My Voice on Advice

I was recently asked by one of my fellow chronic pain warriors, who struggles with a physical disability, what I advice I could give. I am no expert, but here are my thoughts.

1. The most important thing I ever learned was to listen to my own body. I know my body better than anyone else, including doctors. I have seen around 20 different doctors. Each of them has a different idea of what my body needs. This can be as subtle as a diet change to as invasive as neural spinal surgery. In September 2015, I tried a nerve block that went wrong. As my dearest friends know, I was unable to walk and the pain lasted weeks. What did I learn? Be your own advocate. If I listen to what my body needs then I can be my own advocate. Now, most of the time I am telling my doctors what I need, and then we figure out how we can get it. I read a ton of research, know most of the disability laws, and stay up on the latest news. I also kept a journal for a while that marked down what I did, ate, who I saw, etc. It helps to evaluate your good and bad days so you can make connections.

2.Try to avoid stressing out. Stress just increases pain and emotional pain. Remember that asking for help or getting the assistance does not make you any less of a person. In our world stress is a constant, so I know that this comes with an eye roll. However I will continue to preach self care, self care, self care. It takes practice (grad school taught me that). Don’t give up the fight to love your body!

3. Always remind yourself that you are working harder than most others around you. You are AMAZING because you do everything in pain. Pretty much you're a super person! So it's totally okay if you need more breaks or to do things at your own pace. My bathroom mirror is covered in self-affirmations and I post quotes around my house and office to remind me daily of how awesome I am.

4. Find friends who support you. I live firmly live by the belief, and I preach this as a therapist, A SOCIAL SUPPORT SYSTEM WILL GET YOU THROUGH ANYTHING! It took me some time, but I am now blessed to have friends that can accept my boundaries. Even more than that I have friends that still make fun out of my bad days, my down days. Also, make friends like me…those of us who struggle with chronic pain have to stick together. I've gained surprising new friends by being honest and open about my disease. We all need someone to yell to, cry to, or someone who can just be with you and not ask questions because they understand.

5. Give yourself time to grieve. As an individual who knows the able-bodied person they were, that they will never be again, some days feel pretty bleak.  I was told that I should grieve and move on. This is unrealistic and an unfair request. Chronic pain, illness, and disability ebb and flow. Some times we are worse and some times we are better. The grieving process is one we will always carry.

This one is the most personal one to me because of the depression I faced when I was diagnosed, when I relapsed at 8 years, and then my body began attacking almost every organ at my 10-year mark. When I was first diagnosed it took over a year for me to get through the stages of grief. At my 8-year mark it took me longer. At my 10-year mark, 11 months ago, I hit my lowest. I am still going through my own individual grief process.

My point being that you will need time to grieve. It's okay to be pissed off and sad that this changes you. It’s okay to feel desperate, terrified, angry, hopeless, and sometimes even euphorically happy. The grieving process is different for every person. Don’t put a time limit on yourself. Attend support groups, begin counseling, and maybe start a journal. Just don’t give up or fear you are alone. (National Suicide Prevention Hotline (800) 273-8255) 

6. Figure out what YOU need. Spend time getting to know your new self and body. Have fun with it and get creative. Take yourself on dates, try new things, and enjoy some of the old things you are still able to do.

7. Celebrate the small things. Along with the sad things comes a whole lot of resilience. You are stronger than many people, and this gives you a new view on life that many people will never have. Remember to love the small victories as much as the big ones. Every baby step forward is something to celebrate. Take the world in and find the beauty left in it.

8. Breathe!! Meditation and breathing have gotten me through the worst pain bouts. Pills don't usually help me, so finding a way to center yourself mentally to get through it will help. There are a ton of amazing mindfulness websites, but even better than that are therapists who can teach you and guide you.

9. Laugh a lot...as you all know I do this a little too loudly. In the good and bad moments be silly, do your feel better dance, and surround yourself with people who make you feel energized.

10. Altruism. Help others who struggle like you do. I know I went to the extreme by dedicating my life to helping people, specifically hurting individuals, but it feels good to know your knowledge may help others. It is also scientifically proven that altruism fights mental health issues (if you would like articles I have many! Or you can just pick up any Yalom book).

11. Practice telling others what you need. We cannot expect employers, friends, family, etc. to be mind readers. Practice on safe people first if this helps.

This is not a perfect list. So I would love for many additions. What advice would you give? What would you tell those you love you need?

What would you wish those in your life suffering with this struggle would ask you for or tell you? How do you wish you could help?

Again, thank you for taking the time to read.

<3 Chronic Pain Warrior