(Editor’s note: Brenna Kamas-Poole is a writer, blogger, counselor, chronic illness and health advocate and medical research recruiting specialist in Washington State. She recently penned a raw, honest and powerful social media post on coping with chronic illness and chronic medical conditions. Kamas-Poole has kindly allowed BEST to share this post, as many of us in the brain injury community can relate to her experiences and thoughts. K.T.)
I try every day to be as humanly perfect as possible. To be the person that everyone in my life wants and needs me to be. I try everyday to ignore my body, so I can reach this goal. Yet, every damn day I seem to fall short in all arenas.
I have invisible illnesses. I may not look sick, but I am. Appearances can be deceiving. Sometimes dangerously so.
I share this because I am far from the only one dealing with a severe chronic health condition. I know that some of you will relate to this, while others…. Well, maybe it will open your eyes to the struggle of a loved one or friend.
I am ALWAYS in pain. Severe pain. I am always struggling to have enough energy. I fight symptoms daily which make me feel like I have the flu 24 by 7, 365 days a year.
I am frequently plagued by nausea, sore throats, rashes, migraines, loss of vision, sensations in my chest and rib cage that make me feel like I am having a heart attack, asthma attack, panic attack and multiple knives have been stabbed into my rib cage all rolled into one (Costochondritis due to Anklosing Spondylitis). I have severe ligament pain; my joints randomly dislocate (Ehlers Danlos Syndrome Type 4 – connective tissue disease that affects the soft tissues and cardiovascular system). I fall at random and my hips often feel like they are going to implode (self-fusion process due to Spondyliothesis). Unmanaged pain places me at high risk for stroke and/or heart attack. I have eight total Spondylolisthesis slips throughout my cervical and lumbar regions. Not “slipped discs” (which is an incorrect term – however, I do have herniated discs as well). But instead, the vertebrae have slipped and moved forward or backward over the ones below. Some levels are more severe than others. Some are unstable and move about depending on my body position. One slip is so severe the two vertebral bodies used to sit horizontal to one another – verses one on top of the next – prior to my surgeries and full body traction back in 1997. They now sit “kitty-corner” to each other; which causes an awkward alignment, and thus, more neuromuscular and structural pain and ongoing problems. It has also gifted me permanent neuropathy in my legs. As well as severe permanent foot drop (part of my tripping and falling issue), as I cannot move my toes or fully lift my feet. I have massive degeneration throughout my entire skeleton; self-fusing of joints/bones, loss of multiple discs in my back, bone spurring, spinal stenosis, and more. I have secondary conditions which have caused a host of other problems. For example, the EDS 4 has now resulted in MCAS (Mast Cell Activation Syndrome and POTS). The MCAS has resulted in an allergy to the sun and heat. I can’t be exposed to either for too long otherwise I have an allergic reaction which is painful. And a nuisance. I have five auto immune diseases, a connective tissue disease and several spine conditions (Psoriatic Arthritis, Sjogrens, Hashimotos, PCOS are some of the additional illnesses causing havoc on my body) and it’s EXHAUSTING.
But I try. I continue to live. Because I must. Because I have my daughter…. My ray of hope and light. She is my motivation.
I am struggling right now to keep my sanity and some days I feel like I might be to my breaking point both physically and mentally. As my physical self gets worse, I can feel my anxiety growing. My PTSD and panic attacks are only a whisper away some days. I am pushing them away with all my might. I am forcing myself not to end up in the hospital. I MUST keep going. I don’t have a choice. I try to keep a smile on my face. I try to be and look “normal.” Some days I am trying to fool others, but most every day I am working hard to fool myself into believing I am okay. “Ignore the illnesses” – I tell myself. Don’t let them in. They are knocking. DON’T answer.
Again, I am far from the only person you know who is struggling with one or more severe chronic health conditions which impact their everyday lives and ability to function. Their ability to get out of bed, to take a shower, to make breakfast and go to work. To care for their kids, their family. To socialize. Even to obtain therapies and get regenerative sleep. They too, put on a mask and try. They are being chased by a monster every day and trying their damnedest to out run it. This is a 24/7 struggle and fight. It never lets up.
Please know that those of us in these situations do NOT enjoy it. This is the last thing we want. We are holding on by our fingertips with the tightest of grips every single day hoping and praying that we don’t let go.
We don’t want to be a burden or seen as less than, or incapable; we want to live a normal life. We want to be able to take care of our hygiene, take care of the house, take care of our families, play with our kids, go to work and make a living, and maybe even socialize all in the same day, like many others have the privilege of doing.
But we often fall short.
And the first person to beat us up about these shortcomings is ourselves. We feel horrible guilt. It’s not easy to maintain a smile and pleasant conversation when your entire body is pulsating in pain and you feel like you’re going drop from exhaustion. When the pain gets so bad that you start to vomit. When you feel agitated and almost angry, not because of someone else, but because the physical symptoms are that severe.
These illnesses are usually not visible upon first glance. And sometimes, even our loved ones forget as we’ve become so skilled at surviving and hiding our struggles.
If you know someone struggling, give them a hug. Give them a break. Be kind. Even if they are being short with you or “seem” to not care. They do. Tell them how amazing they are. Don’t take it personally when they must cancel a dinner or a phone call (and reschedule five times before actually making it happen). Please don’t give up on us. We absolutely do want (and need) those connections and relationships in our lives.
Being sick is lonely. Being sick is exhausting.
Some might think we are lazy or don’t care. That belief couldn’t be further from the truth. We push ourselves hard every single day. Just imagine what it’s like to be exhausted by one of life’s everyday simple tasks like taking a shower. Something so many takes for granted and don’t think twice about. Something that energizes many people and gets them going each day. Imagine that you need a two- hour nap after a shower because that’s how physically demanding those efforts were on your body. And it’s something you have no control over. Imagine that.
I don’t write or share this for pity. I want to offer a glimpse into the world of chronic illness, as well as offer a hug and empathy to those of you battling every single day. You are not alone.
Some may ask, if my loved one or friend is so sick, why do they say they’re “okay” or “fine” when I ask?
Here’s the answer.
We will tell you we’re “okay” or “fine:”
*Because we’ve trained ourselves to do so.
*Because it’s a much easier answer and conversation than the alternative.
*Because many people don’t care long enough to listen to the real answer.
*Because we don’t want to sound pitiful and dramatic.
*Because we’re tired of thinking about it and talking about it.
*Because explaining is exhausting.
*Because we’re tired of explaining / defending ourselves and how we feel and why.
*Because the resulting conversation is filled with easy-peasy “suggestions” of how to fix the condition or conditions.
*Because we don’t enjoy being condescended to as much as the next guy.
*Because we don’t want others thinking we’re not capable of something.
*Because there’s usually not an easy fix despite what you heard that your aunt’s cousins neighbor did to fix a similar issue
*Because we don’t want to be a burden.
*Because it becomes an awkward conversation
*Because, in most cases, people don’t really want to hear the real answer anyway.
Brenna Kamas-Poole is a writer, blogger, counselor, chronic illness and health advocate and medical research recruiting specialist in Washington State. She shares a beautiful young daughter with her husband.