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I have disabilities. You may not see them, unless you happen to be present for one of my trigeminal neuralgia attacks, or maybe you notice the way my words sometimes slur, how often I forget the simplest word during a conversation, or watch me limp around because my knee is swollen.
I read so many wonderful pieces written by fellow CIP's (chronic illness patients) and CPP's (chronic pain patients). In these articles, posts on social media, blogs, etc., they try to reach out to the other sufferers reading, but they are also trying to nicely ask folks to stop the attack of "well-intentioned advice."
I want to share a bit of my journey, the journey of chronic illness and pain, because...
I am tired of the "you look fine to me" comments.
I detest the "try this, that, or the other" from people with no medical, pharmaceutical, or psychological training/education.
I can't listen while one more person shames me for not "pushing through," "sucking it up," or accuses me of "being overdramatic," "hysterical," or says it's all in my head.
I refuse to pretend I just want to "share the struggle" and educate others. Some are fully aware, and yet, they choose to make judgements about chronic illnesses and those that have them. I want one of the above types to actually understand what a day in chronic illness world is.
Not aggressively shaking these types I swear. I am just saying you don't know what you are talking about, nor do you comprehend the negative impact you are having on your friend/loved one!
You can't possibly know. Every journey is different, and you have got to stop with the manufactured "cure all" advice (no matter how well intentioned you are). You cannot continue to shame a person for not "cutting gluten, drinking (insert shake/smoothie), or "healing foods."
Where to begin...
My health was an issue all my life. It only began at about three months of age, I had severe asthma and had gotten bronchitis. I spent several weeks in hospital as an infant. The asthma followed me through my elementary school years.
When I was 15 years old—for no apparent reason—I became extremely ill. I began to run a fever around 104.7 degrees Fahrenheit one evening. I was vomiting, with all over body pain, broke out in a rash, and I was delirious. I took medicine, but nothing brought fever down. It climbed to nearly 106 degrees and I began hallucinating. Even when fever broke for a few hours, my mind played tricks on me. I'd see colorful opaque spots on wall, a man who sat at foot of my bed, various blurry bugs on my skin, and I had random auditory hallucinations.
I was brought to doctor who ran cultures, urine tests, blood work, and skin scraping. Nothing showed up. It wasn't the flu, a stomach bug, a cold, etc. My doctor at the time said:
"It seems your white blood cells are infected and/or attacking something we can't find..."
Ummm, excuse me? How can my immune system be "infected?" Is it not supposed to be my line of defense? Is it not a system of "blob soldiers" within my body, fighting off the viral and/or bacterial invaders? I really could not be more confused to this day by his "diagnosis."
I was tested for various STDs (from hepatitis to HIV), diseases that were rare, genetic etc. Nothing was found. It took me about six to seven weeks to even begin to recover. And it was slow going, I missed a little over three months of school, was malnourished due to excessive vomiting, I lost roughly 25 pounds, and was wobbly when I walked.
I tell this story for two reasons:
- It was a very close call, my doctors and parents were extremely concerned that I might have brain damage, organ damage, and/or die. It scared me, and...
- It was the beginning (in my opinion) of my body turning against me. The start of ER trips, body pain that never ended, and various illnesses being diagnosed over the course of 22 years.
Pregnancy, My Body, and Added Illness
I survived the "big sickness of 1995" (my special name for that hell). Life was different: Random pain all over some days, vertigo, anxiety, etc. But overall I lived life as normal as humanly possible.
I dated my future husband at 16. I got pregnant with my first child at 18. Pregnancy was tough, not high risk, but I had HG (Hyperemesis Gravidarum). I vomited day and night seven of the nine months. I had no energy and felt nausea all day and night in between vomiting spells. I had to be hospitalized three times for fluids, anti-nausea medication, and observation.
Otherwise, my biggest complaint was that I had a lot of swelling, pain, insomnia, and aches during my pregnancy. All of which are pretty typical of pregnancy. I gave birth in March of 1999, a healthy baby and mom. However, the leg and back pain I attributed to pregnancy alone never went away.
My back and legs began to be a constant source of pain all day and night. I dealt with it: Pushed through, worked, took my baby to daycare, and so on.
I won't ramble on about every pain or illness. I had two more children and had HG with both. I will share that I have had a few procedures and treatments that were uncommon for my age at the time.
(For example: My gallbladder removed, hysterectomy, three inflations for my sphincter of oddi dysfunction, and a multitude of injections for spine and hip issues. I was tested for numerous autoimmune diseases as well.)
I had some issues that X-ray, MRI, or ultrasound showed clearly—these issues seen on tests could explain some, but not all, of my symptoms.
More tests would come back negative. It was a blow every time. The tests showed nothing, but the symptoms were there. My over-the-top fatigue, all over body pain, stomach pain, vertigo, memory issues, menstrual issues, and so on, could not be attributed to any one of my particular illnesses with clearcut evidence (either images or blood work).
This was all difficult. It took a physical toll on my body. But the hardest part of this journey was the emotional and mental toll it took. It was painful emotionally as well as physically.
Because many of my most debilitating symptoms were not visible to others, I went through the struggle of trying to convince people, including loved ones, that I was in fact in pain and sick. No matter what test results, I knew my body and needed their support and needed them to trust me.
This left a lot of emotional pain. I felt isolated, alone, and somewhat betrayed. That awful feeling of being alone in my fight (for my own quality of life) was too much at times. Stress and hurt would be my constant companions.
It's never fun trying to convince others that you are not just "seeking attention" or "insane." Especially your loved ones who are supposed to support you.
Only after testing showed evidence of some issues was my family convinced. I have moved on from it, but at that time, I felt extremely betrayed and depressed. Maybe there is still some resentment. Justified or not.
That's what I work on still in therapy: How alone I felt during those years.
How I Cope—Sometimes...
I admit it, I have my days where I cycle through self pity and anger. Let's be realistic, I am grateful for what I do have and do not have (fatal illnesses, for instance). However, it's not always easy when you have a trigeminal neuralgia attack that lasts for several hours to jump up and down in gratitude and remind myself I'm still alive or not terminal.
It gets to a point where you feel life will never be about anything more than pain, fatigue, loss of social life, hobbies, etc.
I have begun to ask myself what I can do to improve my own quality of life. I try to adhere to promises I made to myself at the beginning of the year—one being that I would not alienate friends or family.
I talk about my chronic illness, pain, and mental health openly now. I think that's one of the self-care steps I take daily that keeps me sane and gives me hope. I find my social media family to be helpful, as well as my photography, my writing, and my therapy. It ends the cycle of self-loathing and shame that kept me down for years.
I have mental illness, not rare with Fibromyalgia. The research regarding how mental health and Fibromyalgia go together is very interesting. I won't cover it here, but I do suggest one look into it. I find I spend a lot of time reading anything that gives me even a tiny shred of hope regarding my Fibromyalgia and Trigeminal Neuralgia.
And I express my feelings in therapy about my struggle and frustrations I have with my body.
There is no rule that says you cannot discuss how life with illness impacts you with your therapist or psychiatrist. I do. It helps.
My Pet Peeves
The average interactions I have are so supportive and understanding. That I want to make clear. But there are some who still offer unsolicited advice, or judgment regarding aspects of my life.
I want to say the following:
Stop telling others they need to eat/drink this or that. Stop telling others they need to stop medication and get out more. Stop telling people they "don't look sick," "look healthy" to you, or "maybe it's just mental."
It is not easy to stay calm when I see others attacked, I tend to respond more diplomatically when attacked myself. However, when those in the community who have been so kind and helpful to others are attacked, then I can get pretty severe with the offender.
Its because I am tired. I am bored to death with the "backseat doctors," telling CPPs and CIPs how to "cure" themselves, how they should eat/act/react, how they should or shouldn't feel, or outright calling them delusional, mentally ill, and hypochondriacs.
It's completely out of line. So, JUST STOP DOING IT! Please.
Don't make assumptions based on a social media post. Don't advise an individual without being asked for that advice. Don't say they look "just fine" to you. Or any other version of the above. Just don't.
To my fellow CPPs and CIPs,
Stay strong. No matter the adversity. We must keep fighting for answers, treatment options, cures, and doctors who listen. We have to be our own best advocate. It is far too often the case that we fear the judgement of friends, family, and our doctors, so we downplay our feelings, pain, symptoms, etc. It's self-defeating.
We may be a bit wonky, but we are not useless or broken. We are not hypochondriacs, crazy, over-dramatic, or lazy. I am sending gentle hugs to all of you. We can do this.