Our first warrior spotlight is the HEM Foundation's newest board member, Devanne Barr. She is a mother, wife, warrior, and advocate!
Hemoglobin genotype: Sickle-beta thalassemia zero (SBO, similar in severity as hemoglobin SS)
Share your personal journey with sickle cell disease and how it has impacted your life.
Obviously, this disease has been physically taxing from the excruciating pain episodes to the milder but constant chronic pain to each and every needle stick and failed iv. I've experienced most of the known complications (gallbladder removal, auto splenectomy, MI, TIA, numerous ACS, necrosis, Kidney stones, Sickle Retinopathy, Iron overload) to name a few. This disease is excessively time consuming from the endless doctor and specialist appointments to imaging test and hours spent in waiting rooms, labs, outpatient centers and inpatient admissions. Yet the most challenging and probably most overlooked element has been the mental burden. Handling the wide array of feelings and emotions that accompany a debilitating chronic illness like this one is one of the hardest aspects of Sickle Cell Disease. The endless list of emotions is a rollercoaster filled with few highs and many lows.
On a regular basis here are a few of the major emotions I've faced and am facing.
Confusion: The confusion and initial turmoil of being a child and trying to understand why my body has the ability to make me suffer at such an intense level.
Annoyance: The annoyance I've felt at the task of trying to mentally cope with all the physical restrictions that were placed on me by my parents in an attempt to keep me healthy and well.
Envy: The envy I feel getting to watch my peers live their lives without restrictions.
Loneliness: The loneliness and isolation I experience even with the best support team present because the pain and suffering is always mine and mine alone to bear.
Aggravation: The feeling of aggravation, when your family/friends mean well, but don't stop asking if you're ok, or when last you drank, or if you need a sweater.
Nervousness: The nerves I've felt from missing school and fearing my friends would forget about me or exclude me whenever I did return. Nervousness from not truly understanding certain coursework because I was absent when the material was taught.
Fear: Fear of the unknown of what certain medical exams would be like, fear of organ complications, fear of whether or not they will find a vein, fear of the pain, and fear of mortality.
Sadness: The sadness and disappointment I've felt and that I've seen on my family members/friends face when a crisis unexpectedly arrives and interrupts scheduled plans or causes me to have to cancel big plans. The sadness that comes from missing out on major events that I was really looking forward to.
Uneasiness: The feeling of uneasiness that comes when I am not quite ready to share my illness with others but not feeling like my true self if they are not aware of my complicated journey.
Anxiety: The PTSD and anxiety I feel when returning to places that always induced a severe crisis like the beach or pool. The nerve wracking feeling that lives in my gut because of the unpredictable nature of this illness.
Regret: The heavy feeling of regret I feel when I know exactly what I did to trigger a crisis.
Hopelessness: The hopelessness I feel when I can't see the end of a crisis in sight.
Calmness: The feeling of calmness that finally comes when I get my first true relief of pain in a level 10 crisis.
Worry: The worry and concern I have felt, after a major hospitalization knowing the recovery road can be just as long and daunting as the crisis itself.
Guiltiness: The feeling of guilt I go through because of how often I throw a wrench in my caregivers lives.
Thankfulness: The feeling of gratitude, and feeling so thankful for a caring, loving, attentive support team, and a care team who does their best to help achieve a better quality of life for me.
Worthlessness: The feeling of worthlessness I've experienced when I am physically unable to do my job and play my role as an employee, a wife and most of all a Mom.
Pensiveness: That feeling I get from thinking hard about how much I want to cry but feeling like tears are a sign of weakness so holding them back because I know that my mental strength is needed to make it through.
Embarrassed: The embarrassment I've felt having to cope with severe pain in front of others- family friends or even strangers while writhing on a stretcher in an ER hallway.
Excitement: The excitement I've felt at achieving some of my goals in life that were so much harder to achieve because of my illness. The excitement that comes around when another birthday approaches and I realized I've survived another year.
Shame: The shame I have experienced from not being able to take care of some of my own basic needs, like needing a bed pan because you can't walk to the bathroom or having someone brush your teeth because your arms are in too much pain.
Indecisiveness: The decision making battle that takes place in my mind while I try to determine whether trading symptoms for side effects of severe nausea, vomiting, itching and delirium are worth it. Or when trying to decide if mistreatment from the hospital but relief of pain is better than the comfort of my own home and bed where I can sleep without an aid turning on a bright light at 2am to get my vitals.
Dismay: The dismay and sorrow I feel when I realize that some of my closest family and friends simply do not understand what life is like for me.
Agony: The agony I've felt while in ICU fighting acute chest syndrome and hoping my lungs will recover.
Doubt: The doubt that I feel wondering whether my body can handle back to back strenuous activity or a stressful situation.
Joy: The joy you feel when you hear the word discharge. The joy you experience from being well and able to do the things in life that truly make you happy.
What this rollercoaster of emotions has caused me to try to maintain is:
Patience: Patience to not lose my cool when in pain and medical personnel doesn’t give me the proper care and treatment I need and deserve.
Optimism: Forcing positivity through the darkest of days because I know a negative outlook and stress of it all is a trigger in itself!
Self Awareness: The realization that my silence and not speaking my truth and always defaulting to say I’m fine is more daunting for me than telling people exactly what I am feeling.
Courage: The mental determination and strength it takes to not let this disease define me, and to overcome each and every obstacle and challenge it throws my way.
Resilience: Fighting the desire to want to quit and be free of suffering because I know that despite each storm that comes a rainbow always follows and that I have so much to live for because I am someone’s loved daughter, wife, sister, friend, and cousin but most importantly I am someone’s mommy!
What are some common misconceptions about sickle cell disease that you would like to debunk?
That we can look well, and appear to be functioning fairly well but still be suffering internally, both mentally and physically. I want people to realize that the ability to wear a smile on my face does not correlate with the level of my pain or exhaustion. I have taught myself how to smile through it all.
I wish people understood that even the better pain free days are heavy because we are constantly having to live life thinking about the consequences of every single little trivial decision. For example, did I allow that comment from my boss to emotionally stress me out too much? Or whether I should have worn pants into the grocery store instead of shorts because now my legs are cold and this may trigger sickling. Did I drink enough for the amount of sun exposure I am getting? The elements of this disease may be invisible to the naked eye but it doesn’t discount that we wake up everyday and wear all of its challenges.
How do you manage the symptoms and challenges associated with SCD in your daily life?
I try to stay in tune with my body, and listen to it. I try my best to eat well and do the things I know my body will appreciate like staying on top of my hydration. I try to meditate and find my center when things get challenging. I use distracting techniques as simple as reading or watching a good show to deter from focusing on pain. I keep my heating pad within reach at all times! I do my best to adhere to my prescription medicine regime and keep up with my appointments and labs. I try my best to ignore negativity, and avoid people or situations that emit bad vibes and to always attempt to keep stress at bay. I pray religiously and keep the faith that I am here for a reason and God will always pull me through. I remind myself that despite it all, that every day that I wake up I need to be thankful because life is a blessing!
Describe a particularly difficult moment you've faced because of SCD and how you overcame it.
My most difficult moments have definitely been getting sick and hospitalized away from home, in different states and in foreign countries. I think my faith alone has allowed me to overcome those moments.
Share a positive experience or silver lining that have come from your journey with SCD.
Well, when the fear of death has constantly been looming over you like a dark cloud from an early age, you learn very quickly the value of what truly matters in this life. I think I gained an appreciation for the simple things in life that are actually some major blessings so much earlier than my peers. I believe this disease has given me depth of character. It’s given me my strong intuition and my ability to persevere. It has given me the ability to easily solve what others would see as problems. When your cup is so full from living with a chronic illness you are able to let a lot of trivial petty issues roll right off your back. It has given me the ability to always see the good and the light even when I feel trapped in darkness. It has given me my warrior mentality and mental armor that allows me to go to battle each and every day.
Lastly, what is one important lesson or insight that living with sickle cell disease has taught you?
When you have so many days you spend in a bed unable to thrive you truly learn to take the good days and LIVE LIFE TO THE FULLEST and to cherish the people that show up for you consistently.
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