My Disease Does Not Define Me ... How I Perceive It & Combat It, Does

YOU are not your disease. Don’t be afraid to tell people you have a disease. For years I tried to hold it in because I didn’t want people to pity me and I didn’t want to elicit negative emotions. I pride myself on being a positive person who inspires others to be positive too. So telling people I had a disease or even talking about it seemed contrary to my very being. But when it comes down to it I’m more than just a positive person, I am REAL with my followers. I think that’s way more important than false positivity. And I learned the hard way that false positivity can cause major mental issues. I needed to accept the negative as part of a real whole life but instead I shut down. As I slowly came out of the dark, implemented new habits into my health regime, and began to improve, I realized that not being open and honest about what I was going through was one of my biggest mistakes. I told myself that because I was sick I would forever more be this walking pile of negativity to others. Right? Am I alone in feeling that way? I thought, “How could anyone be happy around a sick person”. But I know how now. You accept there will always be negativity in your life. You accept that some people won’t want to hold that, even the small moments of it might turn them off. But those people weren’t worthy of all the other amazing parts of you, if they are so willing to leave. And I’m not saying it’s OK to continuously publicly wallow in self pity, I’m saying just telling someone you’re not feeling well today is enough for them to be like “ugh, too negative”. And that’s alright. They’ve got there own stuff weighing on them, or they’re buying into the idea that life is only good when it’s positive positive positive all the time. That’s not true.

Life is tastier when bad things happen. Now I know that’s a fucked up thing to say, and I certainly don’t wish ill on any person, but once you’ve got “it” (whatever negative shit “it” is for you), you’ve got it, so you might as well get as much “good” out it as you can. Who knows what the future will bring, you might be cured, you might get worse, no one knows. All you know is that today is however today is. And if it’s possible, try to get as much “good” from your illness as you can. Some days you just can’t and that’s normal. “What the heck does she mean by “good”? What could possibly be good about having a debilitating disease?”. Let me level you with, having a disease is 95% the worst, but it does allow for 5% of learned perspective that I think is really powerfully positive.

For instance, every time I include a new thing to my health regime and it pays off, I feel very accomplished, intelligent, more healthier over all, now and in the long run, because this is something that will be a permanent part of my routine. I’m not doing anything fast and drastic, just slow steady improvements. I once said to my very sad Papa, “You have to try to think of the positive. Because I’m sick I will now be forced to live my healthiest life and that will pay off in the long run when I’m older”. I believe that. I know that. If I hadn’t gotten sick I would not have been pushed to do all the wonderful things my body thanks me for now.

Another is, I’m tough as nails! I get procedures done frequently enough and they are inevitably painful and uncomfortable, meh, I don’t even notice anymore. I had to get a large needle a couple weeks ago and was told this one would really hurt, it literally felt like a mosquito. Both the doctor and nurse were shocked. LOL I get the same reaction from medical professionals doing tests, all the time. It’s a weird thing to be proud of, but why not?! I’m a weakling physically but man I can accept and conquer pain. I’ve had years to accept it and get used to it. I know if you’re in the real heat of it, that sounds crazy, but trust me, it will eventually happen.

I’m also proud of how intelligently and determinedly I dealt to improve my disease. Every medical practitioner I’ve seen in the past couple years calls me one of a kind. Most recently, my Physiotherapy appointments for my damaged shoulder were supposed to last 7 weeks, but only lasted 3. They were so impressed and when I asked, “Why has this never happened before (at their office).” They replied, “Because people want a magical quick fix, they don’t do the work”. Oh. That’s not even something I can imagine, I do the work and I do it all day long, not just twice a day. LOL So that kind of determination, I think, is something to be proud of.

I feel liked I’ve learned so much more about myself and life, and those types of big learning moments unfortunately tend to happen during and after bouts of great suffering. I’m learning to accept that that is life. On the worst days I just can’t, but for the most part I’m able to welcome that. The past week has been a bad one with my usual symptoms flaring up and some new fun ones to add to the mix, but it won’t affect me now like it used to. I just believe so strongly that I’m going to push myself to do all the things I deeply want to do no matter what, so let whatever come, I’ll do everything I can to be healthy and continue to learn, that’s all I can do. And there’s my honest story. It’s both negative and positive because that’s life and I think that’s more inspiring than just positive platitudes. When you start telling people you have a disease, ya you might get pity and sadness, but once you show them your strength they will admire you all the more. Trust me. The key to a completely healthy life is honesty and self love. You’re a real full person, worthy of sharing your truth even if it makes some uncomfortable. Those who truly connect with you on a soul level will stick around and I have no doubt that some who were scared off will come back.

We are not innately negative people because we have a disease (physical or mental), that is only one part of us and even it can have some positive impact on who we are. Be honest, be true, this is your life’s journey, you can’t control every part of it, you can’t run from it, so don’t hide it. You are a multifaceted spirit, complicated and unique, you can’t allow one aspect to be your whole. The true you is not the person you were before you were sick, your true you is NOW. Life has a way of changing us, for good or bad, I believe that’s its purpose. I may be experiencing something bad but it will change me for the good. I decide. And so can you.