Thursday, 25 September 2014

The Young Empathy

I've touched base upon this topic before, but I would like to again, just because I find it fascinating.

Since I was very young, I've gotten along better with people who were older than me. It wasn't until I was about fifteen that I began to get along with my peers. Regardless, I've had the ability to talk with adults and preferred the company of a more mature person than people of my age (though not always). But the one touchy topic I hate to bring up with adults, especially older adults, is my psoriatic arthritis. Believe it or not, I prefer telling other young people about it rather than older adults.

Of course, this isn't always the case, but a good portion of the times. Adults often compare me to themselves, who are beginning to wake up with an achy back or their hands aren't what they use to be. More often than I care to admit, they'll begin to compete with me to see who has it worse; I like to let them win so they feel special. Sometimes they just say I'm too young, or they assume it's not so bad because of my age. I even get brushed off because I sound like a little kid trying to sound grown up. Their reactions to my medicines are another story completely. In rare cases,  I've had adults pick on me because of the way I'd move. I've gotten a whole slew of reactions from adults, and though many are very nice, there are times I wish I didn't say anything at all. Especially because the arthritis tends to become my identity to them.

Telling people my own age has usually reared better results. Not as much when I was younger than about fifteen, but even then it usually was a better reaction than the gym teacher who told me I have a stupid run. I've gotten people who questioned or didn't believe me, but not a lot to make a difference. Most people just ask me if I'm doing okay, or even just say "wow, I didn't know that" and will ask me how bad is it or to explain. Sometimes, people even have siblings or friends with arthritis and will tell me that. Recently, people seem to really care when I tell them I'm chronically ill, especially because the times people find out are often when I'm limping or need a rest. But it's often something they don't bring up much yet don't forget- they know who I am, not my disease.

I don't know why I get the results that I do- most would think it would be the younger people who are less empathetic. But I'd like to also mention there are a lot of adults who care a lot and lots of young people who really don't care at all. I'm just mentioning am odd pattern.


Thursday, 18 September 2014

I'm Happy

There hasn't been any commotion here on the blog, or on any of my social media. Normally it's when I'm not doing well that I don't write because it's harder to concentrate and I save my spoons for what absolutely must be done. But as of the past weeks, it's actually because I'm doing very well. In fact, the past few weeks have been some of the best I've ever had.

With the start of a new school year came lots of changes, but I certainly embraced them rather than tried to keep things as they were: Change is very good, and sometimes you have to be the change you want. There have been lots of nice things that have come my way lately, which I've been very fortunate for. I'm walking and moving more than in the past, and I know I am stronger now: I've even gone out dancing a few times. Instead of feeling like a loner in a group, I feel part of a large community of friends, and there has never been a time in my life when I've felt more accepted. Even passions I've always had have grown significantly more, and so has my confidence.

To sum it up, I am happy.

But I still have arthritis and it still hurts. My joints throb in the morning and ache when I'm tired. I still can't wear nice shoes, even ballet flats, on days I'm doing a lot of walking because my feet will swell to unbelievable proportions. I still take Enbrel twice a week (much to the entertainment of my friends). I snap, crackle and pop. I'm not close to remission. But that's okay: I'm happy with where I am now. Being in remission won't fix my problems or make me happy. I did that.

Thursday, 4 September 2014

Alone

Humans are not usually a solitary species. We form pacts and herds: Sometimes our pacts are brought together by blood, and others a common interest. Some pacts intimidate and others are together because they feel intimidated. It's perfectly normal to want to be in a group and belong. However, there is nothing wrong with being alone.

It takes a strong person to stand on their own, though they may not feel strong at the time. In fact, they may not feel confident at all and long for their own group. But there is bravery in a person who walks into a new area, filled with new people for the first time. They know the opertunity that is involved with leaving their group, but that first step is walking alone.  There are many an opportunity we would miss if we hadn't been alone.

Our groups intimidate, while one who is not afraid of the idea of eating alone is not. They may find they get chances they would never have if they were in a group. People would be too afraid to speak to them, or figure they would not want to branch out when they are constantly accompanied. Being alone invites new conversations to begin. When we are alone, we may go where others normally would not. And if you hadn't been alone,  you wouldn't have  discovered the treasures that are awaiting us.

But many don't feel this way. They feel inadequate if they cannot prove to the public that they have friends, which is human nature. It's scary to walk around alone, in a world where groups can seem closed off from you. However, I ask you to take a walk by yourself. Do something alone. You may meet a new friend or discover a place your friends may never go. And even if you don't, you showed the world your confidence in standing alone.

Alone is not a bad thing if you are not lonely. Anyway, one can feel perfectly lonely in a large group.

Wednesday, 27 August 2014

Blood Donation Blues

I have to admit, I've said "Having arthritis is so stupid" in a serious conversation. It's a very frustrating thing to have. Insulting it doesn't take arthritis away but it does make you feel a little better. I think the thing that's so frustrating is that much of what happens when you have arthritis is out of your control. You really don't get much choice in things you want to do when your body isn't well, especially with a disease that isn't always well controlled.People commonly have dreams, or rather nightmares, about losing control. But it's very hard to deal with something out of your control in real life, especially the way it so intimately is involved in your world.

A few months ago my school was advertising a blood drive, and I was very excited. I had always wanted to donate blood, and my friends and I were going to give together. But being the person I am, I did my homework before the day of the blood drive. I found out that people with autoimmune diseases which are not in remission are not able to give blood, nor are people who take biologics. It makes perfect sense, but I'm still really upset that a part of me can't be used to help someone else. I've been told the only thing that matters is I wanted to help, and that counts in a world where many don't, but it's no consolation. It also makes perfect sense people with autoimmune diseases can't donate blood marrow, but you can bet your buttons I was upset at that news too.

It always seems like arthritis keeps me from the cool things I want to do- blood donations, certain roller coasters, standing for three hour studio classes, dancing like a normal person, and being able to chew gum for longer than a minute. Of course, it almost never keeps me from doing what I don't want to do! I'm physically capable of doing home work, doing errands and chores, and sitting and watching while everyone else has fun. Sometimes I enjoy myself more when I'm with adults than when I'm with people around my own age who are so filled with energy and nothing stops them from doing what they please. Except the threat of being arrested, of course. Sometimes I can't tell if it's the lack of control of my body or if it's the jealousy that is more painful.

Wednesday, 13 August 2014

The RA Lie

I've been told a lie under any circumstance is wrong, but there are times the truth is not understood. I don't encourage lying, but I understand it. That is because I lie about my diagnosis.

Rheumatoid arthritis isn't too common, but most people have at least heard it's name in passing. But compared to psoriatic arthritis, it's practically a celebrity. RA is just more commonly diagnosed, so it's more likely to hear about. In fact, many people with psoriatic arthritis will not be diagnosed or will be misdiagnosed with RA due to rheumatologists overlooking psoriasis or because you just don't have psoriasis (my case). I was said to have JIA when I was younger, until another rheumatologist distinguished it as juvenile onset psoriatic arthritis due to my family history, nail changes, and many other distinguishing symptoms. But even then, I've been told many times I could pass as having RA.

If you tell someone you have psoriatic arthritis, they look at you funny and ask what language you're speaking (Latin, actually). Sometimes they'll hear the arthritis and say "Oh, so it's like for old people?" But if you tell someone you have rheumatoid arthritis, they mostly either get it or tell you that their grandfather has that (bonus points if they tell you that you're too young for that). So, when I need to get my point across quickly (like to a security guard who asks why I have prescription pills with me, for example) I just say I have RA. I don't like to do it, but when I'm in a hurry it is a life saver. But any other time I tend to explain that it is psoriatic arthritis- I like spreading awareness.

But even when I've explained to people that my disease is like RA, but with a few differences, I still have a difficult time. They assume it's not as severe as RA ever will be, or that it's not serious. In fact, I've been told I'm very lucky it's not rheumatoid arthritis. But this is not as true- I have been told by rheumatologists that my PsA is very similar to RA in it's pattern and course. It's just I don't have the RA positive lab work, usual swelling (usual swelling, I do have swelling though) or redness. I have had nail problems, organ problems and many other fun things though. Call that unserious.

Sometimes it's easier to lie. I didn't say it's the right thing to do though, I wish I could do the right thing and be honest, but people give me such a hard time. I wish I could say "I have psoriatic arthritis" and for once have someone know what it is. I know many people won't agree with this. To be honest, I feel very guilty. But I'm also very tired of arguing that I have a valid diagnosis. I hope you understand.

Saturday, 2 August 2014

After He Left

I never liked him, and I don't think he liked me. That was fine by me. I was very quiet and an easy target. He was very loud and brash, and even at my ripe age of eleven I found him extremely obnoxious. I was glad when we didn't have classes together- it meant I could get my work done without comments that turned me red in anger and embarrassment. I was often picked on by my classmates, but he made my blood boil- somehow, he always knew just what to say or do to make me angry. One time he sprayed a pungent cologne in my face, and laughed when I scowled. Every day, I wished he would go away. I hated him, and I don't think he ever liked me.

I haven't thought about him in years, and I don't think he thought of me either. Why would we when there was no reason to? We went on to go to different schools in different towns, and we never crossed paths again. With no mutual friends- not even Facebook friends- there was no reason we would ever need to remember each other, let alone keep in touch. In fact, I was happy to put him and many others in my past when I began school at a different town. I had made a new start for myself and it made no sense to dwell on the boy who picked on me when we were little. I never had to think about him, and I'm sure he never thought about me.

I saw his picture the other day, but he probably never saw mine. He grew and became a young man with hard eyes and short hair. Still, I can only picture him as a smirking boy with floppy hair. I flipped through the 'student biographies' book my class made when I was ten years old. Next to his name, he said he wanted to design exotic cars. Mine said I wanted to be a doctor. My, how things have changed. I never thought about him until his very abrupt death this year. Even though I haven't seen him in years, his passing still made me upset. Every now and again he slips into my mind, and I wonder why he left. But that doesn't matter much anymore as there is no turning back the clock, so I think about the times he picked on me because he loved the way I got mad- it was funny to see me turn red. And I finally laugh, after all these years.


Saturday, 26 July 2014

When I Lost My Voice

People from my school would say I'm very quiet. I tried not to talk too much because I was afraid that I would come off as some loser. When I spoke, my voice would crack and shake, I'd trip on my words and I would turn red in embarrassment. Speaking tended to be humiliating, so I stopped. I was more open when I was younger, but a few years ago when a class burst into laughter after I spoke, I stopped completely. I didn't want to be judged because I wasn't an eloquent speaker, so I resorted to not talking very much. My exception was for occasional one liners that would get some laughter and boost my confidence. I loved when they laughed, so I would try to open up more to be funny. Even then, there were times that only got me picked on so I would retreat and picked my battles with more care. The only way people seemed to like me is if I didn't have a voice, and I accepted it.

It was in January that an academic society I belong to began preparing to induct several new members. My society leader approached me, and asked me to speak at our ceremony. I was very apprehensive- though it wasn't a long speech, it would be said in front of many of my fellow peers. But I accepted anyway. I practiced for a very long time, and at rehearsals I was made to repeat and correct myself despite no one else being guided as much. I didn't pay much attention to anyone else's speeches, because I was too busy preparing myself for mine.

On the night of the induction ceremony, everyone was dressed primly and properly, and donned ceremonial robes and shawls (I know, it sounds like a cult). Once the ceremony began, I waited for my turn to speak. Once it was my moment, I stood straight and tall. I looked at the audience, took my time and spoke loud. I even tried to sound confident. After I had finished, I realised I did a good job and that I could speak if I had confidence in myself. Additionally, I listened to the speeches of my peers: many stumbled, stuttered, rushed and blushed (hey, that rhymed!). Maybe it wasn't just me.

I was approached by several people afterward and congratulated on a speech well spoken. I beamed. But my favourite thing I heard was, "Elizabeth, you have a beautiful voice: I wish I would hear it more." After being told my voice was ugly when I was young and then convincing myself of it as I grew older, it Was exactly what I needed to break my silence.

Polite silence is a way of life. I'm only just beginning to get my voice back, though I relapse back into  being quiet sometimes. There are lots of times I feel humiliated because I talked more than I should have. I apologise quite a lot for talking. But I realise that the most powerful thing a person has is their voice, and taking it away leaves one with very little.