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

I swear I’m not a Jerk…oh, and I’m not Pregnant!

As I am just healing from bronchitis that lead to pneumonia, I can tell you that going out in public is an act of courage. I often tease about my fear of buses, planes, theme parks, and pretty much anywhere public! A few weeks ago I took my nieces and nephew to Sea World. The day before was a serious battle of choices. I knew that going would mean I would get sick. How do you decide between unforgettable memories and a week of hell?

I cannot tell you the countless amount of times I have offended someone who is sick because I don’t want to be near them. This isn’t because I don’t care about them or want to be rude. In our society we are often pushed to never stop. Even when ill it is looked down upon to take a day off work or seclude yourself to heal. Yet we have growing numbers of people with autoimmune diseases.

An autoimmune disease in short is a disease in which the body’s immune system attacks its own healthy cells. Many autoimmune diseases are correlated with inflammatory conditions. Each and every one of my illnesses are inflammatory. Webster’s dictionary defines inflammation as “a localized physical condition in which part of the body becomes reddened, swollen, hot, and often painful, especially as a reaction to injury or infection.” So stop to imagine this for a second. How do you think you would look and feel if your esophagus, bladder, vulva, ovaries, intestines, hip, and limbs are inflamed 80-90% of the time? On the outside you look normal besides my favorite feature, a majorly swollen body (I could also add that when you’re sick your body holds onto calories, which means my body is always holding onto calories. This will be another tangent on another blog!).

My most prominent swollen feature I call my ‘Buddha Belly’. This came about because my belly is rock hard, huge, and you’ll often see me rubbing it when I think no one is looking. This is not meant to be offensive or ill humored; but as I will talk about again, humor is a good safety blanket. To get you back in the imagination mode I attached a picture of my belly you can see below.

With this picture and your ideas about your inflamed body please put yourself back into my shoes. When you wake up, and at the end of the day, inflammation is at its worst. So now picture yourself going about your day, each and every move you make, and think about the amount of inflammation you are carrying. On your way home from work you need to stop by the grocery store. While at the store, a woman asks you ‘When you are due?!” or you hear a child say to their mother ‘Mom, that lady is fat!” Or we can make it a really bad day and have someone confront you about taking a disability parking spot when you ‘clearly don’t need it’, and because of this they begin a lecture on ‘people who really need the spot that you are intentionally hurting with your selfishness.’

This is everyday, 365 days of the year. So tell me how are you feeling about yourself, about your body? I can give you a list of a few I often feel: exhausted, sore, fat, ugly, frustrated, angry, sad, and run down. Now I’m gong to make it a bit trickier for you. Take alllll of this and add two sick people you are working with at the office. You hear their cough, see their runny nose, and watch them touch the shared office supplies. You know your body is attacking itself because you can FEEL it, so what runs through your mind when you look at your kind sick colleague? FEAR.

If the body is already attacking its healthy cells then imagine how easy it is for unhealthy cells and bacteria to enter the body and attack. To keep myself safe I have to make calculated choices. I own endless bottles of sanitizer, keep wipes in my purse and desk, have tissues in every purse, etc. It’s easy to clean my space once someone is not around, but what do you do when that person is present? Cleaning after them, moving your seat in your weekly meeting, or cleaning your hands after shaking a new person’s hand are usually seen as truly offensive. How can I tell you that if you have it so do I? What is the smooth way to explain that I am not trying to offend you, but I am trying to take care of my body? This can be especially difficult when I’m already frustrated at the countless amount of people that judge me on my body without invitation.

Humor is the way I choose to handle it. Teasing about my condition is something I do almost immediately when meeting someone. Of course, when best I take the time to explain my condition and why I need space if you are sick. However, most people are in a hurry in this fast paced world. So this leaves me with fewer options. There is a fine line with humor though because this opens up the door for them to tease you about your condition too. No one is perfect. I’ve even had professors make fun of my illness to full classrooms.  I’ve walked in on colleagues making fun of me while making copies in the copy room.

This is where I am currently stopping to take a deep breath because I remember that I am not alone. How many other people in this world face this struggle? Too many to count. Having an invisible disability complicates the stigma, judgment, and relationship difficulties those with disabilities face.

This is where I ask you to think about everything I just threw at you. If you share this struggle, how do you best handle it? How do you wish you did? If you know someone or have a relationship with someone with this struggle, how would you like them to handle it with you? How would you best wish I open communication with you?

I ask for compassion and communication. This is where I also add that I am blessed to be surrounded by supportive friends and family (again, another blog for another time). Thank you for reading and taking the time to enter my journey.

<3 Chronic Pain Warrior