chronic pain and what they tell me is that the feeling of a broken bone is equivalent to a bad pain day for me.

The fact is that my life is by definition less carefree, less physically enjoyable, and a lot more tiring than most other people who inhabit this planet. The fact is, if you live with rheumatoid arthritis, your life is, too.

These are the facts, but these facts, especially in the age of the shiny, happy social media lives we tend to compare ourselves to, are not easy to share. This is especially true if you are seeking to be less anxious or avoid pity. How many times have you opened up to someone seeking comfort only to walk away feeling much worse? How many times have you opened up to someone about your pain only to end up minimizing your experience in order to comfort them?

This used to happen to me a lot, which is why when I was young I tended to answer, “fine,” whenever anyone asked how I was doing. It worked well until I was in college and started going to a rheumatologist who told me, “Fine is not an answer Kathryn, you are going to have to be more specific.” That started the process for me of actually digging deeper into how I really felt, and what I discovered is that I actually didn’t feel fine. I felt scared, alone, and anxious about my life. But when I told other people this, I found that they either joined me in my fear and anxiety, or attempted to placate me by saying, “It will be fine, don’t worry about it.” This was a good way to shut me back up.

When you live with RA, you learn quickly that life can be very challenging. Eventually, you come to understand that this is OK even though one of the challenges of RA, and any complex chronic illness, is the inexpressibility of it to those who don’t share your experience.

It took years, but what I finally came to understand is this: RA is a lonely experience and it is OK to keep most of it to yourself with most of the people in your life, including loved ones. But it is vitally important that you have at least one person who you can share your full experience with.

For most of the people in my life I keep a “need to know” rule. I tell them about my pain if they will be affected by it in some way. Otherwise, I keep it to myself unless they ask me a direct question about it. I am honest when asked a direct question but I always choose my words carefully unless I am with someone who is safe. A safe person for me is someone who listens, and expresses support but doesn’t try to direct me or tell me how I’m feeling. I can tell if a person is safe by how I feel after I talk to them. If I feel worse, I need to scale back my level of openness about my suffering. If I feel better, I know the person is safe to open up to.

The few people I have in my life that I feel safe being completely honest with are my life preservers when I’m really struggling and my cheerleaders when I’m doing well. Without them my life would be much more lonely and hard. I know that, whatever comes out of my mouth, they can handle it.

At this point in my life I’m consciously surrounding myself with people who don’t back away from the truth of my life. My relationships with the people who have a harder time “handling it,” whether it’s because they are afraid for me or just don’t want to be bogged down by my life, are so much better because I don’t try to force something that isn’t there. I don’t need to because I have the comfort of knowing if I need true support, I have it, just not from them and that is perfectly OK, and I’m finding that my life feels much calmer and less challenging.

So, my advice for people who are struggling with their pain but not receiving the support they need is to start paying attention to how you feel when you open up to the people in your life. Start cultivating the relationships that feel safe and supportive. Understand that it’s OK to keep your pain to yourself much of the time, and know that you will find the people who will walk your journey with you and not turn away.

This blog was originally published on True Health Blog.

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Thinkstock photo by VladimirFLoyd

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Why Having a Relationship With Your Doctor Is Good for Your Health

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Dear chronic illness newbie,

First, let me say that I know you are probably scared and confused. You are also likely relived to know that you aren’t making your symptoms up and something really is wrong. But, you are also trying to figure out if what you heard is right, “There is no cure, only management of this disease.” You are about to go through the stages of grief, and you may choose to keep your new journey private or you may start searching for others who belong to your new chronic illness family. Just so you know, there is a ton of stuff written about all the above, but I am about to give you the most useful piece of information.

Chronic illness newbie, you are about to build a relationship with your chronic illness physician or physicians that you have never experienced before. Your world has brought you to a point where you no longer go to a doctor with a cough and leave with an antibiotic. You are about to build a long-term relationship with a physician, and humanizing your experience while you are in those appointments will benefit your total care. You will see many specialists on your journey but your primary chronic illness physician is the quarterback of your team. Your relationship with your internist, rheumatologist, gastroenterologist or dermatologist is one that grows beyond, “I have a cough,” and, “Here is an antibiotic.” No one really has told you that yet and you are still processing your journey.

I use emojis when I email my physician, which includes sad faces and happy faces. I know, that sounds very unprofessional. And I also tell my physician he is a rockstar. Why? This is because over the years my relationship with my chronic illness physician and his staff has grown, and they’ve gotten to know me – the real me. He knows my family because my husband and my mom take turns attending appointments with me. He knows Las Vegas is one of my favorite weekend getaway spots. He knows my personality – I’m loud, I talk a lot and I use humor as a defense mechanism.

Why is this so important? Because making myself human in my appointments makes me more than a patient number or diagnosis.

By humanizing myself and making myself vulnerable, I have built a relationship that helps my overall care. When I am quiet, my physician knows I am hurting. When I get frustrated and hit the wall of my medical journey and say “I’m fine” when he asks how I am feeling, he knows I am lying and knows to ask my family for the real response. He knows they will divulge the truth. When I say I need a patch for the month because I have a trip planned, he asks, “Vegas?” This relationship is beneficial.

I am a person who has difficulty allowing people in on my journey. I am guarded as to what I share. But I have discovered that I have to break down these walls during my appointments in order to bring my physician into my chronic illness world. He can see my outside shell, but as we know our illness can sometimes be invisible. If I do not open up and tell him what is going on inside my physical shell, he will not know how to treat my symptoms.

For example, for a couple of months my inflammation levels had been good but I really did not feel well. I hurt like my disease was still active. When my doctor asked how I felt in my appointment, I replied “fine” because I knew my blood said I should feel fine. My next appointment came and I finally opened up and replied, “I feel sick, like the medicine isn’t even working, even though I know my blood says it is.” Well, come to find out that phrase is what he needed to hear from me. He explained that the medication I was taking could yield normal blood results when the disease was still active. It was the validation I needed at that moment and had I not opened up sooner he would have not been able to intervene.

Now, I also need to tell you that this relationship will not happen overnight and may take years to build. But, you will begin to view your chronic illness physician as more than a doctor who sits there in front of you, with a white coat on and credentials that most of us do not possess. When you begin to build this relationship, you will begin to feel that this physician is family. They become a grandparent, parent or sibling figure and you will begin seeking advice beyond your medical illness. It takes you to a point of asking about your career path or vacation plans… and it isn’t done in an odd way because those things will affect your overall care.

I also need to warn you that you may not feel this connection at first. If you don’t begin to feel it within a year and you feel that your overall care is being affected, you may need to find another quarterback. I was not blessed with this relationship at the beginning of my journey and actually had no idea a relationship with my doctor was supposed to develop like this. It wasn’t until I “broke up” with my first chronic illness physician that I discovered this. And now that my world is filled with chronic illness warriors, I see that this relationship is not uncommon in the chronic illness world and is what a healthy patient/doctor relationship looks like.

So, this is what I can provide to your new diagnosis: I know everything is confusing right now but try to start on that relationship. Talk about your pets, your kids, and your work. Explain what your health means to your life, what you are missing out on, and why you are fighting to feel better.

I wish you health and knowledge on your new journey; you are strong and you’ve got this!

With love,
A girl with rheumatoid arthritis who has been at this a while.

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14 Reasons Working Is Difficult When You Have Chronic Illness

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Being on disability is no walk in the park. It’s a struggle both emotionally and financially. When you are already dealing with a battle inside that no one else can see or feel, it’s just added stress when your spoons are all used up.

This list is to remind myself to not feel guilty or to lose hope for finding something I can do. It is also to show anyone who questions why a 31-year-old female cannot work but looks healthy or who occasionally sees me out but can’t tell I am in pain and intense fatigue as there are no visible signs of disability or illness.

I am on disability because I have rheumatoid arthritis and osteoarthritis, and along with these debilitating diseases comes the emotional and mental struggle of anxiety and depression, which makes basic everyday life difficult enough already.

1. Concentration

Brain fog and pain make it difficult to concentrate. Add in side effects of medications that can cause cognitive dysfunction and sometimes I just really have trouble thinking. The cognitive dysfunction caused by my rheumatoid arthritis makes my thoughts and actions feel as if I am moving or thinking through drying cement or there is an invisible wall up stopping my mind from moving forward. I am often confused and my memory is hazy, especially if I am over-tired. Rheumatoid arthritis makes it difficult to think, learn, remember and perform various mental tasks on a daily basis for me.

Not true: I am “stupid.” I am a “dumb blonde.” I am “high.” (OK, maybe a little, but it’s because I strongly consider marijuana a natural pain reliever!)

 

2. Pain

Sitting hurts after a short period. Standing hurts after a short period. Laying down hurts after a short period. Arthritis is painful and there are about 360 joints in the entire body that may be hurting. Pain leads to a number of issues including painsomnia and swelling from inflammation. It makes movement difficult. Ouch. I am constantly squirming in pain, and over-using my joints is pretty easy when they are in a flare.

Not true: The pain is located only in my joints.

3. Fatigue

I live the life of a spoonie and we are a community of people with different chronic illnesses. When you are a spoonie, your energy is limited. We describe ourselves as spoonies to help others understand our energy levels. A spoon is an indicator for our energy, so say we start off with 10 spoons a day (whereas a healthy person has unlimited spoons). Take a spoon away for everything you do like shower, prepare food and eat, grocery shopping, etc. Some activities take more than one spoon and every day is different. Once we are out of spoons we have no choice but to become one hell of a tired, hot mess and that can happen any time during the day. When I do have a bit more energy I try and catch up on everything else. I find between the pain and fatigue I move at what I call arthritis speed.

Not true: I am “lazy.”

4. Flare Triggers

What I went to school for is too much for my body now. I have to make sure I do not overuse my joints, otherwise they become sore and I can further damage them. I can’t lift anything heavy and I can’t stand or sit for very long. The majority of my pain and issues are in my neck, hands, left hip and right knee. I experience pain in these joints pretty much 24/7 and overusing them is easy. Something as simple as scrubbing the shower can irritate them.

5. Stress Is a Major Trigger

Stress is a major trigger that can cause a person’s health to go funky. Add in already compromised health and it can get worse. It’s pretty easy to become overwhelmed when chronically ill and being on disability.

Not True: It’s “all in my head.”

6. Emotional Challenges (I am still adjusting to being chronically ill.)

At first disability was like a vacation I really needed. My body was broken down from years of being an esthetician, especially my hands and back. I wanted to care for my son more and I still consider being able to have the time to dedicate to my son a blessing. I knew I had to say goodbye to my beloved job and find something new, but as simple everyday tasks became more and more difficult, the possibilities of what I could do for work started to lessen drastically. This has led to feelings of being a burden, guilt and isolation.

Not true: I am being “dramatic.”

7. Side Effects

Glorious, oh glorious side effects. They can range from a number of different experiences like night sweats, diarrhea, nausea, depression and mood swings to suicidal thoughts. We’ve all seen the infomercials of pharmaceutical drugs – the lists are always so long, weird and scary. When chronically ill, you usually have to go through a wide array of medications until you find the right one that will work for you. I’ve tried over a dozen and am still searching for the right ones. This takes years for some people. I am at two and a half years, still a baby to being chronically ill compared to many. I’ve known people who’ve waited for close to over six years before finding something that works. Sometimes the side effects are as bad as the disease but I want to fight like hell and beat these diseases.

Not true: How damn happy the people on those pharmaceutical drug companies are.

8. My Health Care Routine Is Already a Full-Time Job

Between all the doctor appointments, physio, yoga, exercise, healthy meal preparation and everything I already have to do as a single mother, my spoons are already overused. I have to put my health and my son as number one. And I need time to rest and relax! Like a lot of time! It’s pretty boring.

Not true: I’m just “making excuses.”

9. How Would an Employer Understand? Who Would Even Hire Me?

Seriously, I would love to find a job where they don’t care if for days or weeks at a time I need to rest or I’ve got a pile-up of doctor appointments that week. Who doesn’t mind my constant mistakes caused by that pesky cognitive dysfunction or my slow and flaky arthritic speed? How would they understand how much I already have on my plate?

Not true: I don’t want to work.

Trust me, I do. It’s pretty boring watching daytime television and being isolated. Not working results in me feeling like a burden, guilty and useless. It’s not a wonderful feeling. I’m also pretty damn broke. I would love to find something I could excel at while chronically ill. I am always hopeful.

10. Every Case Is Different

There are over 100 types of arthritis, all ranging in different cases and degrees. Mine was already bad enough that my rheumatologist referred to me as a difficult and severe case. Just because you can’t see that severity doesn’t mean it’s not there.

True: Just because you know someone else with arthritis who can work doesn’t mean every case is the same.

11. I Have a Severe, Debilitating Disease

Even if you can’t see it doesn’t mean it’s not real. I am not “too young” for it. There are 4.6 million Canadians alone with a form of arthritis, and that’s only those who have been diagnosed. Approximately 350 million people worldwide have arthritis.

Not true: Everyone has arthritis.

If you say that then you haven’t really been listening to what I’ve been saying.

12. I Devote What Little Energy I Have to My Child and Raising Awareness When Not Taking Care of Myself

I am convinced my care for my son is driven by my love for him. It must be the endorphin of my love for him that makes me strive through arthritis to be the best mom I can be. My passion for awareness drives me further.

Not true: I want a man to pay for me.

photo of woman with tattooes holding her wrist in pain

13. My Doctor Suggested It

The first time I met my rheumatologist she told me she would sign any form I needed. I knew she was hinting to me to take disability. I asked her if I should be on disability and she, as another mother and someone treating the disease, told me I had enough on my plate. She was absolutely damn right. Being chronically ill is a battle. It’s a struggle to get by on disability but sometimes you have to put your health first. Don’t ever let anyone make you feel guilty for knowing you are too sick to work but look capable of it. Not everyone gets it and sometimes it’s a surprise to us who won’t.

Not true: I want to “ride the system.”

The system is there for a reason: to help people like me.

14. Not Every Day Is the Same

Every day with my illnesses is different and in probably some way difficult. The whirlwind of chronic illness is already hell to go through.

Not true: I am a “flake.”

15. I Need Time

I need time for my body to heal, adjust, decline. I am on a new journey and a new path in life, a little too early. But I have not lost all hope.

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