Defending Invisible Illness

"You don't have anything wrong with you. You have no issue walking." he said with dismissing disdain for what I had shared as I tried to empathize with him.

My word alone that I have a chronic illness wasn't enough for another person with chronic illness too.

Mine just happens to be invisible.

Sadly, I've become accustomed to others looking at me and automatically judging that I couldn't possibly have health problems due to my appearance and age. It is highly frustrating and bothersome at times but for the most part I've learned to shrug it off. After all, I do have an invisible illness. Others aren't able to visually see that my body isn't able to absorb nutrients fast enough to keep up with my Short Bowel Syndrome (SBS) and that I frequently experience chronic nausea and pain. Or that my activities are limited and I have to carefully plan out my activities around restroom access. On occasion others may witness my difficulty walking when I'm experiencing a severe flare up of my SBS when I'm forced to use the restroom every 5-10 minutes for hours and my body becomes so sore I can barely walk even if I wanted to as movement agitates my short bowel particularly during a flare up. Nor are others aware of my past medical treatment for colon cancer and the complications experienced or the future risk of additional cancers and complications.

It's not right for others to make assumptions and judgements about what a person may be
experiencing based solely on looking at that person. But it is understandable that others wouldn't be aware without asking. It's harder to understand though when the person judging another also has their own chronic illness. Those of with chronic illness tend to bond with others with chronic illness as we find understanding, comfort, and safety amongst each other. So we don't expect someone in a similar situation to judge us by looking at us in the same way as others without chronic illness frequently do.

There's no question that continued education and awareness is necessary outside of the chronic illness community. Occasionally we're reminded that continued education and awareness is also required within the chronic illness community.

When sharing with others we need to weigh our timing and our content. With many things in life, there's a right time and a wrong time for anything and this includes our education efforts. If it's the wrong time, our "audience" may not be as receptive as other times. Assessing the moment and the surrounding circumstances can help us gauge the right timing. Determining what and how we say will vary from situation to situation but is nonetheless important. We don't want to present ourselves as victims or as comparing ourselves to another's experiences.

We want to be understood in our own right while respecting and gaining common ground with others. During the in between time of progression, it's important for our own peace of mind and well-being to remember that others are not as open to understanding another's chronic illness and becoming angry and hurt in response is not helpful. Instead, let us try not to take this personally but rather offer the understanding that we are not receiving from these individuals. And in the meantime may we enjoy and encourage one another in our trials.

Iron Infusion

I was directed to a door to the treatment area. I quickly surveyed the large room as I slowly, nervously walked to the nurse's station to check in. I was by myself this time. I was determined to chip away at my PTSD. I must have picked a good time, there was hardly anyone there. Large recliners lined the walls, framing the room with sectioning lines created by more recliners. Each recliner had its own IV pole. "This your first time here?" a burly man asked. "Yes" I sheepishly answered. I was directed to sit anywhere of my choosing. Surveying the room again, I picked the recliner tucked away in the corner. I'll feel safer there, I reasoned. Positioned in front of a flat screen TV and a wall of snacks, protein drinks, coffee and water machines. I was impressed with the effort to maximize comfort. I waited for a nurse to start my IV, all the while trying to remain composed. I had never attended a medical procedure on my own before. While I waited, a few cancer patients began arriving, easily picking out their chairs, visiting with others. This was routine for them.

I sat quietly observing, scared and pondering.

I was having my first IV Iron Infusion with a second infusion scheduled a week away. With tablets I managed to increase my hemoglobin from 9.2 to 11.4 with an iron saturation of only 3%. I've been lucky to have my hemoglobin reach 12 on occasion. I decided I would undergo the trauma of IVs to see what a high hemoglobin felt like. An experience I haven't had in over 20 years.

It took 3 attempts for an IV to be started. Not necessarily uncommon for me. My emotions were being rubbed raw. Years of medical trauma was rushing back over me and without any notice the tears began streaming from my tightly shut eyes. I didn't even realize I was crying until I felt the warmth of my tears trickling down my cheeks. My psyche couldn't take anymore evidently. I began to doubt myself and my ability to attend medical procedures alone. Maybe this wasn't such a great idea to come alone. I can't take this. I don't know if I can withstand 4 sticks....no 6. I've withstood 6 before....6 and I'm done with this.

3rd stick was the charm. I was warned not to move due to the positional nature of the 3rd IV. Like I'm moving with an IV in anyway, ha. I sat perfectly still as the reddish brown iron began to pump into my arm. My attention brought back to the cancer patients who primarily make up the composition of patients there. I scolded myself for letting my PTSD triggers get the best of me. There I sat with cancer patients who endure IVs and chemotherapy on a regular basis just to attempt to survive what is attacking their bodies and there I sat crying over pediatric needle sized IVs.

15 minutes or so passed and I began to feel overly tired as the iron bag drained itself. This was followed by saline pumping in me to be observed for allergic reaction. This, this is why I thought I could attend on my own. I didn't want to burden anyone with a 15 minute procedure. Granted it took 45 minutes to start the procedure and have a working IV. In my drowsy state my confidence returned. I can do this on my own again next week. I'll try not to let myself cry. I'm stronger than my PTSD, I tell myself.

Bruised, sore, and tired I left to return to work. A coworker explained to me it's normal to feel tired after receiving iron but I should notice an increase in my energy within a day or two. So far I haven't noticed a difference in my energy but remain hopeful as I prepare for my second iron infusion just a few days away.

Working While Chronically Ill

Balancing employment and health is a challenging experience. The demands of a job and the toll of stress and exertion upon a chronically ill body is a balancing act not to be taken lightly. With proper care, the right circumstances, and a bit of luck it can be achieved.

Although my pediatric doctor adamantly believed I would qualify for disability due to my health, I was determined to make my own career. I've been fortunate to be able to maintain full time employment for the last 7 years although there are times that I seriously worry about my ability to continue working. I've learned a lot about the importance of self-care during my career thus far in order to maintain my employment status. My parents instilled upon me a strong work ethic. Combine this dedication to my work with my own hard-headedness and determination and a concoction is created for increased stress and susceptibility to illness.

During my first year of full time employment I experienced first hand the serious threat stress places upon the body. I was over-worked and still learning how to handle working 40+ hours a week while maintaining my own health. My body could only withstand the stress for so long. After about 6 months my health began to suffer and I was experiencing flare ups on an almost daily basis. I was forced to quit my job. I took a month to find another job during which time I recovered my health and have been able to work ever since after learning lessons in self-care.

I still struggle with managing my own self-care as I often accept additional responsibilities for a temporary period or insist upon working just a bit longer even when I am ill. I've learned that these behaviors place extraordinary stress upon myself physically and mentally and often result in a flare up. Therefore maintaining my usual responsibilities and taking time off when necessary are absolutely essential for my well-being.

I've learned to pace myself in my work. There are days when I am able to work 10 hours for the day and other days when I can only manage 4 hours. Instead of pushing myself past my breaking point, I must assess my health and my capability and balance it with my work load not only for the day but for the week before I recover during the weekend. If I need to work longer on a particular day, I've learned to lighten my load and increase my resting period on the day prior to my long work day.

For the past 4 months I have been battling anemia after a trial period without iron or B12 medication. I became so fatigued that I was hardly able to keep my eyes open past 11 am on average. I was experiencing multiple symptoms of iron and B12 deficiency and my daily functioning was greatly impaired. I began to worry about my ability to remain employed as my work performance was suffering and unacceptable in my eyes. I voiced my concerns to my managers and restarted my B12 medication on my own. I had to make a change before my functioning continued to diminish.

My employers are aware of my health issues and work with me to help me balance my health and my work. Working for an understanding employer has been key to my employment sustainability. I'm able to flex my time as needed, utilize intermittent Family Medical Leave of Absence, and continue my efforts to maintain a high work performance while monitoring my health status. My managers work with me on bad days and appreciate my good days. They have faith that I will complete my responsibilities, if not today then within a timely manner.

It takes a combination of effort and measures to maintain the best of health particularly when undergoing additional demands upon your body and health. Finding the correct combination for balance takes time and effort of trial and error. It's important to not compare your level of functioning to another as one person's balance set won't be the same balance set for another. It's vital for our well-being to find our own balance and not push ourselves past that balance in order to thrive with whatever endeavors we're pursuing.

To the Broken Hearted

After disclosing about my own journey through broken heartedness and divorce while dealing with my chronic illness, I heard from several people who had gone through similar trials and it touched my heart.

Regardless of the type of relationship, those of us with a chronic illness are more vulnerable in our relationships than our healthier counterparts. We open ourselves in ways others aren't forced to expose. We are more at risk of losing ourselves as we learn to lean on another to help us through our health struggles and we begin to share our health experiences with another. When the relationship ends, regardless of reason, we are vulnerable as we regain our footing and independence.

This is dedicated to all those who are broken hearted and struggling.

Your soul has been ripped apart as you stare down at the tattered pieces of your heart.

The pain sears your soul leaving you tender, hurt, and confused.

All that you knew changed in an instant and you're left not knowing where to turn or what to do.

You fell into a spiral of lost control frantically grasping to regain your footing.

I've been where you are now. My soul was torched, my heart in pieces, and my spirit broken. I didn't know what to do. My sole remaining purpose was just to survive. My mind couldn't handle more than mere survival. I was trapped, suffocating in my heart break, desperately clawing at my own spiritual grave. Clawing for relief, for light, for healing.

One day my heart mended enough that the suffocation began to lessen bit by bit until one day I burst forth from my grave and found myself soaring with the strength of the eagles. A transformation was taking place but it could only occur after the flames of soul searing pain had burned long and hard until finally extinguishing themselves.

With a new found strength I realized I deserved better. A better state of mind, better days, a better life. I accepted that I deserved happiness and that I could create my own happiness by being true to myself. I learned to accept myself, to do things for myself, and to follow my heart. I was only able to learn these lessons though after I felt my pain and survived it. I was stronger and better for it.

Your days may be long and your nights hard. Your tender heart vulnerable in its current state. But you will not remain here. You will burst forth from the flames that presently surround you. You will survive and be better for your heartache. Let yourself feel the pain so that you may process the pain. Take the time you need for self-healing and self-loving. Make this part of your daily ritual for self-care.

This is your time, your life. No one can steal this grand moment in the making from you without your permission. Savor this moment, relish in your self-worth. You are worth it and so much more. You are not your heartache. You are a survivor with a story to tell and a life to create.

Chronic Fatigue

With a hemoglobin of 9.4 that has likely continued to drop, I'm experiencing chronic fatigue due to iron deficiency anemia. Without enough iron the body is unable to produce enough hemoglobin, which creates red blood cells to carry oxygen throughout the body.

Common symptoms of anemia are

• weakness
• fatigue
• shortness of breath
• difficulty concentrating
• very pale appearance
• grumpy or cranky affect
• headaches

I'm basically running on an empty tank. It doesn't matter how much I sleep or rest, I'm constantly drained of my energy. Moments of rest or sleep are only temporary fixes that quickly lose their power within minutes. I continue to function with the best of my ability and at times it's all I can do to remain awake. My daily life suffers, my job suffers, and I suffer. And yet, unless you've experienced chronic fatigue it's hard to imagine what it is like for that person.

Even when others are aware of anemia or other conditions causing chronic fatigue, it is hard to fathom the depth of fatigue one experiences. I'm regularly asked if I feel any better than I felt the previous day as though a night's rest will make the difference in my hemoglobin or fatigue. I appreciate the thoughtfulness and care of friends and family but unfortunately a good night's sleep isn't going to do the trick with the chronic fatigue caused by my anemia.

Every day is a struggle. I awake from a restful night's sleep only to feel drained again within 30 minutes, begging for a nap. I must force myself to stay through the workday without leaving early just to sleep. If I sit too long I'm overcome with tiredness and my eyelids become heavy, begging to close for a few moments of rest and hopeful sleep. All I think about is how much I want and need to sleep.

My activities are limited and my social life is virtually non-existent. I just don't have the energy for talking, visiting, or participating in social activities especially if they are later in the day. I want to spend time with friends and family but the mere actions of responding to an email or reading a letter taxes my energy. Every task becomes an "I will do it later" action as I attempt to preserve my energy like a precious liquid that is evaporating before my eyes. Even thinking has become a chore as it becomes more and more difficult to think clearly and to focus on what is being said or done at the moment.

When interacting with those of us with chronic fatigue please understand we aren't going to feel better after getting much needed rest. The fatigue stays with us, it's a constant companion until we're able to resolve the underlying cause of the fatigue. And unfortunately, not all of us will be able to resolve the underlying cause. We apologize if it takes us longer to respond or to socialize, we're simply in survival mode at this point. We're pushing forward the best we can with the least amount of interference possible.