The following description is from the homepage of Immune Deficiency Foundation, “In medical school, many doctors learn the saying, “when you hear hoof beats, think horses, not zebras” and are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones. However, sometimes physicians need to look for a zebra. People with PI (Primary Immunodeficiency) are the zebras of the medical world.” Apparently, I’m a Zebra.
I have a very rare medical condition called Common Variable Immune Deficiency diagnosed in the mid-1990’s. The treatment is a monthly subcutaneous infusion called IVIG. This treatment regimen has been part of my life for almost 30 years, so it is not a big deal. With advances in technology, the past 14 years I have been able to have this treatment at home which means not going to hospitals or clinics to have the IV drip.
The Immune Deficiency Foundation also sends me a magazine monthly listing various ways patients have coped with the CVID diagnosis and has a website if I wanted to talk to someone about coping with the disorder. My first reaction when I get the magazine… I throw it in the trash thinking “I’m fine.”
My thinking is the following…
- what I have been doing has worked
- I don’t need/really want to read about other’s experiences.
- I do not want to be reminded of how bad things could have gotten.
- I have enough I am dealing with already.
A similar scenario just happened to my dad. After five years of hemodialysis which was at a renal care clinic three times week, he is now doing Peritoneal Dialysis which is at home. However, he does this every night compared to three times a week.
We both finished the three-week training, and he had his first successful PD last night with no errors! My dad said something that I could relate to all too well. Since the machine is in his room, he is always reminded that he must live with end stage renal disease. All of this is to say I do not like being reminded of a reality I am innately familiar with and neither does my dad, so I am known I am not alone in thinking this way.
The very last part of the training is a chapter about coping with the reality of having this disease. A diagnosis of end stage renal disease is equivalent to being diagnosed with cancer. Why are regular reminders of a something a person is all too familiar with brushed off so easily?
Recently I joined a support group for people who have CVID on Facebook. I will get a notification of new posts and see the hundreds of past posts and conversations. A lot are understandable negative, and some are recently diagnosed and are asking advice for their treatments/insurance coverage/side effects/etc. What were valid comments and questions, rarely was there any kind of encouragement.
From my point of view, having a chronic illness is manageable and becomes second nature. A normal life can be lived. After reading through these comments, it was if having the diagnosis of CVID is a death sentence, which it is not.
Reading through these comments, the diagnosis had become their identity which I could relate to as that was the case for me when I was figuring out how to manage the diagnosis. Through support from family, friends, and an excellent network of doctors I did not stay there and learned to live a “normal” life. I learned to see the forest through the trees. Again, this is my experience.
What does it look like to move past something all-encompassing that could be the loss of a job, death of a loved one, property lost through a natural disaster? Two things. Realize it will take time and don’t go through the journey by yourself. There will be grief on some level. One takeaway I took away from my dad’s PD training is that a person on dialysis is grieving their previous healthy self.
Back to the zebra analogy. Getting to the diagnosis of CVID is after numerous blood tests, biopsies, and sometimes surgical procedures. Essentially many other diagnoses must be ruled out first. The onset of my medical journey was last in 1990 and I was not officially diagnosed with CVID until 1995. Even though what I have is rare I have found many supports through the years, so I have never dealt with the diagnosis by myself.
If you are looking for a therapist near you then a Google search is a great way of finding one. I happen to be a therapist in Charlotte, NC but am licensed to counsel anyone in the state of North Carolina. In Google, try looking for “psychotherapist,” “find therapist,” “therapy near me,” or even “counseling charlotte, nc.” If you feel like you have hit a wall you are not able to get past, call me at (704) 458-6298 or email me at jeffhelms@clearerthoughtspllc.com.
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