Give Love

In the world of chronic pain and autoimmune diseases, belief is a hard thing to come by. I think that this is generally something, as humans, that we struggle with. We want answers and the truth. Yet we are so jaded and confused by ambiguity that we have a hard time believing in anything completely. I think this is why even those I love most struggle to believe me. What they are missing is that by not believing me they are not believing in me and the strength I have to overcome.

When I first was diagnosed, I remember a colleague, and friend, stating in front of a room full of co-workers, “So your disease is psychological and all in your head?” Yes, I want to pretend to be ill just so everyone around me will not believe me. It was always a life goal (NOT). A few weeks ago, someone who I thought was family drank alcohol and let down her guard. She proceeded to mock me by making fun of how I carry myself (this included limping, shaking, leaning over in pain, etc.), the things I say when I’m in pain reaching out for help, and repeated “poor disabled me.” Just a few days ago a family member made fun of someone with Fibromyalgia. To attempt at not offending me she first said, “I know you’re in actual pain, but this person…” What makes them so different from me?

Why is it so difficult for us to believe in something we cannot see or feel ourselves? I often wish those closest to me could feel what I do for 24 hours. Why is it so difficult giving love to those in our life by accepting their truth? Having an invisible disability is one of the hardest things I have ever faced. I have learned how to conquer my pain, how to ask for help, how to advocate for others, and how to balance my life. However, I still do not know how to perfectly cope with most everyone around me not believing me. 

Through the stories I shared above you can see that even those who have carried me into bed, held my hair back when I’m sick, tried to feed me when I can’t move, and wiped away my tears when I could not breathe from pain STILL DON’T BELIEVE ME! Some family members share their doubts, and we can have constructive conversations about it. My mother kindly admitted that she assumed “people like me” were drug seekers. I admired her for her candor. So what did we do? We talked about it. I communicated my truth, and shared that I’m sure there are some out there who are drug seeking. Most importantly I tried to impart that WE ARE NOT ALL THE SAME and A FEW BAD APPLES DOES NOT MEAN WE ARE ALL THAT WAY! Most of us are facing real struggles, and are being judged based on an impression a few individuals left. I think this is a lesson we can apply to many issues today.

We are all human. We are all carrying pain in different ways. So why don’t we just give love instead of hate through disbelief and prejudice? When someone first discovers my 5 illnesses, or even just 1 of them, the way they treat me automatically changes. What is it fear, judgment, or false expectations? I would love to know. Due to this change in treatment, I often choose to hide my disabilities 85% of the time. I know I am not alone in this. The stigma around being ill is so harsh that telling employers, professors, friends, and dating partners is absolutely maddening and terrifying.

Often I am treated as if I am just seeking attention, drugs, sympathy, pity, or an excuse to have things easier on me than others. It is easy to get angry and passionately volatile. Whether I am keeping it a secret or being judged, I am angry. Truthfully, anger is just an easier way to protect myself from hurt. There is nothing worse than shame. I WILL NOT BE ASHAMED OF MY TRUTH. 

I did not ask for my illness. I did not ask for the assaults and abuse that caused my illnesses. Yet, these illnesses have taught me more than the ignorance I face. It has taught me to reach out to those in underprivileged situations. Most of us haven't chosen this path or the privilege our society is based around. We need to give love, support, peace, kindness, and throw prejudice and hate out of our thoughts and actions.

So, how best are you supported? How have you been affected by the stigma of chronic illness or an invisible disability? How have you inadvertently hurt someone with these struggles? How do you think we can best communicate these issues?

Never give up the fight. Remember our battles give us awareness that is deeper and at times more painful. I believe that this gives us the responsibility to show others, through our actions, how to give love and acceptance. I am not perfect at this, but each day I hope to fight to be better and love harder.

<3 Another Chronic Pain Warrior 

Thank you, but no thank you.

After a long break from writing, due to illness hitting me, I couldn’t help but begin here. If someone had told me, when I was younger, that at 25 I would be stuck in an 80-year-old body I would never have believed them. When I think about my illness what first comes to mind is a giggle and the thought “talk about a reverse case of Benjamin Button.” As a child, I used to wonder if someone in coma could hear us, and be screaming inside. Now I know first hand what it feels like to be Rose standing at the edge of the Titanic: screaming in a room full of people who can’t here me. Screaming from the inside while I slowly walk to the bathroom to vomit up the little I can keep down. Covered in goose bumps, my abdomen squeezing my insides, my vulva on fire, while I throw up until the dry heaving empties me completely. Months of torture have passed because my insurance company has decided to “treat” patients now.

I am in a waiting room surrounded by young and old people coughing, moaning, and people lying out on multiple chairs. No, this isn’t the hospital ER, but my pain management clinic. Minutes later I’m looking at my doctor who is swearing under his breath because insurance companies have decided to pull this drug from handfuls of patients. They are not willing to budge no matter how many letters we send in, no matter how much evidence there is that it was helping. This is it. The moment I was terrified would come. 3 medications swiped from under me. Here I go back to who I was at 20 years old when first diagnosed. I am headed deeper into the tornado known as chronic health problems.

During times like these, the advice I get from others tends to increase. I have to be honest and say that I can’t take anymore unsolicited advice, messages that tell me to buck it up, comments about how I’ve let myself go, comments about my appearance, comments about how if I just pushed through like strong people I wouldn’t be here, and comments about how I must be doing something wrong.

When someone first hears about my illnesses I usually hear you’re too young, you should try fill in the blank, or I knew someone who tried…a better diet, new medications, surgeries, exercise, magic crystals under my pillow at night, allergy treatments, Chinese herbal medicine, and the list goes on because you name it I’ve heard it. I’m sure it would surprise them that I’m on a strict diet, I exercise every chance my body allows, and I have tried probably everything they have mentioned. I believe that when people hear about chronic illness they feel fear or helplessness. It makes sense that someone’s first response would want to be to help cure the problem. Illness in our society is a weakness. So we must find ways to make the person stronger. At times, I wish I could say that my illness has made me stronger. That instead of seeing me as broken or unable they should see me as incredibly able and resilient. Instead, I usually just smile and nod. I pick my battles. However, this battle gets exhausting.

The worst thing I have heard, and what I have heard most often, is that it must be all in my head. I must be in need of major attention. Yes, I want to be sick. I wanted to lose most my friends because keeping plans is hard. I want to frustrate my loved ones. I want to be sick while trying to work. I want to be stuck inside a body that hurts. I want to not eat acidic foods or dairy. I want to have a hard time eating out. I want to feel exhausted all the time. I want to struggle with rebounding from travel. I want to fake being ill so I can avoid serious exercise. Think again.

I know I am not alone in the struggle to explain to others that you name it and I’ve tried it. The biggest question is: how do you tell someone without being offensive that you don’t want their unsolicited advice? How do you explain that you appreciate the kindness of their intent, but after hearing the same thing five other times in the same day, I am frustrated and sick of hearing it? If there was a way to cure this, a way to make me able and better, don’t you think I would be doing it? I have so many dear friends who do this with the best intentions. Which is why I would never want to be offensive or unappreciative. Yet, I am not looking for advice. I am looking to surround myself with those who respect me as a person and don’t mind my rough days. Bottom line: compassion and patience.

So you tell me, how do you usually handle these moments? If you are someone who gives advice, then what would be easiest for you to hear when I am trying to tell you that I appreciate the sentiment, but I am not searching for advice? When have you had moments of frustration because you aren’t being truly heard?

<3 Chronic Pain Warrior 

Is It Invisible?

When Mums (my 100lb Great Pyrenees St. Bernard puppy) starting acting up we had to figure out why. Being sick has led Mumford to be possessive versus protective. So, this means he needs brand new all day training. During the past few weeks, it had been a very emotional time. Yet again in my life I had multiple people tell me that I may be too sick to care for him properly. Two days ago, my new dog trainer asked me “Are you too sick to do this?” How many times have I been asked that question?

Something kicks in, this fire inside me that refuses to lose more that I love. I took a deep breath, felt my level 9.5 pain (rating based on how someone without my illness would respond, on my pain scale I would say a 5), and stood up. Ready, ready to fight like a warrior. I’m sure it wouldn’t surprise you that this is something I choose to do every morning, but some things are harder than others.

Now I’m going to ask you to consider some things.

  

Many people would be surprised that this is the same person by just looking at the photos. In the first photo I am 23 years old, 108 pounds, and about to attend my best friend’s bachelorette party. What do you think when you look at this picture? I am usually told that this was my “prime."  That I am sexy, gorgeous, skinny, desirable, and confident.

In the second photo I am 25 years old, 190 pounds, and celebrating my best friend being in town. What do you think when you view this photo? For this photo I usually get overweight but pretty in my curves, thicker, needs more exercise, but happy (fat shaming NEVER helps anyone. “Fat” doesn’t always mean unhealthy.). 

Let’s dig a little deeper. Look again at the picture of me blonde with what I’m about to say next on your mind. I was unable to care for my sick body, and I was trying to work full time. I was only able to keep down one tiny meal a day. I was sick ALL the time. In this photo I have tonsillitis and a kidney infection. I had also begun a new medication to help. So I was dizzy, nauseous or vomiting, exhausted, sleep deprived, and cognitively I was messing words up and stuttering when I spoke. I had chills from the amount of pain that radiating through me. Pain level 8 on my scale.  I was also struggling with depression due to my illness. Right before the photo, I had to evaluate the amount of blood I was losing before partaking in festivities.

Now let’s look at the red head photo. Here I have gained incredible amount of weight very quickly that my body won’t let go because my body is attacking itself. My body is attacking my bladder, uterus, ovaries, vulva, intestines, nerves, and esophagus. The attack is so swift and strong that my body begins to hold onto every calorie it can take to fight a war. Here I’m on a cocktail of new medications, everything I eat turns to fire in my body, I am still eating one meal a day, I’m exhausted, again struggling with depression from being sick, and inflammation has taken over most of my body (I’m just on fire. Even if you touched my arm I would internally jump.). Pain level 9 on my scale.

Most people assume that when I was thin I was happier and healthier. That is an assumption a great deal of society believes. I can honestly share that I felt absolutely awful in both of these photos. Of course the goal is to get to a medium size and find ultimate healthiness, but as the doctors assure me this could take years of struggle. I will never be cured so balancing my outside looks will always be a problem. Oh let me tell you how much this drives some in my life, dates, and society, crazy!

Having an invisible illness can be helpful and hurtful in daily life. I am able to mask my disease when I can, and want to. This means that I can look pain free if I don’t want people to know. However, this one positive comes with problems to juggle. When I hide my illness I cannot get the support I need, people have higher expectations of me that I cannot always fulfill, and I can be treated as just another dumb blonde.

When I do come out about my disability everything changes. There is greater disbelief, huge amounts of stigma, people treat you very differently when they know you’re sick, people think they should share “cures” for my inability to be normal, etc. However, on the flip side I am able to get the accommodations I need, support when I need it, and more alignment with my core self. People tend to loop me into the category of “poor sick girl who will never be able to use her intelligence or gifts.” I find it so fascinating and heartbreaking the way we judge one another based on looks and success.

On top of dealing with what others’ think, most of us are juggling what we think of ourselves. Who I am inside grows and changes with lessons learned. However, who I am on the inside does not change regardless to what I look like on the outside. Even though people judge me differently, I am still the same woman with the same brain and heart. At times I scream, and even now feel the rush of frustration going through my veins, because I feel trapped. I feel trapped in a body that cannot express what I want it to or do what I need it to. I feel like a healthy woman stuck in a 90 year old body.

Why do we as humans judge one another based on how we look on the outside? What if we start to get to know the true person they are inside? What if we began to respect people as they are within their shell? Our bodies are a representation of us yes, but they are just the shell we decorate. We all deserve to be treated with kindness, respect, compassion, and acceptance. When someone is vulnerable in this world we should be taking him or her in not shoving them into categories and making rules.

When have you been judged on your body? If you have an invisible illness when do you choose to hide it? When do you choose to share it? What do you wish you could say to those facing this struggle?

I give everyone a challenge of thinking before they judge.  A challenge to give out kindness and compassion.

As always, thank you for reading!

<3 Chronic Pain Warrior

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