The other day I read a post on Thought Catalog called 10 Ways You're Making Your Life Harder Than It Has To Be. As I was reading, I got to thinking about how this list is so easily adaptable and expandable to include specifically living with a rare disease. To that end, and because I can't resist making a list, here's my take on making life harder than it has to be. Disclaimer: I highly value the individual experience and don't like to generalize, so take each of these with a grain of salt. Some of this may ring true for you or none of it may ring true for you. Only you know how you should live!
1. You lament the everyday.
I'm not saying you're not allowed to complain (though we all, myself included, could probably stand to do a lot less of it). Are you battling a new cancer diagnosis? Dealing with the death of a family member or beloved pet? Facing a layoff at work? Please, lament away.
What I mean when I say the "everyday" is that for many of us with a rare disease, there are things we may encounter every day that cannot (at this time) be changed. In my particular community, this means taking medication every six hours or every twelve hours. Those with cystinosis also may use eye drops every waking hour.
This may sound blunt, but I mean it kindly. If you are lamenting a medication that you have taken every six hours for decades, you're not doing yourself any favors. This medication is part of your life. A frequent part of your life. Do what you can with regards to efforts to eliminate its need (through fundraising for a cure or participating in research), but please don't let it steal your joy. Wasting angry words or thoughts on something that is a daily part of your life allows in a certain amount of negativity toward life itself. You don't need that.
You don't have to jump for joy every time you must engage in one of the daily activities associated with having a rare disease. That's probably as disingenuous as it would be if I jumped for joy every time it was time for me to brush my teeth (though I admit, I do like brushing my teeth). But allow your must-do routine to be either neutral or positive, because it's not going away anytime soon.
This one can have a profound effect not only on your overall emotional well-being, but also on the well-being of others. If you are a parent, try not to lament your child's everyday. In the rare disease community, that can lead to resentment of medication or even noncompliance later on.
2. Your rare disease is the star of your show.
Where you put your thoughts, there you put your life. It is healthy to embrace the unique traits that make you who you are. But too often it seems that we relate everything in our lives to the rare disease that we have, and when we do this, we are allowing IT to have US. Sometimes when we are young, we get people's attention by having a rare disease. I clearly remember being in a hospital room when I was a child and having at least a dozen doctors come in to look at my eyes, because seeing cystine crystals in a patient's eyes is something they had only read about in medical school textbooks. I was the star of the day because cystinosis was the star. Experiencing these sorts of things in childhood can naturally lead to giving your condition a starring role as you get older. Resist the temptation and let your other traits shine through. Remember that there are many other things that make you unique, and strive to share these things with the world.
3. You see serious illness in every ache and pain.
This flows naturally from number 2. I know I need to put this one delicately, and I remind you to see my disclaimer, above. Sometimes a mole hill really is a mountain and should be treated as such. But on the other hand, sometimes we are prone to make mountains out of mole hills.
In my own experience, sometimes a cold is just a cold and food poisoning is just food poisoning and these things have nothing to do with having a rare disease. Remember, each person is unique and you know when you need to be concerned. Just remind yourself not to worry too much when you're feeling a little under the weather.
4. You constantly compare yourself to others within your disease community.
If you have a rare condition, you may find yourself knowing most of the people in your country with that condition. Kind of bizarre, right? I mean, imagine having cancer and saying, "I know 90% of the people in America who have cancer." Totally ridiculous. And yet, this is something I can say with a high degree of certainty when it comes to knowing people with cystinosis.
Since your community is small, the temptation is to believe that experiences are universal and by extension, quickly make comparisons when they are not. The healthy thing to do is to accept that there is a ton of health diversity even within a rare disease community, and you are responsible for creating a great life for yourself within your own circumstances. Embrace what you can do, and don't worry about what you can't, even if someone else can! Jealousy is a wasted emotion.
5. You don't share (or you overshare).
No one wants to be around someone who only talks about his or her health condition. At the same time, we all want to be around people who are real and flawed.
Until I was 18, I was adamant that no one at my school know about cystinosis. I stand by the fact that this worked for me, because I had a support network outside of school that did know (and also knew that I didn't want it to be a huge part of my life). At the same time, I became pretty withdrawn during the two years I spent on dialysis because I spent so many hours at the hospital rather than socializing. I know that some of my friends would have come with me to dialysis, but they didn't know. My best male friend during that time (who now happens to be my husband) didn't attend my school and did come to dialysis with me a few times. He was probably intensely curious about some things but he didn't ask, because I liked to focus on other things. He was a huge support.
Don't go through your rare, beautiful life alone. Share with those you trust. Keep a good balance between silence and oversharing when it comes to your condition.
6. You fast-forward to the end of your life.
Like it says in the blog post that inspired this one, too often we jump to the worst possible conclusion. Be realistic but not doomsday-ish. Your life can be long and happy; it can be short and happy. But what a tragedy if it is long and unhappy. It's no way to live--constantly thinking about life expectancy or failing organs or whatever else that shouldn't be dominating your thoughts in the here and now.
I like the story I have to share about a deferred transplant. When I was 16, my native kidneys failed and I needed a transplant. I went on dialysis instead. There were many things that went into this decision, for it was a conscious decision both on my parents' part and my part. I wanted to finish high school without a health interruption because I was so academically driven (priorities, right? ha). My parents felt that if transplant could be put off for a while, there may be medical advances that would increase the success of a new organ when I got it.
While on dialysis, I didn't lament my everyday (see number 1). I had extra homework time in a recliner that just happened to be at a hospital. I didn't think about the dreary future or how people die on dialysis. I focused on being in my best health and enjoying what I enjoyed. I appreciated that machine that gave me life, and though the seemingly endless surgeries were a pain, I always lived assuming that my current dialysis catheter would work. And when it didn't? Well, I took that news in stride.
Turns out my parents were right. Between when I started dialysis and when I had my transplant, new advancements were made in anti-rejection treatment. A medication that had been the norm in 1997 was on its way out in 1999, with a newly FDA approved treatment introduced. I was on the old medication for a month when doctors realized it was toxic to me. If this had happened in 1997, I'm not sure what would have been done. But in 1999, I was promptly switched to the better medication which has proved a resounding success.
So live your life and don't let your mind travel to Doomsday. You just never know what's over the horizon rushing toward you as quickly as the earth spins and revolves (and evolves) into Tomorrow.
7. You cling to your safety net and accept what you believe to be your fate.
Take risks and do things believed to be impossible for you. You'll be surprised where you land when you jump.