11 Things I Wish Everyone Knew About Rhuematoid Autoimmune Disease

I am sure this isn’t the first time this post has been made. However, I have wanted to post it for some time. I was diagnosed with Rheumatoid Arthritis in April 2012. In the past 18 months, I have realized how little anyone really knows about what other people go through. I don’t expect everyone to get it right every time. I just hope this helps those around me learn.

1. Rheumatoid Arthritis really isn’t about the arthritis part. In fact, there’s quite a campaign to stop calling it that at all. It’s really Rheumatoid Autoimmune Disease. It’s an autoimmune disease, not damage. Yes my joints hurt, but at this point they don’t look like a damaged joint on an x-ray. That may come, but that is just the a piece of the puzzle. The joint inflammation came from my immune system deciding to go into overdrive. In the most basic terms, it’s like my body decided I have the flu. Forever. So, in addition to the joint pain there is fatigue, brain fog, and a lot of other fun stuff.

2. My immune system is suppressed. I have become a serious germ-a-phobe. I didn’t used to be. All the treatments available suppress the immune system. Both the medications and the RA suppress lung function. I’m not allowed to get live vaccines. I am very susceptible to infections of all kinds. I’ve been blessed up to this point in a way. My inflammation has stayed high enough to keep my white blood count high. However, that is dropping every time I go to the doctor. Pro: I have less inflammation. Con: My immune system is weakening. I need people to be aware of that.

3. It’s not the same from day to to day or even hour to hour. I am a sarcastic person. So, I have a little trouble when someone says, “But you seemed fine yesterday.” I want to say, “I noticed!” The trouble with this statement is often the tone, not the words. It’s a tone that you use with your children when you think they are faking an illness to keep from a chore or school. I wake up in a different body every morning. Throughout the day, if I sit in a weird position for too long, end up doing something I shouldn’t have, or the mood just hits my immune system, I can have drastic changes. One common problem is when I go to workshops. The loooooooong sitting in chairs I didn’t pick turn me into a rusty stick person. And yes, I do know which ones are rolling their eyes behind my back.

4. I’m tired. Yes, I know we are all tired. When the girlies were tiny and never slept, I was tired. When I was busy and didn’t sleep I was tired. But, I could eventually rest. Now, if I rest I may wake up and feel rested for a day. That’s rare. I am not claiming to be more tired than anyone. What I am saying is I am always tired. So, when you’re planning a night out, and I seem less than excited to join, it’s not that I don’t want to spend time with you. I am digging deep for the energy. Here is a great post about this feeling, called Spoon Theory.

5. I don’t really want to hear about your grandmother’s crippled hands and wheelchair. It’s not that I don’t care or empathize. It’s that it horrifies me. This is like someone saying, “I have breast cancer,” and you list everyone you know who died from it after slow and painful treatment process. I am FULLY aware of the possibilities of my future. I am also aware treatment process are constantly changing and improving. In the beginning of my illness, I was at a store. A very elderly woman with quite twisted joints (though I don’t know what caused it), fell with her cart right in front of me. I saw it coming, and I was too stiff and slow to get to her. I look at everyone’s hands. I notice who’s look painful and damaged. I have plenty of reminders of what can happen. Please don’t list more for me.

6. Take care in how you give advice. I don’t like to say not to give advice at all. Advice is a form of caring and attempting to help. However, tread lightly. Being pushy is a sure way for me to start singing the national anthem in my head while you talk. I also become weary of people telling me what I should and shouldn’t do. Particularly people who don’t spend everyday with me. I also am aware of the countless natural therapies, some of which I use. However, at the end of a lecture about a natural remedy, I usually feel like the person is telling me I am doing it wrong. I want to scream, “DON’T YOU THINK IF I COULD BE HEALED WITH A SIMPLE SUPPLEMENT I WOULD????” I do believe many of those options are helpful, and can even be used to treat people with mild symptoms. Understand this, my symptoms are not mild. Ask questions first. Most of the people doling out advice no little to nothing about my actual symptoms and what I am doing to treat this disease.

7. My children are fine. First of all, I don’t like hearing about how they are more likely to have this and other autoimmune diseases. As much as I hate this for me, I hate how my diagnosis affects those I love. However, my children are fine. I promise. Yes, they have to be a bit more physically independent. Yes, they are aware that mommy hurts. Tell me how this is going to ruin their lives. No, wait. That’s the point. Don’t tell me.

8. I know you’re sick of me talking about it. However, I get sick of hearing about some of the things you talk about. That’s what people do. Talk about the things on their mind. It’s what’s on my mind. I try to limit what I say. I try to not bring it up.

9. Nope. No one in my family has it. This one doesn’t really irritate me. It’s just a common question. As far as I know, no one in my family has it. There are a few people in my family have significant autoimmune diseases. Researchers believe this may be linked.

10. I try to have a sense of humor about it, but I am sensitive. I try to  have a sense of humor about this. I have to because frankly sometimes it’s funny. It’s also healthy to laugh about it. However, sometimes it strikes a nerve. I don’t blame the person. It’s just part of living with this. I don’t want my friends and family to stop joking about it. I just want them to be aware. It’s not their fault. Sure there is the occasional badly timed or poorly worded jab or joke. Most of the time, it upsets me because of my thoughts. Not yours.

11. I have to rely on a lot of people and I am not good at that. Doctors and nurses and lab techs and family and friends and coworkers. So many people that I have to rely on. I am a fiercely independent person. I refuse help I truly need. If I let you help me, take that as a sign of serious trust.  I am deeply grateful for the support network I have. I cannot imagine struggling through this alone or surrounded by people who expected me to struggle through it myself. My husband has helped me carry this burden more than I could ever explain. I am learning to ask for help. The gratitude that comes with this is immense.

While I truly would love to not have this disease, and I often long to live in a body that doesn’t constantly frustrate me, I am grateful to have been diagnosed in this era. This disease isn’t a death sentence anymore. I am also grateful for people who try to understand. Thank you for taking the time to learn a little!