“Too young.”

That is a phrase I have heard a lot in different contexts since I’ve been dealing with chronic illness.  I’ve been told I’m “too young to be this sick”, “too young to have to use a wheelchair”, and “too young to have to use a walker”.  Most recently I was told I’m “too young to increase my dose of pain meds” by my pain management specialist.

I went to my monthly pain management specialist appointment last week.  I’ve been having a lot more pain some days lately.  Stabbing pain in my joints that wake me from sleep and make me gasp in pain when I walk (but yes I’m still walking 99% of the time!).  I went to my appointment with the hope that I would get some relief.  But my doctor felt that I am “too young” to increase my pain meds.  I left feeling disappointed, a little angry, and still in pain.

On one hand I understand her concern.  If I have to keep increasing my pain meds now, what will I do in five, ten, or twenty years for my chronic pain?  What will I do if I end up in the hospital with an acute flare of Autoimmune Pancreatitis which is extremely painful and no pain meds will work anymore?

But on the other hand, I’m in pain now.  And despite what people what people might say, the unfortunate reality is that I’m not “too young” to be in this much pain.  And my age doesn’t make my pain any less painful or any less valid.  And my age especially doesn’t make my pain any less deserving of treatment.

Overall I’ve been happy with my pain specialist doctor.  I’m grateful that she is willing to prescribe me pain medication at all.  I went through several doctors before her who flat out refused to treat me because of my age.

The crux of the problem I think is that chronic pain is invisible.  No one can see my pain.  My pain specialist doctor certainly can’t.  Only I can feel it.  However, though my pain is invisible, I certainly am not.  And I cannot let my invisible pain (nor any of my other invisible illnesses) make me feel invisible.

So what do I do?

I need to speak up for myself and advocate for myself more.  I cannot let myself feel intimidated about telling my pain specialist that I disagree with her decisions.  If I shrink back and keep this to myself, I make myself invisible as my pain.

I also need to share my experience with the people in my life, so they can understand what I’m going through.  I’m not talking about whining about being in pain, but, in the appropriate settings, tell the people in my life what it feels like physically and emotionally to be in my shoes.  Part of that is this blog.  Sharing my journey on this blog helps me feel empowered and lets me make my invisible illness visible.

The bottom line is I am “too young” for just one thing… I am “too young” to let this beat me!

This week is Invisible Illness Awareness Week!  Nearly 1 in 2 people live w/ a chronic condition, most of them invisible. If it’s not you, it’s someone you love.  Help spread the word!

You have to take the good with the bad. I subscribe to this philosophy not just when it comes to my life but also when it comes to my favorite hobby – scrapbooking.

I started scrapbooking almost two years ago now. My mom had made me a beautiful scrapbook for my Bat Mitzvah when I was 13. She promised my younger sister Danielle the same thing. But life got in the way and my sister’s Bat Mitzvah scrapbook turned into a middle school graduation scrapbook then a high school graduation scrapbook and finally a college graduation scrapbook.

As Danielle’s college graduation approached my mom still hadn’t started the scrapbook. But I figured maybe I could help. After all, I was home all day with nothing to do. It might even be fun, I figured. I had no idea I would end up loving it so much, that I would find a hidden talent, and a passion… well more like an obsession.

When all was said and done, my sister’s college graduation scrapbook became a three volume set encompassing her entire life up until that point. It was time to move on to other things, so I started in on my own life.

While going through my own pictures from the last several years, there were many pertaining to my illness. Hospital stays, doctors appointments, and so on. There was even a birthday I spent in the hospital.

At first I was hesitant to include these not so happy memories in my scrapbook. But I realized that these were experiences that I also wanted to remember. These bad times in my life are part of what makes me who I am. So I put them in.

The actual time I spend scrapbooking is therapeutic. It exercises my creative muscles and helps me relax for a few hours while I design and arrange, cut and glue, label and decorate.

It’s actually rather therapeutic to scrapbook memories of my illness. Once it is scrapbooked, it feel more concretely in the past. And it can help me look to the future. For instance, I did a page of my me taking my first few steps when I first started walking again. Now I am able to walk around a store! I can look back and remember it and see how far I’ve come!