young man alone outside at house balcony terrace looking depressed

To the Men With Rheumatoid Arthritis Who Feel Alone

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It seems men don’t receive a lot of support and understanding when it comes to dealing with rheumatoid arthritis (RA). Men are supposed to be “tough.” We may not talk about the disease with anybody and we probably don’t even know another man with the same disease or even an understanding of our daily struggle to just live. I am not saying we struggle more than women do. How our disease affects us has no gender bias; some women have it worse than some men and vice versa. But men aren’t supposed to be bothered by things like pain and sickness, and if you are? You’re a “wuss.”

I feel like I’m a wuss. My RA has affected pretty much every aspect of my life. From my outdoor hobbies to the bedroom, it’s always there. Always ready to say “No way man, not today.” I dread shaking hands with a new acquaintance. Men are supposed to have a firm handshake, but my joints in my hands are soft and my grip has diminished drastically. That is just one tiny example a lot of people wouldn’t think about, but not shaking hands in our society is considered rude and explaining I have RA to everybody I meet is not an option.

So guys, you are not alone. There are a lot of us out here and we do understand what you are going through. We understand your love of fluffy soft socks and PJs, we get that a hot bath can be heaven. We understand when you pay somebody to mow the lawn or ask your significant other to open a pickle jar. We understand when you cancel plans to hang out and we understand if you don’t want to shake hands.

You aren’t a “wuss,” you have a life-altering disease you are trying to make the best of and I understand.

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Lead photo by Thinkstock Images

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What the Doctors Didn't Tell Me About Life With Rheumatoid Arthritis

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I’m so used to doctor’s offices. I’ve been pricked and prodded in every place imaginable since the moment I left the womb. For a while, I was scared of them (not to mention the needle issue I had for years), but I also knew I needed them to stay remotely healthy. So when I walked (was dragged) through the door to my first rheumatologist appointment, I didn’t know what to expect. I was lifeless in appearance, behavior and attitude.

What they don’t tell you in that office once you’ve gotten your diagnosis is that being young doesn’t make you exempt from something like rheumatoid arthritis. Not only that, but they’ll also forget to mention how it can affect your growing and ever-fragile social life. Friends try to understand and accommodate, but if you say, “I don’t feel good” too often in their fragile, young adult, party-obsessed presence, they may start making excuses. “Oh, we didn’t think you’d want to go. It’s a lot of walking and dancing. I’ve got to tell you all about it, though!”

The doctors also fail to mention how those people may try to stay your friend, telling you about all the things they did without you using “lame” excuses, and eventually they may slip through your fingers like sand.

They don’t inform you that having a relationship can become more complicated. Sex, love – forget about it! Who needs it? Especially when you become prone to infections, so every time you make love to the person who rocks your world, you may have to skip a dose of your medicine. They don’t tell you this disease can make a once-pleasant moment with your partner an unfortunate and painful memory.

They won’t tell you it can take years of therapy, support, changing medications and crying your eyes out, wondering if it’s all worth it because you’re just tired of being tired and sick of being tired and tired of being sick.

The thing they will tell you is that there will be days when you’ll feel like giving up, and on those days you just need to rest. Sleep, relax, do something that makes you feel cozy and warm. Give yourself all the self-love and self-care you can muster up. Change your pajamas, throw your hair up and pull out your favorite pair of fuzzy socks. Because if you get through the day on which you felt like giving up, that’s when it’ll start getting better.

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It's a New Year, But I'm Still Sick

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I cannot tell you how often people ask how I’m doing, how I’ve been or what it’s been like living with rheumatoid arthritis. There’s the unsolicited, well-meaning yet sometimes ignorant advice, and then there’s the never-ending “One day it’ll be OK. You’ll wake up and be better.”

So, this letter is to those people. The people who tell me if I pray, maybe my disorder will go away. To everyone who says if I got out more, became more active, lost weight, ate all organic, no wheat, no gluten — I’ll be “better.”

To all the people who believe what they’ve read on the internet about magical drinks, powders, ointments and mixtures that’ll make me better.

I will not get better.

I will live, and I will be OK. No, my hands are not contorted from my disorder, and no, that doesn’t mean my hands don’t hurt.

Yes, I can type — but that doesn’t mean I’m able to write with a pencil or pick things up with the very same hands that are incredibly able to type.

And yes, I did that amazing thing yesterday, last week or even the last time you saw me. Today, I can’t.

Yes, your loved one may have a condition, and she may do amazing things despite the pain. But my pain is different. My experience is different. You can put two people with identical symptoms and conditions side by side, and they can still tell you what they individually experience is different.

I want to inform you that despite it being a new year, I might not be so new. I will still be sick, and I will still have my good days, bad days, and somewhat OK days. No, rheumatoid arthritis will not go away despite all the praying, wishing and “miracle” fixes; I probably won’t be any different next year. We can hope, and we can dream and pray that it’ll be different.

But I want to ask you this new year, please change your outlook on my condition. Because just as you’re trying to lose weight, make more money or be a better person, I’m trying to leave my house more than once a week, take a shower every day and brush my teeth, do my hair and makeup and wear regular shoes that are not comfort wear shoes.

I wish to be a “normal” 23-year-old, so maybe while you’re trying to do all those things, make an effort to understand that I am trying to do things as well. However, repeatedly explaining to you that my disorder is incurable, just barely manageable, doesn’t make me feel like a normal 23-year-old.

So please, this new year, stop and think before you suggest something, give advice, or ask how I am. Because to be completely honest, you’ll probably know the answer the moment before you think to ask.

Image via Thinkstock.

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How I Responded to Broken Elevators as a Woman With Rheumatoid Arthritis

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I usually find Monday mornings to be quite disagreeable. I have rheumatoid arthritis and am physically limited due to joint involvement. I may have overdone it over the weekend, and pay for it on Monday as I get ready for work. I love my job, so it is usually easy to push through the stiffness and pain and get going for the day.

On this Monday, it was 0 degrees out as I was leaving my house. The driveway was ridges of solid ice, but the roads were clean and clear so all was well. I arrived at work on time and ready to see what excitement the day would bring me. I work at the State Office Building, which houses many state agencies. The building was recently renovated after a flood several years ago, and is modern and bright. The main atrium has a huge granite staircase with metal inserts to prevent slips. Even on good RA days I usually avoid the stairs, as my feet catch on the inserts and/or I do not feel super steady on my feet first thing in the morning. There are two elevators right in the lobby across from the magnificent staircase, and I usually head straight to them.

That day, as I pushed the elevator button, I realized it was not lighting up. A custodian came up behind me and stated that the elevators were not working. I turned around, cane in hand, obviously indicating that I needed support and assistance with walking. I asked how I was supposed to get upstairs, and he pointed to the stairs and told me that was the only way. I waved my cane and said I was physically disabled and the stairs would be difficult. He then tried to direct me out of the building, across a snowy icy courtyard to another building that may or may not have a working elevator I could try to use. I laughed out loud as a defense mechanism, as I really felt like either crying or screaming.

I sat down in a lobby chair while I gathered my wits. My choices were to go back out of the lobby to see if building security had a possible solution, or try to maneuver the stairs. I was fuming and felt my positive energy was being used up and converted to anger, so I took some deep breaths and decided to try to make it up the stairs. I took one stair at a time, gripping the railing with white knuckles. I made it without any issues or stumbles. Upon my arrival to my office, I found our department operations manager and relayed the situation to her. I asked about contingency plans for elevator outages, and gave her details on how this issue would have a severe impact on a wheelchair user. No answers so far, but I will stay on top of this. I have to as I may not be able to get up the stairs the next time.

I refuse to let this dictate how I will feel today or to replace my positive mindset. I also refuse to let blatant examples of ableism get to me. But I will use this situation to figure out potential solutions and to educate others.

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Photo via Thinkstock.

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Chronic Illness and the Constant Fear of Another Shoe Dropping

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At my last visit to my rheumatologist, I mentioned I had been having some discomfort in my ears and issues with my hearing and asked him who I should see about it. His answer, “an ENT – it’s probably from the RA,” stirred in me once again the anticipatory fear many with chronic illness feel regularly: What next? Is this the sound of another shoe dropping?

I noticed my tinnitus several years ago, but I didn’t think much of it. My bite has been off for years due to bad dentistry advice years ago, so temporomandibular joint dysfunction has been on my radar for a while as well and could account for some of these problems. However, in the past year, I’ve noticed new and worsening issues, including difficulty hearing and dizziness.

I’ve spent many an evening in the past month using ear wax drops in the hope I had some wax deep inside – to no avail. Does that mean my rheumatoid disease is now affecting my ears? Maybe. Maybe not.

That’s the thing with chronic illnesses like autoimmune diseases. When your immune system decides to attack your own body, you never know if or when another shoe will drop. My immune system has a preference for my joints right now. Will the next shoe be my GI tract? My skin? My lungs? My ears?

No wonder anxiety often accompanies chronic illness. Distinguishing between when to be concerned about a new or worsening symptom and when not to be is difficult. There is a chance the problems I am currently having in my ears could have a simple cause and an easy solution, but until I know for sure, I will be waiting for the sound of another shoe hitting the floor.

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Thinkstock photo by Leszek Czerwonka

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The Bravery I Found in Giving Myself Weekly Shots

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I have this photo of all my meds that I kept meaning to post to Instagram.

In the past year and half, I was diagnosed with both asthma and rheumatoid arthritis. I shared vulnerably on my own blog about the scary symptoms and frustrating process that led to each of those diagnoses, but I still had a lot of people asking questions, and I wanted to help them understand how my life had changed.

One of the biggest changes was all the prescription medication and supplements I was suddenly taking. Before asthma and RA, I was the type of person who didn’t always take something for a headache and only occasionally remembered my vitamins. Taking a fistful of pills every morning was a real challenge for me.

One Saturday morning, I was refilling my pill sorter, dropping tablets into each compartment–plink, plink, plink—like some twisted game of Mancala. I had prescription bottles spread out all over the table, and was matching that day’s pills to the bottles, the only sure-fire way I’d come up with to make sure I didn’t miss any.

“This is my life now,” I thought to myself as I surveyed the scene before me. I snapped a picture with my phone and hung onto it for weeks, trying to figure out the best way to caption it to help people in my life understand what I was going through.

The meds were helping me, and I was thankful for them, but managing all of them was one of the biggest challenges of my new life with chronic illness. I struggled to find the words to explain it, though, so I just kept looking at the picture and thinking about it, and then all of a sudden, the pills weren’t the worst part of my medication routine.

“I think we need to try injections,” my rheumatologist told me at my most recent appointment. I wouldn’t have to come into the office, though, he reassured me. They were injections I could give myself at home, with the same type of needles diabetics use for insulin.

I think I asked a couple of questions, but I don’t really remember. I was focused on keeping my composure long enough to get out of the office and into my car, where I totally lost it. If I’d felt a little weird and intimated when I had to use an inhaler for the first time, those feelings paled in comparison to this.

I cried the whole way home. I thought about all the scary ways these diseases have pushed me, all the hard things I’ve had to go through over the last 18 months, and this just seemed like the last straw. I was terrified. There was no way I could give myself shots. I just couldn’t do it.

I got home and talked to my husband, which helped, and then I called my sister, who is a pediatric nurse. “It’s going to be OK,” she told me. “We teach 8-year-olds how to do this at the hospital. You can do this.”

I still wasn’t so sure, though, so I went over to her house the next day and had her show me how to draw the medicine into the syringe. Then I let her give me the shot.

A week later, it was just me and the needles in my bathroom. I measured out the medicine just like my sister had shown me and then winced and pushed the needle into my skin. It didn’t feel great, but it wasn’t the worst pain I’d ever been in, either.

And more importantly, I did it.

Afterward, I sent my husband to the store for ice cream. I had earned it.

The next week, I gave myself a shot again. I did it again the week after that. And the week after that. I just kept doing this hard thing I had never expected would be a part of my life. It still kind of hurts. It still kind of freaks me out. But it has been, surprisingly, such an empowering gift.

Last night, after my weekly injection, I told my husband, “I just gave myself a shot. I’m not afraid of anything.”

It’s not entirely true, of course. There is plenty that still scares me. But immediately after I give myself a shot, I feel invincible. Like I can do anything.

There will probably be another scary chapter of these diseases right around the corner. So I’m thankful for these shots, no matter how much I didn’t want them at first because they’ve made me brave.

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Thinkstock photo by mabe123

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