By Julie Cerrone
I suppose no one really plans on going out on disability, but I was shocked. I thought I’d have my surgery, work from home until I could travel again (estimated 2-3 weeks) and then be back to work full time. Little did I know that that would NOT be the case.
Having to deal with the magnitude of going out on disability was not something that I really needed to add to my already all-consuming health problems. It didn’t help my anxiety issues at all either, that’s for sure.
It wasn’t until I started getting the support I needed, from a therapist and from others in similar situations, that I really began to grasp my situation and realize that just because I’m on disability doesn’t mean I can’t still live a great life. Sure, things went from 100 mph to 0 mph quite quickly, but that didn’t mean I still couldn’t be happy or enjoy life.
And I’ve learned a few things from being out on disability:
1. Control the Things You CAN Control
Growing up in a family with strong Italian tempers, having control is something I grasped at an early age. I thrived on being in control and when something was out of my control I wasn’t a fan. When you have health problems, it can feel like your world is spinning out of control . . . very quickly. Sure, we may not have complete control over if our bodies are going to attack our platelets or whether our joints will swell to the size of Texas, but what we can do is start to look around and control what we DO have control over. Or better yet, work on relinquishing control over the uncontrollable and focus our efforts on what we do have influence over.
For instance, I started noticing that certain foods made my inflammation worse. That’s when I decided to do something about it and take control of my dietary choices. I went through an elimination diet and identified foods that exasperated my symptoms. Then, over the course of a year and a half, I experimented avoiding these foods, adding in new foods and focusing on specific food groups. What I quickly realized was that I may not have complete control over my body, but I do have complete control (within reason) over what I give my body as fuel. So, I try to make the best possible choices that I can. This gives me control over SOME aspect of my disease and really helps to balance the feelings that my life spinning out of control.
2. Expand Your Support System
Having the right support is KEY. I’m not discounting your family and friends as being an amazing support system, but there is something so comforting in the words “Me Too.” It’s completely the reason why I decided to become a mentor with the National Psoriasis Foundation. Being able to talk with someone who knows what you’re going through is so comforting and reassuring. You’re not crazy for feeling the way you do. You’re not being a baby about your situation. You’re not alone!
The first taste I had of this was at a support group that I attended. It was a group of women, from all walks of life who were dealing with difficult situations. Although we all didn’t suffer from the same problem, we could completely relate to what each other were going through. Everyone has something difficult in their life. Then, getting on my computer, I found tons of other patients – from Facebook support groups to twitter chats to online forums. There are so many amazing patients online, basically offering 24/7 support. I urge you to get online and do some searches on your diagnosis. I’m willing to bet you’ll find many others who are in the same boat as you.
3. Create a Daily Schedule
I started working with a health coach about a year and a half into my disability journey. It proved to be one of the best investments I’ve ever made. One of the best tips he ever gave me was to start to adhere to a schedule. This isn’t the easiest thing to do, especially when you don’t know how you’ll feel one day to another, but having a routine gives you a sense of purpose. It gives you motivation to get up and get out of bed. One of the biggest problems those on disability can have is getting into a rut of doing nothing. This actually can make your health problems worse!
I started simply; in the morning I’d get up, drink a full glass of water, do some mindfulness meditation exercises and then get on my mat to do some yoga sequences. No matter how I was feeling I would try to get up and get on my mat. Some days I spent my time in child’s pose not really doing much, while others I was able to flow through some challenging sequences. Wherever I was that day, I would offer gratitude and appreciate it.
Just having a routine helped getting out of bed a little bit easier. I also extended routines to the rest of my day. For example, midday I would have a cup of tea and journal, at night I would put away my computer and focus on family or watching TV. Small things like this can make huge impacts on your day!
4. Start a Gratitude Practice
I’ve never been an ungrateful person, but I can definitely say that I ran through life never stopping to smell the roses. I was always on the run and thought I was living a fabulous life. What I didn’t realize was some of life’s greatest pleasures can come from the simplest of things. It wasn’t until I was out on disability that I began appreciating the ability to get out of bed, became thankful for the days I could walk up the steps without having to stop 3 times to catch my breath, and stopped to really think about the love and support I have in my life.
Each day we may have numerous negative things happen to us, BUT within those negatives there are ALWAYS positives. No matter what – there always is a positive. It may take you awhile to come to the full realization of the positive, but it’s there. One of the most gratifying and helpful practices I’ve started since disability is my gratitude practice. It makes you realize that just because it’s a bad day, doesn’t mean you have a bad life. The simplest way to start a gratitude practice is to start a gratitude list. Every night before you go to bed write down the things that you’re grateful for that day.
Example Gratitude List
- Getting out of bed
- Taking a shower
- Talking to Barb
- Carole making me dinner
- Having enough energy to practice yoga
- The insurance company working with me on paying a bill
- Making it on time to my doctors appointment
In any given day there are a million and one reasons to be grateful. We need to shift our perspective to focus on them!
5. Be Present
Dwelling on the past or worrying about the future can hinder us from experiencing the here and now. There are so many wonderful and beautiful things about life that we can miss if we’re constantly wishing we could go back to 5 years ago or crying that we’re not where we thought we’d be in life. Once we start to realize that we can’t change the past, but we can influence the future, we can start to live in the here and now and make choices in our lives that cultivate happiness. Don’t focus on the day when all of your ailments or challenges are gone, but focus on making today as great as it can be.
Julie Cerrone is patient advocate, speaker, and blogger dealing with psoriatic arthritis, avascular necrosis of the femur, and complex regional pain syndrome. She has also battled with melanoma, depression and anxiety. Having to put her IT consulting career on hold while on disability, she’s been focusing her efforts on advocating for patients in similar situations. She appears here in affiliation with the National Psoriasis Foundation.
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