I’ve always enjoyed getting the most out of life.
I’ve never been one to sit still – constantly going, hanging out with friends, traveling to new places, checking out new local hot spots. But, when I got hit with a ton of bricks (or at least that’s what it felt like at the time) and had to go out on disability, I went from living this go-go-go lifestyle to a much calmer, slower paced life.
At first, it drove me NUTS. Absolutely crazy. I’d scroll down my facebook feed and see all my co-workers still traveling and making the most out of their airline and hotel points. I’d see my friends having fun without me on a Friday night, living it up at a new restaurant that just opened. And I honestly felt as if everyone else’s lives were continuing to move forward and mine was at a stand still – maybe even moving backwards somewhat.
This really took a toll on me – mentally, physically and spiritually. It started causing me to have anxiety attacks, something I never had experienced before. My body felt like it was breaking down due to lack of activity. And spiritually, I just felt broken.
At first, my friends were sympathetic. They visited me in the hospital, they’d stop over my house or they’d shoot me a text. But, as my condition started to take the ‘chronic’ definition, they continued living their lives just as they had been and I slowly started sinking into a new routine of not doing too much. Their visits started being less frequent, their check ups became less and I became to feel more and more alone.
I was outraged. How could my friends leave me like that? Didn’t they realize what I was going through? Didn’t they realize how broken I was? Didn’t they realize that I was still me?
Becoming bitter, angry and depressed, I retreated from a lot of the people in my life. I’d rather lay in bed and watch Downton Abbey, then talk to my friends who didn’t understand an ounce of what was going on in my life. It was at that point that I really turned to twitter and started making some amazing patient connections online. I started meeting more and more patients, just like me, and I began to feel less alone and in better company. Each of these fabulous patients had similar problems when it came to their social lives. Friends who didn’t understand, having to cancel on previous plans that you made and having to deal with life at a standstill when others were out living “normal” lives.
My journey was a hard one, but fundamentally I found that becoming more mindful and working towards accepting my situation helped me through the really tough times.
Here are 5 extremely important tips
to remember when living with a chronic condition.
Your diagnosis doesn’t change who you are.
For a while, I hated leaving my house and talking to people. Every time I’d see someone they’d ask me how I was doing, how was my pain, was I back to work yet? Selfishly, I’d get sick of answering the same questions over and over again – describing how much pain I was in or talking about the ridiculous anxiety attack I had the last time I tried to leave my house. It was absolutely no fault of their own, I know that they were trying to be kind and genuinely wanted to know how I was doing. But it hurt.
The worst would be when I’d meet someone new and I’d get the dreaded “What do you do for a living?” or “Where do you live?” question. These two questions would make me sweat from every place on my body.
For the longest time, I had no idea how to answer. I ALWAYS gave a disclaimer. “I’m on disability, but I used to work for a top consulting firm, traveling each week to help integrate systems. I was great at my job and really enjoyed the fast paced life.” or “Well, I’ve lived in a bunch of places! I used to travel every week for work, so during the week I’d be in places like Austin or Tennessee or Brooklyn. I lived in downtown Pittsburgh for a while, lived up in Manhattan for a short stint, but right now my health is requiring me to be at my parents house.” I couldn’t just give a straight answer, I always had to qualify with what I USED to do or where I USED to live.
I’ll admit. I felt “less than”. I felt like I wasn’t the same person as I was before and I felt like people wouldn’t take me as seriously as they did when I had a high-powered, corporate job.
But guess what, that’s SO not the case. My diagnosis may have changed my career, my location, my daily routine, but it hasn’t changed ME. Who cares where I’m living or what I’m doing at the current moment. I’ve been focusing my 24/7 efforts on getting healthy and on getting back to the life I want to lead.
One of the top read posts on my blog is “You Talk Like You Were Once Great”. I had a friend corner me about all the disclaimers I threw out one day and it really helped change my perspective. He was so right. It doesn’t matter what I used to do or who I used to be, the person I am today is still an amazing person. My physical body may have some health issues to work out, but those physical issues don’t define ME.
Accepting this and moving forward can be a challenging task, but the sooner you start realizing that you’re still the same amazing person you were pre-diagnosis, the sooner you will start being happier in your everyday life.
Gratefulness, and appreciation for the little things, will change your perspective. Live in the present.
Shifting our mindset from one that focuses on the negatives and challenges, to one that focuses on the positives and lessons, can take time. BUT, when you put in the work to make that shift, you will see big changes.
“When you change the way you look at things,
the things you look at change.” – Wayne Dyer
I heard a great example of this the other day when I was working through a meditation pack on Headspace. Andy, the founder of Headspace, gave a perfect example. Imagine you walk down the same street everyday and each day you fall into a hole. Overtime, you may start to look ahead of where you’re walking to see the hole before you fall in it. Sometimes you may miss it and still fall in, but over time you learn where the hole is and learn how to go around it.
And the same goes for your mind and thoughts. If you start to become more mindful about your thoughts and start to shift your mind to focus on the positives in your life, you’ll start to identify with those instances a lot easier than before. Identifying the things to be grateful for, and to be appreciative of, will help you continue to shift that perspective.
Don’t be upset that you can’t do X, Y, and Z. Be excited and appreciative that you can do A, B and C. Each day what you’re grateful for may change, but it can really help to put your situation into perspective. By living in the present moment, and appreciating what you do have, you’ll begin to find solace and happiness in the everyday moments.
You can’t expect others to understand what you’re going through.
For awhile I was mad that people weren’t giving me the support I needed or reaching out like I wanted them to. Didn’t they realize I needed them? Didn’t they realize I wasn’t enjoying laying in bed and wanted to be out with them? Didn’t they realize I was still the same person?
It took me awhile to realize that these thoughts weren’t helping me, but causing me more pain. How could I expect my friends to understand what I was going through when they themselves had never been in my shoes? It was an unrealistic expectation. By worrying about these things, I was causing myself so much unneeded stress and anxiety. It wasn’t until I started becoming more mindful, that I started to feel a whole lot better about the situation.
Using the same technique as I talked about above, I applied it to the specific thoughts I’d have surrounding my friends and my social life. Whenever one of these thoughts would creep in, I would remind myself that I couldn’t expect them to know what I was going through. That I could sit there wishing for things to be different, but I had to accept the present and try to make the best of it. Once I started becoming more mindful of my thoughts, I was able to get my emotions in check, which really helped me to eventually accept my situation.
You must support yourself first.
Once my anxiety attacks started subsiding, I started making plans to go out and at least try to hang out with my friends. It was definitely in a different capacity than it had been before, but at least I was making SOME effort to get out.
I’d make plans and start getting excited about doing something other than just laying in bed. But it seemed a lot of the times the day would come and then I’d have to cancel because I didn’t feel well. For awhile I really could only do one activity per day. So if I had a doctor’s appointment, that was it. I knew that would take all of my energy and I’d be down for the rest of the day. It would frustrate me because I used to have the stamina to keep going and going, and now that wasn’t the case. I started feeling like my friends would never take me seriously since I canceled plans more than half of the time! Once those negative thoughts started creeping in, I’d mindfully tell myself that I had to take care of myself first.
You must support your mind, body and spirit FIRST. Taking care of yourself is the least selfish thing you can do. Why is that? Because when you take care of yourself, and are the best version of you, then you can show up to be there for everyone else in your life. Your family, friends – anyone.
Sure, we don’t want to disappoint others by canceling plans or having to modify activities, but if it’s something you must do for YOU, then do it. Putting your health first and foremost is the most important thing you can do. YOU have to live with your body, your condition, your pain. Knowing when you can push yourself and when you need to back off is something that you must honor and respect. The people who really care about you in your life will understand and support you when you need to do what’s best for you and your body.
You can still live in amazing life!
A psoriatic disease diagnosis, really ANY chronic diagnosis, can put a damper on the things in your life that you love, but I promise you, it’s not a death sentence. For myself, it meant that I couldn’t live at the pace I used to live, it meant changing my diet completely and it really caused me to have an overhaul in how I live my life.
I studied abroad in college. The first weekend there, the president of our school told us to have an open mind. To not judge things that were different as good or bad in relation to the way it’s done in the USA. To look at those differences and respect them for what they were – differences.
I gained so much insight and knowledge during my time in Europe, but I really feel like this life lesson was one of the best things I’ve ever picked up. As I traveled, I started seeing the way different people lived. Their houses, their careers, their lifestyles – and I tried my best not to judge them, but to respect them for their differences. When I first arrived in Europe, I was flabbergasted that things weren’t opened 24/7. If I needed something during the afternoon, or after 7, I would need to wait. It was mindblowing to me that people were ok with living such a relaxed life. By the time I left, I was excited to get my butt into a Walmart, BUT I really respected the culture and their lifestyle.
When I first went out on disability, I felt that culture shock just as I had many years ago when I first arrived in Italia. SO MANY THINGS WERE DIFFERENT! It was truly overwhelming. My symptoms, my emotions, my lack of mobility and independence. I spent many nights crying, praying and wishing for things to be different. BUT, then I remember back to the life lesson I had picked up abroad. Just because things were different, didn’t mean they were good or bad. Sure, I wouldn’t have put the symptoms I had in the “good difference” column, but overall, I needed to respect my life and realize that just because it was different didn’t make it good or bad… it was just “different”. And I needed to come to terms with that.
I wish I could tell you the transformation occurred overnight, but it didn’t. It took working on the other 4 tips for me to realize that I still have a pretty awesome life. I had an amazing support system who would be there for me no matter what. I had a roof over my head, food on my plate and a place to sleep each night. I had friends who still supported me regardless of my health. And I could still accomplish anything I put my mind to. Maybe my goals would need to change or be slightly shifted, but I could still make the best of my life.
We only get one life, and I decided I was still going to live the hell outta my life. There was no reason for me NOT to.
There are a lot of emotions that come from being diagnosed with any chronic condition. At first, it may seem that your life is over and that you’ll never be able to do the things you want to do. But, let my story be a lesson for you. You will have hard times. You’ll have flares that seem to never end, you’ll have pain which sometimes can seem unbearable and you may have moments where you doubt everything about your life. But, by remember these 5 tips, and giving yourself the time to process your emotions and really sink into your new “reality”, you can learn to live a life you love!
Today, my life is nothing like it was before I went out on disability, and I’m a-ok with that. To be honest, it took awhile to get used to, but now I prefer it. I truly believe that all of the obstacles I’ve overcome have helped shape me into the person that I’m meant to be. They have helped lead me down the path that I’m supposed to be living and they’ve truly helped me realize the life I love.
My wish is that in time, the same will happen for you.
As long as you’re willing to put the effort in, it absolutely can and will.
Wishing You A Pain Free Day!