Not Invisible!

September 17, 2007 at 10:53 pm (family, myself & I, opinions, rambling, reflecting)

Unfortunately, I missed the boat on National Invisible Chronic Illness Awareness Week. It was from September 10th-16th. I’m sad that I missed this week, but I figured I would update about it anyway. This year’s theme was “Living with an invisible illness is a roller coaster..help a friend hold on“.

To me, those words are so true. I constantly feel as if I am on a roller coaster of highs and lows, and this roller coaster is not fun at all. It isn’t thrill seeking and adventurous, it doesn’t make you scream with pleasure. It makes you feel sick. Half the time people don’t even notice that I have a medical disability that causes me chronic pain. I suppose this is normally a good thing, as I hate having unwanted attention focused on me, but at the same time it’s difficult to have people think that I am faking, when I really am not. I know I don’t look it, and I look like your average 18 year old college student; but take a closer look. On my worst days, I hobble. I always walk with a limp, but sometimes it isn’t that noticeable. Today it is. Those really close to me, such as my family, are easily able to tell when I’m not having a good day. I get cranky. I limp a lot. I sleep a lot. They know all of the subtle things I do when having a bad day that I don’t even know I do. Laurie at A Chronic Dose wrote a very good post about seeing the scope of invisible illnesses. She answers all of the questions that people commonly ask us, or wonder about us. I found it so easy to relate to what she was saying in this post. Do you too?

People constantly think that I fake for attention. In grades four to six, my “friends” would joke around that I faked to get out of gym. If only they really understood, I would have loved to participate in gym, but I can’t do contact sports. Running is painful. So I would have to sit out each class. I missed out on a lot of fun times. Throughout my entire academic career, I have felt isolated and alien towards my classmates. Making friends was difficult because people thought I was strange. People probably still think I’m strange, but I’ve learned how to not let that bother me too much. Despite feeling so isolated though, I am a lucky person. I have a wonderful extended family, with people who really care about me and how I’m doing.

Laurie at A Chronic Dose also talks about those closest to us, the ones who easily detect bad days from good days and are there for us. Our families, our significant others, and our friends. It really isn’t fair that they are constantly over looked, nobody really asks them how they feel. I know it’s hard for my family, and it can be overbearing sometimes. My parents accompany me to every surgery, and every night I’m in the hospital one of them stays with me – usually my mom, as my dad works, but he has stayed with me too to give my mom a break. My parents would do anything for me; and I am grateful for them. My sisters would do anything for me as well. They are all MHE free – I don’t even know if they carry the genetic gene to pass on to their children. I would imagine that it is very hard for them having a sister with a disability. Kate (my 19 year old sister) and I are just 13 months apart. We used to be very close as children, but when we started school we sort of drifted apart. She would undoubtedly have to put up with rude remarks from her peers as well as my peers about my “gimpy” walk. That would be a tough kind of spotlight to have on, telling off your friends for being tactless and rude.

I’m sure all of my sisters have encountered questions such as “what’s wrong with your sister?” – especially after surgeries or when I really need to have a surgery. Those are the times that my MHE is most detectable; when I’m limping because the bone growths are cutting off my nerves and causing a lot of damage and pain, or after the leg surgeries when I’m using crutches, canes, walkers or other walking aids. Those questions are hard for me to face, but hard for them to face as well. Sometimes they get irritated with me, probably for not knowing. I don’t know for sure though, as I’m not a psychologist – yet.

So it’s hard for everyone involved. I may be the one facing the surgeries and annual doctors appointments, but my family is the one who sees me facing it and is at a loss for how to help and make things better. As hard as it is for me, it’s just as hard for them. I would like to thank my entire family though, for being the rock that has been solid in my life. Without my parents, my siblings (and you guys too, Karen and Joel), and my grandparents, I doubt I would be as strong as I am today. My support group is amazing.

Tomorrow, look out for what should be an interesting post on having a surgery. I have tried a new writing style for it, and I hope everyone enjoys it.

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2 Comments

  1. Laurie Edwards said,

    Thanks for the shout-out for my posts. I am glad that the themes resonated with you, and even more glad that you have such a solid, supportive group of people to be there for you!!

    Keep on writing!

  2. Jessica said,

    Thanks for stopping by Laurie! I’m glad to have found your blog! I shall, of course, keep on writing…nothing can stop me now, haha 🙂

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